Factors that contribute to adult children caregivers' well‐being: a scoping review

The ageing of the population will increasingly result in reliance on the family for care in the community. Existing reviews have provided insights into the needs and health outcomes of family caregivers, but are disproportionately skewed towards spousal caregivers. Presently, a large majority of family caregivers are adult children. Adult children are distinct from spousal caregivers in terms of the combination of roles they occupy and the relationship they have with the care recipient. These unique considerations can have important implications for their well‐being. A growing body of literature has investigated the factors that contribute to adult children caregivers' (ACCs) well‐being; however, no reviews to date have synthesised this body of literature or appraised its methodological quality. Our objective was to identify the range and types of factors that contribute to ACC well‐being across studies. A scoping review was conducted. Medline, Psycinfo, EMBASE and CINAHL databases (January 1996–August, 2012) were systematically searched for studies investigating ACC well‐being. Inclusion/exclusion criteria were applied, methodological quality was appraised, the data were charted and a narrative synthesis was conducted. Fifty‐five studies met our inclusion criteria. Factors that contribute to ACC well‐being were found to be either: (i) care recipient‐related (e.g. nature of limitations, amount of care required); (ii) caregiver‐related (e.g. psychological dispositions of the ACC); or (iii) socially embedded (e.g. parent–child relationship, multiple role involvement, social support available to the ACC). Socially embedded factors that contribute to ACC well‐being have received the most attention in the literature. Among these factors, ACC well‐being is uniquely impacted by the quality of the parent–child relationship and combination of roles occupied. The majority of studies were cross‐sectional. Future studies should therefore employ a longitudinal design to inform our understanding of the changes that take place in the parent–child relationship and multiple role involvement across the care‐giving trajectory.     

Priorities and challenges for a palliative approach to care for rural indigenous populations: A scoping review

We carried out a scoping review to identify key priorities and challenges relevant to rural Indigenous palliative care stated in existing literature. Our scoping review activities followed Arskey and O'Malley's principles for conducting a scoping review. We included peer‐reviewed literature from MEDLINE, CINAHL and EMBASE that included a discussion of Indigenous populations, palliative care, and rural settings, and did not use date limits. The literature search was conducted in April 2016, and the retrieved literature was screened for relevance and appropriateness April 2016–March of 2017. In addition to the academic literature, a scan of the grey literature was conducted in March 2017. The retrieved grey literature was screened for relevance and reviewed by a team from a provincial health authority serving Indigenous peoples to ensure relevance in a rural BC setting. Once reviewed for relevance and appropriateness, we added four reports to supplement our analysis. Ultimately, 44 peer‐reviewed articles and 4 pieces of grey literature met our inclusion criteria and were included in the review. Our analysis revealed several challenges and priorities relevant to rural Indigenous palliative care. Key challenges included: (i) environmental and contextual issues; (ii) institutional barriers; and (iii) interpersonal dynamics challenging client/clinician interactions. Priorities included: (i) family connections throughout the dying process; (ii) building local capacity for palliative care to provide more relevant and culturally appropriate care; and (iii) flexibility and multi‐sectoral partnerships to address the complexity of day‐to‐day needs for patients/families. These findings point to several areas for change and action that can improve the relevance, access and comprehensiveness of palliative care programming for rural Indigenous communities in Canada and elsewhere. Taking into account of the diversity and unique strengths of each Indigenous community will be vital in developing sustainable and meaningful change.     

Informal caregivers’ views on the division of responsibilities between themselves and professionals: A scoping review

This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaboration between informal caregivers and professionals. Professionals are assumed to adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers’ views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informal caregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.     

Making death ‘good’: instructional tales for dying in newspaper accounts of Jade Goody’s death

Facilitating a ‘good’ death is a central goal for hospices and palliative care organisations. The key features of such a death include an acceptance of death, an open awareness of and communication about death, the settling of practical and interpersonal business, the reduction of suffering and pain, and the enhancement of autonomy, choice and control. Yet deaths are inherently neither good nor bad; they require cultural labour to be ‘made over’ as good. Drawing on media accounts of the controversial death of UK reality television star Jade Goody, and building on existing analyses of her death, we examine how cultural discourses actively work to construct deaths as good or bad and to position the dying and those witnessing their death as morally accountable. By constructing Goody as bravely breaking social taboos by openly acknowledging death, by contextualising her dying as occurring at the end of a life well lived and by emphasising biographical continuity and agency, newspaper accounts serve to position themselves as educative rather than exploitative, and readers as information‐seekers rather than ghoulishly voyeuristic. We argue that popular culture offers moral instruction in dying well which resonates with the messages from palliative care.     

The end of life and the family: hospice patients’ views on dying as relational

The end of life is a highly emotive and critical period in the life course and families often play a central role during this time. Despite significant sociological work on dying as a relational experience, there has been little exploration of the significance of contemporary family structures and relations. In this article, drawing on the accounts of twenty hospice in‐patients, we explore how the end of life (in this case within an in‐patient unit) is mediated by family dynamics and expectations. Participants’ accounts reveal a range of interpersonal experiences, including: pressures and strains on families and patients; differentiation in family responses to and involvement in the dying process; and tensions between individual and family preferences/desires. We argue that family dynamics strongly influence individual experiences near death and that the focus on individual preferences and the management of disease in palliative care contexts must be augmented with sophisticated and nuanced understandings of the family context. We suggest that sociological conceptual explanations of shifts in social and family life, such as individualisation and ontological security, may also help us better understand the ways families approach and respond to the dying process.     

‘But I do believe you've got to accept that that's what life's about’: older adults living in New Zealand talk about their experiences of loss and bereavement support

This paper explores older people's views, experiences and sources of bereavement support following the death of a spouse, family member or other significant individual. Telephone interviews were conducted with 28 bereaved older adults recruited from the Brief Risk Identification Geriatric Health Tool trial participants in three geographically diverse District Health Boards in New Zealand. Analysis adhered to the principles of grounded theory and followed the National Centre for Social Research ‘Framework’ approach. Findings indicate that family and friends play a fundamental role supporting older bereaved adults, both emotionally and practically. Existing community‐based organisations were identified as an important source of support following bereavement. Despite the emotional, financial and practical challenges associated with bereavement, the majority of participants questioned the role of, need for and value of formal bereavement support services. Instead, study participants cited a combination of being older and previous life experiences as factors that had enabled them to cope with these largely ‘expected’ events. Moreover, they demonstrated considerable resilience in managing the emotional and practical changes associated with loss and bereavement. This study poses a challenge to the argument that the growing secularisation of society has led to an increase in the use of professional bereavement services over more ‘traditional’ forms of support, such as family, friends and community and religious organisations. The paper highlights the value of adopting a public health‐based approach as a way of optimising bereavement support via the use of existing community organisations previously known to older people. This is particularly important in those countries where the provision of bereavement support is limited due to resource constraints.     

Constructing denial as a disease object: accounts by medical students meeting dying patients

As part of the general shift in contemporary healthcare from a focus on specific diseases to treating the whole person, doctors are now expected to be reflective and engage empathetically with patients. Yet, the context of end of life potentially confounds this commitment. Here we draw on the written submissions of UK medical students confronting dying patients to offer insight into a range of entangled issues. Although the exercise is designed to highlight the value of listening to patients and to encourage reflective practice, the experience of ultimately not being able to treat or cure frequently challenges the students’ understanding of the central purpose of clinical care and their future role as doctors. Because they invariably draw on the notion of ‘good death’, whenever they have to make sense of patient behaviour deemed as irrational or obstructive the students employ the concept of ‘denial’ as a strategic category. In this context denial is referred to as a disease‐like object that the students feel they can, and should, diagnose and treat. Such conceptual operations consequently illustrate a tension arising from trying to acknowledge the value of a whole‐patient approach while simultaneously reproducing the emphasis placed on identifying those discrete elements that determine legitimate medical intervention.     

A scoping review of opioid misuse in the rural United States

Introduction

This study is a scoping review of the original research literature onthe misuse of opioids in the rural United States (US) and maps theliterature of interest to address the question: What does theoriginal research evidence reveal about the misuse of opioids inrural US communities?

The design of behavioural interventions labelled as patient‐mediated: A scoping review

Objective

Patient‐mediated interventions (PMIs) directed at patients and/or physicians improve patient or provider behaviour and patient outcomes. However, what constitutes a PMI is not clear. This study described interventions explicitly labelled as “patient‐mediated” in primary research.

Methods

MEDLINE, EMBASE, Allied and Complementary Medicine, PsychINFO, HealthSTAR, Social Work Abstracts, CINAHL and Cochrane Library were searched from inception on 1 January 2017 for English language studies that developed or evaluated behavioural interventions referred to as “patient‐mediated” or “patient mediated” in the full text. Screening and data extraction were independently duplicated. Data were extracted and summarized on study and intervention characteristics. Interventions were categorized as 1 of 4 PMI pathways.

Results

Eight studies (4 randomized controlled trials, 1 observational study and 3 qualitative studies) were included. No studies explicitly defined PMI, and few PMIs were described in terms of content and format. Although 3 studies employed physician interventions, only patient interventions were considered PMIs. One study achieved positive improvement in patient behaviour.

Conclusions

Research is needed to generate consensus on the PMI concept, employ theory when designing or evaluating PMIs, establish the effectiveness of different types of PMIs, and understand when and how to employ PMIs alone or combined with other interventions.     

The role of healthcare support workers in providing palliative and end‐of‐life care in the community: a systematic literature review

Despite the widespread use of Health Care Support Workers (HCSWs) in providing palliative and end‐of‐life care, there is little information available about their contributions towards supporting patients who want to be cared for at home or to die at home. Between January and April 2011, a systematic review was conducted to address two questions: (i) What particular tasks/roles do HCSWs perform when caring for people at the end of life and their families to comply with their desire to remain at home?; (ii) What are the challenges and supporting factors that influence HCSWs’ ability to provide palliative and end‐of‐life care in the community? Databases searched for relevant articles published between 1990 until April 2011 included CINAHL, EMBASE, PsychINFO, British Nursing Index, Web of Science, Medline and ASSIA. In total, 1695 papers were identified and their titles and abstracts were read. Ten papers met the eligibility criteria of the study. After the methodological quality of the studies was appraised, nine papers were included in the review. Judgements regarding eligibility and quality were undertaken independently by the authors. The findings indicate that HCSWs invest a great deal of their time on emotional and social support as well as on assisting in the provision of personal care. They are also involved in providing care for the dying, respite care for family members and offer domestic support. Although it is important to acknowledge the many positive aspects that HCSWs provide, the findings suggest three challenges in the HCSWs role: emotional attachment, role ambiguity and inadequate training. Support factors such as informal peer grief‐support groups, sense of cohesiveness among HCSWs and task orientation enabled HCSWs to overcome these challenges. To conclude, induction and training programmes, a defined period of preceptorship, appropriate support, supervision and clearly defined role boundaries may be helpful in reducing the challenges identified in HCSWs’ roles.     

Societal costs of home and hospital end‐of‐life care for palliative care patients in Ontario,Canada

In Canada, health system restructuring has led to a greater focus on home‐based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end‐of‐life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end‐of‐life care associated with two places of death (hospital and home) using a prospective cohort design in a home‐based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out‐of‐pocket, informal care‐giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care‐giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end‐of‐life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end‐of‐life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end‐of‐life care, resulted in changes in the distribution of costs borne by different stakeholders.