tag:theconversation.com,2011:/au/topics/quality-of-life-40980/articlesQuality of life – The Conversation2024-03-11T12:25:16Ztag:theconversation.com,2011:article/2237072024-03-11T12:25:16Z2024-03-11T12:25:16ZShould people suffering from mental illness be eligible for medically assisted death? Canada plans to legalize that in 2027 – a philosopher explains the core questions<figure><img src="https://images.theconversation.com/files/580759/original/file-20240308-16-9f5ja6.jpg?ixlib=rb-1.1.0&rect=15%2C0%2C2101%2C1409&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">In advocates' eyes, expanding access to a medically assisted death helps people protect their autonomy at a crucial time.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/close-up-of-a-young-womans-hand-holding-the-hand-of-royalty-free-image/1408213220?phrase=hands+death+love+bed&adppopup=true">Eva HM/iStock via Getty Images Plus</a></span></figcaption></figure><p>Imagine that you have lived with an illness for years. The suffering this illness has caused is devastating – so much that you wish to die. You no longer feel like the person you were before. You have been to see specialists, have tried the best treatments, but nothing works.</p>
<p>This is many people’s reality, and not only because of physical disorders and disease. Chronic mental illness can be just as crushing. Starting in March 2024, Canada planned to make medical assistance in death, or MAID, available to people with mental illness – <a href="https://www.justice.gc.ca/eng/cj-jp/ad-am/bk-di.html">expanding a program</a> already available to patients with terminal or chronic physical illness. In 2022, more than 13,000 people in Canada died with medical assistance, according to <a href="https://www.canada.ca/content/dam/hc-sc/documents/services/medical-assistance-dying/annual-report-2022/annual-report-2022.pdf">a government report</a>.</p>
<p>In February, however, the government announced <a href="https://www.canada.ca/en/health-canada/news/2024/02/the-government-of-canada-introduces-legislation-to-delay-medical-assistance-in-dying-expansion-by-3-years.html">a three-year delay</a> for the controversial program, saying the health care system needs more time to prepare.</p>
<p>When it is enacted in March 2027, this new provision will make Canada one of the few countries that allow MAID for mental illness. These include <a href="https://doi.org/10.3389/fpsyt.2022.895387">the Netherlands</a> <a href="https://pegasos-association.com/requirements/">and Switzerland</a>. Only a minority of U.S. states, such as Maine and Oregon, <a href="https://deathwithdignity.org/states/">allow any kind of MAID</a>, though many others have debated it – and none allow it for mental illness.</p>
<p>Critics say there are inadequate safeguards and <a href="https://www.cbc.ca/news/opinion/opinion-assisted-dying-maid-legislation-mental-health-1.5452676">a dearth of health care coverage</a> for psychiatric and psychological issues, which could prompt people to view MAID as their only alternative. They also point to the difficulty of predicting whether or not someone’s mental illness will eventually get better.</p>
<p>MAID activists believe that access to this choice for patients with mental illness is morally required. But even people <a href="https://www.cbc.ca/news/politics/medical-assistance-in-dying-mental-illness-delay-1.7098313">not opposed to Canada’s new provision</a> are concerned about whether the system is ready.</p>
<p>As <a href="https://www.gonzaga.edu/college-of-arts-sciences/faculty-listing/detail/kulp">a philosopher</a> who specializes in <a href="https://ecommons.luc.edu/luc_diss/1277/">end of life ethics</a> and physician-assisted death, I research a distinction that is at the heart of this debate. There is a subtle but crucial difference between being acutely suicidal – an experience that may pass – and, after long consideration, desiring death in the face of suffering. </p>
<h2>My body, my decision?</h2>
<p>Plenty of people oppose MAID – often called physician-assisted death – under any circumstances, including terminal physical illness. Some believe it <a href="https://www.cccb.ca/media-release/statement-by-the-canadian-conference-of-catholic-bishops-on-the-non-permissibility-of-euthanasia-and-assisted-suicide-within-canadian-health-organizations-with-a-catholic-identity/">violates the sanctity of human life</a>. </p>
<p>Others have qualms about asking doctors, who are normally concerned about the preservation of human life, <a href="https://www.thepublicdiscourse.com/2019/11/57243/">to participate in ending it</a>. In other words, they emphasize nonmaleficence, the obligation to do no harm – <a href="https://doi.org/10.1159/000509119">one of the core tenets of medical ethics</a>.</p>
<p>Many proponents, on the other hand, base their arguments on two other core tenets: beneficence – the obligation to benefit the patient – and autonomy. <a href="https://doi.org/10.1093/acprof:oso/9780195140279.003.0002">Autonomy arguments</a> usually assume that a government is only justified in restricting citizens’ liberty if exercising that liberty would cause harm to other people.</p>
<p>Advocates of physician-assisted death emphasize that ending one’s own life does not harm other people, suggesting that the government has no business curtailing the patient’s choices. Legalization ensures that citizens can make their own decisions about one of the most personal and value-laden times of life.</p>
<p>In medical ethicists’ view, in order for a person to be considered autonomous, they must be able to act intentionally and with an understanding of the potential consequences of their actions. Additionally, an autonomous person is reasonably free from undue influence – such as family members pressuring them or financial considerations that restrict their choices. </p>
<p>When it comes to physical illness, ethicists who <a href="https://philpapers.org/rec/RIDMAI-2">argue that physician-assisted death is morally permissible</a> view patients as free actors exercising their autonomy if they meet several criteria: they are terminally and chronically ill, have worked with medical professionals over time and have established an unchanging desire to end their suffering.</p>
<h2>Thorny issues</h2>
<p>Experiences of mental illness, however, raise serious questions about patients’ autonomy.</p>
<p>Mental illnesses often limit a person’s ability to govern their own lives free from the effects of their illness. For instance, a patient with <a href="https://theconversation.com/mariah-carey-says-she-has-bipolar-disorder-a-psychiatrist-explains-what-that-is-94893">bipolar I disorder</a> is not fully autonomous during the middle of a manic episode. Were it not for their disease, they would be less likely to engage in the types of behaviors that characterize a manic episode, such as reckless spending or risky sexual encounters.</p>
<p>Yet this is not true for all mental illnesses, or at all times. A person with well-treated bipolar 1 disorder will have periods in which <a href="https://www.samhsa.gov/mental-health/bipolar">their symptoms are under control</a>. In fact, it is in these periods of lucidity when <a href="https://www.nytimes.com/2023/12/27/world/canada/medical-assisted-death-mental-illness.html">some bipolar patients</a> decide their own death would be preferable to the suffering they endure. </p>
<p>Moreover, proponents of <a href="https://www.nytimes.com/2023/04/21/opinion/medical-assistance-dying-mental-illness-maid.html">extending physician-assisted death to mental illness</a> believe that the approval process can protect people who request it when acutely suicidal or who have not yet received adequate treatment.</p>
<p>In Canada’s proposed system, a mentally ill person requesting MAID must have been informed of all reasonable treatment options. They must also demonstrate a sustained desire to receive MAID, including waiting for 90 days after their application. Finally, the patient must have two doctors certify that their suffering is “<a href="https://www.justice.gc.ca/eng/rp-pr/other-autre/ad-am/p1.html">grievous and irremediable</a>” in any way the patient finds acceptable.</p>
<p>One key issue in preparing Canada’s health care system is whether providers have received enough training <a href="https://www.canada.ca/en/health-canada/services/publications/health-system-services/advice-profession-medical-assistance-dying.html#a7">to differentiate someone who is acutely suicidal</a> from someone who is in a frame of mind to make this decision thoughtfully. If someone is experiencing an acute desire to die that may be a symptom of their illness, most ethicists would find MAID morally impermissible. If, however, a mentally ill person <a href="https://www.reuters.com/world/americas/shes-47-anorexic-wants-help-dying-canada-will-soon-allow-it-2023-07-15/">has spent years suffering</a>, has exhausted reasonable treatment and has maintained a desire to die for some time, some ethicists believe MAID is appropriate.</p><img src="https://counter.theconversation.com/content/223707/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Maria Kulp does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Assessing a patient’s autonomy can be more difficult when mental illness is the main source of their suffering.Maria Kulp, Associate Professor of Philosophy, Gonzaga UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2183342024-01-17T21:08:01Z2024-01-17T21:08:01ZAnnual rankings don’t always tell us what it’s really like to live in a city<figure><img src="https://images.theconversation.com/files/568293/original/file-20240108-27-dzn9ni.jpg?ixlib=rb-1.1.0&rect=12%2C0%2C2751%2C1553&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Rankings often focus on economic and developmental factors that overlook sustainability. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Every year various indices are released which rank the <a href="https://www.theglobeandmail.com/investing/article-most-livable-cities-canada-2023/">livability</a>, <a href="https://www.arcadis.com/en/knowledge-hub/perspectives/global/sustainable-cities-index">sustainability</a>, <a href="https://innovation-cities.com/worlds-most-innovative-cities-2022-2023-city-rankings/26453/">innovation</a> and general quality of life in cities around the world. Canada’s major cities like Vancouver, Calgary and Toronto <a href="https://www.cicnews.com/2023/12/3-canadian-cities-ranked-among-the-most-liveable-in-the-world-1241721.html">frequently</a> top <a href="https://www.cicnews.com/2023/12/3-canadian-cities-ranked-among-the-most-liveable-in-the-world-1241721.html">these lists</a>, despite being some of the <a href="https://www.vancouverisawesome.com/local-news/vancouver-ranks-3rd-most-expensive-city-in-north-america-5490661">most costly</a> places to live. </p>
<p><em>Maclean’s</em> magazine’s ranking of “<a href="https://macleans.ca/canadas-best-communities-in-2021-full-ranking/">Canada’s best communities</a>” evaluated 415 communities according to various indicators, including economic prosperity, housing affordability, taxation, sustainable mobility, public safety as well as access to health services and cultural and leisure activities.</p>
<p>Quality of life indicators and indices can be useful for comparing cities or when deciding where to live. However, if cities base their policymaking on such metrics, it could lead to unsustainable development.</p>
<h2>Differences between sustainability and quality of life</h2>
<p>A <a href="https://doi.org/10.1016/j.ecolind.2020.106879">recent study</a> highlighted the commonly used environmental and socio-economic criteria, using indicators such as green spaces, recycling, the use of public transport, unemployment and crime rates.</p>
<p>A recent <a href="https://www.espon.eu/programme/projects/espon-2020/applied-research/quality-of-life">international review</a> by the European Observation Network for Territorial Development and Cohesion evaluated cities based on criteria like employment, housing, access to health care and safety. Indicators included, among others, the cost of living, household income and the quality of public services.</p>
<p>Many of the indicators in these rankings are used to measure both the sustainability and the quality of life in a city. This convergence can be explained by the <a href="https://www.iisd.org/articles/deep-dive/pathways-sustainable-cities">common basis of these two concepts</a>: they are essentially about how a city satisfies the essential needs of its residents, such as housing, transport, health, education and leisure.</p>
<p>The ability to meet these needs is closely linked to economic factors, which play a key role in assessing both the sustainability and quality of life of cities. These factors include income, wealth and cost of living.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/568733/original/file-20240110-21-uisy1i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="An elderly couple walking in a park with a bicycle" src="https://images.theconversation.com/files/568733/original/file-20240110-21-uisy1i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/568733/original/file-20240110-21-uisy1i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=337&fit=crop&dpr=1 600w, https://images.theconversation.com/files/568733/original/file-20240110-21-uisy1i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=337&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/568733/original/file-20240110-21-uisy1i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=337&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/568733/original/file-20240110-21-uisy1i.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/568733/original/file-20240110-21-uisy1i.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/568733/original/file-20240110-21-uisy1i.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Development aimed at improving city life can sometimes come at the expense of sustainability.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
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</figure>
<p>Despite these commonalities, they also present <a href="https://researcharchive.lincoln.ac.nz/server/api/core/bitstreams/81da68e3-f4cb-4b2c-a67b-506d41bd84e4/content">contradictions</a>. For example, initiatives aimed at improving city life, such as infrastructure expansion, can sometimes come at the expense of the environment, which goes against the principles of sustainable development.</p>
<p>Furthermore, an emphasis on sustainability does not necessarily guarantee improved living conditions. Indeed, sustainability may involve reducing the consumption of certain goods and services, reducing the size of housing to promote denser neighborhoods, or implementing taxes to reduce pollution. </p>
<p>These measures, although beneficial for the environment, can lower individual comfort and increase living costs, which affects the quality of life of residents.</p>
<h2>Traits of sustainable and livable cities</h2>
<p>We recently conducted a <a href="https://www.sciencedirect.com/science/article/pii/S0264275123004201">study aimed at answering the following question</a>: What are the characteristics of cities that perform better in terms of quality of life and sustainability?</p>
<p>To answer this question, we analyzed the similarities and differences between the factors underlying sustainability and quality of life rankings for 171 Canadian cities with more than 25,000 inhabitants.</p>
<p>Our results reveal a positive and statistically significant correlation between urban quality of life and sustainability indicators in Canadian cities. However, our findings also highlight important contradictions regarding sustainable living in the three main dimensions of sustainable development: economic, social and environmental.</p>
<p>Wood Buffalo, Alta. ranked in the top 20 per cent for sustainability, mainly due to its high-income and educated population, despite its low environmental performances. However, it is in the bottom 20 per cent for quality of life due to high living costs and limited cultural amenities. </p>
<p>Kamloops, B.C. performed well in quality of life, thanks to affordability, strong education and health care, and cultural richness. Yet it falls in the bottom 20 per cent for sustainability because of waste, greening and energy management challenges.</p>
<p>Evaluations of quality of life are mainly based on economic dimensions and take into account indicators such as the unemployment rate and average income. Some indicators also concern the social dimension of sustainable development, including crime, housing affordability, health and the arts.</p>
<p>However, some fundamental social aspects of sustainable development, like wealth distribution and education, are not addressed directly.</p>
<p>The environmental dimension is also largely neglected, with the exception of sustainable mobility (for example, how many people use public transport). For instance, there were no direct measurements of greenhouse gas emissions, the quality of green spaces or the quality of a city’s water.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/568734/original/file-20240110-21-au3gwa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A busy city sidewalk" src="https://images.theconversation.com/files/568734/original/file-20240110-21-au3gwa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/568734/original/file-20240110-21-au3gwa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/568734/original/file-20240110-21-au3gwa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/568734/original/file-20240110-21-au3gwa.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/568734/original/file-20240110-21-au3gwa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/568734/original/file-20240110-21-au3gwa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/568734/original/file-20240110-21-au3gwa.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Quality of life indices can be useful for comparing cities, however, if cities base their policymaking on such metrics, it could lead to unsustainable development.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<h2>Cities should put sustainability first</h2>
<p>These differences between quality of life and sustainable development are concerning for two main reasons. Firstly, because people might use these rankings when deciding where to live, it can make cities with high rankings but poor sustainability appear attractive. </p>
<p>Second, as cities generally seek to attract residents, they may be tempted to make decisions based on variables that increase their quality of life ranking to the detriment of sustainable development. </p>
<p>The most highly ranked cities are likely to maintain the status quo with regard to their development strategy in order to stay at the top of the list. Moreover, lower ranked cities are likely to mimic the urban conditions that characterize the most successful cities.</p>
<p>However, these objectives are not always compatible with urban sustainability, which takes into account broader environmental and collective concerns, such as preserving environmental quality and reducing pressure on natural resources and green spaces.</p>
<p>This means quality of life becomes unsustainable if it does not take into account environmental impacts such as waste management and car use. The same goes for how wealth is distributed. </p>
<p>Prioritizing sustainability, even if it means a lower quality of life ranking in the short term, ensures cities remain viable in the future. Integrating sustainability measures into public policies, such as improving public transportation and maintaining green spaces, is essential to meet current needs and anticipate future challenges, ensuring long-term well-being.</p><img src="https://counter.theconversation.com/content/218334/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Focusing on metrics that measure a city’s quality of life could be detrimental to its long-term sustainable development.Georges A. Tanguay, Full Professor, School of Management, Department of Urban Studies and Tourism, Université du Québec à Montréal (UQAM)Juste Rajaonson, Professor, School of Management, Department of Urban Studies and Tourism, Université du Québec à Montréal (UQAM)Licensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2101332023-07-20T12:31:07Z2023-07-20T12:31:07ZAustralians’ national wellbeing shows a glass half full: Measuring What Matters report<p>Australia presents a mixed picture of national wellbeing, according to the government’s Measuring What Matters report released by Treasurer Jim Chalmers. </p>
<p>On the positive side, over the past two decades life expectancy has increased, income and job opportunities have improved, and we are better at accepting diversity. </p>
<p>But Australians now have more chronic health conditions, access to care and support services is more difficult, and there has been little progress on mental health. </p>
<p>While school outcomes have improved, they are falling behind other countries, and we are spending less time developing new skills. </p>
<p>After a trial run of a wellbeing statement in Treasurer Jim Chalmers’ first budget last year, he says this is the first proper national wellbeing framework. </p>
<p>Fifty indicators are used to measure wellbeing under five themes: how healthy, secure, sustainable, cohesive and prosperous we are. The idea is to go beyond the traditional economic measures.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/538482/original/file-20230720-21-asb9dc.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/538482/original/file-20230720-21-asb9dc.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/538482/original/file-20230720-21-asb9dc.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=826&fit=crop&dpr=1 600w, https://images.theconversation.com/files/538482/original/file-20230720-21-asb9dc.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=826&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/538482/original/file-20230720-21-asb9dc.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=826&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/538482/original/file-20230720-21-asb9dc.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1038&fit=crop&dpr=1 754w, https://images.theconversation.com/files/538482/original/file-20230720-21-asb9dc.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1038&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/538482/original/file-20230720-21-asb9dc.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1038&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="attribution"><span class="source">Measuring What Matters, Commonwealth Treasury</span></span>
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</figure>
<p>The report says that over recent decades there have been improvements in 20 of the 50 indicators, while seven have been stable or little changed, and 12 have gone backwards. Eight have mixed trends, and for three there is not comparable data.</p>
<p>There has been environmental progress: on emissions reduction, resources use and waste generation. But biological diversity has deteriorated. </p>
<p>Household income and wealth have improved, as has job satisfaction, but people are finding it harder to make ends meet and homelessness is worse. Fiscal sustainability and economic resilience have also deteriorated.</p>
<p>There’s been little change in income and wealth inequality. The outcome on wages is mixed.</p>
<p>Trust in national government has fallen, although trust in others has increased. </p>
<p>In relation to Indigenous Australians, the report says: “the concept of wellbeing has always been the result of preserving and maintaining culture, which directly affects mental, physical and spiritual health”.</p>
<p>As a result:</p>
<blockquote>
<p>the whole of population indicators outlined in this Framework are not an accurate measure of First Nations wellbeing as they are limited in their ability to represent these intrinsic cultural differences or acknowledge the past practices that have had detrimental impacts</p>
</blockquote>
<p>There has been little change in Australians’ overall life satisfaction in recent years. </p>
<p>“Between 2014 and 2020 the average overall life satisfaction in Australia (out of 10) was relatively stable at around between 7.5 between 2014 and 2019 before declining slightly to 7.2 in 2020,” the report says.</p>
<p>The decline was likely due to COVID.</p>
<hr>
<p><strong>Overall progress on Australians wellbeing</strong></p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/538486/original/file-20230720-19-imp5rt.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/538486/original/file-20230720-19-imp5rt.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/538486/original/file-20230720-19-imp5rt.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=383&fit=crop&dpr=1 600w, https://images.theconversation.com/files/538486/original/file-20230720-19-imp5rt.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=383&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/538486/original/file-20230720-19-imp5rt.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=383&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/538486/original/file-20230720-19-imp5rt.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=482&fit=crop&dpr=1 754w, https://images.theconversation.com/files/538486/original/file-20230720-19-imp5rt.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=482&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/538486/original/file-20230720-19-imp5rt.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=482&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Measuring What Matters, Commonwealth Treasury</span></span>
</figcaption>
</figure>
<hr><img src="https://counter.theconversation.com/content/210133/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michelle Grattan does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>This is the first national wellbeing framework. Fifty indicators are used to measure wellbeing under five themes: how healthy, secure, sustainable, cohesive and prosperous we are.Michelle Grattan, Professorial Fellow, University of CanberraLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2079502023-06-22T16:04:29Z2023-06-22T16:04:29ZAutism: later-life diagnosis doesn’t mean lower quality of life – new research<figure><img src="https://images.theconversation.com/files/533130/original/file-20230621-17-ic6qq3.jpg?ixlib=rb-1.1.0&rect=18%2C0%2C6137%2C3238&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Our research suggests the age people find out they're autistic does not necessarily impact their quality of life afterward.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/autism-syndrome-person-autistic-social-disorder-1338562577">Lightspring/ Shutterstock</a></span></figcaption></figure><p>A growing number of people are discovering that they are autistic in adulthood. This is especially the case among women, with a number of celebrities – such as model and reality star <a href="https://www.bbc.co.uk/iplayer/episode/m001k31t/christine-mcguinness-unmasking-my-autism">Christine McGuinness</a> and TV presenter <a href="https://www.theguardian.com/society/2021/nov/16/tv-presenter-melanie-sykes-announces-life-affirming-autism-diagnosis">Melanie Sykes</a> – sharing their experiences of being diagnosed as an adult. </p>
<p>Having an autism diagnosis in adulthood can <a href="https://www.autism.org.uk/advice-and-guidance/topics/benefits-and-money/benefits/benefits-you-can-get">have benefits</a>, but it has left some wondering what life would have been like if they’d found out earlier. In our <a href="https://journals.sagepub.com/doi/10.1177/13623613231173056">latest study</a>, we investigated whether getting a diagnosis at a younger age is linked to a better quality of life as an adult. </p>
<p>We found no link between the age people received a diagnosis and how they felt about their lives. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1635657120245862403"}"></div></p>
<p>To conduct our study, we asked 300 autistic adults to report the age at which they learned they were autistic and detailed information about their backgrounds, including their age, sex, ethnicity, relationship status, income, education level and whether they had any mental health conditions. Recording these details was crucial as all are <a href="https://onlinelibrary.wiley.com/doi/full/10.1002/aur.1965">linked to quality of life</a>. </p>
<p>We also measured participants’ self-reported level of autistic personality traits. Approximately 43% of participants were male, and around 90% of participants were white. Around half of the people in our sample learned they were autistic as a child, while the other half found out as adults.</p>
<p>Participants then rated how they felt about their lives by answering questions based on the World Health Organization’s <a href="https://www.cambridge.org/core/journals/psychological-medicine/article/abs/development-of-the-world-health-organization-whoqolbref-quality-of-life-assessment/0F50596B33A1ABD59A6605C44A6A8F30">quality of life</a> scale. Some of the questions they were asked included: “To what extent do you feel your life to be meaningful?” And: “How satisfied are you with the support you get from your friends?”</p>
<figure class="align-center ">
<img alt="A young woman speaks to her older male doctor." src="https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/533132/original/file-20230621-26-ww0y51.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">We found no link between the age people found out and how they felt about their lives.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctor-speaking-cheerful-young-patient-his-168172643">wavebreakmedia/ Shutterstock</a></span>
</figcaption>
</figure>
<p>Our results confirmed that the age a participant was diagnosed or became aware of being autistic (if they were diagnosed very young and told later by their parent) was not linked to their quality of life as an adult. This was true when the influence of other factors was considered in our analysis.</p>
<p>Our research also brought up an unexpected finding. Autistic women, after accounting for age, reported a better quality of life than men overall. We aren’t sure what might explain this finding, so it will be important for future studies to investigate this difference. </p>
<p>While in recent years there’s been a much-needed growth in research investigating <a href="https://neurosciencenews.com/asd-mental-health-21735/#:%7E:text=Summary%3A%20Women%20on%20the%20autism,harm%20than%20males%20with%20autism.">mental health in autistic women</a>, this finding suggests we must not overlook the needs of autistic men who might be struggling with their mental health.</p>
<p>Our study also provided further support for the <a href="https://doi.org/10.1016/S2215-0366(19)30289-5">link between autism and poor mental health</a>. Autistic people who had other conditions, such as ADHD, anxiety or depression, reported a much lower quality of life than those who had none. These results reinforce the need for <a href="https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/jcpp.13678">more targeted, personalised support</a> to improve autistic people’s mental health and quality of life. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1653360446781399040"}"></div></p>
<p>Our findings also reflect a fundamental shift that’s required in autism research. For a long time, autism was thought about as a childhood condition. Many people still think this way. What people may not realise is that most autistic people in the UK, for example, <a href="https://www.autistica.org.uk/our-research/research-projects/investigating-autistic-adults-across-their-lives-and-into-old-age">are adults</a>.</p>
<p>With an ageing society, this pattern may increase over the next few decades. As such, it’s important to improve awareness that autism isn’t just a childhood condition. This will ensure that both research and practical support receive proportionate funding, which has historically been lacking for autistic adults. It may also help more people to get the support they need. </p>
<p>It will also be vital for future research to focus on highlighting <a href="https://journals.sagepub.com/doi/full/10.1177/13623613221146440">the strengths that autistic adults may have</a>, as well as looking at <a href="https://journals.sagepub.com/doi/10.1177/1362361320908410">the difficulties they may face</a>. This will help identify the best ways to support autistic people throughout their lives and move beyond a one-size-fits-all approach to care.</p><img src="https://counter.theconversation.com/content/207950/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Lucy Anne Livingston receives or has received funding from the UKRI Medical Research Council, The Waterloo Foundation and the Economic and Social Research Council. </span></em></p><p class="fine-print"><em><span>Punit Shah receives or has received funding from the UKRI Medical Research Council and the Economic and Social Research Council.</span></em></p><p class="fine-print"><em><span>Florence Leung does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A growing number of people are finding out they are autistic in adulthood.Florence Leung, Postdoctoral Research Assistant, University of BathLucy Anne Livingston, Lecturer in Psychology, King's College LondonPunit Shah, Associate Professor of Psychology, University of BathLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2003502023-03-14T20:58:26Z2023-03-14T20:58:26ZLeveraging digital platforms for public good: Stories of positive impact from India<figure><img src="https://images.theconversation.com/files/514293/original/file-20230308-24-vnq55t.jpg?ixlib=rb-1.1.0&rect=19%2C0%2C3244%2C2448&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Waste management workers stand outside a waste processing plant in Bengaluru, India. By formalizing the waste collection process, the 'I Got Garbage' digital platform transformed waste workers into micro-entrepreneurs.</span> <span class="attribution"><span class="source">(Suchit Ahuja)</span>, <span class="license">Author provided</span></span></figcaption></figure><p>Digital platforms such as Uber, Airbnb, WeChat and TaskRabbit have changed the world by creating <a href="https://issues.org/rise-platform-economy-big-data-work/">new economic opportunities</a> through <a href="https://hbr.org/2018/03/thriving-in-the-gig-economy">gig work culture</a> and enabling a <a href="https://www.digitaljournal.com/pr/news/sharing-economy-market-2023-understanding-the-impact-of-consumer-demand-on-business-growth-till-2028">sharing economy</a>. However, concerns remain about how these platforms may <a href="https://www.immpressmagazine.com/the-gig-economy-exploitation-of-innovation/">exploit gig workers</a> and customers if driven purely by profit. </p>
<p>While these platforms are great at <a href="https://hbr.org/2019/01/why-some-platforms-thrive-and-others-dont">creating value by bringing buyers, sellers and consumers together</a>, their benefits often don’t transcend to their ecosystem. <a href="https://www.wired.com/story/tiktok-platforms-cory-doctorow/">They have been criticized</a> for their <a href="https://www.un.org/en/un75/impact-digital-technologies">poor social and environmental impacts</a>, <a href="https://doi.org/10.1016/j.worlddev.2021.105528">exclusionary practices</a>, <a href="https://doi.org/10.1177/00081256221094307">digital colonialism</a> and <a href="https://doi.org/10.1177/20539517221135176">surveillance capabilities</a>.</p>
<p>To leverage the power of platforms for social good, it’s important to design <a href="https://www.linkedin.com/pulse/digital-platforms-potential-impact-social-sector-abhishek-modi/">socially-oriented platforms</a> within <a href="https://hbr.org/2016/10/the-ecosystem-of-shared-value">ecosystems of shared value</a> that target the UN’s sustainable development goals.</p>
<p>To focus on sustainable development goals, platforms need to change from being exclusively focused on profits and value appropriation, to perceiving themselves as <a href="https://digitalpublicgoods.net/">public goods</a> that <a href="https://doi.org/10.1111/isj.12378">innovate responsibly</a> by co-creating and sharing economic, social and environmental value. </p>
<p>While this is easier said than done, some <a href="https://platformcommons.org/platform/">organizations have begun the process</a>.</p>
<h2>A new non-profit</h2>
<p>Commercial platforms are expected to earn an <a href="https://www.insighteurs.com/platform-economy-digital-business-models/#how-much-of-the-economy-is-a-platform">estimated $60 trillion by 2025</a>. Meanwhile, the <a href="https://platformcommons.org/">Platform Commons Foundation</a> — an Indian non-profit that builds inclusive platforms to address global <a href="https://www.grandchallenges.org/">grand challenges</a> — is focused on creating social value, while economic value is secondary.</p>
<p>The Platform Commons Foundation has launched a number of platforms focused on sustainable development goals such as poverty alleviation, providing quality education and decent work, improving economic growth and reducing inequalities.</p>
<p>One of the Platform Commons Foundation’s many platforms — I Got Garbage — transformed the lives of underpaid and marginalized waste management workers in <a href="https://www.imf.org/en/Publications/fandd/issues/2020/12/what-is-the-informal-economy-basics">India’s informal sector</a>, who faced frequent harassment and exploitation, by helping them earn a steady income and a dignified livelihood.</p>
<p>Another platform — Commons.farm — is an agritech platform that provides equitable and accessible services to <a href="https://timesofindia.indiatimes.com/blogs/voices/necessity-of-holistic-development-of-small-marginal-farmer-communities-in-india/">smallholder farmers that face challenges</a> across the agricultural supply chain. </p>
<p>Smallholder farmers make up <a href="https://www.weforum.org/agenda/2021/06/agri-tech-innovation-can-improve-value-capture-and-transform-ecosystem-for-india-s-small-farmers/">80 to 90 per cent of India’s agriculture</a>. Yet, they own less than five acres of land and usually grow only two crops a year. They are often unable to find buyers for their produce, forcing them to only sell through intermediary controlled markets.</p>
<p>Let’s take a closer look at these platforms.</p>
<h2>Revolutionizing waste management</h2>
<p>I Got Garbage turned the informal waste collection process into a formal process. The platform consists of an ecosystem of <a href="https://www.swmrt.com/">thousands of citizens</a>, <a href="https://bengaluru.citizenmatters.in/4561-swmrt-solid-waste-management-guidelines-4561">government and municipal officers</a>, <a href="https://hasirudala.in/">non-governmental organizations</a>, waste worker communities and other institutions. </p>
<p>By formalizing the waste collection process, I Got Garbage transformed waste workers into micro-entrepreneurs who can earn sustainable wages and protect themselves from exploitation. </p>
<p>I Got Garbage did this through several technology interventions. Some of these interventions include the <a href="https://www.northeastern.edu/sei/2018/12/i-got-garbage/">I Got Garbage app</a> that runs on low-cost cellphones, SMS and WhatsApp-based communications in various Indian languages, waste and recycling management planning software, customer service training, providing uniforms and identity badges, geotagging locations for waste pick-up and tracking wages. </p>
<figure class="align-center ">
<img alt="Women wearing masks and fluorescent worker vests sort through trash on a conveyor belt" src="https://images.theconversation.com/files/514082/original/file-20230307-18-qhiyis.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/514082/original/file-20230307-18-qhiyis.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/514082/original/file-20230307-18-qhiyis.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/514082/original/file-20230307-18-qhiyis.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/514082/original/file-20230307-18-qhiyis.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/514082/original/file-20230307-18-qhiyis.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/514082/original/file-20230307-18-qhiyis.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Waste workers separate paper and plastic on a conveyor belt in a recycling facility in New Delhi, India in September 2019. The ‘I Got Garbage’ digital platform turned the informal waste collection process into a formal process.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>I Got Garbage worked with the community of waste workers to understand their problems and gain their trust. It also signed households up for its services via Facebook and SMS/WhatsApp campaigns.</p>
<p>I Got Garbage made a significant impact as it reduced landfill waste by 40 per cent and processed more than 10,000 tons of recycling materials daily in one city. It employed more than 15,000 waste workers and expanded to several cities in less than five years since its inception.</p>
<p>I Got Garbage has led to a revolution of waste management and recycling in India which is set to be <a href="https://www.linkedin.com/posts/thebetterindia_cleanestcity-biomethanation-zerowaste-activity-7034484687683084288-9WIP">replicated in 72 countries</a> in Asia and Africa.</p>
<h2>Empowering farmers and preventing suicide</h2>
<p>The Indian agricultural sector suffers the same fragmentation and informal process issues as the waste management sector. </p>
<p>Productivity issues, corruption and supply chain issues within India’s agricultural sector are so stark they have caused a suicide epidemic among debt-ridden smallholder farmers. <a href="https://www.cnn.com/2022/03/17/opinions/india-farmer-suicide-agriculture-reform-kaur/index.html">Over 10,000 farmers died in 2020 alone</a> according to the government. </p>
<p>The situation was dire and needed intervention at the grassroots level.</p>
<p>The Platform Commons Foundation launched Commons.farm in 2019 to assist farmers and regional governments in and around Bengaluru. The idea was the same as I Got Garbage, except for the revenue model — empowering farmers by connecting them with each other to form co-operatives, resolving agriculture supply chain issues, enabling communication among farmers, governments and markets, and improving social and environmental impact.</p>
<figure class="align-center ">
<img alt="A barefooted Indian man walks through a field of crops carrying a bunch of turnips" src="https://images.theconversation.com/files/514320/original/file-20230308-1015-2bwkbd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/514320/original/file-20230308-1015-2bwkbd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/514320/original/file-20230308-1015-2bwkbd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/514320/original/file-20230308-1015-2bwkbd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/514320/original/file-20230308-1015-2bwkbd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/514320/original/file-20230308-1015-2bwkbd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/514320/original/file-20230308-1015-2bwkbd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">An Indian farmer carries turnips after harvesting them from a field in Kanachak village, on the outskirts of Jammu, India in February 2021.</span>
<span class="attribution"><span class="source">(AP Photo/Channi Anand)</span></span>
</figcaption>
</figure>
<p>This would empower smallholder farmers with digital tools to reduce waste, cut out corruption and communicate directly with suppliers and customers.</p>
<p>The platform obtains its primary revenues <a href="https://www.theguardian.com/environment/2021/sep/14/global-farm-subsidies-damage-people-planet-un-climate-crisis-nature-inequality">from government subsidy programs</a> instead of charging farmers for services. Local and state governments that use Commons.farm receive guaranteed impact outcomes from the money they spend on the platform, which is a fraction of the overall subsidy bill they would otherwise incur.</p>
<h2>Sustainable use of digital platforms</h2>
<p>Platforms like I Got Garbage and Commons.farm that also focus on sustainable development goals are gaining attention. The <a href="https://www.francis-project.eu/">FRANCIS project</a>, for example, hosts open innovation challenges in Europe that involve citizens, scientists and academics. Its aim is to develop affordable innovations that address real-world challenges.</p>
<p>Citizens can join the challenges via the online platform or in face-to-face events. Scientists run workshops during the challenges that offer method training. This project is currently working on a solar disinfection project targeting low- to middle-income households in rural areas, people in refugee camps and micro-entrepreneurs.</p>
<p>The Indian government has also created its own set of public platforms that it calls the <a href="https://indiastack.org/">India Stack</a>. It has built a <a href="https://uidai.gov.in/en/">biometric digital identity platform</a>, a real-time <a href="https://www.nytimes.com/2023/03/01/business/india-digital-payments-upi.html">mobile payment platform</a>, a <a href="https://www.exemplars.health/emerging-topics/epidemic-preparedness-and-response/digital-health-tools/cowin-in-india">COVID-19 vaccine records platform</a> and an open and inclusive <a href="https://ondc.org/">e-commerce platform</a>.</p>
<p>Digital platforms can be used as private pipelines that enable monopolies or they can be used as open, inclusive mechanisms <a href="https://doi.org/10.1080/01972243.2022.2105999">leveraged for the public good</a>. </p>
<p>By learning from examples that have leapfrogged common platform pitfalls to focus on the public good, we can move towards an equitable and empowering version of digital transformation. We have the opportunity to emulate these successful examples in our own contexts.</p><img src="https://counter.theconversation.com/content/200350/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Suchit Ahuja receives funding from FRQSC and SSHRC. </span></em></p><p class="fine-print"><em><span>Yolande E. Chan receives funding from SSHRC.</span></em></p>To focus on sustainable development goals, platforms need to change from being exclusively focused on profits and value appropriation to perceiving themselves as public goods.Suchit Ahuja, Assistant Professor, Business Technology Management, Concordia UniversityYolande E. Chan, Dean, Desautels Faculty of Management, McGill UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1875772022-08-24T15:31:42Z2022-08-24T15:31:42ZFour ways to spend your dwindling cash that will boost your wellbeing<figure><img src="https://images.theconversation.com/files/479848/original/file-20220818-445-3hyz75.jpg?ixlib=rb-1.1.0&rect=87%2C47%2C5242%2C3276&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/multiethnic-friends-celebrating-summer-holi-festival-1125830570">Shutterstock/Leszek Glasner</a></span></figcaption></figure><p>The cost of living crisis shows no signs of letting up. Inflation <a href="https://www.theguardian.com/business/2022/feb/10/the-rise-in-global-inflation-the-hit-to-living-standards-across-the-world">around the world</a> continues to rise and <a href="https://www.newsweek.com/nouriel-roubini-dr-doom-economist-recession-prediction-long-severe-1734160">economists are</a> predicting <a href="https://www.bbc.com/news/business-62405037">numerous countries</a> will go <a href="https://edition.cnn.com/2022/08/01/economy/germany-retail-sales-europe-recession/index.html">into recession</a>. </p>
<p>With households having less to spend, they need to prioritise, and stark choices have to be made. For some, these decisions <a href="https://www.bbc.com/news/av/uk-wales-59664683">are extreme</a>. </p>
<p>But even those who have their basic needs covered are still faced with having less money to spend now than they did a year ago. And whether it’s cancelling a <a href="https://theconversation.com/four-ways-your-tv-subscriptions-could-change-because-of-the-cost-of-living-crisis-187630">streaming service</a> or cutting back on grocery treats, many of us will be deciding what we can afford to keep and what we should do without over the coming months.</p>
<p><a href="https://www.sciencedirect.com/science/article/pii/S2352250X15300051?casa_token=24NY9_-vePoAAAAA:aslGj_80GAoSJCdEL2apTZnrMWLntR5Kb4okj2urnCIQ6SWQjCHLuxPX5VRa3jGjgof5uQl1UA">Research</a> suggests that the way we spend what money we do have can have a marked impact on our happiness and wellbeing. <a href="https://www.sciencedirect.com/science/article/pii/S0167487018304033?casa_token=nLgcRXdoYMIAAAAA:cUpyut994HiRrYIEsehdqSO-yJ3kBiD0ytoB8domtplgU94nnjSDYtsbjLCNeF88euEOhU-_">There is evidence</a>, for example, that purchases which help us to gain autonomy (a bicycle, say) or improve our self-esteem (a confidence boosting outfit perhaps) can have a positive effect. </p>
<p>Here are some of the other ways that research has shown how spending money and wellbeing are linked.</p>
<h2>1. Connecting with others</h2>
<p><a href="https://psycnet.apa.org/record/2012-34884-001">Research</a> suggest that spending money on social experiences, such as going for coffee with friends, or attending a concert or festival, boosts our wellbeing. The same goes for <a href="https://www.science.org/doi/full/10.1126/science.1150952?casa_token=oVzNdkTm8AIAAAAA%3Aea9Qd6CcQUHIIWkroHrbk6sThP3B8RN7zYXzSMXR5hta0AYD7QYFujHoaduH8pmQOjXWbnRSKIA0">spending money on others</a>, whether it’s buying someone a gift or making a donation to charity. </p>
<p>This is because sharing experiences with others and taking action towards positive change fulfils our basic psychological needs of social connection and fulfilment. </p>
<p>Of course, such experiences don’t have to cost anything. Going for a walk, joining a <a href="https://www.parkrun.org.uk/">running group</a>, or volunteering can all be done for free. </p>
<h2>2. Buying time</h2>
<p>Other <a href="https://www.nature.com/articles/s41562-020-0920-z">research</a> suggests that wealth should not be measured solely in terms of economic resources, such as property or cash, but also through the amount of free time you have. Lack of time, known as “time poverty”, has been consistently linked to <a href="https://onlinelibrary.wiley.com/doi/full/10.1093/aepp/pps034?casa_token=YO1gdoGjJ8MAAAAA%3Apo8LbAA-wP700g8PsDv4nTjmDn8HbCfY3VmZmN7fwfWG5Z1--urlA0g9xPbxKwTiA33tFDAuBFFdGtA">increased stress</a>, and <a href="https://onlinelibrary.wiley.com/doi/full/10.1093/aepp/pps034?casa_token=YO1gdoGjJ8MAAAAA%3Apo8LbAA-wP700g8PsDv4nTjmDn8HbCfY3VmZmN7fwfWG5Z1--urlA0g9xPbxKwTiA33tFDAuBFFdGtA">poor lifestyle choices</a>. </p>
<p>Spending money on products or services which free up time – such as help with domestic chores or avoiding a lengthy commute to work – can be considered a wise investment. </p>
<figure class="align-center ">
<img alt="Alarm clock surrounded by piles of coins." src="https://images.theconversation.com/files/479846/original/file-20220818-6276-n03lif.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/479846/original/file-20220818-6276-n03lif.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/479846/original/file-20220818-6276-n03lif.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/479846/original/file-20220818-6276-n03lif.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/479846/original/file-20220818-6276-n03lif.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/479846/original/file-20220818-6276-n03lif.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/479846/original/file-20220818-6276-n03lif.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Spending time.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/close-time-money-green-bokeh-background-522048331">Shutterstock/kan_chana</a></span>
</figcaption>
</figure>
<h2>3. Achieving potential</h2>
<p>Feeling competent at what we do and developing our potential are also key ingredients for improving happiness levels. <a href="https://www.sciencedirect.com/science/article/pii/S0167487018304033">Research</a> suggests that spending money on things or experiences which help you to feel better at things you like to do, or that improve your self-esteem are worthwhile. </p>
<p>This might include evening classes or training courses that develop skills, or items that could improve the way we do activities we enjoy, such as technology or sports equipment. </p>
<p>But again, learning new things doesn’t need to cost much at all. Various <a href="https://www.coursera.org/">platforms</a> and social media channels can provide good quality free courses and “how to” guides. </p>
<h2>4. Impressing less</h2>
<p><a href="https://www.sciencedirect.com/science/article/pii/S0167487018304033">Research</a> has shown that buying things specifically to impress others does not make you happy. In fact, a focus on materialism, the accumulation of wealth and possessions to signal social status, has been shown to have a detrimental effect <a href="https://onlinelibrary.wiley.com/doi/full/10.1002/mar.21387">on wellbeing</a>. </p>
<p>This is because seeking external rewards through other people’s admiration and compliments comes with no guarantees. Instead, seeking personal fulfilment through consumption is likely to distract you from investing time and money on nurturing your social connections or on self-development that will actually have a positive impact on your wellbeing. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/covid-may-have-made-us-less-materialistic-new-research-175890">COVID may have made us less materialistic – new research</a>
</strong>
</em>
</p>
<hr>
<p>So stepping away from the goal of wanting more money to buy more things might be one of the most positive steps you can take when there’s a cost of living crisis. Or, for that matter, even when there isn’t.</p><img src="https://counter.theconversation.com/content/187577/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Olaya Moldes Andrés receives funding from The British Academy and the Academy of Marketing.</span></em></p>What research tells us about what to keep and what to cut back on.Olaya Moldes Andrés, Lecturer in Marketing, Cardiff UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1867602022-08-23T13:34:47Z2022-08-23T13:34:47ZTanzanian TB patients have a lower quality of life than people who haven’t had the disease<figure><img src="https://images.theconversation.com/files/480110/original/file-20220819-3561-icpinc.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Survivors face ongoing disability and increased mortality risks beyond treatment completion.</span> <span class="attribution"><span class="source">PUNIT PARANJPE/AFP via Getty Images</span></span></figcaption></figure><p>Numerous researchers have documented the <a href="https://www.who.int/tools/whoqol">quality of life</a> and mental health of specific population groups. Examples include people living with HIV, the elderly, students, men who have sex with men, and pregnant women accessing health services. One <a href="https://annals-general-psychiatry.biomedcentral.com/articles/10.1186/s12991-020-00281-8">review</a> found that people with tuberculosis (TB) have a relatively high prevalence of depression. </p>
<p>We’re part of a multi-country project called <a href="https://www.tbsequel.org/">TB Sequel</a>, which studies the long-term consequences of pulmonary TB. The research shows that survivors face ongoing disability and increased mortality risks beyond treatment completion. To fully understand the impact of TB on survivors’ quality of life, though, we needed to compare them with a group of healthy individuals with similar demographic and socio-economic characteristics.</p>
<p>But little is known about the quality of life and mental health of what we consider “apparently healthy” people. </p>
<p>So we needed first to <a href="https://archpublichealth.biomedcentral.com/articles/10.1186/s13690-022-00899-y">establish estimates</a> or references for these local “apparently healthy” populations. We use the term “apparent” because the assessment of health status was based on self-reported symptoms or conditions.</p>
<p>We set out to describe health-related quality of life, and the level of psychological distress, among adults in Tanzania – one of the four African countries that are part of our bigger study. The estimates for this “apparently healthy” Tanzanian population will help us interpret our wider research findings.</p>
<h2>Long term effects of TB</h2>
<p>The <a href="https://www.tbsequel.org/">TB Sequel project</a> followed patients that received treatment for TB in The Gambia, Mozambique, South Africa and Tanzania. The study followed 1,500 patients for at least 24 months from the start of TB treatment, to measure the burden of lung impairment after TB. The project also looked at other long-term effects of <a href="https://epub.ub.uni-muenchen.de/68603/1/68603.pdf">pulmonary TB</a>. </p>
<p>One of the project’s research tasks focused on the social consequences of TB. These included health-related quality of life, pain, psychological distress, disability, and TB-related stigma.</p>
<p>Our preliminary analyses of the data showed that TB patients in Tanzania perceived their health-related quality of life to be much worse than patients at the other TB Sequel sites. To understand why, we needed to know more about “apparently healthy” adults living in the same setting.</p>
<p>We then did a cross-sectional study in Mbeya and Songwe regions, in southwestern Tanzania. The study was done by a TB Sequel research team in Tanzania and was part of the doctoral project of Rebekka Wenzel. We enrolled close to 400 “apparently healthy” adults (aged 15-49 years). They were either household members and neighbourhood contacts of TB Sequel study participants or from the local community. Their characteristics were similar to the demographic features of the population of Tanzania.</p>
<p>We asked them about their health in eight domains: physical functioning; bodily pain; role limitations due to physical health problems; role limitations due to personal or emotional problems; emotional well-being; social functioning; energy/fatigue; and general health perceptions. These were summarised into scores for physical and mental health.</p>
<h2>‘Apparently healthy’ quality of life</h2>
<p>The “apparently healthy” adult population scored lower on physical and mental health in our survey compared to other <a href="https://link.springer.com/article/10.1023/A:1026431727374">similar research</a> in <a href="https://panafrican-med-journal.com/content/article/16/84/full/">Tanzania</a> and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5926535/">other</a> <a href="https://onlinelibrary.wiley.com/doi/10.1111/j.0013-9580.2004.56903.x">African</a> <a href="https://hqlo.biomedcentral.com/articles/10.1186/s12955-015-0337-y">countries</a>. </p>
<p>Most participants (78.4%) reported that they were not experiencing psychological distress. Overall, one in five participants (21.6%) reported some form or degree of depression or anxiety. This is much higher than the <a href="https://www.nature.com/articles/s41598-018-21243-x">global prevalence</a> of depression of 12.9%. As a result, we could therefore estimate that twice as many TB patients reported psychological distress or anxiety at the start of TB treatment compared to “apparently healthy” adults living in the same setting.</p>
<p>When we looked at the characteristics of participants who reported better (or worse) overall health, we found that women scored a little lower than men. On levels of depression or anxiety, men’s levels were much lower than women’s (the higher the score, the greater the psychological distress due to depression or anxiety). </p>
<p>Of the women participants aged 35 years and older, those that reported being divorced or widowed and those with a primary or lower level of education were more likely to report some form of depression or anxiety. </p>
<p>The results were consistent with <a href="https://journals.sagepub.com/doi/pdf/10.1177/23337214211053121">other</a> <a href="https://annals-general-psychiatry.biomedcentral.com/articles/10.1186/s12991-021-00375-x">studies</a> and our expectations. We expected to find that older people would feel less well, and that men, younger people and better educated people would feel better. </p>
<p>These results provided us with the demographic characteristics associated with poor quality of life or any form of psychological distress in Tanzania. They also served as the reference or baseline against which to compare the TB Sequel data. We could more accurately estimate the impact of TB on health-related quality of life and psychological distress in individuals from Tanzania. </p>
<p>We did the same kind of comparison for other sub-groups such as HIV-positive adults, females, and older or unemployed adults. </p>
<h2>Going forward</h2>
<p>To our knowledge, this was the first study to measure health-related quality of life and psychological distress in a population that reported no respiratory or cardiovascular diseases in southwestern Tanzania. </p>
<p>The findings allow us to quantify and examine the impact of TB and post-TB impairment by providing a comparison group from a general population. Our study provides valuable references for other research initiatives and clinical services in this region. They can be used to understand more about patients with different illnesses and assess the impact of health interventions.</p><img src="https://counter.theconversation.com/content/186760/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Olena Ivanova received funding from the German Center for Infection Research (DZIF) MD Stipend, TI 07.003. She is affiliated with the Division of Infectious Diseases and Tropical Medicine, Medical Centre of the University of Munich (LMU), 80802, Munich, Germany and the German Center for Infection Research (DZIF), Partner Site Munich, 80802, Munich, Germany.</span></em></p><p class="fine-print"><em><span>Andrea Rachow received funding from the German Center for Infection Research (DZIF) MD Stipend, TI 07.003. Open Access funding enabled and organized by Projekt DEAL. She is affiliated with the Division of Infectious Diseases and Tropical Medicine, Medical Centre of the University of Munich (LMU), 80802, Munich, Germany and the German Center for Infection Research (DZIF), Partner Site Munich, 80802, Munich, Germany.</span></em></p><p class="fine-print"><em><span>Denise Evans is affiliated with the Health Economics and Epidemiology Research Office, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa. </span></em></p><p class="fine-print"><em><span>Tembeka Sineke is affiliated with the Health Economics and Epidemiology Research Office, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa. </span></em></p>To understand the perceptions of TB patients about their quality of life, it’s useful to have a comparison with “apparently healthy” people.Olena Ivanova, Global Health Researcher and Consultant, Ludwig Maximilian University of MunichAndrea Rachow, Specialist physician, Internal Medicine and Tropical Medicine., Ludwig Maximilian University of MunichDenise Evans, Principal Researcher, University of the WitwatersrandTembeka Sineke, Researcher, University of the WitwatersrandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1764322022-02-22T19:13:02Z2022-02-22T19:13:02ZWhy the cost of climate change can’t be boiled down to one right number, despite some economists’ best attempts<figure><img src="https://images.theconversation.com/files/445776/original/file-20220210-24693-1m5bgil.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C7662%2C5104&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Renewable energy prices have fallen faster than predicted.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/wind-turbine-at-motorway-a8-baden-wuerttemberg-royalty-free-image/1210777997">ImageBROKER/Lilly</a></span></figcaption></figure><p>A group of economists has issued a new estimate of the future cost of climate change that is grabbing headlines. The consultancy Deloitte estimates that unchecked climate change could cost the global economy <a href="https://www2.deloitte.com/content/dam/Deloitte/global/Documents/gx-global-turning-point-report.pdf">US$178 trillion</a> over the next 50 years.</p>
<p>While climate change does harm economies, there are a lot of problems with long-term estimates like this.</p>
<p>New technologies arrive and evolve. Human behaviors shift. For example, who would have thought before the COVID-19 pandemic that a large percentage of the population would stop driving to the office and work from home instead?</p>
<p>I am a microeconomist who investigates the <a href="https://escholarship.org/uc/item/3qp74527">causes and consequences of climate change</a>. When I think about the climate change challenge in 2040 and beyond, I anticipate many “known unknowns” about our future. Thus, I am amazed to read precise climate cost estimates like those published by economic consultants like Deloitte and <a href="https://www.mckinsey.com/business-functions/sustainability/our-insights/the-net-zero-transition-what-it-would-cost-what-it-could-bring">McKinsey & Co</a>.</p>
<p>Deloitte’s <a href="https://www2.deloitte.com/global/en/pages/about-deloitte/articles/global-turning-point.html">new estimate</a> predicts that the damage from unchecked <a href="https://www.c2es.org/content/international-emissions/">greenhouse gas emissions</a>, with global temperatures rising 3 degrees Celsius (5.4 F) over pre-industrial times, would slow growth in every region and could shave 7.6% off global GDP in 2070 alone compared to a world without climate change. That includes harms such as lost productivity during heat waves and crop failures.</p>
<p>Numbers like these are widely used to encourage action by governments, companies and individuals. Economists agree that climate change, left unchecked, will harm economies. But these estimates are produced using formal models that feature many assumptions, any one of which could throw off the accounting in a big way, leaving the estimates either wildly high or low. </p>
<p>While people might think they want “precision,” precise predictions <a href="https://www.nber.org/system/files/working_papers/w28472/w28472.pdf">raise the risk of conveying too much certainty</a> in a constantly changing world. </p>
<h2>The prediction challenge</h2>
<p><a href="https://www.nobelprize.org/uploads/2018/10/nordhaus-lecture.pdf">Climate economic models</a> seek to answer several prediction questions, such as:</p>
<ul>
<li><p>“What will we gain economically by reducing greenhouse gas emissions?”</p></li>
<li><p>“What will be the economic and quality-of-life impact if we do nothing and just allow greenhouse gas emissions to rise under ‘business as usual’?”</p></li>
</ul>
<p>To answer these complex questions, climate economists make a series of assumptions that are “baked” into their mathematical models.</p>
<h2>Known unknowns</h2>
<p>First, economists must predict the world’s average income per person for each year in the future. </p>
<p>Macroeconomists have faced challenges <a href="https://www.philadelphiafed.org/the-economy/macroeconomics/why-are-recessions-so-hard-to-predict-random-shocks-and-business-cycles">predicting the timing and duration of recessions</a>. Predicting future <a href="https://doi.org/10.1073/pnas.1713628115">economic growth over the course of 30 or 40 years</a> requires predicting how the quantity and quality of the world’s workforce and our technology will evolve over time. Predicting the world’s population growth is also a challenging exercise, as increases in <a href="https://link.springer.com/article/10.1007/s11113-012-9230-0">urbanization</a>, <a href="https://faculty.wcas.northwestern.edu/%7Emdo738/research/Doepke_JODE_15.pdf">women’s access to education</a> and improvements in birth control are all associated with reductions in fertility.</p>
<p>Second, they must make an informed guess about what technologies will exist in the future concerning our sources of power generation and the energy we use in transportation. If they can estimate the future world population level, income level and technology, then they can measure how much extra greenhouse gas emissions the world produces each year.</p>
<p>Third, they use a climate science model to estimate the extra climate change risk caused by the production of greenhouse gas emissions. This is typically measured by the increase in <a href="https://climate.nasa.gov/ask-nasa-climate/3017/making-sense-of-climate-sensitivity/">the world’s average surface temperature</a>.</p>
<p>Fourth, they must take a stand on how our future economy’s production will be affected by rising climate change risk. Ideally, these models also tell us how releasing more greenhouse gas emissions increases the <a href="https://scholar.harvard.edu/files/weitzman/files/fattaileduncertaintyeconomics.pdf">likelihood of disaster scenarios</a>.</p>
<p>By combining all of these equations with their own respective assumptions, a research team generates a single number.</p>
<h2>The ‘art’ of predicting future emissions</h2>
<p>Economists estimate future global greenhouse gas emissions by multiplying the predicted global gross national product – the total value of goods and services – by the average emissions per dollar of gross national product. </p>
<p>If the world succeeds in ending fossil fuel use, this latter figure could be close to zero. The innovation and deployment of low-carbon technologies – think electric vehicles and solar farms – can significantly shift the costs and benefits that economists are trying to quantify.</p>
<p>Many factors determine this path of technological advance, including investment in research and development. International politics also don’t always factor into climate economic models. For example, if China chooses to become more insular, will it increase its coal consumption because the nation is endowed with coal? Conversely, could <a href="https://www.nytimes.com/roomfordebate/2011/01/18/can-the-us-compete-with-china-on-green-tech/how-we-gain-from-chinas-advances">China choose to use its powerful state</a> to push the green tech sector to create a booming future export market that greens the world’s economy? </p>
<h2>Forecasting future climate change impacts</h2>
<p>Economic mathematical models boil down the impact of climate change into a single algebra equation called the “climate damage function.” In <a href="https://yalebooks.yale.edu/book/9780300246711/adapting-climate-change">my book “Adapting to Climate Change,”</a> I provide several examples for why this function is continually changing and thus is very difficult to predict. </p>
<p>For example, many companies are developing <a href="https://theconversation.com/a-new-ratings-industry-is-emerging-to-help-homebuyers-assess-climate-risks-171898">climate risk ratings systems</a> to educate real estate buyers about the different future climate risks specific pieces of real estate will face, such as wildfires or flooding.</p>
<p>Suppose this emerging climate risk rating industry makes progress in identifying less risky areas to live, and zoning codes are changed to allow more people to live in these safer areas. The damage that Americans suffer from climate change would decrease as people literally “move to higher ground”.</p>
<p>The confident climate modeler cannot capture this dynamic with inflexible algebra.</p>
<h2>Prediction under uncertainty</h2>
<p>Climate economics models can play a “Paul Revere” role – educating policymakers and the public about the likely risks ahead. As economists build these models, they must be <a href="https://doi.org/10.1093/reep/rew012">honest about their limitations</a>. A model that generates “the answer” may lead decision-makers astray. </p>
<p>As much as everyone might like a concrete answer to how much climate change and acting on climate change will cost, we’ll have to live with uncertainty. </p>
<p><em>This article was updated May 24, 2022, with Deloitte’s new estimate.</em></p><img src="https://counter.theconversation.com/content/176432/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Matthew E. Kahn does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Human behaviors shift. Policies change. New technology arrives and evolves. All those changes and more are hard to predict, and they affect tomorrow’s costs.Matthew E. Kahn, Provost Professor of Economics and Spatial Sciences, USC Dornsife College of Letters, Arts and SciencesLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1580122021-12-02T11:25:46Z2021-12-02T11:25:46ZHarms versus benefits in medicine: not just a decision for experts<p>Even before the omicron variant emerged, many European countries were discussing whether to <a href="https://www.bbc.co.uk/news/world-europe-59369488">reintroduce lockdowns</a>. In the UK, there are debates about vaccinating schoolchildren and about who should get <a href="https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00574-0/fulltext">booster jabs</a>. These policies are controversial because they involve trade-offs. Even if lockdowns save lives, they can <a href="https://www.nature.com/articles/d41586-021-00175-z">harm people’s health</a> in other ways. Even if vaccines save lives, they can have <a href="https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/safety-and-side-effects/">side-effects</a>. How should we decide when medical interventions should go ahead?</p>
<p>Here’s one possible answer: we shouldn’t adopt interventions that we predict will do more medical harm than medical good. Of course, that answer leaves open questions about things like <a href="https://theconversation.com/why-nobody-will-ever-agree-on-whether-covid-lockdowns-were-worth-it-161154">liberty or fairness</a>, but it seems an obvious starting point: a lockdown that killed more people than it saved would be perverse. </p>
<p>However, things get complex when we ask how the “more good than harm” principle is interpreted and used in policymaking. This is because real-life cases typically involve trade-offs between very different sorts of outcomes, for different types and numbers of people. </p>
<p>Consider, for example, lockdowns. Their “benefits” - lives saved - are very different from their “costs” - say, to mental health. The benefits also tend to fall on older people and their costs on <a href="https://www.if.org.uk/2020/07/09/plagues-and-intergenerational-justice/">younger people</a>. Finally, the benefits are more concentrated than the costs, in the sense that the number of people whose lives are saved is far smaller than the number of people whose mental health is harmed. So, do they do more good than harm?</p>
<p>Health economists have tools for addressing this kind of challenge, which have long proved popular with policymakers. These tools are complex, but, very roughly, they follow a two-step process. </p>
<p>First, all the different health outcomes are converted into a <a href="https://en.wikipedia.org/wiki/Quality-adjusted_life_year">common scale</a>, allowing us to compare, say, the “badness” of mental health problems against the “badness” of getting COVID. Second, all of the different expected benefits are added, all the different costs are added, and the two numbers are compared to see if the overall effect is positive. </p>
<p>These tools play an important role in decisions about drug funding, for example, by the National Institute for Health and Care Excellence (Nice) in the UK. Many argue that they ought to play a larger role in thinking about emergency measures <a href="https://blogs.lse.ac.uk/africaatlse/2020/03/27/coronavirus-social-distancing-covid-19-lethal-consequences/">such as lockdowns</a>. </p>
<h2>Decisions, decisions</h2>
<p>Unfortunately, these tools are highly questionable. First, think about comparing very different sorts of health outcomes along a common scale. When doing this, we aren’t measuring some objective feature of reality, like how long a disease typically lasts, but making an ethical judgment about how bad it is to have a disease. </p>
<p>We soon run into a challenge about who is qualified to make these sorts of judgements. For example, do we ask doctors who are used to seeing the effects of certain diseases or patients who live with the disease? </p>
<p>This isn’t an idle question, because there are divergences between different perspectives, giving rise to the so-called disability paradox - that certain “disabilities” can seem to improve subjective wellbeing. In <a href="https://www.sciencedirect.com/science/article/abs/pii/S0277953698004110">a study</a> of 153 people with moderate to severe disabilities, 54% reported having an excellent or good quality of life. So, who’s the expert?</p>
<p>Second, the idea of simply adding up “costs” and “benefits” to do a giant comparison is also controversial because it can lead to counterintuitive conclusions. In principle, we might decide that letting a few people die is a price “worth paying” for ensuring that a (very large) number of people don’t suffer ingrown toenails. </p>
<p>Even worse, a focus on comparing aggregate outcomes can blind us to how costs and benefits are distributed. For example, we might recommend policies that help already relatively healthy groups, leaving marginalised or difficult-to-reach communities <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5340318/">even further behind</a>.</p>
<p>Does that mean that there is no way of deciding when the risks outweigh the benefits? Of course not. Some cases really are simple. And there are responses to the worries above. </p>
<p>What is important is to recognise that claims about the balance of harms and benefits don’t just express factual claims, they make ethical judgements. For example, about how bad it is to be ill or whether equality matters. And, although we can’t all be experts on epidemiology, we are all equally qualified - and, in a democracy, all obliged - to think through those questions ourselves.</p><img src="https://counter.theconversation.com/content/158012/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Stephen John received funding from the British Academy for studying the ethics of Covid-19 vaccination.</span></em></p>Health economists have tools for weighing up the benefits and costs of medical interventions. And they aren’t perfect.Stephen John, Senior Lecturer in Philosophy of Public Health, University of CambridgeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1680232021-10-13T15:53:06Z2021-10-13T15:53:06ZBeyond GDP: here’s a better way to measure people’s prosperity<figure><img src="https://images.theconversation.com/files/426184/original/file-20211013-21-rtnixk.jpg?ixlib=rb-1.1.0&rect=8%2C8%2C5982%2C3970&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/herne-bay-uk-1-april-2021-1955033587">cktravels.com/Shutterstock</a></span></figcaption></figure><p>When Nobel prize-winner <a href="https://www.nobelprize.org/prizes/economic-sciences/1971/kuznets/facts/">Simon Kuznets</a> declared in 1934 that “the welfare of a nation can scarcely be inferred from a measurement of national income”, he likely did not imagine that <a href="https://www.bankofengland.co.uk/knowledgebank/what-is-gdp">gross domestic product</a> (GDP) would still be in use as shorthand for wellbeing and prosperity in the third decade of the 21st century.</p>
<p>Kuznets developed GDP as a means of measuring the impact of the <a href="https://www.britannica.com/event/Great-Depression">great depression</a>. It enabled governments to track any increase or decrease in their nation’s wealth as represented by the value of goods and services produced, and became increasingly important as governments estimated the cost of waging the second world war.</p>
<p>Today, the inadequacy of GDP as a measure of prosperity is clear. <a href="https://www.ons.gov.uk/economy/grossdomesticproductgdp/timeseries/ihyp/pn2">Data from</a> the Office for National Statistics (ONS) for the decade up to 2019 shows that the UK’s annual growth in GDP averaged just below 2%. By comparison, <a href="https://www.ons.gov.uk/peoplepopulationandcommunity/personalandhouseholdfinances/incomeandwealth/bulletins/householdincomeinequalityfinancial/financialyearending2020">income inequality</a> increased by 2.2% over that ten-year period and the ONS’ <a href="https://www.ons.gov.uk/peoplepopulationandcommunity/wellbeing/bulletins/personalandeconomicwellbeingintheuk/february2020">annual average ratings</a> of life satisfaction, happiness and anxiety all deteriorated in the year ending March 2020. This trend of rising income inequality despite GDP growth reveals that not everyone is reaping the benefits of this growth, nor leading a prosperous life, demonstrating that GDP is a poor proxy for citizens’ wellbeing.</p>
<p>With “<a href="https://www.bbc.co.uk/news/56238260">levelling up</a>” and regional prosperity now central to the UK government’s thinking, the <a href="https://www.ucl.ac.uk/bartlett/igp/">Institute for Global Prosperity</a> (IGP) has been working with a team of citizen social-scientists and community organisations in east London to create a completely new definition of prosperity. Rather than the outmoded measures of growth, productivity and income, our research identified 15 headline indicators – a “<a href="https://seriouslydifferent.org/what/prosperity-index">Prosperity Index</a>” – that reflect the actual experience of wellbeing and security for people in these places, and the things that constitute a good quality of life. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/iLom1WlqwS0?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
</figure>
<h2>Redefining prosperity</h2>
<p>In the neighbourhoods around the Royal Docks and the Olympic Park, we discovered that secure livelihoods, access to key public services, good quality and genuinely affordable homes, and a sense of inclusion in the economic and social life of the city are the foundations for a prosperous life. You don’t get any of this from the targets for job creation and road building, which the government believes will lead to improved quality of life. </p>
<p>To build on this research we have begun a new <a href="https://seriouslydifferent.org/igp-stories/rethinking-prosperity-uks-first-longitudinal-study-of-prosperity-based-on-community-led-research">ten-year study</a> to observe how households in 12 post-industrial east London neighbourhoods report on their own prosperity over the coming decade.</p>
<p>The study is mainly focused on neighbourhoods that have been directly impacted by <a href="https://www.queenelizabetholympicpark.co.uk/our-story">Olympic legacy regeneration</a>. This initiative aimed to close the gap in prosperity and prospects between the poorest parts of east London and the wealthiest areas of the city. However, our decade-long study will be the first time people – rather than abstract metrics – have been used to evaluate the impact of regeneration.</p>
<p>Self-reporting will enable us to accurately assess the long-term effects of social, economic and physical change on individual and community prosperity, with the first findings due to be published ahead of the 10th anniversary of the London Olympics in 2022. </p>
<p>We believe the study will challenge the established view that individual prosperity increases in line with job creation and economic growth, and is the first in the UK to track households using the IGP’s local Prosperity Index. Over ten years the study will produce local evidence about prosperity as it is felt and experienced by people, rather than centrally determined statistics about the number of houses built or jobs created.</p>
<h2>Measuring the impact of regeneration</h2>
<p>Although strategic urban regeneration programmes are designed with increasingly complex social and economic objectives in mind – such as tackling unemployment and enhancing economic inclusion – there is a lack of research evaluating the outcomes and impacts of regeneration.</p>
<p>This is partly due to the way the government measures prosperity. Because large infrastructure projects like <a href="https://www.hs2.org.uk/what-is-hs2/">HS2</a>, the <a href="https://www.queenelizabetholympicpark.co.uk/our-story">Olympic Park</a> and <a href="https://www.birmingham.gov.uk/directory_record/264494/big_city_plan">Birmingham’s Big City Plan</a> increase GDP, the UK government can claim economic progress and wealth creation.</p>
<p>Our ten-year study takes a different approach by measuring prosperity based on the priorities of local communities and involving local people to answer three questions:</p>
<p><strong>1.</strong> How are “prosperity gains” from regeneration distributed within and between neighbourhoods?</p>
<p><strong>2.</strong> How is prosperity experienced by people from different backgrounds living in different neighbourhoods?</p>
<p><strong>3.</strong> What are the local, short, medium and long-term issues that enable people to prosper?</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/426190/original/file-20211013-21-ma5tk0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="An autumnal tree reflected in a pond adorned with modern sculpture in a regenerated area of London's urban east end." src="https://images.theconversation.com/files/426190/original/file-20211013-21-ma5tk0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/426190/original/file-20211013-21-ma5tk0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/426190/original/file-20211013-21-ma5tk0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/426190/original/file-20211013-21-ma5tk0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/426190/original/file-20211013-21-ma5tk0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/426190/original/file-20211013-21-ma5tk0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/426190/original/file-20211013-21-ma5tk0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">For many people prosperity is not just about income, but relates to a good quality of life and surrounding environment.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/london-26-november-2017-spitalfields-market-763082194">Eugene Regis/Shutterstock</a></span>
</figcaption>
</figure>
<h2>New ways to level up</h2>
<p>Early <a href="https://www.gov.uk/government/publications/levelling-up-fund-prospectus">evidence</a> suggests the UK government’s approach to levelling up will once again heavily depend on the same tired approaches – like targets for house building and job creation that have failed in the past to resolve regional and local inequalities and address social and economic exclusion.</p>
<p>New levelling up requires a sharing of knowledge. Allowing citizens, local government, businesses and community organisations to collaborate, make decisions, trial radical new approaches and rapidly evaluate change. Shared knowledge creates the opportunity to identify innovative policy options and new pathways to prosperity that are more targeted and more effective at improving quality of life.</p>
<p>Involving local people in the process creates a new way to understand, conceptualise and measure prosperity, inform local decision-making and equip communities with the tools, evidence and confidence they need to monitor progress and hold decision makers to account.</p>
<p>I hope for the best from the imminent <a href="https://www.gov.uk/government/news/government-to-publish-levelling-up-white-paper">levelling-up white paper</a>. But old habits die hard, and the graveyard of prosperity initiatives is already overflowing.</p><img src="https://counter.theconversation.com/content/168023/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Henrietta Moore does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Over the coming decade a new study will put citizens and communities at the centre of efforts to reimagine prosperity and define what constitutes a good quality of life.Henrietta Moore, Director & Founder of the Institute for Global Prosperity, UCLLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1482552020-10-28T17:26:23Z2020-10-28T17:26:23ZSocial activity can be good for mental health, but whether you benefit depends on how many friends you have<figure><img src="https://images.theconversation.com/files/366100/original/file-20201028-17-8cpm3p.jpg?ixlib=rb-1.1.0&rect=92%2C235%2C6724%2C3807&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock/rawpixel</span></span></figcaption></figure><p>We know having friends is generally good for your <a href="https://www.sciencedirect.com/science/article/abs/pii/S1364661317302243">happiness and mental well-being</a>. Likewise, keeping socially active and engaging in <a href="https://www.cambridge.org/core/journals/ageing-and-society/article/critical-review-of-the-literature-on-social-and-leisure-activity-and-wellbeing-in-later-life/2F2A22FDE0F28D435F56D6E69B25FF9E">formal social activities</a> like volunteering has been linked to <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5547666/">better mental health</a>. </p>
<p>But it is also possible to have (or do) too much of a good thing. In a recent <a href="https://link.springer.com/article/10.1007/s00127-020-01961-2">study</a>, we tracked people aged 50 and older from 13 European countries over a two-year period to explore how volunteering, education, involvement in religious or political groups, or participating in sport or social clubs influenced their mental health. </p>
<p>We also looked at how many close social relationships people had — the kind of relationships in which they would discuss important personal matters. We found social activities especially benefited individuals who were relatively socially isolated (with three or fewer close relationships). </p>
<p>For people with a higher number of close relationships, engaging in social activities did not appear to enhance mental health. It could even be detrimental for some. </p>
<h2>Who benefits from social activities</h2>
<p>Social isolation is a major health issue. Apart from compromising the <a href="https://link.springer.com/article/10.1007/s00127-017-1446-1">mental health</a> of isolated individuals, it is linked to many other adverse health outcomes, including <a href="https://www.sciencedirect.com/science/article/pii/S156816371500046X?via%3Dihub">dementia</a>, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4941172/">heart disease and stroke</a> and <a href="https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(17)30075-0/fulltext">premature death</a>. But people who experience social isolation can take steps to improve their situation – for example, by engaging in formal social activities. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/heres-a-mental-health-workout-thats-as-simple-as-abc-98124">Here's a mental health workout that's as simple as ABC</a>
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</em>
</p>
<hr>
<p>Among individuals who were relatively socially isolated (people with three or fewer close relationships), we found more engagement in social activities was linked to improved quality of life and fewer symptoms of depression. </p>
<p>On a population level, our estimates suggest if such people were to engage regularly in social activities, we would see a 5-12% increase in people reporting better quality of life and a 4-8% reduction in people experiencing symptoms of depression. This would be a substantial change to population mental health, given more than 70% of people in our sample (aged 50+, in Europe) have three or fewer close relationships.</p>
<p>There are many reasons being socially active is linked to better mental health and well-being. Social activities can be a way to establish <a href="https://journals.sagepub.com/doi/10.1177/2329496518815868">new relationships</a>, provide opportunities for <a href="https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(19)30230-0/fulltext">social support</a> and foster a sense of <a href="https://journals.sagepub.com/doi/10.1177/1088868314523839">belonging</a> within a community. </p>
<figure class="align-center ">
<img alt="People clearing weeds" src="https://images.theconversation.com/files/365954/original/file-20201027-23-192ozcj.jpg?ixlib=rb-1.1.0&rect=0%2C57%2C4238%2C2764&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/365954/original/file-20201027-23-192ozcj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/365954/original/file-20201027-23-192ozcj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/365954/original/file-20201027-23-192ozcj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/365954/original/file-20201027-23-192ozcj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/365954/original/file-20201027-23-192ozcj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/365954/original/file-20201027-23-192ozcj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Social activities can increase a sense of belonging within a group.</span>
<span class="attribution"><span class="source">Shutterstock/Syda Productions</span></span>
</figcaption>
</figure>
<h2>‘Too much’ social activity</h2>
<p>While research so far has suggested <a href="https://www.sciencedirect.com/science/article/abs/pii/S1364661317302243">having more social relationships is always better</a>, our study indicates this may not be the case. Just like <a href="https://journals.lww.com/journaladdictionmedicine/Abstract/9000/Exercise_Addiction_Prevalence_and_Correlates_in.99216.aspx">too much physical activity</a> can compromise mental health, too much social activity can also backfire. </p>
<p>When we looked at how the study variables (quality of life, symptoms of depression) mapped against our two variables of interest (number of social activities, number of close relationships), we found <a href="https://journals.sagepub.com/doi/full/10.1177/1745691610393523">U-shaped curves</a>. That is, poor mental health at low levels of social activity, good mental health at moderate levels of social activity, and again poor mental health at high levels of social activity.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/five-activities-that-can-protect-your-mental-and-physical-health-as-you-age-133267">Five activities that can protect your mental and physical health as you age</a>
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</em>
</p>
<hr>
<p>Depression appeared to be minimised when people reported having four to five close relationships and being engaged in social activities on a weekly basis. Any more social activity than this, and the benefits started to decline, disappear or turn negative. </p>
<p>This downturn was particularly clear among individuals reporting seven or more close relationships. For these very busy people, engaging in social activities was linked to an increase in depressive symptoms. </p>
<figure class="align-center ">
<img alt="Woman under stress." src="https://images.theconversation.com/files/366104/original/file-20201028-13-vgeoh6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/366104/original/file-20201028-13-vgeoh6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=410&fit=crop&dpr=1 600w, https://images.theconversation.com/files/366104/original/file-20201028-13-vgeoh6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=410&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/366104/original/file-20201028-13-vgeoh6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=410&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/366104/original/file-20201028-13-vgeoh6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=515&fit=crop&dpr=1 754w, https://images.theconversation.com/files/366104/original/file-20201028-13-vgeoh6.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=515&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/366104/original/file-20201028-13-vgeoh6.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=515&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Too much social activity can backfire and lead to exhaustion.</span>
<span class="attribution"><span class="source">Shutterstock/Maksim Shmeljov</span></span>
</figcaption>
</figure>
<p>People typically report having <a href="https://www.sciencedirect.com/science/article/abs/pii/S1364661317302243">an average of five close friends</a>. Extroverts tend to report having more friends, but pay the price of having <a href="https://psycnet.apa.org/record/2011-13632-006">weaker friendships</a>. </p>
<p>Because our social capital (essentially the time we have to devote to social interactions) is <a href="https://www.sciencedirect.com/science/article/abs/pii/S0378873309000033?via%3Dihub">limited</a> and roughly the same for everyone, extroverts in effect prefer to spread their social efforts thinly among many people. This is in contrast to introverts who prefer to focus their social efforts on fewer people to ensure those friendships really work well.</p>
<p>This trade-off is at the core of our capacity to engage in social activities. If you engage in too many, your social time is spread thinly among them. That thin investment might result in you becoming a peripheral member of numerous groups in the community rather than being embedded in the social centre where you can <a href="https://www.bmj.com/content/337/bmj.a2338">benefit from the support</a> of your connections. </p>
<p>Another possibility is that too much social activity becomes a stress factor. This can lead to <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/jopy.12264">negative outcomes</a>, such as social over-commitment, emotional and cognitive exhaustion, fatigue or feelings of guilt when social relationships are not properly nurtured because of limited time.</p>
<p>This raises another important consideration, albeit one we were not able to investigate empirically in our study. Family is an important part of our social world, not least in terms of the emotional and other support it provides. Devoting too much time to community activities means <a href="https://journals.sagepub.com/doi/10.1177/0192513X05284008">less time for family</a>. That bottleneck might well prove to be detrimental to well-being because of the strain it could impose on family relationships.</p>
<p>So what’s the take-home message? Perhaps just this: if you want to live a happy and fulfilled life, be actively social — but do so in moderation.</p><img src="https://counter.theconversation.com/content/148255/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Social relationships are generally good for mental health, but too much social activity can backfire, leading to fatigue and feelings of guilt when there isn’t enough time to nurture relationships.Ziggi Ivan Santini, Postdoctoral associate, University of Southern DenmarkPaul E. Jose, Professor of Psychology, Te Herenga Waka — Victoria University of WellingtonRobin Dunbar, Professor of Evolutionary Psychology, Department of Experimental Psycology, University of OxfordVibeke Jenny Koushede, Head of the Department of Psychology, University of CopenhagenLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1455552020-09-16T19:52:53Z2020-09-16T19:52:53ZIs lockdown worth the pain? No, it’s a sledgehammer and we have better options<figure><img src="https://images.theconversation.com/files/357425/original/file-20200910-23-3qlyk1.jpg?ixlib=rb-1.1.0&rect=0%2C7%2C1000%2C658&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/covid19-quarantine-mental-health-woman-self-1719139918">Shutterstock</a></span></figcaption></figure><p>Melbourne’s lockdown has been described as <a href="https://www.news.com.au/world/coronavirus/global/coronavirus-melbourne-now-under-one-of-the-strictest-lockdowns-in-the-world/news-story/0d341224aed9b5f94d5f81327cd499de">one of the harshest</a> in the world. And jurisdictions outside Australia have taken other measures to limit the spread of COVID-19 once case numbers have eased.</p>
<p>So, in the absence of a reliable COVID-19 treatment or licensed vaccine, is lockdown still worth it?</p>
<p>To answer this, we not only need scientific evidence, we need ethics to decide which factors should weigh most heavily in our decision-making. </p>
<p>Some of these factors are not so obvious.</p>
<h2>How should we measure the impact of COVID-19?</h2>
<p>Clearly, when measuring the impact of COVID-19, cases and deaths are relevant. But a case is not necessarily “bad”. Although estimates vary, <a href="https://www.acpjournals.org/doi/10.7326/M20-3012">about 40-45%</a> of cases are asymptomatic. And it’s not death (in itself) that matters.</p>
<p>Death is bad because it denies us life we could have had. But if you die one second earlier than you could have died, this is not particularly bad. What matters, ethically, is not death <em>per se</em>, but years of life lost.</p>
<p>Even this is not what ultimately matters. If you could live an extra 20 years in a coma, you would hardly call this a win. What matters is years of good (enough) life lost.</p>
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Read more:
<a href="https://theconversation.com/died-from-or-died-with-covid-19-we-need-a-transparent-approach-to-counting-coronavirus-deaths-145438">'Died from' or 'died with' COVID-19? We need a transparent approach to counting coronavirus deaths</a>
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<h2>How much should we pay to save a life?</h2>
<p>In an ideal world, how much it costs to save a life would be irrelevant. But we operate with limited resources. </p>
<p>So, the concept of “<a href="https://link.springer.com/referenceworkentry/10.1007%2F978-1-4419-1005-9_613">Quality Adjusted Life Years</a>” or QALY lets us put a price on life, or at least to how much we will spend on trying to save one. This is a year of life, adjusted for its quality. A year in perfect quality of life is 1, coma is close to zero. </p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/3tDXwKVkn68?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">What’s a QALY?</span></figcaption>
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<p>This idea is understandably controversial, not least because it assigns a lower value to a year spent living with a disability.</p>
<p>Nevertheless, how much quality of life we save is relevant. Before the pandemic, Australia’s public health spending was typically no more than <a href="https://www.sciencedirect.com/science/article/pii/S1098301518302031#bib9">A$50,000 per QALY</a>. </p>
<p>At the end of March, US-based economists <a href="https://theincidentaleconomist.com/wordpress/economic-cost-of-flattening-the-curve/">estimated</a> large-scale COVID-19 measures such as lockdowns cost between US$75,000 and US$650,000 per QALY (about A$102,000 to A$888,000).</p>
<p>Former Australian prime minister Tony Abbott has said <a href="https://www.abc.net.au/news/2020-09-01/tony-abbott-urges-against-coronavirus-restrictions-uk-covid-19/12619264">the cost per QALY</a> Australia has spent so far during the pandemic exceeds our usual standards:</p>
<blockquote>
<p>Even if mandatory shutdown in Australia really was all that avoided the initially predicted 150,000 deaths, that still works out at about $2 million per life saved.
And if the average age of those who would have died is 80, even with roughly 10 years of expected life left, that’s still $200,000 per quality life year or substantially beyond what governments are usually prepared to pay for life-saving drugs.</p>
</blockquote>
<p>But evaluating the cost of lockdown is not so simple. We also have to weigh the potential cost of <em>not</em> having a lockdown.</p>
<p>One goal of lockdown is to protect health systems from being stretched beyond breaking point. If COVID-19 escalates out of control, we would lose many more lives, with vast suffering and grave risks to social stability. The cost in life years and financial losses would be staggering.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/open-letter-from-265-australian-economists-dont-sacrifice-health-for-the-economy-136686">Open letter from 265 Australian economists: don't sacrifice health for 'the economy'</a>
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<p>Initial data also appears to refute the idea <a href="https://ourworldindata.org/covid-health-economy">public health and economic health are fundamentally at odds</a>. A well-controlled virus may keep more money coming in, in the medium term. If lockdown is the only way to achieve control, it may be warranted economically as well as in terms of health. </p>
<p>But if there are other effective health measures that are less economically damaging, they would be preferable. </p>
<p>So how do we account for the cost per QALY of lockdown? This is an uncomfortable and difficult issue. But it needs to be addressed.</p>
<h2>The flipside of lockdown</h2>
<p>While lockdown may limit our exposure to COVID-19, it can be bad for our health.</p>
<p>In lockdown, we’re less likely to access health care for seemingly less urgent issues. Cancer detection rates are currently <a href="https://www.abc.net.au/radio/programs/coronacast/how-coronavirus-is-hiding-a-future-cancer-wave/12662960">well below expected</a>, potentially leading to a rise in preventable deaths. </p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1295360667516571649"}"></div></p>
<p>There have also been concerns about increases in <a href="https://www.smh.com.au/politics/federal/suicide-prevention-australia-warns-of-third-wave-of-deaths-in-pandemic-20200909-p55tw3.html">suicide</a>, <a href="https://theconversation.com/worried-about-your-drinking-during-lockdown-these-8-signs-might-indicate-a-problem-136289">alcohol abuse</a>, other <a href="https://www.sciencedirect.com/science/article/pii/S2215036620303084">mental health</a> issues, and <a href="https://www.smh.com.au/national/nsw/covid-19-recession-is-trapping-women-in-violent-households-20200912-p55uyn.html">domestic violence</a>.</p>
<p>We may not know the mental and social toll of lockdown for some time. But we should attempt to include these effects in our assessment. Poor mental health outcomes can shorten lives, or reduce their quality significantly. Poor social outcomes can impact for generations. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/covid-lockdowns-have-human-costs-as-well-as-benefits-its-time-to-consider-both-137233">COVID lockdowns have human costs as well as benefits. It's time to consider both</a>
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<hr>
<h2>What alternatives achieve the same goal for a lower cost?</h2>
<p>We should not merely compare lockdown to doing nothing, but weigh it against other strategies. Here we can learn from other countries and how other policies might replace lockdown once numbers are manageable. </p>
<p>Although <a href="https://www.tandfonline.com/doi/full/10.1080/14494035.2020.1785195">South Korea</a>’s vigorous track-and-trace program <a href="https://www.bbc.co.uk/news/world-asia-51733145">raised privacy concerns</a>, it targeted social distancing to keep deaths to <a href="https://coronavirus.jhu.edu/map.html">around 370</a> so far. </p>
<p><a href="https://www.sciencedirect.com/science/article/pii/S2211883720300873">Iceland</a>, <a href="https://www.tropicalmedicine.ox.ac.uk/news/coronavirus-how-overreaction-made-vietnam-a-virus-success">Vietnam</a>, <a href="https://www.liebertpub.com/doi/10.1089/OMI.2020.0077">Singapore</a> and <a href="https://blogs.bmj.com/bmj/2020/07/21/what-we-can-learn-from-taiwans-response-to-the-covid-19-epidemic/">Taiwan</a> used methods such as mass testing, contact tracing, and strictly enforced self-isolation. In Singapore, breaches were punished with <a href="https://time.com/5811161/singapore-coronavirus-stand-too-close-jail/">up to six months’ jail</a>.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/another-day-another-hotel-quarantine-fail-so-what-can-australia-learn-from-other-countries-144804">Another day, another hotel quarantine fail. So what can Australia learn from other countries?</a>
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<p>True, there have been some costly mistakes. <a href="https://www.bbc.co.uk/news/world-asia-52232147">Singapore</a>, for example, allowed returning citizens to quarantine with other family members who were not themselves isolated, prompting a partial lockdown. Nevertheless, these countries appear to have been able to regain control.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1267731167920431105"}"></div></p>
<p>Even if the number of life years saved by these alternative strategies and lockdown is the same, these alternative strategies, when implemented well, are preferable. That’s because they impose fewer costs: economically, socially, and in lost freedom. </p>
<h2>Which value do you value?</h2>
<p>The use of QALYs as an outcome measure faces staunch criticism. Often, there is an irresolvable conflict between maximising QALYs and giving every person an equal chance at living their longest, best quality life.</p>
<p>Imagine a doctor is faced with the choice of giving their last ICU bed to a person who is 30, in complete health, with two children and job, or an 85-year-old with advanced dementia, who does not recognise herself or her family. </p>
<p>A QALY-maximisation approach says admit the 30-year-old; if you favour equality, toss a coin. The COVID pandemic forces us to get off the fence on whether all lives are equally valuable, or equally worth saving.</p>
<p>Then there’s fairness or justice (or what philosophers call “<a href="https://iep.utm.edu/desert/">desert</a>”). Young people have had less good life than older people, and have more ahead of them. They are at little risk of dying. Yet during the pandemic, they have had to make significant sacrifices in the quality of their lives, whether that’s through job losses, lost opportunities or curtailment of movement. If we value “desert”, we value the idea young people deserve to be favoured.</p>
<p>This takes us to the value of liberty. Lockdown, curfew and restriction of freedom of movement, association and protest are arguably among the most severe restrictions possible. So we should be restricting people’s liberty as least as possible, using this strategy sparingly, locally, and for a specific purpose. </p>
<h2>So, where does this take us?</h2>
<p>To answer whether lockdown is worth the cost, we need to agree on how we should evaluate outcomes (cases, lives, life years lost, QALYs) and what other ethical principles matter (equality, liberty, desert).</p>
<p>The right strategy will vary. A short, sharp, early lockdown might stamp out the virus and allow life for everyone to continue as normal and preserve the economy. Longer lockdown may be necessary when the health system is threatened; this might prevent huge loss of life across all diseases. A lockdown to give time to establish other more nuanced systems to be put in place effectively also has value. </p>
<p>But lockdown is a sledgehammer of a solution. For most countries now, other strategies are likely to be of more value to the community.</p><img src="https://counter.theconversation.com/content/145555/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julian Savulescu receives funding from the Uehiro Foundation on Ethics and Education and the Wellcome Trust. </span></em></p>Lockdown is a drastic solution to limit the impact of COVID-19 and has many costs, as this long read explains.Julian Savulescu, Visiting Professor in Biomedical Ethics, Murdoch Children's Research Institute; Distinguished Visiting Professor in Law, University of Melbourne; Uehiro Chair in Practical Ethics, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1429562020-08-31T19:33:07Z2020-08-31T19:33:07ZWhy sign language is vital for all deaf babies, regardless of cochlear implant plans<figure><img src="https://images.theconversation.com/files/353720/original/file-20200819-25043-r3r9zy.jpg?ixlib=rb-1.1.0&rect=0%2C14%2C4590%2C3529&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Learning how to say 'more.'</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/african-american-mother-playing-with-baby-boy-royalty-free-image/138307713">JGI/Jamie Grill via Getty Images</a></span></figcaption></figure><p>When their newborn failed a hearing test, Quinn and Kai were distraught. Their pediatrician reassured them their baby was a candidate for a <a href="https://www.fda.gov/medical-devices/cochlear-implants/what-cochlear-implant#a">cochlear implant</a> – an electronic device consisting of an external part worn behind the ear and an internal part surgically placed under the skin – that could <a href="https://www3.gallaudet.edu/clerc-center/our-resources/cochlear-implant-education-center/navigating-a-forest-of-information/what-is-a-cochlear-implant.html">partially restore hearing</a> through electrical stimulation of the auditory nerve. </p>
<p>“We were told Casey would go to a mainstream school and learn to hear and talk just like any other kid,” Quinn told us. “The doctors said to speak to him as if he were hearing and not to learn sign language, because it would inhibit his spoken language development.” A few years later, Casey could speak some words but fell short of language milestones. Quinn and Kai’s story is one that is all too familiar to <a href="https://doi.org/10.1017/jse.2014.19">parents of deaf children</a>. </p>
<p>As <a href="https://scholar.google.com/citations?hl=en&user=S_q9BKsAAAAJ">researchers of language and literacy</a> in <a href="https://scholar.google.com/citations?user=BaAF_MEAAAAJ&hl=en&oi=ao">deaf education</a>, we regularly see implanted deaf children like Casey arrive at school with limited language and reasoning skills.</p>
<p>September is International Deaf Awareness Month. We want to debunk common misconceptions that can – and often do – harm deaf children.</p>
<h2>Cochlear implant ‘success’</h2>
<p>Cochlear implants are not a proven substitute for natural hearing. After surgery, children must undergo ongoing, intensive therapy to train the brain to make meaning of the sound it hears. Implant users’ understanding of speech is highly variable and <a href="https://doi.org/10.1146/annurev-neuro-080317-061513">declines substantially when talking or other environmental noise is present</a>. </p>
<p>Research shows cochlear implant success is uneven. Although children implanted at younger ages have higher speech and language scores than those implanted at older ages, the majority still <a href="https://doi.org/10.3389/fpsyg.2020.01407">perform “below” to “well below” average</a>. In a 2020 study of 136 children with cochlear implants in grades 3-6, teachers reported <a href="https://siwi.utk.edu/wp-content/uploads/Summary-Demographic-Data-Year-1-3.pdf">half had difficulty expressing “many to most” concepts in spoken English, and 13% did not speak English at all</a>.</p>
<h2>Sign language and speech development</h2>
<p>It is a misconception that learning sign language hinders spoken language development for implanted children. <a href="https://doi.org/10.1017/S0022215112001909">Research shows the opposite to be true</a>. Deaf children of deaf parents, whose first language is sign language, end up having better spoken language skills once they are implanted than deaf children of hearing parents <a href="https://doi.org/10.1093/deafed/ent045">who did not learn sign language</a>. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/352998/original/file-20200814-16-l2nthd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A twelve year old girl dressed in a red top and an nine year old girl dressed in a lilac top communicate with sign language. The younger girl is fitted with a cochlear implant and the older girl wears a voice amplifier." src="https://images.theconversation.com/files/352998/original/file-20200814-16-l2nthd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/352998/original/file-20200814-16-l2nthd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/352998/original/file-20200814-16-l2nthd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/352998/original/file-20200814-16-l2nthd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/352998/original/file-20200814-16-l2nthd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/352998/original/file-20200814-16-l2nthd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/352998/original/file-20200814-16-l2nthd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Cochlear implants are most successful for children who learn sign language at an early age.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/deaf-children-with-hearing-aids-in-a-school-class-royalty-free-image/1094646216">Brian Mitchell/Corbis Documentary via Getty Images</a></span>
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<p>Research also shows <a href="https://siwi.utk.edu/wp-content/uploads/Summary-Demographic-Data-Year-1-3.pdf">a relationship between sign language and spoken English in school-aged children with cochlear implants</a>: The children who scored highly in sign language were the same ones who scored highly in English. And the children with weak sign language skills also struggled with spoken English.</p>
<p>In fact, sign language is so good for the developing brain some <a href="https://www.babysignlanguage.com/">hearing parents teach it to their hearing children</a> to boost brain development and jump-start communication before speech. </p>
<h2>The window of opportunity for language development</h2>
<p>The idea that sign language can be introduced later, if a cochlear implant is not successful, ignores the basic facts of language development.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/352994/original/file-20200814-14-7y7y43.jpg?ixlib=rb-1.1.0&rect=8%2C25%2C5565%2C3707&q=45&auto=format&w=1000&fit=clip"><img alt="A white mother signing to her attentive baby who is mimicking the hand gesture" src="https://images.theconversation.com/files/352994/original/file-20200814-14-7y7y43.jpg?ixlib=rb-1.1.0&rect=8%2C25%2C5565%2C3707&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/352994/original/file-20200814-14-7y7y43.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/352994/original/file-20200814-14-7y7y43.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/352994/original/file-20200814-14-7y7y43.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/352994/original/file-20200814-14-7y7y43.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/352994/original/file-20200814-14-7y7y43.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/352994/original/file-20200814-14-7y7y43.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Babies’ brains need language to develop properly.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/woman-signing-the-word-dad-in-american-sign-royalty-free-image/89839900">Huntstock via Getty Images</a></span>
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<p>In the first years of life, children absorb language like sponges, as long as social interactions are accessible. The longer a child waits for meaningful language input, the greater the <a href="https://doi.org/10.1017/S0142716407070294">risk of never fully acquiring language</a>. The first five years are a critical period for acquisition.</p>
<p>Research shows that deaf children exposed to sign language later – after unsuccessfully developing spoken language – demonstrate <a href="https://doi.org/10.1017/S1366728917000724">rapid word learning but stop short of attaining complex grammatical structures</a>. </p>
<p>The long-term implications of language deprivation are quite serious. A wide range of <a href="https://doi.org/10.1016/j.amepre.2019.04.001">adverse childhood experiences</a> are known to be associated with adult disease and health problems. Communication exclusion and neglect experienced by deaf children create toxic stress that can trigger physiological and psychological responses. </p>
<p>Limited access to communication in childhood is <a href="https://doi.org/10.1016/j.amepre.2020.04.016">linked to heart problems, lung disease, diabetes, hypertension, depression and anxiety disorders</a> as well as <a href="https://doi.org/10.1093/deafed/enj042">chronic mental illness</a>. </p>
<p>In severe cases, individuals may be institutionalized with language deprivation syndrome. They struggle with <a href="https://doi.org/10.1007/s00127-017-1351-7">social and emotional skills, memory, problem solving and judgment</a>, all of which can impact their ability to live independently.</p>
<h2>Audism in the medical community</h2>
<p>Just as racism is at the root of structural inequalities towards Black, Indigenous and other people of color, <a href="https://doi.org/10.1177/0160597613481731">audism</a> is institutionalized discrimination against deaf people. The medical community is steeped in <a href="https://doi.org/10.1007/s10995-020-02989-1">hearing-at-all-costs attitudes and beliefs</a> that can <a href="https://doi.org/10.1007/s10995-017-2287-y">lead to language deprivation</a> in deaf children. </p>
<p>Doctors are trained to treat and remedy specific physical ailments. Unfortunately, their <a href="https://doi.org/10.1007/s40670-014-0073-7">training is unlikely to include</a> topics of early language acquisition and sign language. </p>
<p>When a deaf baby is born, parents receive the bulk of their <a href="https://doi.org/10.1093/deafed/enq004">information and advice from the medical community</a> – audiologists, ENTs and pediatricians. These doctors too often <a href="https://doi.org/10.1177/0162243913512538">discourage sign language</a>, suggesting it impedes speech development. As a result, deaf children risk growing up without a solid foundation in any language, which is <a href="https://www.routledge.com/Language-Deprivation-and-Deaf-Mental-Health/Glickman-Hall/p/book/9781138735392">dehumanizing and reduces their quality of life</a>. </p>
<h2>The way forward</h2>
<p>We believe the medical community must be educated about <a href="https://doi.org/10.1007/s10995-017-2287-y">deaf children’s need for sign language education</a>. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/3o8Z2lzS764?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">A two-year-old deaf girl chatting with her mother in British Sign Language.</span></figcaption>
</figure>
<p>Families can learn sign language along with their babies. It takes two years to acquire conversational skills and five to seven years to develop language fluency, which perfectly matches a child’s language development timeline. </p>
<p>Free services are available to families, including home visits, sign language classes and deaf mentorship. <a href="https://www.ceasd.org/administrative-educational-members/">Schools for the deaf</a> are a great resource, as are civil rights organizations like the <a href="https://www.nad.org/">National Association of the Deaf</a>. For deaf children and their families, taking part in the deaf community can deepen their understanding and appreciation of the deaf experience and increase their linguistic role models, which in turn <a href="https://doi.org/10.1353/sls.2015.0006">provides a long-term educational advantage</a>.</p>
<p>The catastrophe of language deprivation is entirely preventable with early sign language exposure. Lack of awareness is all that stands in the way.</p>
<p>[<em>Understand new developments in science, health and technology, each week.</em> <a href="https://theconversation.com/us/newsletters/science-editors-picks-71/?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=science-understand">Subscribe to The Conversation’s science newsletter</a>.]</p><img src="https://counter.theconversation.com/content/142956/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The research reported here was supported by the Institute of Education Sciences, U.S. Department of Education, through Grant R324A170086 to the University of Tennessee. The opinions expressed are those of the authors and do not represent views of the Institute or the U.S. Department of Education.</span></em></p><p class="fine-print"><em><span>Kristina Bernhardt and Leala Holcomb do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Teaching deaf babies sign language improves the success of cochlear implants – and also safeguards their long-term physical and mental health.Kimberly A. Wolbers, Professor of Deaf Education, University of TennesseeLeala Holcomb, Postdoctoral Researcher of Language and Literacy, University of TennesseeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1139452019-04-12T09:45:11Z2019-04-12T09:45:11ZHyperhidrosis: the excessive sweating condition that could ruin your life<figure><img src="https://images.theconversation.com/files/268579/original/file-20190410-2931-1akbpcw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/man-hyperhidrosis-sweating-very-badly-under-767078806?src=h1QK-SSyyTvRqKN8eUTuIQ-1-14">Koldunova Anna/Shutterstock.com</a></span></figcaption></figure><p>Most people sweat when they exercise or the weather is hot. But some people sweat far more than this. Hyperhidrosis – excessive sweating – can be a devastating condition that has a huge impact on quality of life, and even prevent those who have it from carrying out everyday tasks. For some it has affected their relationships. Others are so embarrassed by their sweating that they feel unable to leave their house.</p>
<p>Sweating is a normal physiological process that helps the body to regulate its temperature. When we get too hot or exercise, sweat evaporates from the skin and has a cooling effect. People often also notice they sweat when they are anxious or are in a situation that makes them nervous. But for the roughly 3% of people who have <a href="http://www.bad.org.uk/shared/get-file.ashx?id=93&itemtype=document">hyperhidrosis</a>, sweating can be almost constant.</p>
<p>The most common areas of the body affected by hyperhidrosis are hands, feet, underarms, face, and head, although other areas can be affected too. Some people with hyperhidrosis sweat all over, rather than in just some parts of the body. People with hyperhidrosis often sweat in situations where other people don’t, for example, when the weather is cold. </p>
<p>It is not known what causes hyperhidrosis, although it is thought that the nerves that usually make us sweat become over-active. Hyperhidrosis often starts in childhood or adolescence, but can start at any time during life. There is probably a genetic element as well, as there is often a family history in people who have excessive sweating of the hands.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/268582/original/file-20190410-2924-zpb3nz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/268582/original/file-20190410-2924-zpb3nz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/268582/original/file-20190410-2924-zpb3nz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/268582/original/file-20190410-2924-zpb3nz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/268582/original/file-20190410-2924-zpb3nz.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/268582/original/file-20190410-2924-zpb3nz.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/268582/original/file-20190410-2924-zpb3nz.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Hyperhidrosis.</span>
<span class="attribution"><span class="source">Werayuth Tes/Shutterstock.com</span></span>
</figcaption>
</figure>
<h2>Few answers</h2>
<p>Without a clear understanding of what causes hyperhidrosis, it is more challenging to find effective treatments. That is why colleagues and I have been <a href="https://www.dmu.ac.uk/about-dmu/news/2018/january/dmu-begins-research-into-debilitating-condition-that-causes-excessive-sweating.aspx">researching the condition</a>. We asked people with hyperhidrosis and healthcare professionals who treat them what questions they would like research to answer. We had 268 people come forward to suggest nearly 600 research questions.</p>
<p>We found that hyperhidrosis has a wide range of severity. At the mild end of the spectrum, the effects may be minimal – a small inconvenience or minor embarrassment. But as severity increases, the impact on quality of life becomes much more substantial. And the condition can have a huge impact on quality of life, affecting people’s career choices and leading to social isolation. For example, some people have such sweaty hands that it makes it difficult to hold a pen or use a keyboard.</p>
<p>People with hyperhidrosis often have anxiety in work situations such as job interviews or meetings where they might be expected to shake hands. Their social life can also be affected, with many people feeling embarrassed by their sweating, and some people have avoided forming intimate relationships due to this. Some people have to change their clothes several times.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/268580/original/file-20190410-2909-mo5yt3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/268580/original/file-20190410-2909-mo5yt3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/268580/original/file-20190410-2909-mo5yt3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/268580/original/file-20190410-2909-mo5yt3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/268580/original/file-20190410-2909-mo5yt3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/268580/original/file-20190410-2909-mo5yt3.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/268580/original/file-20190410-2909-mo5yt3.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Hyperhidrosis: a nightmare in business.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/hyperhidrosis-wet-hand-sweat-syndrome-695565307?src=nwfeUFec8kiGYeTSdnthGg-1-0">Quality Stock Arts/Shutterstock.com</a></span>
</figcaption>
</figure>
<p>Many people with hyperhidrosis don’t seek medical help due to the stigma of the condition. They may not even know it is a medical condition at all. Those that do often report difficulties in being taken seriously, lack of access to specialists, and treatment being considered a <a href="https://www.cambridgeshireandpeterboroughccg.nhs.uk/EasySiteWeb/GatewayLink.aspx?alId=9620">low priority</a>.</p>
<h2>Available treatment</h2>
<p>There are a <a href="https://hyperhidrosisuk.org/treatment-options/">number of treatments</a> available for hyperhidrosis, which depend upon the area of the body affected. Temporary treatments include:</p>
<ul>
<li>Strong anti-perspirants containing aluminium chloride </li>
<li>Iontophoresis, where the affected areas are placed in water and a low voltage electrical current passed through it</li>
<li>Botox, which works by blocking a chemical at the nerve endings, so it can’t activate the sweat glands</li>
<li>Oral medications, called anti-cholinergics, which also work by blocking the nerve endings, throughout the body</li>
</ul>
<p>But these are all temporary, and do not work for everyone. The anti-perspirants can cause skin irritation, and oral medication blocks nerve endings throughout the body, so can cause side effects such as a dry mouth and problems urinating. Botox and iontophoresis, meanwhile, need to be repeated regularly and can be expensive.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/268583/original/file-20190410-2898-1ogjs5n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/268583/original/file-20190410-2898-1ogjs5n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/268583/original/file-20190410-2898-1ogjs5n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/268583/original/file-20190410-2898-1ogjs5n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/268583/original/file-20190410-2898-1ogjs5n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/268583/original/file-20190410-2898-1ogjs5n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/268583/original/file-20190410-2898-1ogjs5n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">The sweating can be constant, and occur in unusual places on the body.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/close-shot-african-black-womans-sweaty-1098119765?src=vj79qcWWls6TxR4fO82wUA-2-45">Red Confidential/Shutterstock.com</a></span>
</figcaption>
</figure>
<p>There are also some more permanent solutions available. Some sufferers have had surgery to remove or destroy sweat glands in a localised area (such as the armpits) or endoscopic thoracic sympathectomy (ETS), where the nerves that control sweating are cut. ETS is effective in reducing the sweating of the areas intended, but can lead to very serious side effects such as damage to nerves or organs. Most patients end up with some level of sweating in other areas (<a href="https://www.ncbi.nlm.nih.gov/pubmed/15276490">compensatory sweating</a>) and this can be worse than the original problem, so this surgery is generally only used as a last resort. A newer <a href="https://hyperhidrosisuk.org/treatment-options/miradry/">permanent treatment</a> uses electromagnetic energy to destroy sweat glands.</p>
<p>Despite being a common skin condition, hyperhidrosis is not widely known about, and research is very poorly funded. Raising awareness is key if people are to feel comfortable enough to come forward to ask for help and advice.</p><img src="https://counter.theconversation.com/content/113945/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Louise Dunford receives funding from The UK Dermatology Clinical Trials Network. </span></em></p>For the roughly 3% of people who have this condition, sweating can be almost constant.Louise Dunford, Director of the Institute of Allied Health Sciences Research, De Montfort UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1121212019-03-14T21:39:10Z2019-03-14T21:39:10ZCancer pain can be eased by palliative radiation therapy<figure><img src="https://images.theconversation.com/files/263727/original/file-20190313-123531-1bdcgmw.jpg?ixlib=rb-1.1.0&rect=143%2C83%2C4892%2C2937&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Palliative radiation therapy is effective regardless of a patient’s original cancer site (for example breast, lung or kidney) and is usually delivered in one to 10 daily doses. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Radiation therapy is, along with chemotherapy and surgery, one of the three main components of cancer treatment. It is often misunderstood and <a href="https://doi.org/10.1007/s13187-013-0598-2">carries negative connotations</a>. </p>
<p>As radiation oncologists and assistant professors at Albert Einstein College of Medicine in New York and the University of British Columbia, we frequently work to dispel patients’ concerns about radiation — concerns that radiation treatment will make them radioactive (it won’t) or cause significant pain. In fact, patients don’t feel anything when the radiation machine is on, although manageable side-effects can develop during the course of treatment.</p>
<p>Many patients receive radiation as part of a treatment to try to cure their cancer, but around half of radiation treatments are given with “palliative intent.” The goal of palliative radiation therapy is not to eliminate the cancer, but to alleviate symptoms like pain, bleeding or shortness of breath — to improve a patient’s quality of life.</p>
<p>Palliative radiation is effective regardless of a patient’s original cancer site (for example breast, lung or kidney) and is usually delivered in one to 10 daily doses. </p>
<p>However, despite an <a href="https://europepmc.org/articles/PMC1479480">estimated 60 to 90 per cent chance of improving symptoms</a>, palliative radiation remains <a href="http://dx.doi.org/10.1016/j.ijrobp.2015.09.045">underused around the world</a>.</p>
<h2>Doctors failing to refer patients</h2>
<p>Sometimes, patients may not wish to undergo radiation treatment if offered, for example because they live far away from a radiation therapy facility. However, some patients who could potentially benefit from palliative radiation are <a href="https://doi.org/10.1186/1748-717X-7-167">not referred by their doctors in the first place</a>.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/263728/original/file-20190313-123538-u56pg0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/263728/original/file-20190313-123538-u56pg0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/263728/original/file-20190313-123538-u56pg0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/263728/original/file-20190313-123538-u56pg0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/263728/original/file-20190313-123538-u56pg0.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/263728/original/file-20190313-123538-u56pg0.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/263728/original/file-20190313-123538-u56pg0.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Patients who engage in their own care decisions report better outcomes.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>In order to understand factors that contribute to physicians’ decisions to refer patients for palliative radiation, we <a href="https://doi.org/10.1016/j.clon.2018.09.009">performed a systematic review of the peer-reviewed, published literature</a> to understand factors that might be preventing doctors from referring patients for palliative radiation therapy. Our colleague, <a href="https://fammedmcmaster.ca/our-people/faculty-directory/bios/michelle-howard">Dr. Michelle Howard</a> of McMaster University in Hamilton, Ontario, helped us design the study method.</p>
<p><a href="http://dx.doi.org/10.4135/9781506335193.n29">A systematic review</a> is a research method that finds all available publications on a particular subject, evaluates the quality of the data and synthesizes it to reach conclusions. </p>
<p>In our review, we identified 11 papers that asked doctors from Canada, Australia, The Netherlands and the United States about their knowledge of palliative radiation therapy and the factors they consider when deciding to refer patients (or not) for treatment. </p>
<h2>Patients and doctors lack knowledge</h2>
<p>The doctors in the papers we reviewed often mentioned that concerns about travel costs and inconvenience affected their referral decisions. </p>
<p>They also commonly cited concerns about side-effects of radiation therapy, even though radiation oncologists know to design palliative treatments so as to avoid causing new problems while helping the main symptoms being treated. </p>
<p>Many of them also mentioned uncertainty about the benefits of palliative radiation when making referral decisions. </p>
<p>These findings suggest a lack of knowledge about this treatment even among physicians who closely work with cancer patients. Many of the surveyed doctors expressed a desire for more teaching and expert-level input from radiation oncologist colleagues to help bridge the gap in understanding.</p>
<p>Surprisingly, only two of the surveys asked doctors whether patient preferences were a major factor in referral decisions. However, when asked, this was the most significant factor affecting referrals, with around 80 per cent of doctors saying patient preferences influenced their decisions. </p>
<h2>‘Palliative’ is not giving up hope</h2>
<p>Medical information is more accessible today than ever before both online and through popular media. Still, some medical treatments are misunderstood by the general public and even health-care professionals. </p>
<p>Palliative care itself is one example — a specialty devoted to alleviating symptoms (like pain or nausea) when a disease cannot be cured. Unfortunately, many people — even some doctors — associate the term with end-of-life care and so they believe that <a href="https://bit.ly/1T3aScZ">undergoing palliative care means giving up hope or neglecting “real” treatment</a>. In fact, when MD Anderson Cancer Center changed their department’s name from “palliative care” to the less-ominous “supportive care,” <a href="https://doi.org/10.1634/theoncologist.2010-0161">they saw a dramatic increase in referrals to the department</a>.</p>
<p>While end-of-life care is an important part of palliative medicine, the two are not entirely synonymous. Early discussion around patients’ values, goals and non-curative treatments can both <a href="https://www.nejm.org/doi/full/10.1056/NEJMoa1000678">help people live better and longer</a>. </p>
<h2>Helping patients advocate for themselves</h2>
<p>It is important for patients to understand both the nature of palliative care and the nature and benefits of radiation therapy. This is because patients who are engaged in their own care decisions report better experiences interacting with the health-care system and <a href="http://dx.doi.org/10.1377/hlthaff.2012.1061">better health outcomes</a>. </p>
<p>With better understanding among patients, caregivers and physicians of how radiation therapy can help alleviate pain and other symptoms caused by cancer, we can ensure that patients can advocate for themselves and engage their doctors to access the best care available. </p>
<p>Discuss your new understanding of palliative care with your doctor and encourage your friends and family to do the same. Simple acts like this can ensure that everyone gets the best care possible when the time comes.</p><img src="https://counter.theconversation.com/content/112121/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jonathan Klein has received funding from the Ontario Ministry of Health and Long Term Care, Canadian Institutes of Health Research, and Terry Fox Foundation. </span></em></p><p class="fine-print"><em><span>Jonathan Livergant does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Palliative radiation therapy can improve a cancer patient’s life, by alleviating pain and other symptoms. Unfortunately, some doctors associate the term with end-of-life care and fail to refer people.Jonathan Klein, Radiation Oncologist and Assistant Professor, Albert Einstein College of MedicineJonathan Livergant, Radiation Oncologist at B.C. Cancer, Palliative Medicine Physician at Victoria Hospice. Clinical Instructor, University of British ColumbiaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1068132018-11-13T12:50:03Z2018-11-13T12:50:03ZLife in South Africa’s economic hub is improving – but big challenges remain<figure><img src="https://images.theconversation.com/files/245202/original/file-20181113-194491-105ms01.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The Gauteng City-Region is home to a quarter of South Africa's population.</span> <span class="attribution"><span class="source">Mark Momberg</span></span></figcaption></figure><p>More than 14 million people live in South Africa’s economic hub, the Gauteng City-Region. That’s 25% of the country’s population. </p>
<p>A lot of media reporting and public discussion about Gauteng is negative. Service delivery protests <a href="https://www.timeslive.co.za/news/south-africa/2017-10-24-gauteng-accounts-for-most-service-delivery-protests-research/">are common</a>, high <a href="http://www.statssa.gov.za/?p=11632">crime rates</a> worry residents and the province’s economy is <a href="http://www.gauteng.gov.za/government/departments/provincial-treasury/Documents/Socio-Economic%20Reveiw%20and%20Outlook%202018.pdf">under pressure</a>.</p>
<p>These challenges are real, and play a big role in people’s lives. But new research from the Gauteng City-Region Observatory (GCRO) suggests there’s a more nuanced story to tell about Gauteng. Data collected for the observatory’s fifth <a href="http://www.gcro.ac.za/research/project/detail/quality-of-life-survey-v-201718/">Quality of Life survey</a> (2017/18) reveal that, in many ways, Gauteng residents’ lives are improving. </p>
<p>Overall quality of life in Gauteng is getting better. An index based on the data, measuring quality of life out of 10, has climbed slowly but steadily since 2011. In addition, in this survey people showed greater tolerance, as well as a much stronger sense of community.</p>
<h2>The research</h2>
<p>The GCRO is an independent research organisation, which generates data and analysis to help inform development and decision making in the Gauteng City-Region. It is a partnership between the provincial government, organised local government, the University of the Witwatersrand, and the University of Johannesburg.</p>
<p>The survey involved 24 889 adult residents of Gauteng, with a minimum of 30 respondents in each of the province’s 529 wards. </p>
<p>The latest survey collected a wealth of complex data. Respondents answered more than 240 questions, about a third of which were unchanged from previous iterations of the survey. In this way, we are able to gain insights into how the province has changed over time – and can see that there have been significant, often positive shifts in how people view the quality of their lives. </p>
<p>Of course, problems remain: more respondents report experiencing crime, and a growing proportion don’t believe that trust is possible across race groups.</p>
<p>The latest data offer a vital resource for understanding Gauteng’s multi-faceted challenges. It is also a useful way for the government, policy makers, academics, civil society and ordinary people to start coming up with creative solutions.</p>
<h2>Quality of life in the province</h2>
<p>The research measures quality of life by more than just material factors like household income and access to basic services. As with <a href="http://www.oecdbetterlifeindex.org/">similar</a> <a href="https://www.eurofound.europa.eu/surveys/european-quality-of-life-surveys">major</a> <a href="http://www.qualityoflifeproject.govt.nz/">international</a> projects, less material, more subjective factors – opinions and feelings about governance, community, family and individual well-being– are also considered. </p>
<p>A total of 58 variables were selected to generate an overall Quality of Life index. These covered ten dimensions: global life satisfaction, family, community, health, dwelling, infrastructure, connectivity, work, security and socio-political attitudes. </p>
<p>This index provides a simple but strongly multi-dimensional score out of 10, where “0” indicates lowest quality of life and “10” the highest quality of life.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/245240/original/file-20181113-194491-1b35jn7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/245240/original/file-20181113-194491-1b35jn7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/245240/original/file-20181113-194491-1b35jn7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/245240/original/file-20181113-194491-1b35jn7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/245240/original/file-20181113-194491-1b35jn7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/245240/original/file-20181113-194491-1b35jn7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/245240/original/file-20181113-194491-1b35jn7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/245240/original/file-20181113-194491-1b35jn7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Quality of Life index scores over time.</span>
<span class="attribution"><span class="source">GCRO</span></span>
</figcaption>
</figure>
<p>Gauteng’s Quality of Life index score has shown sustained improvement over the past four iterations of the survey. It has risen from 6.02 in 2011 to 6.30 in 2017/18. This suggests that overall quality of life in Gauteng is improving over time.</p>
<h2>Protest, crime and safety</h2>
<p>The proportion of respondents who participated in a protest in the previous year has doubled from 4% in 2013/14 to 8% in 2017/18. A quarter of respondents reported protest in their community in the past year. Of these protests, 90% involved some form of violence. Most were related to frustrations around service provision - particularly electricity.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/245241/original/file-20181113-194500-1gc3937.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/245241/original/file-20181113-194500-1gc3937.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/245241/original/file-20181113-194500-1gc3937.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/245241/original/file-20181113-194500-1gc3937.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/245241/original/file-20181113-194500-1gc3937.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/245241/original/file-20181113-194500-1gc3937.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/245241/original/file-20181113-194500-1gc3937.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/245241/original/file-20181113-194500-1gc3937.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Protest participation over time by municipality.</span>
<span class="attribution"><span class="source">GCRO</span></span>
</figcaption>
</figure>
<p>A quarter of all respondents were victims of crime in the past year. That’s an increase from one in five in 2015/16. Additionally, 44% of respondents felt crime in their area had worsened over the past year, up from 41% in 2015/16. </p>
<p>Despite these negative results, 81% of respondents reported feeling safe in their homes, an encouraging rise from 75% in 2015/16. The proportion of respondents who felt that crime was the biggest problem in their community dropped from 37% in 2015/16, to 32% in 2017/18. </p>
<h2>Economic concerns</h2>
<p>Meanwhile, national economic challenges and growing inequality also affected Gauteng’s residents. Satisfaction with the government’s efforts to grow the economy dropped to 19% (2017/18) from an already low 23% in 2015/16. </p>
<p>Nearly one in four respondents lived in a household where someone – an adult or a child – had skipped a meal in the past year because there wasn’t enough money for food. This is a substantial increase over previous years, and one felt disproportionately by the province’s poorest residents.</p>
<p>Satisfaction with government itself, and basic services like water, sanitation and energy, had increased since 2015/16. However, satisfaction with key social services had fallen. For instance, 65% of those who used public health care were satisfied with the services they received in 2015/16. This dropped to 57% in 2017/18. </p>
<p>In terms of public education, 9% of respondents with school-going children reported that they had no local public school. Of respondents who did have local public schools, 75% reported that they were satisfied with them.</p>
<h2>Social cohesion and tolerance</h2>
<p>Positive trends included respondents being substantially more trusting of their communities. Tolerant attitudes are spreading: the proportion of respondents who believed violence towards gays and lesbians is acceptable has dropped to 6% from 14% in 2015/16. </p>
<p>The proportion who believed all foreigners should be sent home has dropped from 23% to 17%. This is particularly encouraging given the province’s history of <a href="http://www.migration.org.za/wp-content/uploads/2017/10/Feb-2017_Xenowatch-Special-Report-1.pdf">xenophobic violence</a>. </p>
<p>However, a greater proportion of respondents believed that black people and white people would never trust each other – up from 58% (2015/16) to 64% (2017/8). </p>
<h2>Scope for improvement</h2>
<p>Inequality is one area that needs to be examined: life appears to be improving most rapidly for the more advantaged members of society. White people, and individuals with high incomes, have the highest quality of life – and their quality of life appears to be improving most rapidly. </p>
<p>Multi-sectoral work is needed to tackle this and other issues, and to ensure that Gauteng offers a good life to everyone who calls it home.</p><img src="https://counter.theconversation.com/content/106813/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julia de Kadt works for the Gauteng City-Region Observatory (GCRO).
The GCRO receives core funding from the Gauteng Provincial Government, as well as in-kind support from the University of the Witwatersrand and the University of Johannesburg. The Quality of Life Survey was funded from the GCRO's core grant, with additional support from the City of Ekurhuleni and the City of Johannesburg.</span></em></p><p class="fine-print"><em><span>Alexandra Parker works for the Gauteng City-Region Observatory (GCRO). The GCRO receives core funding from the Gauteng Provincial Government, as well as in-kind support from the University of the Witwatersrand and the University of Johannesburg. The Quality of Life Survey was funded from the GCRO's core grant, with additional support from the City of Ekurhuleni and the City of Johannesburg.</span></em></p><p class="fine-print"><em><span>Christina Culwick works for the Gauteng City-Region Observatory (GCRO). The GCRO receives core funding from the Gauteng Provincial Government, as well as in-kind support from the University of the Witwatersrand and the University of Johannesburg. The Quality of Life Survey was funded from the GCRO's core grant, with additional support from the City of Ekurhuleni and the City of Johannesburg.</span></em></p>The latest data offer a vital resource for understanding Gauteng’s multi-faceted challenges.Julia de Kadt, Senior Researcher, Gauteng City-Region ObservatoryAlexandra Parker, Researcher of urban & cultural studies, Gauteng City-Region ObservatoryChristina Culwick Fatti, Senior researcher, urban sustainability transitions, environmental governance and resilience, Gauteng City-Region ObservatoryLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/914332018-02-08T14:49:10Z2018-02-08T14:49:10ZThe deaths of 144 mentally ill patients and South Africa’s constitutional democracy<figure><img src="https://images.theconversation.com/files/205538/original/file-20180208-180826-1v51vpl.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">South Africa's Justice Dikgang Moseneke presided over hearings into the deaths of 144 mentally ill patients who were moved to unregistered NGOs. </span> <span class="attribution"><span class="source">ANA/Nokuthula Mbatha</span></span></figcaption></figure><p>Since colonial times black South Africans have been accustomed to cruelty, neglect and indifference on the part of successive governments. The apartheid government reduced these brutalities to a fine art form, resulting in the system being declared a <a href="https://treaties.un.org/doc/publication/unts/volume%201015/volume-1015-i-14861-english.pdf">crime against humanity</a>.</p>
<p>Regrettably, despite its ideological break from the apartheid past, the post-1994 democratic government has also demonstrated a level of cruelty, neglect and indifference that have been alarming. </p>
<p>There are a litany of examples. The <a href="https://www.theguardian.com/world/2008/nov/26/aids-south-africa">HIV/AIDS denialist position of former President Thabo Mbeki</a> was one. Another was the social welfare debacle in the Eastern Cape two decades ago when sustained service delivery failure due to incompetence and corruption led to <a href="https://issafrica.org/chapter-4-eastern-cape-case-study">great hardship</a> for the poor and the elderly. Then there were <a href="http://www.sahistory.org.za/article/marikana-massacre-16-august-2012">the Marikana deaths</a> when 34 miners were gunned down by police during a wage protest. </p>
<p>More recently <a href="http://ewn.co.za/2018/02/03/gauteng-anc-describes-life-esidimeni-hearings-as-heart-breaking">arbitration hearings</a> into the deaths of 144 mentally ill people have brought to light shocking cruelty, neglect and indifference on the part of government officials. </p>
<p>South Africans watching the hearings, which are being presided over by Justice Dikgang Moseneke, have been perplexed and horrified by the level of depravity. The patients died after being moved from an institution called <a href="https://www.lifehealthcare.co.za/about-us/life-esidimeni/">Life Esidemeni</a> to a number of NGOS, some of which weren’t legally registered. </p>
<p>What does this say about the health of South Africa’s constitutional democracy?</p>
<p>What happened to these patients and the conduct of the officials entrusted to make decisions about their welfare and to care for them is not just a case of the run of the mill negligence claim in common law. It goes to the heart of the country’s constitutional democracy. The <a href="https://www.gov.za/documents/constitution-republic-south-africa-1996-preamble">preamble</a> to South Africa’s Constitution boldly declares that everyone is equally protected by law. It states that the government is committed to improve the quality of life of all citizens.</p>
<h2>Issues ripe for examination</h2>
<p>How can a legal hearing like the Life Esidimeni arbitration fix the systemic issues within South Africa’s mental health care system, and the care of patients? </p>
<p>The answer lies in the decisions taken to bring the people responsible to book. Four options for possible action present themselves – criminal charges, common law claims for compensation, compensation for violation of constitutional rights and personal liability. </p>
<p>Depending on what option is pursued will determine whether or not South Africa sees a repeat of the tragedy.</p>
<p>First to criminal charges: can the political appointees, even those who have resigned, be charged criminally? The answer is yes. The South African Police and the National Prosecuting Authority are currently investigating the matter and criminal charges are likely to ensue. </p>
<p>But this won’t strengthen the constitutional rights of patients in similar situations in the future. To achieve this end, a few other options are available.</p>
<p>One is compensation. As the hearings concluded, Advocate Adila Hassim representing 63 families of the 144 patients said <a href="https://www.dailymaverick.co.za/article/2018-02-08-life-esidimeni-families-to-receive-r200000-as-further-compensation-debated?utm_medium=email&utm_campaign=Afternoon%20Thing%208%20February%202018&utm_content=Afternoon%20Thing%208%20February%202018+CID_f8f2e27b3d8e385b860123a4dae26611&utm_source=TouchBasePro&utm_term=State%20cuts%20a%20deal%20with%20Life%20Esidimeni%20families#.WnxS366WbIU">that an agreement</a> had been reached with the government to pay R200 000 to each family. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/205539/original/file-20180208-180833-b78xuj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/205539/original/file-20180208-180833-b78xuj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/205539/original/file-20180208-180833-b78xuj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/205539/original/file-20180208-180833-b78xuj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/205539/original/file-20180208-180833-b78xuj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/205539/original/file-20180208-180833-b78xuj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/205539/original/file-20180208-180833-b78xuj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Advocate Adila Hassim represented 63 families of the 144 patients who died.</span>
<span class="attribution"><span class="source">ANA\Itumeleng English</span></span>
</figcaption>
</figure>
<p>Those families who choose not to accept the compensation offered may have further claims under the common law of negligence against the wrongdoers as well as the state for grossly negligent conduct and their failure to exercise due care. </p>
<p>But the egregiousness of this situation goes to the heart of the Constitution because it violates several rights. These include the right to life, dignity, safety, security, health, privacy, and not to be subjected to cruel, inhuman or degrading and treatment.</p>
<p>In his consideration of redress and compensation, Justice Moseneke should allow a claim for constitutional compensation or damages, one that stands on its own outside of the common law claims. </p>
<p>Such claims have been allowed elsewhere. For example, in 1996 the <a href="https://law.justia.com/cases/new-york/court-of-appeals/1996/89-n-y-2d-172-0.html">New York state’s highest court</a> held that a free-standing constitutional tort should exist and compensation allowed. Until that point, the court had dismissed the notion that a constitutional tort (separate from a common law tort, like assault or negligence) could exist and authorised compensation only for common law torts committed by State government actors.</p>
<p>In South Africa the Constitutional Court has been reluctant to recognise damages for a constitutional violation. In <a href="http://www.saflii.org/za/cases/ZACC/1997/6.html">a 1996 case</a> the court denied a plaintiff, who had instituted a claim against the Minister of Safety and Security for damages arising from a series of assaults by police, the right to seek constitutional damages. </p>
<p>Another deterrent would be for the Gauteng Department of Health officials who made the decisions that led directly to the deaths of patients to be held personally liable. </p>
<p>The hearings led to consistent denials and obfuscations on the part of Gauteng Department of Health officials, including the former MEC, the Director and other senior officials. Justice Moseneke should reject those assertions. He should impose a meaningful deterrence on those who violated protections provided for under the constitution. </p>
<p>Forcing people to pay personal liability for constitutional damages would provide compelling incentives for enhanced training of officials and staff if there was the potential for monetary damages.</p>
<h2>The road ahead</h2>
<p>The abuse of mental health patients, hidden from view until now, should inspire civic engagement and action by government.</p>
<p>South Africa could look elsewhere for lessons in the care and protection of mental health patients. A detailed report commissioned by the Governor of New York six years ago set out a series of recommendation that South Africa should follow. The <a href="http://www.essexstreet.biz/files/justice4specialneeds.pdf">report’s</a> recommendations included training officials and what steps should be taken in reporting and investigating abuse of patients in mental health facilities.</p><img src="https://counter.theconversation.com/content/91433/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Penelope Andrews does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Arbitration hearings into the deaths of mentally ill patients has brought to light shocking cruelty and neglect on the part of South African officials.Penelope Andrews, Dean of Law and Professor, University of Cape TownLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/836312017-10-10T22:47:07Z2017-10-10T22:47:07ZWho will be the doctors of death in a time of assisted suicide?<figure><img src="https://images.theconversation.com/files/189070/original/file-20171005-6575-iqsezw.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Medical assistance in dying has been legal in Canada since July 2016, but there are no 'specialists' responsible for doctor-assisted suicide and many doctors are overwhelmed with requests. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Medical assistance in dying (MAID) became a reality in Canada when <a href="http://www.parl.ca/DocumentViewer/en/42-1/bill/C-14/royal-assent">legislation was passed</a> in July 2016. This is the hastening of death through a lethal dose of medication — either by self-ingestion (assisted suicide) or physician injection (euthanasia). </p>
<p><a href="http://www.cbc.ca/news/politics/medical-assistance-death-figures-1.4344267">More than 2,000 Canadians</a> have received MAID, administered by a number of physicians. Few of those doctors are palliative care specialists, who are purposely <a href="http://www.cspcp.ca/wp-content/uploads/2015/10/CSPCP-Key-Messages-FINAL.pdf">keeping their distance from MAID</a> to avoid further stigmatization as the physicians of death. They do not want to be associated with treatment failure, or viewed as only providing care to those who have either <a href="http://nationalpost.com/health/when-to-give-up-treatment-or-comfort-for-late-stage-cancer">given up</a> or been deemed hopeless. </p>
<p>This has left MAID without leadership or co-ordination, leading to unequal access and confusion among the public and health-care providers.</p>
<p>I am a palliative care physician at Queen’s University who teaches medical students, residents and other health-care providers. I am adjusting to the new reality of palliative care in the MAID era. Many patients and families ask me about it and a fair number receive it. One patient asked me to be there for his MAID death. </p>
<p>I speak to nursing and physician groups and at <a href="http://www.queensu.ca/eventscalendar/calendar/events/barry-smith-symposium-end-life-care-death-and-dying">public events</a> where I can be simultaneously applauded and criticized for not providing doctor-assisted suicide as part of my palliative care. At these events, there is always uncertainty about MAID: the ethics, legalities, practicalities (how, where, by whom). And there are questions about the comfort of health-care providers with an intervention aiming to administer death rather than stave it off.</p>
<h2>Doctors who improve quality of life</h2>
<p>To understand why palliative care does not wish to “own” MAID requires an understanding of the <a href="http://www.who.int/cancer/palliative/definition/en/">meaning of palliative care</a>. </p>
<p>Palliative care is an approach that improves the quality of life of patients and their families facing a life-threatening illness by preventing and relieving suffering through treatment of pain and other problems — physical, psychosocial and spiritual. It is often provided alongside disease-focused treatments like chemotherapy, radiation or surgery.</p>
<p>Traditionally, palliative care has mostly provided care to <a href="http://www.cancer.ca/en/about-us/for-media/media-releases/national/2016/palliative-care-report-2016/?region=on">patients with cancer</a>, but it is appropriate for anybody with advanced diseases of organs like the <a href="https://www.heartandstroke.ca/heart/conditions/heart-failure">heart</a>, <a href="https://www.lung.ca/copd">lung</a>, <a href="https://www.kidney.ca/kidney-disease">kidneys</a> and <a href="https://www.liver.ca/patients-caregivers/liver-diseases/cirrhosis/">liver</a>. And for those with nervous system disorders like <a href="https://www.als.ca/about-als/">ALS</a> or <a href="http://www.alzheimer.ca/en/About-dementia">dementia</a>. Palliative care is also <a href="http://www.sickkids.ca/patient-family-resources/paediatric-advance-care-team/index.html">provided to children</a> with the above illnesses and also those with congenital disorders.</p>
<p>Research shows that palliative care can <a href="https://doi.org/10.1191/026921698676226729">improve symptom control</a>, <a href="https://dx.doi.org/10.1001/jama.2009.1198">quality of life</a> and, in some cases, <a href="https://dx.doi.org/10.1056/NEJMOa1000678">lead to improved survival</a>. But palliative care is still often seen as the care provided “when nothing else can be done” and when <a href="https://dx.doi.org/10.1503/cmaj.151171">someone is close to death</a>. </p>
<p>This causes problems where patients don’t want to see palliative care “too early” and their doctors are reluctant to refer for <a href="https://dx.doi.org/10.1002/cncr.24206">similar reasons</a>. This shrinks the time in which doctors can help with symptoms and care plans for the future. A large cancer centre in the U.S. noted this problem and changed the name of their “palliative care” team to “supportive care.” </p>
<p>There was an immediate <a href="https://dx.doi.org/10.1634%2Ftheoncologist.2010-0161">41 per cent increase in referrals</a> and those referrals came earlier due to less stigma around the name.</p>
<h2>Reducing suffering, not stopping life</h2>
<p>Admittedly, palliative care and MAID are both trying to treat suffering, but the methods are different: palliative care does not try to speed up (or slow down) death whereas MAID expressly speeds up death. Palliative care tries to reduce suffering by treating physical, psychosocial and spiritual distress whereas MAID stops suffering by stopping life. </p>
<p>Before MAID was legalized, patients whose suffering couldn’t be fixed by other means would get palliative sedation to reduce their awareness and suffering until they died.</p>
<p>While most palliative care doctors don’t provide MAID, we’re not all opposed to its legalization. I support a person’s choice to hasten their death if they have “grievous and irremediable” suffering, which is the terminology used in the <a href="http://www.cbc.ca/news/politics/supreme-court-says-yes-to-doctor-assisted-suicide-in-specific-cases-1.2947487">Supreme Court decision</a>. There are some patients that, despite our best interventions, still suffer a bad death. Many more patients never get the “best” intervention as they <a href="https://beta.theglobeandmail.com/news/national/canadians-lack-proper-access-to-palliative-care-study-finds/article28122378/">can’t access expert palliative care</a> where they live or the system is too overburdened to provide care.</p>
<h2>Who will be the doctors of death?</h2>
<p>So who should have responsibility for MAID? There are no “specialists” that reliably provide MAID, and many doctors struggle to manage the requests of patients. The few doctors who provide it are generally doing it on top of their regular work, risking burnout. </p>
<p>A new group — the <a href="http://camapcanada.ca/">Canadian Association of MAID Assessors and Providers</a> — provides peer support and clinical guidelines. They are also trying to keep up with a legal landscape that is <a href="https://beta.theglobeandmail.com/news/national/ontario-judge-rules-woman-fits-criteria-for-medically-assisted-death/article35375467/">changing frequently</a>, especially around the <a href="http://www.cbc.ca/news/canada/british-columbia/assisted-dying-law-canada-moro-1.4294809">“reasonably forseeable” death</a> clause which was included in the legislation but has not been defined and thus is subject to varying interpretation.</p>
<p>They are also expecting legal challenges regarding “<a href="http://www.cbc.ca/news/politics/doctor-assisted-death-minors-1.3466769">mature minors</a>” and patients with advanced directives who are not able to request MAID, such as those with advanced dementia. Currently only adults who are mentally competent to consent at the time of the MAID procedure are eligible to receive it. Nobody can ask for MAID in a living will or have their loved ones request it on their behalf.</p>
<p>In the end, palliative care doctors, providers of MAID and the public all have the same goal: to alleviate suffering, to maximize quality of life and to respect autonomy for those suffering from life-limiting illnesses. </p>
<p>Almost everyone agrees that palliative care needs to be strengthened in Canada with more education, capacity and funding. Better palliative care will mean less suffering for patients. For those who request MAID due to their suffering, they should be able to access it in an equitable, respectful and expedient way. </p>
<p>End-of-life care remains an uncomfortable but critically important topic and is really the responsibility of everyone.</p><img src="https://counter.theconversation.com/content/83631/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Craig Goldie does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>More than 2,000 Canadians have chosen medical assistance in dying (MAID) since legalization in 2016. But palliative care doctors aren’t embracing assisted suicide as part of their job.Craig Goldie, Assistant Professor, Palliative Physician, Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/831942017-09-21T00:39:20Z2017-09-21T00:39:20ZDigital life stories spark joy in people with dementia<figure><img src="https://images.theconversation.com/files/186899/original/file-20170920-16437-qgxiwq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Creating a 'digital story' of their memories using photos, music, text and video, can hep dementia patients open up to their fear and move into optimism. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>I was sitting on the sofa across from Christine in her home. She offered me a cup of coffee. Each time I visited, she sat in the same spot — the place where she felt most comfortable and safe. She had shared stories from the past and decided to talk about the birth of her daughters, grandchildren and great grandchildren.</p>
<p>For Christine, a research participant in <a href="https://www.springerprofessional.de/en/digital-storytelling-and-dementia/12486522">a multi-sited study into dementia and digital storytelling</a>, the fear dementia brings is that she won’t be able to be a part of special moments such as the celebration of birth. </p>
<p>As we worked together in Edmonton, creating a multimedia story from her memory, Christina started to remember new things. She became emotional when she talked about her daughters becoming mothers themselves. She pointed out that the project was so much more powerful than looking through a photo album. Like many participants, she said she recalled stories she hadn’t thought about for years. </p>
<p>As a post-doctoral fellow in occupational therapy under the supervision of Dr. Lili Liu, at the <a href="https://www.ualberta.ca/occupational-therapy">University of Alberta</a> I worked with several participants in this study. Funded by the <a href="http://ccna-ccnv.ca/en/">Canadian Consortium on Neurodegeneration in Aging</a>, one of our goals was to investigate quality of life and how technology affects the lived experiences of persons with dementia. </p>
<h2>Technology and quality of life</h2>
<p>In this research project we defined digital storytelling as using media technology — including photos, sound, music and videos — to create and present a story.</p>
<p>Most previous research on digital storytelling and dementia has focused on the use of digital media for <a href="https://doi.org/10.7748/mhp2013.12.17.4.34.e830">reminiscence therapy</a>, <a href="http://dx.doi.org/10.1080/15228830903329831">creating memory books</a>, or <a href="http://dx.doi.org/10.3928/00989134-20130916-07">enhancing conversation</a>. Collaboratively creating personal digital stories with persons with dementia is an innovative approach, with only one <a href="http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2850.2012.01900.x/abstract">similar study</a> found in the United Kingdom.</p>
<p>During this project, I met with seven participants over eight weeks. Our weekly sessions included a preliminary interview to discuss demographics and past experiences with technology. Then we worked on sharing different meaningful stories, selecting one to focus on and building and shaping the story. This included writing a script, selecting music, images and photographs and editing the draft story.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/rt4cxQrCDfs?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">“I was blessed with wonderful parents, and I was a mistake,” begins Myrna Caroline Jacques, 77, a grandmother of five.</span></figcaption>
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<p>Participants worked on a variety of topics. Some told stories about <a href="https://www.wevideo.com/view/945135029">family and relationships</a>, while others talked about a <a href="https://www.wevideo.com/view/946013068">particular activity</a> or event that was important to them. After all participants completed their digital stories, we had a viewing night and presented the stories to family members.</p>
<h2>Happiness in the moment</h2>
<p>It was an intense process. Eight sessions working one-on-one with persons with dementia required a significant amount of thinking, remembering and communicating for the participants. There were challenges, such as when participants found themselves unable to express their thoughts or remember details.</p>
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<figcaption><span class="caption">In this digital story, Christine Nelson talks of her love for her children and her fear of forgetting special moments.</span></figcaption>
</figure>
<p>Although many participants were tired after a session, they all felt that it was a beneficial and meaningful activity. Working in their homes on a personally gratifying activity with a tangible outcome seemed to keep them motivated and eager to continue. The process was also enjoyable and gave the participants something to look forward to each week. </p>
<p>There was a sense of happiness in the moment. And the way that participants responded to me, along with their ability to remember who I was and the purpose of our sessions, all indicated a deeper positive connection. The participants all felt a sense of accomplishment and family members were proud to see the end product at the viewing night. </p>
<h2>Into the future</h2>
<p>I have met with one of the research participants again recently, and she still remembers me. I would like to follow up with the others to get a sense of the long term impact of this digital storytelling project. I am also eager to see how the findings in Edmonton line up with those from the studies in Vancouver and Toronto. </p>
<p>For the participants, talking about memories helped them open up about having dementia. Getting past the fear and looking ahead with optimism was the message I heard, and one that I hope to keep hearing.</p><img src="https://counter.theconversation.com/content/83194/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Elly Park receives funding from the Canadian Consortium on Neurodegeneration in Aging (CCNA). She is affiliated with AGE-WELL, NCE. </span></em></p>When dementia patients use photos and music to produce digital stories about events in their lives, they start to remember. They also face their fears about the disease, and experience happiness.Elly Park, Assistant Clinical Lecturer in Occupational Therapy, University of AlbertaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/780012017-07-26T01:45:22Z2017-07-26T01:45:22ZThe hidden extra costs of living with a disability<figure><img src="https://images.theconversation.com/files/177584/original/file-20170710-5928-xbqobi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Costs of transportation and accessibility are just two factors that increase cost of living for persons with disabilities. </span> <span class="attribution"><span class="source">Corepics VOF/shutterstock.com</span></span></figcaption></figure><p>Disability is often incorrectly assumed to be rare. However, <a href="http://www.who.int/disabilities/world_report/2011/report.pdf">global estimates</a> suggest than one in seven adults has <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2329676">some form of disability</a>. </p>
<p>The term “disability” covers a number of functional limitations – physical, sensory, mental and intellectual. These can range from mild to severe and might affect someone at any time across the lifespan, from an infant born with an intellectual impairment to an older adult who becomes unable to walk or see.</p>
<p>What is perhaps less well-known is that studies consistently show that people with disabilities are disproportionately poor. They are more likely to become poor and, when poor, are more likely to stay that way, because of barriers to getting an education, finding decent work and participating in civic life. Taken together, <a href="http://www.who.int/disabilities/world_report/2011/report.pdf">these barriers</a> significantly and adversely impact their standard of living. </p>
<p>However, a new body of research reveals another major barrier, previously missing from most studies: People living with disabilities also face extra costs of living. Our team’s recent review of the evidence suggests that living with a disability may cost an additional several thousand dollars per year, adding up over time to be a significant financial burden on households.</p>
<h1>Calculating the cost</h1>
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<img alt="" src="https://images.theconversation.com/files/178874/original/file-20170719-13593-1a9eskd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/178874/original/file-20170719-13593-1a9eskd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/178874/original/file-20170719-13593-1a9eskd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/178874/original/file-20170719-13593-1a9eskd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/178874/original/file-20170719-13593-1a9eskd.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/178874/original/file-20170719-13593-1a9eskd.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/178874/original/file-20170719-13593-1a9eskd.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">People with disabilities may have more basic necessities than people without.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/pretty-aged-granny-using-blue-cane-628135925?src=kI-X2eUyNwk5Y3w9dH5ZGg-3-64">Antonio Diaz/Shutterstock.com</a></span>
</figcaption>
</figure>
<p>Governments draw poverty lines at a level of income that they believe is sufficient to meet a minimum standard of living. Someone at the poverty line presumably has just enough resources to house, clothe and feed themselves at an acceptable level, and participate in the basic activities of being a citizen. Increasingly, countries provide <a href="http://www.ilo.org/wcmsp5/groups/public/---dgreports/---dcomm/documents/publication/wcms_245201.pdf">cash benefits or food transfers</a> to people below this poverty line so they are able to reach this minimum standard for basic resources. </p>
<p>The problem is that people with disabilities have extra costs of living that people without disabilities do not have. They have higher medical expenses and may need personal assistance or assistive devices, such as wheelchairs or hearing aids. They may need to spend more on transportation or modified housing, or be restricted in what neighborhoods they can live in to be closer to work or accessible services.</p>
<p>When this is the case, then some people with disabilities might appear “on paper” to live above the poverty line. But in reality, they don’t have enough money to meet the minimum standard of living captured in that poverty line.</p>
<p>In <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2967775">our recent review of the literature</a>, we found that people with disabilities in 10 countries face large extra costs of living. These costs can range widely, from an estimated US$1,170 to $6,952 per year. In a developing country such as Vietnam, for example, the estimate stands at $595 for additional health costs alone.</p>
<p>We used a method called the standard of living approach, which estimates extra costs based on the gap in assets owned by households with and without disabilities. Extra costs accounted for a large share of income, from a low of 12 percent in Vietnam to 40 percent for elderly households in Ireland. </p>
<p>Comparing the costs of disabilities across countries is challenging. Recent studies measure what is actually spent, not what needs to be spent. Estimated costs might be less in developing countries not because it is less expensive to accommodate the needs of people with disabilities in those countries, but because the goods and services needed are not available. If wheelchairs or hearing aids are nowhere to be found, then a person cannot spend money on them. </p>
<p>This could lead to the paradoxical finding that, as a country starts becoming more inclusive, the measured costs of living with a disability could increase. But hopefully, at the same time, the ability of people with disabilities to work and go to school will also increase.</p>
<h1>Unanswered questions</h1>
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<img alt="" src="https://images.theconversation.com/files/177577/original/file-20170710-5952-1ohs79m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/177577/original/file-20170710-5952-1ohs79m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/177577/original/file-20170710-5952-1ohs79m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/177577/original/file-20170710-5952-1ohs79m.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/177577/original/file-20170710-5952-1ohs79m.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/177577/original/file-20170710-5952-1ohs79m.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/177577/original/file-20170710-5952-1ohs79m.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A woman is escorted from protest opposing cuts to Medicaid in front of Senator Mitch McConnell’s office on Capitol Hill on June 22, 2017.</span>
<span class="attribution"><span class="source">AP Photo/Jacquelyn Martin</span></span>
</figcaption>
</figure>
<p>There is much we still don’t know about what it costs to live with a disability. In our comprehensive review of the literature, we found only 20 studies that estimated increased costs of living with a disability. The vast majority were from developed countries. </p>
<p>We need better information on how these extra costs may vary by type of disability, and how they may be affected by efforts to remove barriers to participation. For example, how would building a fully accessible public transportation system impact the extra transportation costs that people with disabilities face?</p>
<p>Our work also suggests we may need different income tests for people with disabilities when it comes to social protection programs. For example, should the income limit for receiving cash transfers or subsidized housing be higher for families with disabilities because they face these extra costs? Some countries, such as Denmark and the United Kingdom, provide benefits to support families with disabilities who bear these costs. </p>
<p>Another important question is whether these benefits are adequate. Do they allow people with disability and their families to reach at least a minimum threshold for standard of living? To what extent does this improve their participation in society or the economy?</p>
<h1>Supporting people with disabilities</h1>
<p>To address these questions, we need to monitor these issues over time. For that, we need more and better data on disability in different countries linked to good data on income, assets and expenditures. We recommend adding well-formulated disability questions to the standard household surveys currently used by most countries to chart their citizen’s wellbeing. The best example of such questions was developed under the aegis of the U.N. Statistical Commission via <a href="http://www.washingtongroup-disability.com">the Washington Group on Disability Statistics</a>. </p>
<p>It’s also important to undertake qualitative research. For instance, focus groups and in-depth interviews would help researchers better understand the needs of people with disabilities in their own terms.</p>
<p>Policymakers also need to make social programs sensitive to the issue of extra costs associated with disability – for instance, in income tests and benefit amounts or through social health insurance programs. Our review has led us to believe that even well intended anti-poverty efforts and social protection schemes that do not take into consideration the additional costs of living with a disability will leave millions of people who have disabilities, and their families, in poverty.</p><img src="https://counter.theconversation.com/content/78001/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nothing to disclose.</span></em></p><p class="fine-print"><em><span>Daniel Mont, Hoolda Kim, Michael Palmer, and Sophie Mitra do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Depending on where you live, having a disability can cost thousands of additional dollars per year. Government programs often don’t account for that.Sophie Mitra, Associate Professor of Economics, Fordham UniversityDaniel Mont, Principal Research Associate in Epidemiology and Public Health, UCLHoolda Kim, Graduate Student in Economics, Fordham UniversityMichael Palmer, Senior Lecturer in Economics, RMIT University VietnamNora Groce, Chair of Disability and Inclusive Development, UCLLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/813442017-07-20T15:35:26Z2017-07-20T15:35:26ZIf the UK is going to make more people retire later, it needs to get creative<figure><img src="https://images.theconversation.com/files/179055/original/file-20170720-15106-1xbre55.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Dreaming of ways to retire.</span> <span class="attribution"><span class="source">shutterstock.com</span></span></figcaption></figure><p>The UK government has made a <a href="http://www.bbc.co.uk/news/business-40658774">surprise announcement</a> that the rise in state pension age to 68 is to be phased in from 2037, instead of 2044. Made just days before the end of an unusually troubled parliamentary session, it is concerning for a large part of the working age population.</p>
<p>The shelving of the previous timetable came only a day after the release of research findings that life expectancy in England is stalling – after 100 years of rises – with some experts linking the trend to the introduction of <a href="http://www.bbc.co.uk/news/health-40608256">government austerity policies</a>. Taken together with the respected <a href="http://www.parliament.uk/documents/fair-society-healthy-lives-full-report.pdf">Marmot review of 2010</a>, which drew attention to the fact that the time we can expect to live in good health has not increased as quickly as life expectancy and that differences in health are strongly class-related, this makes the timing of the policy announcement particularly troubling. </p>
<p>People’s ability to work longer is driven by socio-economic inequalities more than politicians care to admit. The poorest off in the UK are <a href="https://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/inequalities-in-life-expectancy-kings-fund-aug15.pdf">much more likely</a> to be forced into early retirement by declining health. This is, of course, exacerbated by the different physical demands of jobs, with lower paid jobs often involving more manual labour compared to those in higher paid professions. </p>
<p>Policy that takes a universal approach to extending state pension age will therefore exacerbate these differences in people’s working and retirement experiences. People whose health prevents them from continuing in jobs will be at increased risk of poverty in later life, their pensions prospects damaged by being forced into retirement earlier than anticipated.</p>
<p>The change will affect anyone aged 39-47, an estimated six million people who will now have to work for an extra year. It follows the <a href="https://www.gov.uk/government/publications/state-pension-age-independent-review-final-report">Cridland report</a>, an independent review of state pension age arrangements, published in March 2017, and the government has tried to frame the measure as enhancing equity between generations. It is anticipated to save the government £74 billion – counter-evidence to the narrative which has been developing post-election that <a href="https://www.theguardian.com/politics/2017/jun/18/people-are-weary-of-the-slog-philip-hammond-signals-easing-of-austerity">austerity is being phased down</a>.</p>
<p>The government’s position is currently far from stable, so the change may yet still be theoretical. The age group who will be most affected is a key electoral group for the Conservative Party. <a href="https://yougov.co.uk/news/2017/06/13/how-britain-voted-2017-general-election/">Research</a> following the 2017 general election pinpointed 47 as the age at which support for Labour and the Conservatives crossed over. So this age group is not an obvious one for a minority government to penalise.</p>
<h2>Changing world of work</h2>
<p>State pensions in the UK were arguably set up to serve a <a href="https://theconversation.com/why-baby-boomers-will-be-the-last-generation-to-have-good-pensions-45008">very different demographic</a>, with a much shorter expected period of retirement. Today’s ageing population is bringing into sharp relief the lack of a state model for pensions payment which accounts for this. Understandably, this vacuum is worrying for those affected by unanticipated changes to their pension planning. The government faces some serious challenges when it comes to reforming pensions and helping future generations have a good quality of life into their old age.</p>
<p>Plus, the world of work is changing. Careers and jobs for life are fast becoming the preserve of the lucky few, and it is difficult to predict what kinds of jobs we will all be doing in the next few years, let alone in decades’ time. For example, since World War II the proportion of the population employed in service industries has <a href="http://webarchive.nationalarchives.gov.uk/20151014041016/http://www.ons.gov.uk/ons/rel/naa1-rd/national-accounts-articles/uk-service-industries--definition--classification-and-evolution/index.html">nearly doubled (from 44% to 85%)</a>, and those employed in farming has fallen from 5% to 1%. Meanwhile, technology is constantly changing the way we work, be it from home, conference calling with colleagues around the world, or in reconfigured open-plan offices. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/179040/original/file-20170720-24017-1ksjlxn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/179040/original/file-20170720-24017-1ksjlxn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/179040/original/file-20170720-24017-1ksjlxn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/179040/original/file-20170720-24017-1ksjlxn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/179040/original/file-20170720-24017-1ksjlxn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/179040/original/file-20170720-24017-1ksjlxn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/179040/original/file-20170720-24017-1ksjlxn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Technology changes the way we work.</span>
<span class="attribution"><span class="source">shutterstock.com</span></span>
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</figure>
<p>Lifelong training will play a key role if we are now to navigate the labour market for longer. If the world of work is constantly evolving, some of the key skills of the future will likely not yet exist, and workers will need to adapt to remain competitive. This will require a coordinated effort from both employers and policy makers to support people working for longer. </p>
<p>An increase in <a href="http://www.southampton.ac.uk/publicpolicy/what-we-do/with-whom-we-work/current-projects/parry-flexible-working.page">flexible work arrangements</a> is also necessary, enabling older workers to manage working for longer at a time when there may be alternative demands on their time, pressing them to work differently. Their health may be changing and they may face new <a href="https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/587654/fuller-working-lives-a-partnership-approach.pdf">caring demands since these peak in the pre-retirement period</a>, taking on care for their partners and parents. They may also be looking to balance this kind of work with a desire to look after grandchildren (a job in itself that could be recognised as work) or to pursue voluntary work. </p>
<p><a href="https://www.jrf.org.uk/report/impact-employer-policies-and-practice-process-retirement">Research</a> has consistently shown more gradual transitions to retirement to be mutually beneficial for older workers’ health and employers’ workforce planning. Yet this is complicated by the relative lack of opportunity for part-time working in <a href="http://www.ageuk.org.uk/documents/en-gb/for-professionals/consumer-issues/fsc_resolution_foundation_provocation.pdf?dtrk=true">middle income posts</a>. </p>
<p>Government has a strong incentive to support employers in making flexible work practices more routine, since workers who are forced to leave work before state pension age have consequences for social welfare and healthcare bills. This will be even more important if the state pension age rises again for future generations.</p><img src="https://counter.theconversation.com/content/81344/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jane Parry receives funding from the Centre for Ageing Better. She is a member of the Labour Party.</span></em></p>With life expectancy stalling and austerity partly to blame, the UK must rethink its approach to retirement.Jane Parry, Lecturer in Gerontology, University of SouthamptonLicensed as Creative Commons – attribution, no derivatives.