Abstract
BackgroundFamily 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.MethodsAn 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.ResultsFive 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.ConclusionsThese 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.
Highlights
Caregivers play an important role supporting their relatives with advanced progressive disease to live at home
This paper reports on the first phase of a study entitled “Family Caregivers of People with Advance and Progressive Disease at Home: Contributions to a Model of Supervision”, developed to support community nurse in decision-making [19]
Aim To explore family caregivers’ experiences when caring for a relative with advanced progressive disease at home, and to identify their perceived met and unmet needs, and understand care provided over time
Summary
Caregivers play an important role supporting their relatives with advanced progressive disease to live at home. 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. It is important to understand family caregivers’ roles when they act within the home environment [6]. At the same time the ageing population means family caregivers will themselves increasingly become recipients of care [8]. Healthcare professionals face the challenge of supporting and improving families’ ability to care for people with chronic advanced disease [9]. Professionals should help family caregivers to understand and assess their own needs as an important element of this process [10, 11]. Family caregivers should be empowered to help reduce the risk of burnout [12]
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