Quality of care through the eyes of residents with Huntington's disease living in a nursing home: A qualitative explorative study

Background: Moving to a nursing home is often unavoidable for late-stage patients with Huntington's disease (HD). Specialized care is needed, adjusted to the specific needs and characteristics of this usually young group within the nursing home. Despite this, there are no specific, validated methods for assessing the experienced quality of care (QoC) by HD nursing home residents. Objective: We used a qualitative, phenomenological approach to gain insight into the perspectives of HD residents and identify elements for assessing QoC in HD specialized nursing homes. Methods: Fifteen advanced-stage HD residents (Total Functional Capacity Scale 3-5), from three specialized HD nursing homes in the Netherlands, participated in semi-structured interviews from November 2022 to February 2023. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis. Results: Residents emphasize the significance of care and daily living experiences, including meal satisfaction, support in daily activities, and a structured routine. Autonomy, well-being, and a positive living environment contribute to a sense of home. QoC is influenced by residents' ability to express preferences, choose consciously for a specialized nursing home, and caregivers' HD knowledge and competences. Positive QoC involves open, respectful conversations, family contact, and addressing topics like advance care planning. Interactions with fellow residents, including behavioural and communication challenges, also affect QoC. Conclusions: The experiences of nursing home residents with HD related to the QoC they receive are shaped by satisfaction with daily activities, autonomy, caregiver expertise, and fellow resident interaction. These factors are crucial for assessing QoC from the residents' perspective.