Mapping the complex everyday challenges and needs of people with rheumatic disease and their surroundings using a multi-actor approach

Simone Harmsen*, Joyce A. Nabuurs, Lotte F. Lehman de Lehnsfeld, Marjoleine G. van der Meij, Jacqueline E.W. Broerse, Carina A.C.M. Pittens

*Corresponding author for this work

Research output: Contribution to JournalArticleAcademicpeer-review

Abstract

Introduction: This study aimed to gain insight into the real-world complexity of the challenges experienced by patients, their significant others, care professionals and the work and education environment concerning rheumatic diseases as well as the interrelation between these challenges; it also aimed to prioritise the identified challenges. Method: Using the Dialog Model, 21 people with various rheumatic diseases, 24 care professionals, 9 significant others, and 3 education and work representatives were asked about rheumatic disease-related challenges and needs in a series of focus groups and interviews. Data were inductively coded and analysed, resulting in a mind map thematically displaying the challenges. The mind map was translated into a survey, and respondents (N = 1802) prioritised themes and challenges. Results: Of the six identified themes, ‘physical complaints’ was prioritised the most, followed by ‘collaboration in healthcare’, ‘social and mental wellbeing’, ‘self-management’, ‘information and options in healthcare’ and ‘work and education’. Challenges of people with rheumatic diseases appeared to be complexly interrelated. For instance, fatigue and pain affect everyday functioning, but can also heavily impact social and mental wellbeing. To facilitate support for these challenges, which many patients desire, patients and care professionals said that better collaboration between primary and secondary care professionals is needed. Additionally, patients felt that their experiential expertise deserves more acknowledgement from care professionals. Results were similar across different rheumatic diseases. Conclusion: Many patients desire more support to manage life with their disease. To facilitate this, collaboration and communication between healthcare professionals, and between healthcare professionals and individual patients, should be improved.

Original languageEnglish
Pages (from-to)873-891
Number of pages19
JournalMusculoskeletal Care
Volume20
Issue number4
Early online date27 Apr 2022
DOIs
Publication statusPublished - Dec 2022

Bibliographical note

Publisher Copyright:
© 2022 The Authors. Musculoskeletal Care published by John Wiley & Sons Ltd.

Funding

We are grateful to the people who participated in our research who are living with arheumatic disease and to their relatives for their openness and trust and for helping us to better understand the impacts of a rheumatic disease on daily life. We also want to thank the various care professionals who have shared their experiences with us. We thank the Dutch Arthritis Society for their support. The data collection of this research was commissioned by the Dutch Arthritis Society (and part of a larger research/strategy development trajectory). However, the full data analysis and writing of this paper took place after the commissioned project had ended. As such, the Dutch Arthritis Society had no influence nor participation in the analysis of the data or writing of this paper.

FundersFunder number
Dutch Arthritis Society

    Keywords

    • caregiving
    • patient experiences
    • rheumatology

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