Quality of Life for Huntington's Disease patients in a nursing home
What is it about?
Huntington's Disease is a complex and progressive disease with severe impact on the patients themselves, and everyone involved. This study focused on Quality of Life in the advanced stage of the disease, from three perspectives, and what is done in daily care in a nursing home to optimise and maintain this.
Why is it important?
This study shows, from the perspectives of patient, family members, and nursing staff, that caring for HD patients requires specific and distinctive knowledge and skills with particular characteristics of nursing approaches to improve the patients' quality of life. The patients' perception of wellbeing depends strongly on the nursing staff attitude, especially in relation to behavior that patients are unable to control. Patients need the nurses’ support to manage their behavior, e.g., by offering alternative coping mechanisms, and providing structure and clarity, which enhances patients’ feeling of wellbeing. Patients indicated the importance of an unconditional and consistent attitude on the part of the nurses based on a relationship of trust, even when this is difficult, which makes them “feel human again”. The strength of this study and contribution to already existing knowledge: The use of several methods in this qualitative study uncovered in-depth perspectives of the patients themselves, family members, and nursing staff, and helped to explore and describe behaviour, interaction and routines of which the participants themselves were unaware or unable to give words to.