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BMC Primary Care

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Open Access 01-12-2024 | Huntington's Disease | Research

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

Authors: Marleen R. van Walsem, Emilie I. Howe, Nada Andelic, Jan C. Frich

Published in: BMC Primary Care | Issue 1/2024

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.

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Title: Primary health care professionals’ experiences with caring for patients with advanced Huntington’s disease: a qualitative study
Authors: Marleen R. van Walsem
Emilie I. Howe
Nada Andelic
Jan C. Frich
Publication date: 01-12-2024
Publisher: BioMed Central
Keyword: Huntington's Disease
Published in: BMC Primary Care / Issue 1/2024
Electronic ISSN: 2731-4553
DOI: https://doi.org/10.1186/s12875-024-02408-2

Keynote webinar | Spotlight on medication adherence

Springer Medicine

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

Abstract

Background

Methods

Results

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusion

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