End-of-life care at home: Dignity of family caregivers.

BACKGROUND: Healthcare services are increasingly being shifted to home settings for patients nearing end-of-life. Consequently, the burden on family caregivers is significant. Their vulnerable situation remains poorly understood and there is little information available regarding their experiences of dignity. AIM: This study seeks to understand the experiences of family caregivers related to dignity and loss of dignity, aiming to provide a deeper insight into their situation when caring for a home-dwelling family member nearing end-of-life. RESEARCH DESIGN AND PARTICIPANTS: This exploratory study consists of a second analysis combining data from two primary studies, including 24 family caregivers of a family member nearing end-of-life, and is founded upon Gadamer's philosophical hermeneutics. ETHICAL CONSIDERATIONS: Approval was obtained from the Norwegian Agency for Shared Services in Education and Research and was based on voluntary participation, informed consent, and confidentiality. RESULTS: The following three main themes were identified: Having a meaningful existence within the living environment, being seen and valued as a family caregiver in relation with others and suffering in a space of loneliness. These contextual, relational, and existential perspectives were found to be closely interrelated. CONCLUSION AND FINAL CONSIDERATIONS: The dignity of family caregivers was closely tied to being seen as unique individuals, not merely caregivers, thereby requiring healthcare professionals (HCPs) to understand their personal needs. This study highlights the emotional distress and loneliness family caregivers feel in their dual role within the healthcare system, thereby calling for HCPs to adopt an attitude of gentleness and recognition to impart dignity-preserving care in homecare practices.

Silent voices: Family caregivers' narratives of involvement in palliative care.

AIM: To explore how family caregivers experience involvement in palliative care. DESIGN: A qualitative design with a narrative approach was used. METHODS: Purposive sampling and narrative interviews were conducted. Eleven bereaved family caregivers for patients with cancer receiving palliative care were interviewed in Mid-Norway between November 2016-May 2017. RESULTS: We identified four themes related to family caregivers' experiences of involvement in the early, middle, terminal and bereavement phases of palliative care: (a) limited involvement in the early phase; (b) emphasis on patient-centred care in the middle phase; (c) lack of preparation for the dying phase; and (d) lack of systematic follow-up after death. Family caregivers experienced low level of involvement throughout the palliative pathway. CONCLUSION: The involvement of family caregivers in palliative care may not be proportional to their responsibilities. The needs of family caregivers should be addressed in nursing education to give nurses competence to support family caregivers in providing home-based care.