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Family caregiving

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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