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. 2022 Dec;20(4):873-891.
doi: 10.1002/msc.1639. Epub 2022 Apr 27.

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

Simone Harmsen  1 , Joyce A Nabuurs  1   2 , Lotte F Lehman de Lehnsfeld  1 , Marjoleine G van der Meij  1 , Jacqueline E W Broerse  1 , Carina A C M Pittens  1
Affiliations

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

Simone Harmsen et al. Musculoskeletal Care. 2022 Dec.

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.

Keywords: caregiving; patient experiences; rheumatology.

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Conflict of interest statement

The authors have no conflict of interest todeclare.

Figures

FIGURE 1
FIGURE 1
Relationships between physical and mental challenges and their effects on the way people function. These challenges lead to challenges in other parts of life, which we clustered into five (interconnected) themes
FIGURE 2
FIGURE 2
Challenges experienced by patients and healthcare professionals regarding self‐management and information, options and collaboration in healthcare
FIGURE 3
FIGURE 3
Prioritisation of themes by various (a) main actor groups and (b) patient groups. The percentage indicates the proportion of points allocated to the theme, relative to the total number of points allocated to all themes
See this image and copyright information in PMC

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