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Family caregiving

"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support.

Fri, 03/29/2019 - 11:49

Family caregiving of individuals with traumatic brain injury in Botswana

Background The impairments that affect survivors of TBI impact the person’s independence, and family members frequently have to take on a caregiver role.

Thu, 03/28/2019 - 12:29

‘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

Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability

Objectives: To estimate the number of caregivers providing assistance to community‐dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health‐related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. Design: Nationally representative surveys of caregivers and older adults in the United States.

Fri, 03/22/2019 - 09:55

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed.

Thu, 03/07/2019 - 15:19

Patient perspectives on navigating the field of traumatic brain injury rehabilitation: a qualitative thematic analysis

Purpose: This study aimed to provide an understanding of the lived experience of rehabilitation in adults with traumatic brain injury (TBI) from hospital discharge up to four years post-injury. Materials and methods: We used a qualitative explorative design with semi-structured in-depth interviews. Twenty participants with TBI were included from a level I Trauma Center in Denmark at 1-4 years post-injury. Qualitative thematic analysis was applied for data analysis.

Tue, 10/16/2018 - 15:59

How family caregivers help older relatives navigate statutory services at the end of life: A descriptive qualitative study

Background: A key challenge in meeting the palliative care needs of people in advanced age is the multiple healthcare and social service agencies typically involved in their care. The 'patient navigator' model, originally developed in cancer care, is the professional solution most often recommended to address this challenge. However, little attention has been paid, or is known, about the role that family carers play in enabling their dying relatives to negotiate service gaps.

Thu, 07/05/2018 - 12:51

Family carers' experiences of coping with the deaths of adults in home settings: A narrative analysis of carers' relevant background worries

Background: Internationally, evidence on the support needs of family carers who look after a terminally ill adult in home settings is incomplete. Aim: To illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult. Design: A qualitative cross-sectional observational study was conducted in England, United Kingdom, in 2011-2013 on the experiences of adult family carers (n = 59) of older dying adults (aged 50+ years) with malignant and/or non-malignant conditions.

Thu, 07/05/2018 - 12:30

Children and Adolescents Providing Care to a Parent with Huntington's Disease: Disease Symptoms, Caregiving Tasks and Young Carer Well-Being

Background: Over 30,000 people in the U.S. have Huntington’s disease (HD), a disorder with numerous complicated, long-lasting and stigmatizing symptoms. Caregiving typically falls to the family, yet little is known about the caregiving experience of children and adolescents in the home.

Thu, 07/20/2017 - 15:20

The conversational and discursive construction of community psychiatric nursing for chronically confused people and their families

The paper examines the conversational and discursive processes that occur within domiciliary visits between community psychiatric nurses (CPNs) and relatives of chronically confused people. Three conversation formats are identified, through which talk between CPNs and carers is organised. In addition, various discursive practices are also identified within domiciliary meetings. The contribution of these conversational and discursive features to the work of CPNs is fully discussed in relation to what they accomplish within the visit. The data comprised 48 paired tape recordings.

Thu, 07/20/2017 - 15:11

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