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Clinical care and management
J19 Assessing Huntington's disease patients' wishes with regard to the nursing home
  1. L van Gelder,
  2. E Hoffmann,
  3. M Bosma,
  4. I Jansen,
  5. E van Zwol
  1. Atlant Zorggroep, locatie Heemhof, Apeldoorn, The Netherlands


Background 31 HD-patients reside in one specialized ward of Atlant Care Group. In 2011 a second ward will be added, providing room for 20–30 additional patients. Atlant Care Group investigated the wishes of HD-patients regarding layout and arrangements of the ward, in order to meet their wishes and needs to a greater extent.

Aims Right now all HD-patients live in the same ward, forming a mixed population. The main research question is whether current and future HD-patients would prefer a differentiated ward. We investigated the wishes for differentiation according to gender, age, smoking and disease stage. We also asked patients about the need for housing different from a nursing home, with less care and more independence.

Method A combination of quantitative and qualitative research was used. 392 questionnaires have been sent to patients residing at home and 20 semi-structured interviews have been conducted among HD-patients who reside in the ward or visit the day care centre. The interviews were held by an independent researcher supported by a speech therapist.

Results Response rate is 25% up till now and all interviews have been conducted. Final results are expected by July 2010. So far, most patients prefer a ward where both men and women and people of different ages live. Preference regarding disease stage is not yet clear.

Conclusion It now seems that most people do not prefer differentiated wards. On the other hand, a semi-independent housing form is quite popular and thus should be a priority for Atlant Care Group when expanding the HD-ward.

  • Differentiation
  • nursing home care
  • qualitative research

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