Bereaved informal cancer carers making sense of their palliative care experiences at home

This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty‐two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed‐method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. Accounts of positive aspects of palliative caring were analysed using a thematic analytical approach from a constructionist perspective. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful interpretations to their loved ones’ death and their sense of loss. This included a sense of reward for doing something good, meeting the expressed needs of the patient, continuing with normal life as much as possible, improving the conditions of the relationship and meeting cultural expectations of the right thing to do. Being present at the point of death was positioned as rewarding because it facilitated the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced. This has implications for the prevention and amelioration of distress experienced by informal cancer carers, and suggests that future research should not ignore the positive aspects of providing palliative care.     

Professional carers' experiences of providing a pediatric palliative care service in Ireland

In this article the authors present findings on professional carers' experience of providing pediatric palliative care to children with life-limiting conditions. For this qualitative study, part of a national pediatric palliative care needs analysis, the authors engaged in 15 focus group interviews and drew on the responses of open-ended questions to give voice to the experiences of professional carers and to situate the humanity of their caring reality. This humanity is articulated through three themes: clarity of definition and complexity of engagement, seeking to deliver a palliative care service, and the emotional cost of providing palliative care. Further analysis of these themes points to a work-life experience of skilled and emotional engagement with children, and their parents, in complex processes of caregiving and decision making. Pediatric palliative care occurs in an environment where parents shoulder a large burden of the care and professionals find themselves working in underresourced services.     

Compassion in healthcare – lessons from a qualitative study of the end of life care of people with dementia

Objectives

A lack of compassion in UK healthcare settings has received much recent attention. This study explores the experiences of people with dementia in the last year of life and time surrounding death and how the presence and lack of compassion, kindness and humanity influenced the experience of care.

Design

Qualitative in-depth interviews with bereaved informal carers of people with dementia.

Setting

United Kingdom.

Participants

Forty bereaved carers – 31 women and nine men – with an age range of 18–86 years and from wide socioeconomic backgrounds participated.

Main outcome measures

Experiences of carers of care for person with dementia during last year of life.

Results

The interviews highlighted differences and challenges in care settings in providing compassionate, humanistic care and the impact of the care experienced by the person with dementia during the last year of life on informal carers during the bereavement period and beyond. Excellent examples of compassionate care were experienced alongside very poor and inhumane practices.

Conclusion

The concepts of compassion, kindness and humanity in dementia care are discussed within the paper. The ability to deliver care that is compassionate, kind and humanistic exists along a continuum across care settings – examples of excellent care sit alongside examples of very poor care and the reasons for this are explored together with discussion as to how health and social care staff can be trained and supported to deliver compassionate care.     

The informal sector of welfare: a crisis in caring?

The informal sector is the major provider of informal care for dependent people and everyday care for able-bodied people in Britain. A large and complex sector of care, it has come to occupy a central place in British government policies for health and welfare. Through the 1980s, the informal sector was increasingly identified as a solution to problems in the formal systems of care. The paper reviews the concept of informal care and the welfare philosophies which informed the development of these policies, arguing for a broader and more critical perspective which locates informal care within the context of the wider caring work that goes on in households. Seen in this context, structural features of caring that are celebrated as strengths (its base in kinship relations where carers are unpaid, for example), can be experienced as problematic by those involved in caring. As a case study, the paper focuses on the experiences of mothers caring for children on low incomes for insights into some of the contradictions of caring.     

Supporting working carers: do policies in England and The Netherlands reflect ‘doulia rights’?

Governments of advanced European welfare states with ageing populations are struggling to reconcile what seem to be conflicting policies. On the one hand, they are trying to increase the labour market participation of women and older workers. On the other hand, they are making more demands on people to care for disabled, chronically ill and frail older relatives and friends. Those caregivers are more likely to be women and older people. In this paper, we present the policies and experiences of carers from two countries that differ in type of welfare state, health and social care system and labour market context: England and The Netherlands. The aim was to compare English and Dutch policy measures for carers and examine their impact with evidence from two studies of people who combine work and care. The analysis is informed by the theoretical concepts of 'doulia' (whereby the state, employers and other sections of society reciprocate carers and other dependency workers for their unpaid caregiving) and 'doulia rights' (a carer's right to provide care without the risk of impoverishment). The evidence suggests that English and Dutch carers' policies have different strengths and weaknesses, but in neither country do they show strong commitment to the right to doulia.     

Silenced voices: hearing the stories of parents bereaved through the suicide death of a young adult child

The current paper reports findings from a qualitative research project that aimed to explore parents’ experiences following the suicide death of their young adult child. Twenty‐two Australian parents told of the suicide death of their son or daughter during the data collection period (2003 to late 2004). One narrative theme drawn from the interview data is reported here: the way in which suicide‐bereaved parents feel unable to talk about their child’s life and death, their experience of suicide and their resultant bereavement. Parents reported being silenced by others and silencing themselves in relation to talking about their bereavement. Parents’ private stories are used to explain the difficulties they faced given the contemporary social and cultural context of grief and suicide. Then follows an examination of the impact these difficulties had on their ongoing grief narrative and availability of social support. Implications for health and social care intervention are presented to assist in better preparing support workers in their interactions with parents bereaved in this manner.     

Difficulties in navigating the intersection of generalist and specialist palliative care services: A cross-sectional study of bereaved family's experiences of care at home in New Zealand

A generalist–specialist model of palliative care is well established as a framework for the provision of community care in resource-rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross-sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3 months of life. A modified version of the Views of Informal Carers—Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi-square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty-six questionnaires were returned (response rate = 21%). Seventy per cent of people (n = 579) spent some time at home in the last 3 months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2 days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision-making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that “generalists” are willing and able to play a key role in palliative care provision needs to be further challenged.     

Carer satisfaction with end-of-life care in Powys, Wales: a cross-sectional survey

A cross-sectional postal survey of bereaved carers was conducted in order to examine levels of satisfaction with services provided for people in their last year of life in the rural county of Powys, Wales, UK. A self-complete questionnaire, using a modified version of the Views of Informal Carers - Evaluation of Services instrument was sent to all bereaved carers of all those people dying of cancer in Powys between 1 April 1999 and 30 June 2001. Eight hundred and five (out of a possible of 815 people) were contacted and 407 agreed to receive the questionnaire. Out of these 407 individuals, 301 (74% of those who agreed to receive a questionnaire and 37% of the 815 contacted) returned a completed questionnaire. A single reminder letter was sent to non-responders. It was found that the majority of those who received help from district nurses or practice nurses (90%) said that they were excellent or good. However, nearly 40% of respondents reported needing more nursing help. More help was also needed from social care services. For 103 out of the 301 respondents, it was known that the deceased person wanted to die at home; only 44 did so. Only one-fifth of respondents had the opportunity to talk to someone from health and social services after their bereavement; a large majority (four-fifths) found this helpful. One-tenth of respondents reported untreated pain at home; however, there was evidence for an increasing proportion of those treated having received good pain relief. Although there are high levels of satisfaction with care and services received by Powys residents, deficits exist in relation to: symptom control, nursing help, assistance from social services with transport and bathing, communication, and bereavement support.     

The end of death in late modernity: An emerging public health challenge

Health promotion discourses often assume that death and loss are someone else's business—usually palliative care or bereavement care. Palliative care and bereavement care, in their turn, provide direct service, acute care approaches to death and loss. Between these two approaches, little health promotion is evidenced. This paper critiques the assumptions both make about death in late modernity arguing that death and loss are increasingly social experiences for people that require active support and community development from the ‘new’ public health. The past therapeutic emphasis and the secularized view of death are receding. A new approach to death and loss is needed and the new public health may have an important major role to play in addressing these changes.     

Public health and palliative care: principles into practice?

Public health approaches to palliative care have a valuable contribution to make in understanding and developing community capacity related to death, dying, loss and care, acknowledging that carers of the dying and bereaved are an important group who have their own significant needs in end-of-life care. Drawing upon a sociological framework, this article suggests that an even greater contribution is possible by an emphasis upon understanding lay and community logic within a social context. In particular, the article examines an emerging but significant shift to public health approaches in the ‘developing world’ and the ‘developed world’. It is argued that such approaches can contribute to a much broader agenda and potential for palliative care. Some obstacles to achieving this considerable potential are also noted. These relate to imbalances of power between a number of groups including medicine, palliative care, socio-cultural scientists and, not least, communities themselves. It is concluded that Weber's ideas about understanding may have much to offer in broadening out the principles of a palliative care that works with, and for, communities.     

A day in the life: a case series of acute care palliative medicine--the Cleveland model

Palliative care in advanced disease is complex. Knowledge and experience of symptom control and management of multiple complications are essential. An interdisciplinary team is also required to meet the medical and psychosocial needs in life-limiting illness. Acute care palliative medicine is a new concept in the spectrum of palliative care services. Acute care palliative medicine, integrated into a tertiary academic medical center, provides expert medical management and specialized care as part of the spectrum of acute medical care services to this challenging patient population. The authors describe a case series to provide a snapshot of a typical day in an acute care inpatient palliative medicine unit. The cases illustrate the sophisticated medical care involved for each individual and the important skill sets of the palliative medicine specialist required to provide high-quality acute medical care for the very ill.     

Family caregivers: Russian-speaking Australian women's access to welfare support

In Australia, rapid population ageing, and government efforts to support people who are chronically ill, elderly or with disabilities to live in their own homes, has led to the primary responsibility of care being undertaken by families. Through its social policies, the Australian government provides income and other types of support to informal caregivers. This article explores how Australian social policy and women's understanding of their roles impact on their access to welfare support. Qualitative research was conducted in Melbourne between February and June 2006. In-depth interviews were undertaken with eight Russian-speaking women involved in caregiving, purposively recruited through ethnic associations, and with four community service providers. Women based their expectations of the gendered and private nature of their role on the social policies in countries of their origin and, hence, did not attempt to access welfare support unless they were referred by health and welfare professionals. In addition, poor referral by professionals, influenced by past societal attitudes that caregiving is a gendered role, contributed to women's limited access to welfare benefits. Changes in the implementation of social policy are proposed to increase caregivers' access to welfare support and efficient utilisation of existing resources.     

A collaborative exploration of the reasons for lower satisfaction with services among Bangladeshi and Pakistani social care users

This study explored underlying reasons for the expression of dissatisfaction with services among Bangladeshi and Pakistani social care users in England and investigated, using a collaborative approach, how these could be addressed. In‐depth interviews were conducted in Birmingham, Leeds and London during 2012–2013 with 63 Bangladeshi, Pakistani and white British service users and 24 social care managers, social workers and care workers. A further 34 cognitive interviews were conducted within the same study. Following data analysis, three collaborative workshops involving service users and providers were held to validate the findings and to draw out policy and practice recommendations. Analysis of the cognitive interviews showed that higher dissatisfaction among Bangladeshi and Pakistani service users reported in social care surveys was not due to questionnaire design. Instead in‐depth interviews showed that dissatisfaction across all three groups was expressed along the social care journey, including accessing care, communication with social workers and the nature of care received. While many issues were common to all three groups, cultural differences also emerged as affecting experiences of social care. These included misunderstandings about family roles in care; gender issues, especially relating to women; language and communication barriers, alongside the need for a more nuanced approach to ethnic ‘matching’; and continuing limited cultural understanding among care workers. The collaborative workshops identified practical actions that could address some of the issues identified. These covered raising awareness of services within communities; improving support for informal carers; service user input to assessments; consistent and ongoing sharing of information; improving access; and more efforts to diversify and appropriately train the social care workforce. In conclusion, the paper presents the reality of dissatisfaction among these groups and argues for more action involving communities and service providers to address these persistent issues collaboratively.     

Schools in the welfare network*

Summary This paper examines the place of schools within the welfare network for children and young people, and notes potentially disfunctional elements of the social division of welfare. The stratification between welfare professions and the relationship between normal and crisis care is discussed. Three levels of school based welfare systems are identified, working alongside school attached and community based professions, each with its own characteristics. Trends are identified which reflect the development of more effective multi-professional cooperative care.     

Carers' quality of life and experiences of adult social care support in England

Informal carers make a vital contribution to the well‐being of the people they care for or look after. Against the policy background in England, the purpose of this study was to explore the views of carers who are in contact with adult social care support services. A qualitative study with 31 carers, who were recruited via local authorities and carers' organisations, was conducted between April and July 2012 to collect data on carers' experiences and perceptions of their quality of life (QoL) with and without adult social care and support for themselves or the person they look after. Through framework analysis, three key themes were identified: (i) definitions of social care services ‘for’ the carer or ‘for’ care recipient and social care outcomes; (ii) carers' access to social care services; and (iii) the meaning and value of informal care. We find that carers' QoL is affected by social care support directed at carers and support directed at those they care for, as well as access to services, the experience of stigma in communities, and in how individual needs and preferences are considered when making decisions about care. While there is much to welcome in the direction of policy in England, this study has shown that there are some gaps in thinking around these areas that will need to be addressed if the lives of carers are to be improved.     

Education needs in palliative care

A literature review confirms a need for improved medical educationon death, dying, terminal illness, and bereavement, and so palliativecare, from 1900 until the present time in the UK, Australia,New Zealand, USA, and Canada. The origins of the hospice movementand its influence are also discussed. Current palliative careteaching is recorded in a table of the courses initiated inmedical schools which demonstrates a lack of formal courses.An appreciation of the issues surrounding these topics is requiredfor the appropriate provision of palliative care, most importantlygood communication and symptom control. These together withthe issues of development of attitudes towards death, deliveringbad news of serious illness, recognition of palliative careas a philosophy, psychosocial aspects of care and counsellingthe bereaved are included in the recommendations for co-ordinatedinterdepartmental teaching. This acquisition of knowledge, developmentof attitudes, and improvement of skills in palliative care canbe achieved through the use of small group work and role-playexercises as well as formal lectures and experience at a hospice.Rectification of these curricula omissions will provide futuredoctors in a caring and competent manner with the ability topermit a dignified and ‘good’ death for the terminallyill.     

Personalised risk: new risk encounters facing migrant care workers

Many long-term care systems are seeking to address problems of growing demand, increasing expense, and higher user expectations. For many of them fostering care at home and private care arrangements are attractive options. The long-term care sector in England is typical of these systems. Over the last 2 decades, government policy in England has placed stronger emphasis on people’s choice and control when receiving care services. People with care and support needs may be eligible for public funds to employ care workers or to use them in other ways promote their well-being. These financial transactions are a major part of the policy of personalisation in adult social care, as confirmed by the Care Act 2014. Drawing on findings from life story interviews with 31 migrant care workers who had worked for disabled or older people in England, conducted 2011–2013, we note the potential for expanding the sociologically inspired concept ‘personalised risk’. This necessitates an appreciation of risks potentially faced by the multiple parties in the care relationship and a differentiated set of structural risks. Applying a multilevel analysis we highlight the potential risks of ‘informality’ of employment conditions experienced by directly employed care workers, the ‘emotional’ content of care worker-employer relationships, and ‘intimacy’ of employer/employee roles. In this article, we offer an empirical based contribution to the wider discussion of risks and risk theory derived from policy changes being adopted by many developed countries that increasingly emphasise individual responsibility for personal welfare within an uncertain and mobile social world.     

Psychosocial standards of care for children with cancer and their families: A national survey of pediatric oncology social workers

ABSTRACT

In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. This paper presents data from a national survey of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families. In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care. Both closed and open-ended questions were included.

Social work participants reported that psychosocial support is being provided at most cancer centers surveyed, primarily by social workers and child life specialists, addressing adaptation to the cancer diagnosis, treatment, and transitions into survivorship or end-of-life care and bereavement. While social workers reported offering comprehensive services throughout the cancer trajectory, many of the 2015 Standards are not being systematically implemented. Areas for improvement include funding for psychosocial support staff and programs, incorporation of standardized assessment measures, assessment for financial burden throughout treatment and beyond, consistent access to psychology and psychiatry, integrated care for parents and siblings, and more inclusion of palliative care services from time of diagnosis.     

Living with motor neurone disease: lives, experiences of services and suggestions for change

Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experiences of people living with MND? (2) What are people's experiences of services? and (3) Can improvements to care be identified? A qualitative research design was adopted using semi‐structured interviews. The topic guide was developed from existing literature. The study was based in three boroughs in London, UK. People living with MND and professionals were drawn from a database at King's College Hospital, and additionally, through ‘snowball’ sampling. Nine people with MND, five carers/family members and 15 professionals took part in the interviews. These interviews were audio‐taped, transcribed and checked for accuracy against the original recordings. Themes within the interviews were coded and grouped. The analysis was facilitated with the NVIVO computer software package. The findings are presented within three substantive groups: (1) the impact of MND on people's lives (the physical impacts of the illness, including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including methods of coping with the illness); (2) experiences of services (accessing service entitlements, information sources, professionals’ attitudes and approaches, and professionals’ knowledge and understanding of MND); and (3) suggestions for service change (better information and communication, including information on service entitlements; improved knowledge amongst professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. The paper concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research.