Study design
This study is a qualitative study exploring the subjective experiences and perspectives of PwP in relation to empowerment and management of disease-related symptoms combined with insights and perspectives from stakeholders within the PD community.
A co-creation process, involving a workshop with stakeholders within the PD community is a collaborative, qualitative and participatory method aimed at generating innovative solutions and ideas to address the challenges faced by PwP [19]. The co-creation of the intervention during the workshop followed the framework by Leask et al. [20]. Five principles from this framework: 1) Framing the aim of the study; 2) Sampling; 3) Manifesting ownership; 4) Defining the procedure; 5a) Evaluating (the co-creation process) [20] were utilised for this explorative qualitative study combining a workshop and two focus group interviews. The mix of a workshop and focus group interviews contributes to a diverse and subtle understanding as these allow participants to discuss and reflect on each other's experiences stimulating group interactions and dynamics [19,20].
Prior to the study, a pilot testing of a "patient school" was conducted at the Movement disorder Clinic (MDC), Rigshospitalet, Denmark, involving 18 PwP and their caregivers. The insights and findings from this pilot test were subsequently incorporated as focal points in both the workshop and focus group interviews.
Recruitment and participants
All participants were recruited from May to August 2022.
Eligible participants (PwP and caregivers) were recruited consecutively face to face from the MDC at Rigshospitalet, Denmark. The inclusion criteria for eligible participants with PD were: PD diagnosis, score on Hoehn&Yahr scale 1-3 [21], speak and understand Danish, and motivated to engage in discussion and share perspectives in a workshop and subsequently focus group interviews. Exclusion criteria were: cognitive impairments severe enough to preclude informed consent, medical instability, or being deemed too physically impaired by the PD-team to participate.
Caregivers were recruited from the Danish Parkinson Association and by face-to-face invitations when visiting the MDC with their relatives and were included if related to a person with the above-mentioned criteria and were able to speak and understand Danish. It was aimed that included relatives and patients were not related.
Primary author (THT) collaborated with municipal rehabilitation centers, securing permission to approach HCPs for potential participation in the workshop. Specifically, nurses, neurologists, and therapists from clinics in two distinct regions, along with stakeholders from the Danish Parkinson Association and the Knowledge – and Competence Centre within PD Rehabilitation, were personally invited and deliberately selected. Inclusion criteria for HCPs encompassed those with more than three years of experience in PD rehabilitation, working either in a hospital or a municipal rehabilitation center.
Data Collection
The data collection was conducted from September to December 2022.
The workshop lasted three hours and each of the two focus group interviews lasted approximately one hour. A semi-structured interview guide was used in all interviews (Table S1).
Workshop
The co-creation process began with a comprehensive workshop involving a diverse group of stakeholders. The goal was to collaboratively design and develop a self-management program tailored PwP. The role of the researchers and confidentiality within the group were clarified before beginning the workshop and focus group interviews.
The workshop was designed to foster open communication, creative thinking, and knowledge exchange among the participants, which included PwP, caregivers, HCPs across sectors, researchers, and representatives from support, patient, and rehabilitation organizations.
Following the framework [20] the workshop started with describing the purpose, framing the session and ensuring ownership of the co-creation process underlining equal participation. Subsequently, prepared in a written script the workshop consisted of open questions and exercises to explore the knowledge and perspectives on PD and specific needs within self-care and management of symptoms. Lastly, the generalization of results, user-friendliness and feasibility of the future self-management program were discussed and optimized from the participants` perspectives. The workshop took place in a large meeting room with participants seated facing a presentation screen. THT functioned as interviewer and facilitator, while a research assistant took field notes on general observations, content and elements for further elaboration in the focus group interviews. The workshop was not recorded. Table 1 provides an overview of the workshop process.
Table 1: Overview of the step-by-step process in the workshop and identified key terms
Lastly, the facilitator emphasized the importance of ongoing collaboration and provided information on how the participants could stay involved in further efforts to implement the co-created solution.
Focus groups interviews
Following the workshop, two focus group interviews were conducted with a subset of PwP and caregivers.
Participants
were separated into two groups. The focus group interviews were semi-structured, using the traditional funnel model [22] and focused on getting the participants to share and discuss opposite opinions and perspectives. Social dynamics and interactions between the participants were encouraged This was done to create an informal atmosphere and get the participants to contribute actively and express as many different opinions and perspectives as possible [23]. A conference room was used with participants seated at a large square table. All focus group interviews followed the interview guide (Table S1) based on content and field notes from the workshop with THT as interviewer. The guide provided the main structure, however, if relevant topics arose, the participants were encouraged to discuss and elaborate these with each other. The interviews were audio-recorded.
Data analysis
To capture and interpret the nuances of empowerment and experiences in PD, the focus group interviews were transcribed verbatim and anonymized. Transcripts were analyzed using the content analysis method inspired by Graneheim&Lundmann [24] alongside field notes from the workshop. Data were inductively analyzed parallel by THT and a co-researcher from another research unit in a triangulation process. Firstly, by familiarizing themselves with the data from the focus group interviews as a whole, then focusing on manifested content using the complete focus group interview as a unit of analysis and further abstracting meaning units into codes, sub-categories, categories, main categories and lastly key themes [24]. Subsequently, consistency of abstraction levels, and condensation of main themes for all focus group interviews, were reviewed. The research team translated the key themes from Danish into English for transparency.