Understanding support systems for Parkinson's disease management in community settings: A cross‐national qualitative study

Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long‐term conditions such as Parkinson's disease.

burden for patients and families and are the leading causes of hospital readmissions and a poor quality of life. 7,9,10 Furthermore, the existing National Healthcare Systems' personalized self-care plans and tools fail to capture how people live with and adjust to PD from the PwPD's and the family carers' perspectives. These demands on health and social care systems globally and the limited resources lead to gaps in the care pathways related to manage multimorbidity, disease burden and complex needs and to reach disadvantaged populations, which are understood in this study to be those having immigrant status and/or an ethnic minority background, being older, being socially vulnerable, living with disabilities due to long-term conditions and being a caregiver. 11 Self-management programmes for long-term conditions are evolving and are now increasingly seen as a collective initiative involving personal networks and other community resources, which go beyond those traditionally known as formal services. 12 Consequently, this work builds on new understandings of how stronger collaborations between the levels of care and additional support can enhance existing self-management approaches for PD on a community level 13,14 while also reaching disadvantaged areas through more integrated action plans. 11,12 Previous research has shown that community resources such as voluntary organizations can improve health outcomes through broader forms of support that include the provision of information, physical or social activities, and are better able to reach disadvantaged populations compared with the health and social care services. 15,16 Furthermore, European recommendations 8,17 are taking a strategic leap when it comes to placing patients and their families at the centre of decision-making processes and also regarding the importance of involving various agents in the management of long-term conditions, including PD. Nevertheless, despite these initiatives, the relationships between agencies are still not clearly established or understood. The lack of awareness of what support is available in the community can lead to an overlap in activities, limited use of community resources and action-planning gaps. [18][19][20] Understanding how systems of support for PD management in the community work is essential to enhance the reach of services. Moreover, it is paramount to identify the successful initiatives used by different countries and to learn from established good practices.
In response to the previously mentioned knowledge gaps, the overall aim of this paper is to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of PD in the community, and to identify the existing gaps in the collaboration and the potential benefits for PwPD and their family carers.
In particular, the following research questions will be answered:

| Study design and setting
This article presents the qualitative phase of a sequential mixedmethods study conducted in Denmark, Norway, Spain and the United Kingdom. This study is part of the OPTIM-PARK project, which aims to enhance the process of living with PD by designing multisectoral care pathways to optimize the use of community resources across European countries. In this paper, we report findings from the qualitative phase, which is part of the

| Participants
A purposeful sampling of health and social care professionals and stakeholders was chosen in each participating country. A total of 40 participants were selected to ensure a broad representation of profiles in each group: (1) Health professionals from different disciplines that provide support directly or indirectly to PwPD and family carers. The exclusion criteria were an unwillingness to participate in the project or they were not involved in the direct care or support of PwPD.
(2) Stakeholders from different sectors that directly or indirectly impact in the management of PD and the development of care pathways for PD or other long-term conditions. The exclusion criteria were an unwillingness to participate in the project or a lack of involvement in their role in the strategic planning of community PD care.
Participants were recruited through the strategies shown in Figure 1. Two healthcare professionals and five stakeholders decided not to participate in the interview due to lack of time.

| Data collection
Semistructured individual interviews were conducted between April and October 2020 and supported by an interview guide (Table 1), which was developed by all partners (Table 2) and refined by the PPI groups in Spain and the United Kingdom. Interviews initially took place face to face (n = 16), although due to the Covid-19 pandemic, the majority had to be carried out by telephone (n = 30) and video conference (n = 34). The interviewers (all women) in all countries (Table 2) had extensive experience in conducting in-depth qualitative interviews.
All the participants were also asked to complete a sociodemographic form. The recorded interviews lasted between 32 and 118 min, with an average of 60 min.

| Data analysis
All the interviews were transcribed and analysed following Braun's and Clarke's 22 thematic analysis combining deductive and inductive approaches (see Figure 2). [23][24][25][26] The analysis started with an inductive approach with several readings and the categorization of the full F I G U R E 1 Strategies for recruiting healthcare professionals and stakeholders T A B L E 1 Interview schedule for semistructured interviews with stakeholders and health and social care professionals

Topic fields Questions
Available resources/services/organizations: What community resources are you aware of for people with Parkinson's and family carers?
What systems of support are you aware of for people with Parkinson's and family carers?
What kind/type of support do they provide?
How did you hear about these resources?
How can they contribute to more positive living with Parkinson's?
Collaboration between professionals, organizations and levels of care to improve PD management in the community.
Who is responsible in your organization for liaising with other organizations, professionals, policymakers?
Have you ever, or do you currently, signpost or refer people with Parkinson's or family carers to any of these resources?
Is there an official pathway within your service to signpost or refer? transcripts of the professional interviews from Spain and stakeholders interviews from the United Kingdom to provide a framework of analysis connected to the research questions that the other participating countries could follow. All the countries completed their national analyses following the framework provided using a deductive approach and also created additional codes/themes whenever relevant using an inductive approach. An excel database for each analysed group of participants including codes, themes, quotes and a description of the themes was created and shared among all countries.
All the interviews were analysed in the original language of each country, and country-specific reports were written in English explaining the process followed, and included the findings with quotes for each particular group of participants. A total of 81 themes and 186 subthemes emerged from the analysis across all countries.
Once the country-specific reports and findings were received, a cross-national comparison was initiated, which involved multiple readings and discussions across teams towards an analytic synthesis.
A meta-ethnography approach (lines of argument synthesis) was applied, 27 which helped to interpret and explain the findings across groups and countries, not in an attempt to create generalizations, but to ensure translation from one qualitative case study to another.
Using the lines of argument strategy, 27 the most powerful constructs representing the entire data set from all countries were identified.
This led to an agreed conceptual framework that incorporated a network of interconnected themes that are presented in the results and enhanced understanding of the phenomenon under study. This process led to comparative cross-national synthetic constructs elaborated in the discussion.

| Ethical considerations
Following required ethical approval, the participants received a study invitation and were informed of the plans to maintain the participants' confidentiality and anonymity. They all signed an informed consent form. The participants were then allocated a study number and all the names were removed from the analysis and the written national reports. A total of two themes and five categories emerged from the cross-national analysis and these are presented below (for additional quotes, see Supporting Information: File 2).   He is an active patient, that is, you as a health professional will accompany him, you will help him to cope well with his illness, but the one who has to manage his illness is him. (SP-HCP-001)

| Support to and involvement from carers
Although family carers were generally considered to be a relevant support in managing the complexity of PD, professionals in the United Kingdom and stakeholders in Spain acknowledged that carers were not always involved in designing and implementing care plans with the PwPD, and that carer engagement should start early. All countries acknowledged the need for support to the informal carers, who provide the care and may experience severe stress.
We use the carers; we don't take over the tasks that they have. If carers become exhausted and there is a need for assistance, then that's what we're working towards rather than us starting to relieve carers so that they won't get worn out. (NO-HCP-09) A potential outcome from multiagency partnerships could be proactively offering more support for carers, rather than solely reactively. Carers often lacked the initial knowledge and skills to deal with PD but could be quite resourceful and were proactively seeking help to access information and community/formal resources. To address these gaps, our main findings from health and social care professionals and stakeholders are integrated in Figure 3, which proposes five strategies and four underpinning mechanisms that could make it easier for different organizations to work together to improve PD management in a community setting.
The first strategy is to have the right staff capacity and resources to implement integrated systems of care for PD management. This includes the staff having sufficient training to obtain specialist PD skills, which is the second strategy. To achieve these multiagency The fourth strategy is individualized care along the PD journey that promotes timely, meaningful and wider support. The management of PD through this model is paramount to address care fragmentation, poor interdisciplinary care and promote timely access to services and therapies. 28,38 To promote individualized care throughout the PD journey, it is essential to identify in healthcare a single point of access or a care coordinator, which is an urgent need according to PwPD 28,29 and longterm guidelines. 8 The care coordinator, or single hub, could play a leading role in the assessment process of each person, liaise and work with all health and social care services, the voluntary sector and community organizations and ensure that all referrals to any service or organization start working well for the person. 8,29 The final strategy is to reach to PwPD and their families to ensure meaningful involvement and continuous engagement. We propose, from a micro-level perspective, that PwPD and their families can become valuable partners that can influence these partnerships and advocate personalized support by their continuous engagement, involvement in clinical decision-making and the management of their condition and preferred support.
In addition, it is proposed that the PwPD, and their family carers if appropriate, are involved in their needs assessment, as it has been highlighted in other long-term conditions. 8 We also propose the need to include the family carers in these assessments to identify any caring, physical and mental health needs. 8 Fostering self-management for PwPD is also paramount for a person-centred approach but also requires ensuring educational and support opportunities. 29,39 The adoption of this model may result in positive outcomes that are relevant to services, organizations, healthcare professionals, PwPD and their family carers, as described above and shown in

| Limitations
Although we have found important commonalities across country findings, we also acknowledge the existence of cultural differences and the variety of health and social care systems, as well as the use of both inductive and deductive thematic analyses, which could lead to a loss of national findings. However, the wide experience of researchers who undertook all interviews, the involvement of at least two researchers in each country in all analyses, the application of the meta-ethnography approach (lines of argument synthesis) and the validation from the PPI groups have minimized this.