H035 Quality of care through the eyes of residents with Huntington’s disease living in a nursing home
Year: 2024
Type: conference-abstract
Abstract: Background Moving to a nursing home is often unavoidable for late-stage patients with Huntington’s disease (HD). This usually young group requires specialized and highly qualified care tailored to their individual specific needs. However, no specific validated method exists for assessing the experienced quality of care (QoC) by HD nursing home residents. Aims We aim to gain insight into the perspectives of residents with HD and identify elements for assessing QoC in HD-specialized nursing homes. Methods From November 2022 to February 2023, 15 semi-structured interviews were conducted with residents (Total Functional Capacity Scale stage 3-5) from three specialized HD nursing homes in the Netherlands. Data was transcribed verbatim and analyzed using elements of reflexive thematic analysis. Results Residents emphasize the significance of care experiences 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 being at home. QoC is influenced by residents’ ability to express preferences, consciously choose a specialized nursing home, and by 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 behavioral and communication challenges, also impact residents’ experienced QoC. Conclusions The domains identified in this study are crucial to consider when measuring the experienced QoC of nursing home residents with HD.
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
OpenAlex ID: W4402374631