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Sage Publications

Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice

Background: Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care. Aim: This review aimed to identify what is currently known about carers’ experiences of providing end-of-life care to a family member or friend with dementia and draw implications for palliative care policy and service provision.

Sun, 03/31/2019 - 17:09

Resilience for family carers of advanced cancer patients—how can health care providers contribute? A qualitative interview study with carers

Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support.

Fri, 03/29/2019 - 11:12

Admiral Nurses delivering workplace clinics for family carers: Innovative practice

Dementia UK and The Charity for Civil Servants teamed up to test the acceptability and feasibility of delivering a work-based Admiral Nurse clinic to support family carers during their employed working hours. This paper presents some of the learning from this innovative approach.

Fri, 03/29/2019 - 10:08

In sickness and in health: The strains and gains of caring for a chronically ill or disabled spouse

Objectives To examine the subjective experiences of spousal carers, focusing on positive, negative, and relational aspects of this role. Methods Mixed-methods exploratory study involving questionnaires (N equals 40) and in-depth interviews (N equals 8) with spousal carers in the southwest of England.

Thu, 03/28/2019 - 15:02

The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life

Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled "The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life" was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process.

Thu, 03/28/2019 - 12:22

Family Caregiving in Critical Illness: Research Opportunities and Considerations

Family caregivers provide essential support, information, and surrogate decision making for critically ill patients and are recognized as important care partners with the clinical team in the intensive care unit (ICU). Unfortunately, many family members who assume a caregiving role during critical illness also experience the detrimental effects of this stressful life event. 

Mon, 03/25/2019 - 13:34

Achieving positive outcomes in complex cases: The Admiral Nurse Dementia Helpline (Innovative Practice)

Carer distress is an all too common factor in caring for someone with dementia, whether living with the person with dementia, or trying to maintain their independence when they are living alone. Providing support for families on many day-to-day issues with immediacy as and when they arise can be very difficult to achieve for services on the ground as carer need can be difficult to anticipate as well as the changing status of the person with dementia.

Mon, 03/25/2019 - 11:31

Young peoples' reflections on what teachers think about family obligations that conflict with school: A focus on the non-normative roles of young caring and language brokering

In ‘Western’ contexts, school attendance is considered central for an ‘ideal’ childhood. However, many young people engage with home roles that conflict with school expectations. This article explores perceptions of that process in relation to two home activities – language brokering and young caring. We interviewed 46 young people and asked them to reflect on what the teacher would think when a child had to miss school to help a family member. This article discusses the young people’s overall need to keep their out-of-school lives private from their teachers.

Mon, 03/25/2019 - 10:49

Family Caregivers' Pain Management in End-of-Life Care: A Systematic Review

Context: Pain management was the most identified burden faced by family caregivers in end-of-life caregiving. Objectives: To synthesize current scientific evidence on family caregivers' experience of pain management in end-of-life care. Methods: A systematic review was conducted using CINAHL, Embase, PubMed, and Cochrane Library electronic databases. Data were extracted from each included paper and organized into tables to synthesize the findings.

Mon, 03/25/2019 - 10:40

‘Because it’s the wife who has to look after the man’: A descriptive qualitative study of older women and the intersection of gender and the provision of family caregiving at the end of life

Background: Research indicates that women are the primary family caregivers for others at life’s end and, because of ageing populations, will keep fulfilling this role as they age. Yet, little is known about how the gendered nature of caregiving contributes to older women’s understandings of providing care. Aim: To explore how gender norms constructed older women’s views about the appropriate roles of women and men in providing palliative and end-of-life care for family members.

Fri, 03/22/2019 - 15:25