Nurses' challenges when supporting the family of patients with ALS in specialized palliative home care: A qualitative study

Purpose Being a family member to someone who has amyotrophic lateral sclerosis (ALS) is demanding and often requires sacrificing a lot. Family members can experience fatigue, anxiety, guilt and need support. The aim was to explore registered nurses' (RNs') experiences of providing support to the families of patients with ALS within specialized palliative home care (SPHC). Methods A qualitative explorative design. Interviews were conducted with RNs (n = 11) from five SPHCs in Sweden and analysed using qualitative content analysis. Results The results emerged in the following categories:To support in an increasingly difficult everyday life, based on the sub-categories: Creating a trusting relationship, Balancing between the needs of patients and their families, and Sharing knowledge about dying to the families;To support in emotionally challenging situations, based on the sub-categories: Harbouring family members' difficult feelings, Providing support even though the situation is unpleasant and Being able to give support by receiving confirmation and support from others. Conclusions RNs working in SPHC have an important role in providing support in several ways to the families of patients with ALS, through facilitating their everyday life and giving emotional support when needed, based on the needs of both patients and the families.

Automated summary

This study aimed to explore registered nurses’ experiences of providing support to the families of patients with ALS within specialized palliative home care (SPHC). The results showed that RNs played an important role in facilitating the everyday life of ALS patients' families and offering emotional support when needed, based on the needs of both patients and their families. This was achieved through establishing a trusting relationship, balancing between the needs of patients and their families, and sharing knowledge about dying with the families.