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Overview
Care-giving transcends race, gender and age and most people will be a care giver or receiver (often both) at some point in their lives. This book explores the extent of caregiving in the UK and discusses its impact on individuals, groups and communities, as well as health and social care professionals.
It covers ways of identifying carers and providing information and advice and, given the likelihood of practitioners themselves providing care, a discussion regarding maintaining resilience and the extent to which personal experiences guide and inform practitioners response to work with carers is included. Exercises allow the reader to explore ways practitioners can engage with and support carers. The recent legislative changes brought about by the Care Act 2014 is discussed, as well as relevant policies.
Caregiving has the potential to transcend disciplines, so this text will appeal to students of a variety of undergraduate and postgraduate programmes, and across the professional arena including social work, nursing, occupational and physiotherapy.
The author is donating her royalties on this book to Carers UK and Carers Trust.
Product Details
| ISBN-13: | 9781912096954 |
|---|---|
| Publisher: | Critical Publishing |
| Publication date: | 06/06/2018 |
| Series: | Early Intervention, Prevention and Support |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 188 |
| File size: | 558 KB |
About the Author
Dr Valerie Gant is an experienced social work practitioner and senior lecturer at the University of Chester. Val has written and published on a variety of subjects relating to health and social care.
Her personal experience of having a child with severe learning disabilities has both inspired and informed her in-depth professional knowledge of this area.
An active researcher, Val is interested in carers, disability issues and auto-ethnography, both as a process and a method, and has recently published a paper on this method in QSW.
She lives by the sea, and when she isn't writing and researching she enjoys walking her dog and spending time with her family.
Dr Valerie Gant is an experienced social work practitioner and senior lecturer at the University of Chester. Val has written and published on a variety of subjects relating to health and social care.
Her personal experience of having a child with severe learning disabilities has both inspired and informed her in-depth professional knowledge of this area.
An active researcher, Val is interested in carers, disability issues and auto-ethnography, both as a process and a method, and has recently published a paper on this method in QSW.
She lives by the sea, and when she isn't writing and researching she enjoys walking her dog and spending time with her family.
Dr Steve J Hothersall is Head of Social Work Education at Edge Hill University and a registered social worker and nurse. He has written on social work practice with children, young people and their families, mental health, need, social policy and philosophy, especially epistemology. Steve has also served on the Editorial Board of the British Journal of Social Work and reviews for a range of academic journals. His academic interests relate to methodology, the use of philosophy to inform both teaching and practice, and research focusing on the development and use of professional knowledge, drawing on underpinning epistemic principles and considering their role and application in knowledge communities. He is currently working on developing and implementing a model to support practice and research underpinned by reference to philosophical pragmatism. He is also passionate about the music of Ludwig van Beethoven, and the role of music in the promotion of wellbeing.
Read an Excerpt
CHAPTER 1
Introduction: Why this book and why now?
Over the last three decades, the titles 'care-giver' and 'carer', as both a role and as socially recognised and (perhaps) accepted 'entities' have emerged. Changes in legislation which enshrine such recognition have now occurred, most recently in the Care Act (2014) which arrived with much promise and potential for optimism, with politicians going so far as to proclaim it '[T] he most significant reform of care and support for 60 years' (Lamb, 2014).
Demographic changes in society, an increase in life expectancy – seen as a celebration in the twentieth century, and a challenge in the twenty-first century (Macnicol, 2015) – as well as policies aimed at supporting this group of people, many of whom have illnesses associated with age, all add to the realisation of the ubiquitous existence of carers and of them having a definable role. Although there has been a growth in total life expectancy, this has been outpaced by the issues associated with the number of older people who are frail and living with co-morbidities (Hulme et al, 2016). Due, therefore, to the increasing health and social care needs of an older population, the likelihood of people needing a high level of intensive support as they age has increased. The effect of the pressures on health and social care brought about by the current economic climate also has an impact on the likelihood of an individual needing 'informal' care. National health and social care services now only tend to work with those in crisis, and on a short-term basis, meaning friends and relatives support and assist with care that in decades past would more likely have been addressed within the 'professional' arena. According to the 2011 Census, 10.3 per cent of the UK population provided unpaid care (ONS, 2013), an increase of 600,000 since the 2001 Census, the first time a question on the provision of unpaid care was asked, and this number looks set to increase, with the most intense caring, that of over 50 hours a week, increasing most (Carers UK, 2015; Franklin, 2015; Robards et al, 2015).
As well as the issue of physical decline, there is a notable increase in the number of people recorded as having dementia and associated mental health impairments (Alzheimer's Association, 2017; de Boer et al, 2015). Put simply, people are living longer, but the older one is, the more likely one is to be in poorer health and in receipt of care, most likely 'informal', ie unpaid care from friends or relatives. The emotional and psychological challenges of care-giving as well as the practical and physical impact need therefore to be recognised, understood, acknowledged, and supported. For practitioners working with and supporting carers, developing their own understanding of what caring is, and means, may lead to an increase in the building and developing of crucial relationships and may be the key to finding a gateway into that unique situation, culminating in a deeper and more successful connection. I believe it is that connection and our possession of the capacity to empathise that separates us out as a species and offers hope for the future. As professionals, we are duty bound to do the best we can with what we have at our disposal. As human beings, we are morally bound to recognise the importance of caring and to accord it the status it deserves. This text will hopefully provide the basis for a more enlightened and engaged appreciation of one of the most significant roles and functions within society – caring. Offering a discussion and analysis of some of the key research areas related to caring and highlighting these through the use of case study examples, this book offers a way to begin to explore the impact of caring on the lives of family carers and the effectiveness of support, as well as exploring ways to acknowledging this crucial role.
The aim of this introductory chapter is to begin to explore definitions of care and care-giving, and identify the perspective from which it is being considered, as well as providing an overview of the structure of the chapters that follow. The chapter will introduce the reader to the format of the book, designed as it is to encourage interaction: each chapter is designed to be worked through using case study examples and reflective and practical tasks. Further reading is suggested at the end of each chapter and a list of resources will be included.
Aims of the book
There is an ever-increasing reliance on family carers in everyday life (Carers UK, 2015; Hulme et al, 2016; Smith et al, 2015) with reports regarding the issue regularly appearing in the media; for example: "Undercover carers' save the taxpayer £40 billion a year' (Daily Express 15 Dec 2016). 'I became my mother-in-law's carer – but I just couldn't handle the stress of the job' (Daily Telegraph 5 May 2017) and 'The crisis of young carers: 'Going to school is a break" (The Guardian 26 Jan 2017). It is a topic also covered widely by radio; for example: Radio 2 'Carers Week' 6 Jun 2016; Radio 4 'The Secret Lives of Carers' 1 Dec 2015, and yet there is surprisingly little clarity regarding what 'caring' and 'care-giving' really means in real, practical terms. From a relatively simple word comes a vague, ambiguous and invariably complex phenomenon, and yet one which many people accept without question and believe they understand. For many, including those who are providing a significant amount of unpaid care to friends and/ or relatives, carers are still seen as 'other people', generally provided by social care agencies and importantly 'the ones who are paid'. The implications for (a lack of) identity of carers has significant consequences, and some of the reasons behind this, including the gendered nature of caring, the fact that caring takes place in the private sphere, and that the work undertaken by carers can be messy, unpleasant and hard, is discussed and explored in Chapter 4.
It is important to make the point here that this book is about those 6.5 million unpaid 'informal' carers, 1.6 million of whom provide 50 or more hours of care per week (Carers UK, 2015), with no pay, and often little support in managing their day-to-day activities. In the UK it has been estimated that the demand for care brought about by an ageing population will soon outstrip supply (McNeil and Hunter, 2014), and the ways in which carers or care-givers (I will use the terms interchangeably throughout the book) are supported by the state has an impact that goes beyond any individual situation. This book then is about care and care-givers, is intended as a text book for students of social work, social care, those in health care (nurses, occupational therapists, physiotherapists) and other cognate disciplines and as noted above, is written about those whom I call 'family' care-givers: those for whom caring is not a term of specific employment, and for whom there is little recompense. I debated about using the term 'informal' as opposed to 'family' carers; however, for me the term 'informal' does carers something of a disservice, as that term implies that caring is an activity undertaken casually, with some degree of choice in taking on the role, and a lack of responsibility for outcomes associated with the tasks of caring. Such is not the case for many. This book therefore, is for both students and practitioners, designed as a way of helping to work through and make sense of a very complex terrain. While paid carers will also find information of use in this book, the primary focus is on those who provide care for a family member, friend or neighbour in an unpaid capacity.
Recent legislative changes in the UK brought about by the Care Act (2014) have now altered the profile of carers, and as such a text of this nature is timely. The changing demographics of society mentioned above: people living longer and many more living with life-limiting illnesses brought about by the diagnosis and recognition of previously unrecognised disabilities, has increased the need for an up-to-date text that may be used by students and practitioners across the range of health and social care professions.
A professional and a personal perspective
This book was brought about following several research projects I have carried out exploring the lives of parent-carers of adults with learning disabilities. As a social worker, working in what was at the time a specialised adults with learning disability team, I noted and recognised the impact of care-giving and receiving care on people's lives. It is never a straightforward one-way process, and throughout my career I have observed many examples of reciprocal care. As an educator, working with social work and health and social care undergraduates and post-graduates, I have noted how the involvement of carers is threaded through all the modules and programmes I teach. For example, 'interprofessional working', 'critical social work practice', 'safeguarding vulnerable groups', 'social work law and ethics', as well as research and dissertation modules all engage with carers and the issues they face. Students also bring their own unique experiences of being carers (and in some instances, of receiving care) to the classroom and I have been privileged to listen to the many examples that caregiving students draw on to begin to make sense of their own place within this terrain. Likewise, several colleagues are involved in complex caring scenarios and I have noted and heard anecdotally that some employers are becoming aware of and are seeking ways of supporting staff members with caring responsibilities, beyond those of raising children.
Although this book is written primarily from a professional perspective, it is also my personal experience of being a parent-carer that has had a significant influence and impact on my values, my focus and the overall perspective provided here. My youngest daughter has what is currently referred to as a 'severe learning disability' and at the time of writing this book she is undergoing the transition between children and adult services. The personal experiences I have gained shape and frame my reference point when exploring issues relating to carers and it would be disingenuous of me not to acknowledge this here.
Definitions
As with many topics and social issues, understanding exactly what it is you are talking and thinking about is quite useful – hence the need to consider definitions. Notions of caring, care and care-giving are, as you might expect, fraught with ambiguity, confusion and misunderstanding. Here we will consider some of these in order that you can begin to appreciate some of the dimensions and complexities of this area and engage more critically with the issues.
Care – [Noun]: 'The provision of what is necessary for the health, welfare, maintenance, and protection of someone or something' (Oxford Dictionary online, Oxford, 2015).
Care-giver – [Noun] 'The person who provides the majority of care or guardianship, especially to a child or an infirm person' (Oxford Dictionary online, Oxford, 2015).
HCPC definition Carer – 'Anyone who looks after, or provides support to, a family member, partner or friend' (HCPC, 2015).
So what exactly is 'care'? Attempting to unpick the definitions above can bring with it more confusion. As a word, it was not until relatively recently that it began to be explored and debated as representing a phenomenon in its own right. Often seen as an identity or characteristic over which people have little control, the discrimination of a swathe of people brought care to the attention of theorists and academics in the latter part of the twentieth century (Larkin and Milne, 2014). The associated implications of dependency (of the person in receipt of care) and autonomy have been, and continue to be, critiqued by scholars and disability rights groups. This and the diversity of carers and that of the people whom they support is discussed in Chapter 2.
Leaving aside for the moment what could be crudely summed up as the disability rights vs carers' rights debate (Fine, 2014), if we then start to unpick terminology just by taking the 'provision of what is necessary for health, welfare, maintenance, and protection' as a starting point, this covers a huge spectrum. There are many differences to consider, including geographical: for instance, for those living in the North of Scotland, the provision of heating is more necessary for health, welfare and maintenance than for those people living in Southern Spain, where electricity for air-conditioning may be seen as a necessity. Cultural differences, including expectations of filial responsibility also differ between a culture where there is greater emphasis on respect and family care for older people than is generally seen in the UK (Solé-Auró and Crimmins, 2014). Older age, as an example, is seen either as a time when one has achieved status and wisdom or as something undesirable, depending on the cultural expectations of the society in which it is perceived and experienced. The value that different cultures place on old age has associations with how caring for older adults is seen and practised, and these values can become internalised by both the recipient and the giver of care. Caring or care-giving is rarely delivered by one individual, given in one direction. It is not linear: for example, older adults may have more than one child who is providing care, a child more than one parent, and a spouse may have children and siblings to assist with care provision.
So, if we go back to the Oxford Dictionary definition, 'the provision of what is necessary ...' and this time examine the aspect of health, presumably this incorporates both emotional and physical health? If it is self-defined, then what I deem necessary for my own physical health – a long walk with my dog on a regular basis – and my emotional health – to relax and listen to music (preferably Bruce Springsteen) on a daily basis – may not be recognised as important by others. For those others, the ability to smoke cigarettes may be seen as necessary by them for their personal welfare and emotional health, and yet there is an inherent tension between this and the physical health implications that lead to this activity being condemned by others. Here again, this raises the question of who is actually responsible for deciding and/ or recording 'what is necessary' and how does the subjective nature of the assessor make a difference?
Timing is also significant in any discussion regarding 'what is necessary'. To use the example of a parent-carer for a child with disabilities, the need for support to enable time to be spent with any other children in the family, perhaps in a practical way – taking them to school or attending parent nights – is likely to be limited by time, and is not likely to be seen as a 'need' in a practical sense for more than a few years. Likewise, the effect of some disabilities and some illnesses fluctuates. Provision of care for a partner who has multiple sclerosis, for example, is likely to be more intense at some times than at others, such is the nature of the physical effects of such a condition. Others may see the provision of 'what is necessary ' as being more about those needs proposed by Maslow (1943). He described these as relating to physiological, safety, emotional (social), esteem and self-actualising needs.
Few would doubt the centrality of such basic needs as food and water, warmth and shelter. However, if you see my point above about the variability in these needs depending on one's individual circumstances, the question is posed about how and where these are obtained; are they provided for, and if so, by whom? Should they be provided for? Is there a distinction to be made between needs being met by someone 'giving' or of someone 'receiving'? Are they obtained or achieved? When we start to explore who, and what, is a priority for these 'basic needs' and how they are met, (provided, or funded) both contextually and globally this exploration becomes even more complex.
When needs have been identified – which may differ depending upon whether it is by self-identification/ assessment, or by meeting some pre-determined criteria, which itself brings into question the subjectivity of any pre-determined category of need, how and by whom it is measured (Bradshaw, 1972) – the response to the needs of carers in any society is once again fraught with complexities.
(Continues…)
Excerpted from "Working with Family Carers"
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Copyright © 2018 Valerie Gant.
Excerpted by permission of Critical Publishing Ltd.
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Table of Contents
Introduction: Why this book?
Carers in the UK in the 21st century
The Background to Informal care giving
What do carers actually do?
What can be learned from research?
Carers in a multi-professional arena.
Carers under pressure
Looking to the future