Exploring nurses' perceptions on caring for a patient with Huntington's disease within a geriatric setting

Abstract

Huntington's disease (HD) is known to be a chronic debilitating disease with a history of being misinterpreted and stereotyped which in turn influences perceptions. This research study attempted to explore nurses' perception on the care needs of patients with HD, cared for within a geriatric facility. Additionally this study investigated the factors influencing the quality of care received by HD patients in aged-care nursing wards and nurses' perceptions on alternative long-term care facilities for these individuals. A questionnaire, which generated mostly quantitative data, was given to a random sample of fifty nursing professionals working within a local state-owned nursing facility for the elderly. The study had a response rate of 64% (n=32). The main findings of this study indicated that nurses do not believe that HD patients are effectively and holistically cared for in geriatric settings. Nurses assigned a higher level of importance to the physical and nutritional care needs of HD, and noted the lack of time and education related to HD as factors influencing negatively the care of HD residents in these settings. On the aspect of alternative long-term care of individuals with HD, nurses disapprove of psychiatric and care residences, however endorse HD specialised units if such an option was available locally. A HD nurse specialist received complete support by the nurses and might be an alternative to HD units by offering support in facilities. This study addresses a dearth in literature and research available both locally and abroad. To the knowledge of the researcher only a handful of studies assessing the care needs and investigating care strategies for patients with HD residing in long-term care facilities such as aged-care units or geriatric facilities have been done. The main recommendation derived from this study were a for increased education and training of nurses caring for HD patients, the possible introduction of a HD specialist nurse and further research in the care needs of HD patients.