Primary health care professionals' experiences with caring for patients with advanced Huntington's disease: a qualitative study

Marleen R van Walsem; Emilie I Howe; Nada Andelic; Jan C Frich

doi:10.1186/s12875-024-02408-2

Primary health care professionals' experiences with caring for patients with advanced Huntington's disease: a qualitative study

BMC Prim Care. 2024 May 7;25(1):155. doi: 10.1186/s12875-024-02408-2.

Authors

Marleen R van Walsem^{1

2

3}, Emilie I Howe^{3

4}, Nada Andelic^{3

4}, Jan C Frich^{5

6}

Affiliations

¹ Department of Neurohabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway.
² Department of Neurology, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway.
³ Institute of Health and Society, CHARM - Research Centre of Habilitation and Rehabilitation Models and Services, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway.
⁴ Department of Physical Medicine and Rehabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway.
⁵ Institute of Health and Society, University of Oslo, Box 1130, Blindern, 0318, Oslo, Norway. jan.frich@medisin.uio.no.
⁶ Diakonhjemmet Hospital, Box 23, Vindern, 0319, Oslo, Norway. jan.frich@medisin.uio.no.

Abstract

Background: Huntington's disease (HD) has substantial impact on patients and carers' lives. Managing patients in the advanced phase of HD may be challenging to primary health care professionals. The aim of this study is to elicit health care professionals' experiences of managing the challenges with patients with advanced HD in primary health care.

Methods: We did a qualitative study, collecting data from four focus group interviews with 22 primary health care professionals who had experience with caring for patients with HD in Norway. The data were analysed using a qualitative content analysis method, systematic text condensation.

Results: We found that health care professionals who care for patients with HD in primary health care experience challenges related to patients' behaviour, family members and caregivers, professionals' individual competency, and the organizational context. They conveyed that successful care and management of patients with advanced HD was dependent on individuals' competency and "everyday tactics", well-functioning teams, and leadership and organizational support.

Conclusion: In addition to individual competencies, including being personally suitable for the job, well-functioning primary care teams, and organization support and training is important for health care professionals' ability to manage patients with advanced HD in primary health care.

Keywords: Advanced huntington’s disease; Care; Health care professionals; Qualitative research.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Attitude of Health Personnel
Caregivers / psychology
Clinical Competence
Female
Focus Groups*
Health Personnel* / psychology
Humans
Huntington Disease* / psychology
Huntington Disease* / therapy
Male
Middle Aged
Norway
Primary Health Care*
Qualitative Research*