Aim

To 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.

Design

A qualitative descriptive focus group study.

Methods

Formal 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.

Results

From 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.

Conclusion

Maintaining 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.

Plain language summary What was the aim of this study?

This study explored how to provide good care for people with Huntington's disease living in specialized nursing homes. We wanted to understand what both professional caregivers (such as nurses and care staff) and family members consider important for high-quality care.

How was the study done?

We held group discussions with professional caregivers and family members from three Dutch nursing homes that specialize in Huntington's disease. We analyzed what they shared about their experiences and views.

What did we find?

Professional caregivers mentioned the importance of putting the resident at the center of care and working in a systematic way. They also spoke about the need for supporting autonomy while taking into account necessary restrictions. In addition, caregivers highlighted the need for emotional support, and attention to specific areas such as palliative care and nutrition. Family members emphasized the need for daily structure, supportive conversations, and a pleasant nursing home environment. They also said that support is needed right after a resident moves in, and that guidance and planning for the future are crucial. Both groups emphasized the importance of a skilled and familiar care team with sufficient knowledge of the disease.

What does this mean?

Providing good care for people with Huntington's disease requires a combination of supporting independence, offering structure, providing emotional and palliative care, and working as a consistent and knowledgeable team. While professionals and family members bring different perspectives, they largely agreed on what matters most in Huntington's disease care.