Understanding family caregivers’ needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal

Abstract

Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers' experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data. Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers' physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.

Exploring the Support and Involvement of Family Caregivers for Reablement Programs: A Qualitative Study

“…Moreover, previous research states that family caregivers are reluctant to seek external support because they do not want to disclose family-related problems due to a sense of pride, 47 , 48 but are also reluctant to accept help from other family members. 49 Additionally, Willemse et al 46 found that information on the possibilities was often lacking, and they stressed the necessity of proactively informing caregivers. 46 Over the past years, multiple interventions have been described to support family caregivers in their role as a caregiver and to eventually reduce their perceived burden.…”

“…Therefore, it is important to, as a care professional, proactively inform the informal caregiver about their options for support and offer a tailor-made, personal approach with enough room to participate in the care process when this is preferred by the informal caregiver. 49 …”

“…Therefore, it is important to, as a care professional, proactively inform the informal caregiver about their options for support and offer a tailor-made, personal approach with enough room to participate in the care process when this is preferred by the informal caregiver. 49 The aim of this research was also to inform reablement programs on how to integrate adequate support for family caregivers and how to involve them in reablement services. The previous section has already provided some implications for future practice.…”

Advance care planning with older Norwegian adults in their homes: a narrative ethnographic study

“…The older person’s relatives contribute significantly to the quality of home-based palliative care [ 14 ]. However, they reportedly often feel unprepared to perform caregiving tasks, experiencing a heavy burden that impacts both their emotional and physical health [ 15 – 17 ]. Including relatives when developing and revising care plans might therefore increase their satisfaction with the care delivered to patients and better prepare them for the terminal phase [ 14 , 18 ].…”

Validating interRAI Chinese self-reported carer needs (SCaN) assessment and predicting caregiving distress among informal Chinese caregivers of older adults

“…Therefore, introducing a standardized, self-reported caregiver supplement to the current interRAI suite would help understand their source of distress, needs and challenges, and navigate support services [ 26 ]. Routine screening and assessment of psychological and physical health needs, as well as preventive measures oriented towards informal caregivers across their caregiving journey, should be core elements of optimal family-centered and community-based care [ 2 , 3 , 6 , 10 , 17 , 27 – 29 ].…”