Authors: Els M.L. Verschuur, Wytske W. Geense, Marian J. M. Adriaansen.
The course of Huntington’s disease (HD) is progressive and relentless, but symptoms vary greatly, turning HD patients into a heterogeneous group of patients. Little is known about the support need of HD patients seen from their point of view and whether these needs are met. The aim was to describe the support needs of patients with Huntington’s disease and the problems they experienced in order to better contribute to patient-centered care for these patients.
This was a qualitative study in which nine patients in Huntington’s disease stages III-V participated in three focus group interviews. The interviews were video recorded and thematically analyzed. Four men and five women participated; ages ranged from 43 to 67 years. Six patients were living at home, four of whom visited a day care facility, and three patients were living in a nursing home.
The discussion in the focus groups centered on three types of support needs: healthcare related support need, practical support need and social support need. The underlying problems were uncontrolled movements, instability, lack of energy, sleep disturbance, memory loss, lack of concentration, angry outbursts, inability to control impulses and impending isolation, family issues, loss of friends and loss of employment.
Learning about the patients’ perceptions of problems and their needs for care and support may help healthcare professionals better understand the complexity of Huntington’s disease and find adequate client-centered care and interventions.
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