Aim To explore experiences and views about care needs and service use by people with late-stage Parkinsonism.
Method Ten participants at Hoehn and Yahr stage 4 or 5 were interviewed using semi-structured open ended questions and qualitative content analysis.
Findings Despite severe disability, participants expressed their desire to maintain normality of activities and interests in their lives. Many perceived that even though health care was provided by professionals they could do nothing more for them. Participants experienced having to ‘fit-in’ to service structures that did not always accommodate their complex needs. The quality of relationships with health care professionals and formal carers shaped perception of service provision and mediated adaptation. Informal support and knowledge on disease management were key factors in their perceived ability to remain in control and to enable normal functioning. There was common reluctance to discuss, and uncertainty about, future plans. For example, moving to a residential nursing home was perceived an undesirable but potentially necessary only option for future care.
Conclusion Addressing these findings including greater flexibility of healthcare structures and better future planning could increase ability of patients with late-stage parkinsonism to remain at home and improve quality of life of patients in this late disease stage.
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