How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study

Abstract

Background Family caregivers are crucial in providing end-of-life care at home. Without their care, it would be difficult for many patients to die at home. In addition to providing care, family caregivers also need support for themselves. Nurses could play an important role in supporting family caregivers, but little is known about if and how they do so. The aim of this study is to explore how nurses currently approach and support family caregivers in end-of-life home care and which factors influence their support of family caregivers. Methods Data were collected using semi-structured interviews with 14 nurses from nine home care organisations in the Netherlands, in 2018. Interviews were audio-taped, transcribed verbatim and analysed using a thematic analysis approach. Results We identified two underlying nursing perspectives on supporting family caregivers: an instrumental perspective (seeing family caregivers mostly as collaborative partners in care) and a relational perspective (seeing family caregivers as both providing and needing support). All the interviewed nurses stated that they pay attention to family caregivers’ needs. The activities mentioned most often were: identification of support needs, practical education, support in decision-making about the patient’s treatment, emotional support, and organising respite care, such as night care, to relieve the family caregiver. The provision of support is usually based on intuition and experience, rather than on a systematic approach. Besides, nurses reported different factors at the individual, organisational and societal levels that influenced their support of family caregivers, such as their knowledge and experience, the way in which care is organised, and laws and regulations. Conclusions Nurses tend to address family caregivers’ needs, but such care was affected by various factors at different levels. There is a risk that nursing support does not meet family caregivers’ needs. A more reflective approach is needed and evidence-based needs assessment tools may help nurses to systematically assess family caregivers’ needs and to provide appropriate support.

Practice of Supporting Family Caregivers of Patients with Life-Threatening Diseases: A Two-phase Study Among Healthcare Professionals

“…These findings are in line with previous literature demonstrating that support for family caregivers is provided ad hoc and depends on circumstances, preferences, and intuition of individual healthcare professionals. [8][9][10][11][12] The identified barriers in this study, such as the experienced discomfort of healthcare professionals when dealing with family caregivers or not feeling responsible for their wellbeing, limited knowledge and conversational skills, and shortage of resources, help to understand why support for family caregivers is not part of routine practices. These results correspond with previous literature in more specific target populations.…”

“…[5][6][7] However, previous research also shows that support for family caregivers is under-resourced in many healthcare settings, and that there is often no system in place to offer support to all family caregivers. [8][9][10][11][12] More detailed information on what support is provided by individual healthcare professionals is needed to understand current practice. An understanding of what hinders and what facilitates supporting family caregivers is needed to improve it.…”

Systematic translation and adaptation of the FOCUS program, a USA-based supportive intervention for persons with cancer and their family caregivers, for use in six European countries

“…Although nurses are increasingly aware of the needs of patients and their relatives, their approach to identifying and discussing those needs is typically unstructured with supportive tools lacking [29,30]. The FOCUS + intervention provides nurses an evidence-based method to give structured support to both patients and caregivers, to help them deal with the illness and its impact on their personal situation.…”

Nurse Practitioners' Self-Efficacy and Behavior in Supporting Self-Management of Patients With a Progressive, Life-Threatening Illness and Their Relatives

“…1 Patient SM is not a solitary activity but is strongly associated with interactions with relatives. 1,3,4 Relatives may support patients in addressing SM tasks and take on additional tasks to assist the patient in his or her SM. Patients with higher levels of relative support report more proactive SM behavior.…”