Exploring quality of care through the eyes of formal and informal caregivers for residents with Huntington's disease: A qualitative descriptive study

AimTo gain insight into factors contributing to the quality of care in nursing homes specialized in Huntington's disease from the perspectives of formal and informal caregivers.DesignA qualitative descriptive focus group study.MethodsFormal and informal caregivers from three specialized nursing homes in the Netherlands were separated into six focus groups. All data was analyzed using reflexive thematic analysis.ResultsFrom both groups, three main themes were explored: (1) care approaches and principles, (2) attention to specific care domains, and (3) preconditions for delivering care. Formal caregivers highlighted the importance of balancing residents' autonomy and restrictions, the need to work systematically, and adopting a resident-centered approach. Furthermore, attention to palliative care, nutritional care, and emotional support are needed. Informal caregivers emphasized the need for providing structure, supportive conversations, and the importance of the nursing home environment itself. Attention to the transition phase immediately after admission to the nursing home, as well as guidance on future care planning, is important. There is a need for care teams that consist of knowledgeable, familiar caregivers within a care organization that (im)materially supports its staff.ConclusionMaintaining autonomy despite disease-related restrictions, providing structure, applying palliative care principles, and offering emotional support are essential components of quality of care, as emphasized by both formal and informal caregivers. Achieving this requires systematic nursing practices performed by a team of knowledgeable caregivers. Although informal caregivers' descriptions are more superficial, key elements in them are similar to those of formal caregivers.