Variations and Innovations in Care Services: Reflections on the Debates and Issues papers in the new themed issue of the International Journal of Care and Caring

Alisoun Milne

By Alisoun Milne, Debates and Issues Editor, International Journal of Care and Caring

Issue 2, Volume 2 of the International Journal of Care and Caring is the journal’s first themed issue. It is edited by Karen Christensen and Yueh-Ching Chou and is entitled ‘Variations and Innovations in Care and Care Work: Critical Perspectives’.

The articles in this issue explore the relationships between formal care services and ‘informal’ care work and how they are being affected by change in different parts of the world. The Debates and Issues section is written by committed practitioners who want to improve the lives of service users and carers. They offer a lens on how two different countries have engaged with two contemporary challenges: ensuring cost effective user driven support for people with intellectual disabilities in Norway and how to offer creative accessible support to carers.

Two papers from Norwegian practitioners ‘User-controlled personal assistance ‐ the case of persons with intellectual disabilities’ and ‘From institutionalisation via good intentions ‐ and back again?’ explore innovations in the care and support of people with intellectual disabilities, specifically user controlled personal assistance and community based alternatives to long stay hospital care. The third paper, ‘Making a world of difference for carers: the Pathways for Carers project’ introduces us to an exciting new model of carer support – a ‘Pathways for Carers walks’ project – based in Victoria, Australia.

“discusses the tensions that exists between policy goals and offering a service that offers ‘value for money’ (sound familiar?).”

The two Norwegian authors discuss the tensions that exist between policy goals such as personalised care and the operational realities of offering a service that offers ‘value for money’ in a time of reduced funding for welfare services (sound familiar?). Balancing the rights of people with intellectual disabilities to independent living and personalised decision making with the risk of them being expected to accept a narrow reductionist service is also explored. The second paper raises the question about whether group living community-based alternatives to long stay hospital care are genuinely less institutionalised. Cuts to staffing and reduced funding for support of people with intellectual disabilities have resulted in the introduction, by stealth, of institutionalised elements to the caring regime e.g. reduced access to community facilities. The advantages and disadvantages of ‘group living’ are also discussed raising a second question – whether this model suits everyone. Accommodating more challenging needs whilst ensuring that all users are able to live an ‘ordinary life’ is a specific issue.

The ‘Pathways for Carers walks’ project brings to the fore the importance of developing services that are in tune with the local needs of carers and utilise community intelligence and resources. The ‘walkers’ that lead the service passionately believe in the power of carers’ sharing experiences and the therapeutic and physical benefit of walking in lovely open space whilst learning about the variety of support services available to them. Part way along, there is a Carers Seat dedicated to carers’ contribution to community and family life in the region; the seat is enjoyed by many carers participating in the walks.

“offers insights into the value, benefit and challenges of delivering three creative models in two different parts of the world”

The papers offer us insights into the value, benefit and challenges of delivering three creative models in two different parts of the world, brought to life through examples of users and carers experiences. The authors helpfully reflect of how policy ‘meets’ practice and the pivotal role that families and carers play in supporting and advocating for their relatives and the importance of recognising, advising and supporting carers themselves.

The Debates and Issues section is free to access in all issues of the International Journal of Care and Caring

Read the articles for free online:

User-controlled personal assistance ‐ the case of persons with intellectual disabilities

From institutionalisation via good intentions ‐ and back again?

Making a world of difference for carers: the Pathways for Carers project

Explore the themed issue:

Variations and Innovations in Care and Care Work: Critical Perspectives

Write for the Debates and Issues section:

The Debates and Issues section of the International Journal of Care and Caring attracts articles (up to 2500 words long) from a number of different stakeholders in the fields of care and caring on a range of contemporaneous issues of interest to an international readership. Authors are drawn from the third sector, the fields of policy and/or practice as well as students and academics. If you are interested in writing a paper for the section please contact a.j.milne@kent.ac.uk and read our guidance to authors.

 

Social forms of care: Changing relationships of support

Mary Holmes

Mary Holmes, Co-Editor of Families, Relationships and Societies, discusses the new special issue of the journal which is now available on Ingenta.

It may seem obvious to most of us that we rely on other people for care and support, but how has that changed given the fragmenting tendencies of contemporary life? In the latest issue of Families, Relationships and Societies we look at some of the different ways in which people care and are cared for from Finland, to Sweden, the UK, to the Phillipines. Whether it is caring for children, grandchildren, teenagers, or the elderly, care calls upon our bonds with other human beings.

Whatever the kind of bonds or location, social forms of care include state provision and welfare services, as well as informal care arrangements. People use family, friends and other connections to get the support they need. It is not always easy and may require negotiation and involve conflict. Some informal arrangements may be ad hoc and fragile, but some may contribute to community building and be good alternatives to more institutionalised care provision.

“Childhood, sickness, frailty and old age mean receiving care at times of vulnerability, but even in these cases the cared for might offer some support to others”

A lot of care is mutual. Childhood, sickness, frailty and old age mean receiving care at times of vulnerability, but even in these cases the cared for might offer some support to others – be it financial or emotional. In everyday terms, we give and take care. A friend makes us dinner when we are busy, we look after their children when they have a meeting. A colleague offers to help with our marking and we take a class for them to return the favour. Older children may take a turn to cook, or listen to their parent’s small woes. Caring changes. Parents care for children together and then perhaps alone; help from grandparents disappears as they die; supportive friends move to another town or country. Alongside these ‘private’ forms of caring are changing public provisions and policies that impact on how people care.

The impact of the rolling back of the welfare state in many countries shifts care responsibilities back on to the private sphere.  For example, we see in one article how austerity has made lone mothers in Finland more reliant on informal support networks. In another, Swedish parents have to deal with pressures to control their teenagers’ alcohol consumption. These are changes in what care means and in ideas about who should care for whom and how.

“The articles reveal generational and cultural differences in expectations around care.”

What care means in different kinds of relationships also changes, and the articles look at parents and teenagers, children and child carers in institutions, social workers and clients, parents and parent-in-law, grandparents, children and grandchildren within multigenerational families. In one instance, we see Filipino daughters-in-law making efforts to create affinity with their mothers-in-law to help them balance a sense of autonomy with caring according to cultural norms around obligation to parents. The articles reveal generational and cultural differences in expectations around care. Women also still have to make sense of having the greater part of the burdens and satisfactions of care. Yet people work at caring for each other.

Different contexts of care affect how it is given and received. For example, one author argues that institutionalised care can give children a different sense of time to ‘private’ forms of care. Meanwhile, in social work practice, care becomes difficult if always concentrating on risk prevention, especially within child protection. The articles do not glorify informal or private care as innately superior, but point out the difficulties of caring in the current climate. The social pressures on ‘private’ forms of care can be acute as people try to look after each other around the demands of work, changing demographics and shifting social norms. Fear-oriented assessments of risk, emphasis on responsibility and self-reliance and the withdrawal of various public services have different impacts according to gender, age, disability, class and race/ethnicity. Limited availability and problems within publicly provided care forces people to find support within often already overstretched networks or communities.

Self-reliance is a fantasy, albeit a powerful one, and it is imperative to know how families, friends and public bodies navigate around it to provide support. Here we see them using a range of ways to maintain relationships of support at a time when vulnerability and care are often degraded. Care remains a social achievement.

 

Read the special issue “Social forms of care: changing relationships of support”.

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Shared Lives: a new health and care system

Alex Fox

Alex Fox is the author of A new health and care system – out today and launching at Nesta this evening.

Here he unpicks the dehumanising tendencies of our public services to introduce a new health care model where those living with long-term conditions can achieve wellbeing in a system that looks at people’s strengths and capabilities, and their potential, not just their needs.

“The NHS was designed in the 1940s for brief encounters: healing us or fixing us up. It often does that astonishingly well. But now 15 million of us (most of us at some point during our lives) live with long-term conditions; three million with multiple long-term conditions. We cannot be healed or fixed, we can only live well, drawing on state support relatively little, or live badly, drawing on state support heavily and falling repeatedly into crisis. That long term, increasing reliance on intensive support services is not only likely to feel miserable to us as individuals and families, it drives long term financial meltdown which will bankrupt our service economies, even if they survive the current period of austerity.

“…we remain locked into seeing people who need support as illnesses, impairments, problems, risks, not as people who can and must share at least some of the responsibility for their own wellbeing.”

So we need a different relationship between people with long term conditions, their families and the services they turn to for help. But health and care leaders continue to talk and plan as if the health and care system was fixable by streamlining what we currently do, integrating various kinds of organisation, or making better use of tech. This is because, whether we use public services, work in them, or lead them, we remain locked into seeing people who need support as illnesses, impairments, problems, risks, not as people who can and must share at least some of the responsibility for their own wellbeing. We do not recognise that people who live for years or decades can become more expert in what works for their wellbeing than many of the professionals who necessarily dip in and out of their lives. Family carers provide more care than the state, but even they are not recognised as vital members of a wider caring team, who might need knowledge, training, equipment and emergency back up just as much as their paid colleagues.

“…fit support around a good life instead of asking people to fit their lives around a good service.”

To unpick this, we need to trace the dehumanising tendencies of our public services from their first contact with people who may need their support and their families, through all of their interactions, to the ways in which they ultimately reject, or in some cases, cling on to, their inmates. With demand rising, services are putting more resources into assessment processes designed to keep away the less needy, but those processes are themselves a drain on resources, and they ensure that those who meet needs thresholds are least able to identify and build on their own capacity to self-care, and have already had their confidence and independence demeaned and undermined by bureaucracy.

The alternative is to take an ‘asset-based’ approach to every long-term support service offered: looking for people’s strengths and capabilities, and their potential, not just their needs. For nearly everyone, these ‘assets’ are partly their relationships with friends and families, so every support service must be delivered in ways which fit round and back up those informal networks, minimising disruption to them.

There is already at least one nationally scaled support model which does this: Shared Lives, now used by 14,000 people in almost every UK area.

Edward, Stephen and Christina’s story

Edward is 66 years old and lives with Shared Lives carers Stephen and Christina. Edward has a learning disability and has been blind since childhood, and when living with traditional methods of support his independence suffered. He didn’t have his own space and was restricted from carrying out many of the tasks and routines of daily life, as well as access to broader life experiences.

Stephen had had contact with Edward through his previous work as a social worker. He perceived that Edward had a lot of potential and believed he could do much more for himself. So when Stephen became a Shared Lives carer and developed his own personal care skills, he and Christina opened their home to Edward and made it their mission to develop his confidence.

The transformation has been profound, with Edward describing his increased independence: “I’ve got my own room and all the things I need. It’s been brilliant. I haven’t looked back since I’ve been with Stephen and Christine.”

Edward has gone from a situation in which he hardly ever experienced leisure activities or life outside home, to having an impressive list of holidays and trips under his belt. He has been to Las Vegas, and taken a helicopter ride over the Grand Canyon. Closer to home, with a bit of support from his Shared Lives carers, he has been to a Formula One Race at Silverstone: “I could feel the cars!” said Edward, describing the sensation of picking up the vibrations of the revving of engines through his feet.

Stephen has encouraged Edward’s enjoyment of the atmosphere at sporting events – and they go to the rugby almost every week. Through Shared Lives, Edward has been able to explore his pre-exiting interests in cars and sports to the full.

Shared Lives demonstrates that it is possible to combine people’s own capacity, with the strengths of positive family and community life, and the back-up and resources of a regulated care service. No one approach can be the magic bullet which will heal our ailing NHS, but Shared Lives offers lessons and challenges which could be taken up by any service: look for the person, not the condition; fit support around a good life instead of asking people to fit their lives around a good service; always connect.

A new health and care system, by Alex Fox is publishing on 28 February 2018 and is available with 20% discount on the Policy Press website. Order here for just £15.19.

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The views and opinions expressed on this blog site are solely those of the original blog post authors and other contributors. These views and opinions do not necessarily represent those of the Policy Press and/or any/all contributors to this site.

Repealing the 8th: how new legislation on abortion should be designed

Fiona de Londras

Mairead Enright

Fiona de Londras and Mairead Enright – authors of ‘Repealing the 8th: Reforming Irish abortion law‘ – respond to the announcement of the Irish Cabinet of its intention to hold a referendum to repeal Article 40.3.3 in May 2018. The book, now publishing on Thursday this week, looks beyond the referendum to what might come next, presenting detailed proposals for new legislation.

Chapter 4 from the book – Accessing abortion care: principles for legislative design – is now available to download free on our website. 

In 1983 the Irish Constitution was amended by the insertion of Article 40.3.3, now known as ‘the 8th Amendment’. This provides that “the State acknowledges the right to life of the unborn and, with due regard to the equal right to life of the mother, guarantees in its laws to respect, and, as far as practicable, by its laws to defend and vindicate that right.”

At first glance, the 8th Amendment may seem innocuous or merely aspirational. However, over time, this provision has led to a near-absolute prohibition on abortion in Irish law and serious infringement of pregnant people’s rights. Under the current law, abortion is only lawfully available in Ireland when a woman will almost certainly die without it, and even then multiple doctors usually have to agree that this is the case.

“More than three decades of activism have come together in a large, vocal, visible and highly effective campaign for political and legal reform.”

Now, though, there are signs of change. More than three decades of activism have come together in a large, vocal, visible and highly effective campaign for political and legal reform; for the removal of the 8th Amendment and introduction of a law that will enable women to exercise agency in pregnancy and ensure that, for those who want to avail of it, abortion care is available at home in Ireland.

On Monday, the Irish Cabinet announced its intention to hold a referendum to repeal Article 40.3.3 in May 2018. The People will be asked to delete this Article and to insert a provision that expressly says that provision may be made by law for the termination of pregnancy. The Taoiseach said that the referendum will present the People with a choice to enable the Irish parliament to legislate for abortion care at home, or to continue to export abortion to other jurisdictions and to put the lives of women in Ireland at risk.

The Cabinet will publish indicative legislation for a GP-led abortion service ‘on request’ up to 12 weeks, and more limited access to abortion in later pregnancy.

After the referendum

In the book we look beyond the referendum, to what might come next once the 8th Amendment no longer absolves the Oireachtas of the responsibility to make law to provide for the needs of women in Ireland. We include detailed proposals for how new legislation on abortion might be designed, including draft legislation that gives effect to the proposals that appear to have received Cabinet support this week in a way that respects the rights of pregnant people in Ireland.

“…the rights of pregnant people can be developed in ways that truly respect and protect bodily integrity, privacy, and the right to be free from inhuman and degrading treatment.”

In doing this, we argue that repeal of the 8th Amendment would create opportunities for the progressive interpretation of the Constitution, so that the rights of pregnant people—for so long narrowed down to a bare right to life said to be equal in stature to that of an unborn foetus—can be developed in ways that truly respect and protect bodily integrity, privacy, and the right to be free from inhuman and degrading treatment. This, we argue, would compel the Irish state to provide for lawful abortion, but would allow it to pursue the socially valuable objective of preserving foetal life provided in doing so it respects the constitutional rights of pregnant people.

This can be done by introducing law that makes abortion available without restriction as to reason up to at least the twelfth week. After that such a law might make lawful abortion available on broadly drawn health grounds so that pregnant people can truly determine the course of their own reproductive lives, and so that victims of sexual violence or those who have received unexpected foetal diagnoses will be able to be supported through a decision to an end a pregnancy, rather than forced through a punitive ‘qualification’ processes. This is what we are calling for now that the Referendum has been announced.

Like the Citizens’ Assembly and Joint Oireachtas Committee on the 8th Amendment, we draw distinctions between the availability of abortion after 12 weeks and after 24 weeks, with later abortion (after 12 weeks) being truly exceptional in law, just as it is in life. Illustrating the feasibility of such an approach, we include in the book draft legislation that gives effect to this approach. This makes our book essential reading for anyone involved in the campaign.

Our objective in writing this book was threefold. First, we wanted to make the constitutional arguments about the 8th Amendment clear and accessible and, in so doing, to show that from a legal perspective there is nothing unusually difficult about legislating for abortion and no reason why, uniquely among medical procedures, it should be regulated within the text of the Constitution. Second, we wanted to show how the Constitution itself could develop after repeal to reinvigorate the personal rights of pregnant people and to strike a balance between protecting these legal rights and pursuing the social objective of preserving foetal life through voluntary, consensual, and well-supported pregnancy. Finally, we wanted to show that, by drawing on experience in other countries and on international human rights law, and by committing to ensuring that pregnant people have sufficient certainty and support to make decisions about their own reproductive lives, a workable, reasonable, and rights-based law on access to abortion can be imagined and designed for Ireland.

Now, with the announcement of the Referendum on the 36th Amendment to the Constitution, we are a step closer to achieving some of these goals, but there is still much work to do. Given this week’s developments, Policy Press has brought forward the publication of the book to 1 February: please circulate information about it to anyone who is involved in the debates around the referendum.

 

‘Repealing the 8th: Reforming Irish abortion law‘ by Fiona de Londras and Mairead Enright  is publishing on 1 February 2018 and is available with 20% discount on the Policy Press website. Pre-order here for just £10.39.

It will be available Open Access under CC-BY licence.

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The views and opinions expressed on this blog site are solely those of the original blog post authors and other contributors. These views and opinions do not necessarily represent those of the Policy Press and/or any/all contributors to this site.

The relationship between work & health in India

Martin Hyde, co-editor of  Work and health in India, discusses the relationship between work and health in a country with one of the fastest growing economies in the world and with a labour force of nearly half a billion people. 

Martin Hyde

Work stress and its effect on our health is something that we hear a lot about in the UK. Working longer and longer hours, having to do more and more in less and less time, increasing job insecurity are things that many of us experience. Newspapers and internet sites are full of stories about the damage that this can do to our overall sense of well-being as well as remedies to counter these negative effects. Many of these are supported by decades worth of academic research on the relationship between the working environment and health.

However, once we go beyond the high-income countries of Europe, North America and Japan we know very little about the nature of work and its impact on health in lower and middle-income countries. Given that these countries contain some of the world’s largest workforces and fastest growing economies this is a major oversight.

It was the desire to correct this oversight that motivated us to put together this book on the relationship between work and heath in India. Whilst there had been some research on this topic in India this book is one of the first to address the topic of work environment, stress and health in a rapidly developing country.

“The benefits of India’s tremendous economic growth have been unevenly distributed across society.”

India is one of the fastest growing economies in the world. The growth of the Indian economy has been matched by the steady increase in its labour force, which has risen from 330 million in 1990 to nearly half a billion people in 2014. This is roughly double the size of the labour force of the entire European Union.

Not only has the workforce grown but it has also changed from one dominated by agriculture to one with vibrant and growing service and manufacturing sectors. However, the benefits of India’s tremendous economic growth have been unevenly distributed across society.

The same is true of developments in the health of the Indian population. Life expectancy has risen steadily for both sexes and infectious diseases have declined over the past few decades. However, this fall in infectious diseases has been accompanied by a rise in non-communicable diseases (NCD), which now account for the top three causes of death in India.

“Chronic psychosocial stress at work is now becoming an important threat to the health of employees.”

So not only is the Indian economy and workforce beginning to more closely resemble those of the advanced industrial economies, so too are its disease and mortality profiles. As the labour market underwent a substantial transformation and while some traditional occupational hazards disappeared, chronic psychosocial stress at work is now becoming an important threat to the health of employees. For us, these twin developments called for more research to look at these issues.

To start to do so this book brings together a multidisciplinary and multinational authorship with researchers from all across India, from all careers stages, as well as researchers from the UK and Sweden. The range of topics covered, and methods and data used throughout the book reflect the diverse nature of the Indian economy.

Some chapters, such as those by Sanjay K. Mohanty and Anshul Kastor, and Harihar Sahoo, draw on large scale surveys to map the national picture of occupational inequalities in health. Other chapters focus on specific occupational groups such as tea pickers (Subrata K. Roy and Tanaya Kundu Chowdhury), police officers (Vaijayanthee Kumar and T.J. Kamalanabhan) and scavengers (Vimal Kumar).

What comes out in all of these chapters is a complex picture of the relationship between work and health. On the one hand we see many of the same issues in India that we see in other countries. Work stress is bad for your health wherever you live. On the other hand there are some findings that appear contradictory. For example, those in the highest occupations seem to have the highest rate of diagnosed illness. However, this is probably because only those in the top jobs can afford to go to a doctor. Finally, underlying all of this we see the intersections between gender, class and caste that impact on both work and health.

 

Work and health in India edited by Martin Hyde, Holendro Singh Chungkham and Laishram Ladusingh is available with 20% discount on the Policy Press website. Order here for just £60.00, or as an ebook for £21.59.

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The views and opinions expressed on this blog site are solely those of the original blog post authors and other contributors. These views and opinions do not necessarily represent those of the Policy Press and/or any/all contributors to this site.

Siblings with and without disabilities think differently to each other about the comparison of their young adult experiences – and why it matters

This blog piece is based on the following article: Meltzer, A. (2017) Comparative life experiences: Young adult siblings with and without disabilities’ different understandings of their respective life experiences during young adulthood. Families, Relationships and Societies, early view.

Originally published by Sibling Leadership Network on 1st December 2017. 

 

It’s a familiar feeling. You are a sibling of a person with a disability in your late teens or early 20s. You are busy constructing your life around you – doing new things, making new relationships, learning to drive, moving out of home, finishing school, starting work. Your world is expanding. And yet there is something uncomfortable lingering in your mind. Maybe it is a feeling of guilt, maybe it is a feeling of inequity, maybe it is a feeling of being awkwardly advantaged. Whatever it is, it is a feeling that is there when you look over at the experience of your brother or sister with a disability and see that these life changes that you are making come with more hurdles when your brother or sister tries to do the same things – or perhaps they are things that you believe your brother or sister may never do at all. You value your own life and experiences, but that feeling is always there somewhere. It’s hard to think about and even harder to talk about, especially with your brother or sister themselves – because it feels unkind to point out the discrepancy between you to them – so you bury the feeling and forge ahead, valuing your own experiences, but carrying that sense of disquiet always with you too.

… But what if it did not have to be this way?

What if your brother or sister thought about the situation differently to you?

What if, by never asking them about it, you missed your opportunity to discover that perhaps they do not perceive the differences in the same way as you?

How might that new knowledge help you?

 

What does research say about how each sibling thinks about the comparison?

I conducted research about the relationships between young adult siblings with and without disabilities. I spoke to 25 young people with a disability and 21 of their brothers and sisters about what their sibling relationships are like and how they navigate their lives together during young adulthood. As a researcher, I had the opportunity to ask questions that might usually be too hard to ask directly within families… I had the opportunity to ask what each thought about their respective life experiences during young adulthood, especially the comparison between them.

 

What did siblings of people with disabilities say?

The story that siblings of people with disabilities told me was usually consistent with the scenario at the beginning of this post. Most siblings of people with disabilities generally perceived themselves as advantaged during young adulthood compared to their brothers and sisters. They perceived they had easier and more numerous opportunities – and that in the future they would be able to learn, work and live where and with whom they wanted, but they were unsure if their brother or sister would get to experience the same things as them. Often they appeared to feel that this was an awkward and inequitable difference between then. Often they felt bad about it, and sometimes they felt guilty about it.

 

What did young people with disabilities say?

However, when I spoke to young people with disabilities, they told me a different story – or actually, a range of different stories. Young people with disabilities had a variety of different views about the comparison between them and their brothers and sisters, of which feeling disadvantaged was only one possible option. Across my research, young people with disabilities told me other ways they felt:

• The difference isn’t about disability.

Some young people with disabilities did not view the comparison between themselves and their brothers and sisters as about disability at all. Instead, they explained the differences between them to be because of other factors that affect all siblings – age differences, making different choices, having different preferences or enjoying different personalities. One sister with a disability said, for example, that she did not mind that all her younger sisters were married when she as the older sister was not, because she preferred the control that comes with being single. When the comparison between siblings’ experiences was not seen as about disability, the differences between them felt far less awkward.

• I want that too, I just don’t focus on feeling bad about it.

Other young people with disabilities did see the differences between themselves and their brothers and sisters as about disability – and they did indeed want to share their siblings’ experiences – but they did not to focus on feeling too negatively about it. One brother, for example, just stated the differences in a matter of fact way and then moved on to talking about other things he cared about more. Another person noted that she did feel jealous and frustrated about her siblings doing things she could not do easily – such as travelling or moving out of home – but said she also felt genuinely happy for her siblings’ experiences and did not resent them taking up those opportunities, in fact, she wanted them to. Others spoke about advocating or fighting for their right to be able to take up those experiences themselves, but did not blame their siblings for gaining the experiences with greater ease.

• Actually, there are benefits to the differences between us.

Finally, some young people with disabilities noted benefits to themselves of the differences between them and their brothers and sisters. Some felt that their own experience was better, such as two young women who felt that their disability made their academic achievements appear all the better compared to their siblings. Another person felt that her sister’s experiences acted as a reminder to her family of the level of choice and autonomy that she herself should also be recognised as having, and therefore that her sister’s different experiences actually helped to safeguard her own quality of life.

This range of views highlights that young people with disabilities commonly think differently to their brothers and sisters without disabilities about the comparison between their life experiences during young adulthood. It does not discount the possibility that some young people with disabilities may feel disadvantaged and may resent the inequality they experience compared to their siblings – but it highlights that this is one of a range of possible views. The research also does not suggest that young people with disabilities do not want to share their siblings’ experiences or that they are completely satisfied with their opportunities – many would indeed like more opportunities, the research just highlights that often they are able to see this in a broader perspective of the whole of their lives and relationships. Finally, the research does not represent all young people with disabilities – although people with a range of disabilities were included, including intellectual disability, there is still more to find out about what, for example, people with a high level of support and communication needs think. The research does however show a range of possible views.

 

Why does this matter? What can be gained from listening to what young people with disabilities say?

The findings of this research matter because they highlight that young people with disabilities have different views to their brothers and sisters, and that sometimes they may see their own experiences during young adulthood as more normalised, more empowered or in a different perspective than their siblings without disabilities do. Understanding young people with disabilities’ own views about their lives is important, not only for hearing what they have to say, but also because appreciating their perspectives may help sibling relationships.

Understanding young people with disabilities’ broad range of possible views means that the awkward sense of inequity that some young adult siblings of people with disabilities feel may not always reflect what their brother or sister is actually experiencing – it may reflect a more difficult or troubled view of what disability means in their brother or sister’s life than what that brother or sister actually feels themselves. Understanding the broad range of possible views should not stop siblings of people with disabilities acknowledging and challenging the inequities of their comparative opportunities – however, it does suggest that sibling relationships might improve, and feel less awkward, if young adult siblings of people with disabilities knew more about their brother or sister’s perspective. With this knowledge, young adult siblings with and without disabilities can perhaps together have relationships where they see their comparative experiences in a new light, building on each other’s understandings.

 

Ariella Meltzer is an adult sibling and a researcher at the University of New South Wales in Sydney, Australia.

The full article is available for free in the month of December 2017. You can download it here.

Carers Rights Day: International Perspectives

By Jo Moriarty, Social Media Editor, International Journal of Care and Caring

Every year Carers UK holds Carers Rights Day to help carers find out about their rights and how to access help and support. There is overwhelming evidence that many family carers often care for many years without knowing what support they are entitled to. However, carers’ rights need to be embedded within wider health, social, and employment policies, as two articles published in the journal this year reveal.

This year’s Carers Rights Day in the UK comes shortly after publication of the third issue of the International Journal of Care and Caring for 2017.

As the journal’s first year of publication draws to an end, it seems a good opportunity to think about carers’ rights in an international context by highlighting two articles that have appeared this year.

1. Collateral damage: Australian carers’ services caught between aged care and disability care reforms by Ara Cresswell FREE DOWNLOAD

The Australian Bureau of Statistics has shown that almost a third of Australian primary carers provide more than 40 hours of care per week. One third also live with some form of disability themselves. Almost three quarters rely on welfare benefits as their main source of income, meaning that their incomes are much lower than those who do not care.

Services for carers in Australia built up in a fragmented way and were often piecemeal, explains Ara Cresswell of Carers Australia. Set against this, flexible funding meant that support could be targeted on different types of carer and carers could access services as consumers in their own right. This changed in 2008 with the transfer of all funding for aged care to the national government, including grants such as the National Respite for Carers Program (NRCP). Carers Australia argues that the changes that have flowed from this have led to many carers receiving reduced support because help for them is so strongly linked to the entitlements of the person for whom they care.

A second factor was the introduction of the National Disability Insurance Scheme (NDIS) in 2012. It had been hoped that personal budgets for people with disabilities would help many carers return to paid employment. However, this has not proved to be the case, especially as these funds can only be used by carers themselves for training relating to caring and not to provide replacement care while they are at work.

Taken together, suggests Cresswell, an unintended consequence of these two reforms is that services for carers are ‘collateral damage, caught between aged care and disability care policies’.

2. ‘Enabling carers to care’: making the case for a European Union action plan on carers’ by Christine Marking FREE DOWNLOAD

Turning to Europe, Christine Marking, also highlights the problems when policies do not specifically consider the position of carers. She highlights the variability in support for carers across the European Union (EU). While recognising that most of the decisions that most affect carers occur at a national level, she argues that there is a place for EU wide legislation, such as the right to carers leave or help with training so carers can enter or re-enter the labour market. Another of her ideas is for a European Year of Carers, along the lines of previous years such as the European Year for Active Ageing in 2012 or the 2018 Year for Cultural Heritage. Ideas such as these could, Marking suggests, help promote a more integrated approach to support for carers and enable member states to learn from good practice in different countries. She concludes:

‘If carers are expected to continue providing care – and they are – meeting their needs should be an embedded dimension of health and social policy development.’

These are just two of the articles in the International Journal of Care and Caring (IJCC), which is a multidisciplinary journal designed to advance scholarship and debate about all forms of care and caring among researchers, policymakers, practitioners, family carers, and all those concerned with carers’ rights. The vision for the journal is set out here.

The IJCC welcomes research articles, debates and issues papers and book reviews which can be submitted here. Debates and Issues papers are free to access and every month a different research paper is available to read on temporary full text access.

You can recommend the journal to your librarian or take out a personal subscription here.

Read the latest issue of the International Journal of Care and Caring.

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The articles featured in this blog post are free to read in the ‘Debates and Issues’ section of IJCC Vol.1 No.2

Am I a patient?

Alan Cribb unravels the transition from an epidemiological approach to a philosophical approach to healthcare he discusses in his new book – Healthcare in transition – by examining how his identification, or not, as a patient impacts on his research.

Whilst working as an academic I tend not to identify myself as a patient. 

In the last few years one of the themes of my work has been patient-centred or person-centred healthcare, and I have just completed Healthcare in transition, a book in which I tried to tease out some of the elements of, and tensions within, this idea. But I have never self-identified as a patient in my writing and I only occasionally do so in my face to face encounters with trusted colleagues and in what feel like safe spaces to me.

In some ways this is odd. I am not simply a patient in a notional sense – like very many people, I have regular interactions with medical consultants and other health professionals, I follow a regime of treatment and I have health-related conditions that challenge my identity and frame the way I organise my life. So why not self-identify as a patient in my academic work?

“Why not self-identity as a patient in my academic work?”

Partly it is probably just about privacy or for reasons of self-protection – not to invite threatening line of enquiry from others. But it feels as if it is about something more than that. First and foremost it seems presumptuous. It feels like I have been invited to the meeting with one ticket – as a researcher – but now I am claiming to have a further ticket and am expecting to vote twice!

This sense of cheating applies however I think about what counts as a patient, and I have to confess that I am confused about this. In health services research, for example, it is now a methodological and ethical norm to worry about the inclusion of either patient perspectives or patients in some fuller sense. But there is a spectrum of attitudes and practices in response to this norm.

In some cases – and this is to exaggerate for effect – ‘patients’ is treated as a kind of self-fulfilling marginal category, such that if people happen to have any other source of relevant expertise – they are health professionals, or researchers, or activists or even heavily engaged in a peer led patient group then they will to some extent be disqualified as ‘patients’.

This attitude stems from an understandable concern that the identity of patients isn’t colonised and misrepresented by powerful voices but, at the same time – certainly in this exaggerated sense – it risks reproducing a deficit view of patients.

“I feel either disqualified or under qualified.”

At the other end of the spectrum there are strong patient voices and groups who will not only lobby for involvement in research but will themselves lead research and will challenge prevailing orthodoxies – for example, questioning not only the practices of patient involvement but also the ways in which research agendas are set and research is conducted and so on. These kinds of patient voices play an important role and can be inspirational. But there is also a danger here – again at the extreme – that the identity of patient itself becomes professionalised and owned by a few well-organised people.

The first account coincides with my worry about being presumptuous. I need to be cautious about saying I am speaking as a patient, especially with any implication that it is on behalf of other patients, when I already have a hearing as an academic.

But I am equally ruled out on the second account. I have not taken any special steps to become an expert patient; nor do I have any particular credentials to claim a quasi-professional status in this regard. For me to act as if I had would be to cheat.

In short, I feel either disqualified or under qualified. But the issue of my patient identity will not go away completely. It seems unavoidable because even not mentioning it feels like a significant choice. In some contexts there are temptations to mention it – because for certain audiences it may add a sense of authenticity and credibility. In other contexts there are temptations not to mention it – because, for example, some clinicians or others may worry about what axe I have to grind and see it as a source of ‘bias’.

How far this issue is seen to be of importance, and in what respects, is arguably a function of the kind of research we are talking about and also of disciplinary assumptions and conventions. But for anyone who thinks ‘reflexivity’ matters it does seem to be a question worth asking.

If I am being reflexive as an academic then I can treat my identity as a source of problems or limitations that need to be acknowledged, or as a source of legitimacy or authority, or sometimes as a combination of both. This seems as relevant to patient identity as to other aspects of identity. On this account there seems to be something seriously lacking in my approach to date.

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Challenging the politics of early intervention

Nicola Horsley

Ros Edwards

Val Gillies

“The past decade has seen a rash of early intervention programmes targeting mothers of young children.

Reports by the World Health Organisation and UNICEF, and early years policy and service provision in the UK and internationally, are now characterised by an emphasis on early intervention in the belief that pregnancy and the earliest years of life are most important for development. It has become the orthodoxy in a whole range of professional practice fields.

The idea of being able to intervene in parenting to ensure better life chances for children feels constructive and positive, but there is little evidence to suggest that it works. Moreover, early intervention doctrine ultimately holds mothers accountable for poverty and other social ills.

“…there is little evidence to suggest that it works.”

Pressure on mothers

Early intervention is directed at mothers as the core mediators of their children’s development. The significance of mother-child relationships in the early years often is underlined through reference to the developing brain. For example, the website of the influential Harvard Center on the Developing Child refers to mothers as ‘buffers’ between their children and adversity. As buffers, they are held personally responsible for inculcating what the Harvard Center terms ‘a biological resistance to adversity’ in their children.

The quality of mother-child relationships is posed as a decisive lever in building children’s brains, and is a core principle structuring the everyday work of many early years intervention programmes. In one UK early years intervention initiative that targets young and marginalised first time mothers, the Family Nurse Partnership programme, practitioners provide mothers with a sheet headed ‘How to build your baby’s brain’ featuring a list of activities claimed to enrich neural connectivity, such as reading books, singing rhymes, and playing on the floor.

“The deprivation facing poor working class families is posed as a result of poor mothering.”

The responsibility loaded onto mothers is especially pronounced in relation to low income, working class mothers and Black and minority ethnic mothers, as both cause of and solution to their children’s marginalisation and poverty.

The deprivation facing poor working class families is posed as a result of poor mothering and consequently the stunted brains of their offspring, at the same time as they are positioned as buffers who can mitigate against and overcome the effects of a harsh wider environment for their children. Early intervention programmes such as the UK’s Family Nurse Partnership, the Solihull Approach, and Parent-Infant Partnerships, overwhelmingly are delivered in areas of deprivation to poor mothers.

Ideas about brain science are used to legitimise interventions in the child rearing habits of working class families, protecting children brought up in poverty from any effects of their disadvantage and promote their social mobility. The social and structural causes of hardship and need that are being experienced by these families in the present are effectively masked, placing mothers as hidden buffers against the effects of privation on their children.

The developing world

Globally, UNICEF brings together early years development and parenting to offset children experiencing war and hunger on the basis of the speed of new neural connections formed in the brain in the early years, asserting that good parenting will help children overcome multiple adversities such as violence, disaster, and poverty. Despite the overall paucity of evidence that early years intervention works, initiatives are being rolled out across the developing world, in the belief that improved mothering will surely benefit the state of the nation.

For example, the ‘Fine Brains’ (Family-Inclusive Early Brain Stimulation) programme seeks to promote parental stimulation and interaction to improve children’s brain architecture in sub-Sahara. It asserts that mothers in these countries are ill-equipped to maximise the benefits of interaction, need to be trained, and then to train their husbands to parent properly. The complex and diverse historical, economic, political, social and religious contexts of sub-Saharan Africa are obscured in favour of a focus on individual mothers as able to overcome poverty, conflict and post-conflict, engrained gendered inequalities, and so on, through improving their knowledge of child development and home engagement practices.

“Despite the overall paucity of evidence that early years intervention works, initiatives are being rolled out across the developing world.”

 

A meritocratic construction

The policy and practice preoccupation with how poor mothers and deprived families bring up and nurture their children relies on a meritocratic construction of the wealthy and privileged as having better developed brains. This is a statement that many of us might find offensive. But within the confluence of brain science and early years intervention, success is naturalised and unproblematically correlated with brain structure and intelligence. From this perspective, the solution to poverty is to make people smarter. Working class mothers, black and minority ethnic mothers, and mothers in the global South can enable their children to think their way out of their predicament.

The idea that hardship and discrimination is to do with how much attention of the right sort that mothers give to their children, and the notion of countering global traumas and inequalities through parenting, is jaw-dropping. It demonstrates why early intervention policy and practice deserves more critical scrutiny.

 

Challenging the politics of early intervention by Val Gillies, Rosalind Edwards and Nicola Horsley is available with 20% discount on the Policy Press website.  Order here for just £18.39.

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TripAdvisor helps us choose hotels and restaurants – so why not where we end our days?

Originally published by The Conversation on August 1st 2017. 

Tony Walter

My 91-year-old mother was deeply unhappy at the geriatric hospital in which she found herself after breaking her ankle.

But we knew little of the alternatives. Official inspection ratings offer impersonal information. So how were we, her children, supposed to gauge the quality of other establishments offering care?

Our saviour turned out to be Alison – my mother’s hairdresser. As a specialist in older, housebound clients, she had continued to do her customers’ hair as they moved to various hospitals or care homes.

Alison gave us the names of three places nearby that our mother might prefer, and we arranged her transfer within 36 hours. It was a move which transformed the quality of her last few months of life.

Unlike formal inspectors, Alison was an unthreatening, secret observer of each of the institutions she visited. She proved to be a knowledgeable and reliable guide. Without her, my mother’s life could have ended very differently.

The trouble is, not every family is lucky enough to know an Alison.

In the UK, people are expected to make their own choices about their own care in the final months and years of life. But how can people become well informed about different care providers, especially when a crisis forces decisions to be made at short notice? Alison revealed the importance of informal contacts and social networks in allowing individuals and families to make good choices.

How could her role be made available to all families seeking similar information? Care settings for those nearing the end of life are, in terms of inspection, a bit like restaurants. Technical medical and nursing procedures, like a restaurant’s kitchen, need inspecting by technical inspectors. But most of the care provided at the end of a person’s life is not of the technical kind. It involves hard to measure factors like respect, a sense of belonging, and relationships with staff. It is in many ways like assessing a restaurant’s ambience. In the hospitality trade, this is something best considered by mystery customers who collectively author good food guides, or by informal online ratings like on TripAdvisor.

Such assessments rightly abandon the myth of objectivity embedded in formal inspections. Potential consumers perusing TripAdvisor ratings understand them as subjective experiences to be taken on balance.

So collective, honestly subjective, online ratings should be available for families to make informed choices about different care settings. For well-being over the course of life, we need to be able to read about customer experiences of health and care agencies just as much as we need to read about experiences of restaurants, hotels and holidays.

A great example of what is needed is carehome.co.uk, which gathers and publishes reviews of care homes, along with other information provided by the home. Many of the care homes listed, however, have no reviews. Care at home is reviewed by the online database homecare.co.uk, although the vast majority of organisations that look after people in their own homes have no reviews.

Those two websites are funded by industry subscriptions. Proposed reviews are authenticated and vetted before publication, and reviewers are advised not to publish complaints but send them direct to the agency. These safeguards should eradicate vexatious reviews, although they may also present an unrealistically positive overall view of user experience. The sites are, however, a step in the right direction.

Of course, TripAdvisor-style ratings for the “last journey” tend to come not from the actual service-user or patient. Most reviews are from family and friends, which could be an issue. Complex family dynamics – such as guilt at putting parents into care, or anxiety that care costs are eating up the inheritance – can mean families are rarely the baggage-free observers that Alison was.

Reviewing the situation

Of more concern is that even the most loving, attentive and observant family member may know little about the person’s experiences at the hands of their paid carers. This might only be achieved by CCTV cameras, but do we really want care homes, hospital wards and (in the case of home care) even the person’s own home to become zones of electronic surveillance?

No way of monitoring or collecting information will be perfect. And we should acknowledge that the trajectory of frail elderly dying is always uncertain. No one can predict how they will feel as bodies and minds fail, so all choices will entail a degree of guesswork.

Rigorous formal inspection – and public enquiries when things go dramatically wrong – are of course essential. But if people nearing the end of life (or their families) are to adopt the prescribed role of informed consumer, comprehensive collations of user experiences are vital.

End of life care is more important than booking a restaurant or the next holiday – so information needs to be just as good, or better.

What death means now by Tony Walter is available with 20% discount on the Policy Press website.  Order here for just £7.99.

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