OPTIM-PARK - Care pathway for people living with Parkinson's Disease (completed)

• Hjelle, Ellen Gabrielsen; Nielsen, Tove Lise; Bragstad, Line Kildal; Kruse, Naja Benigna; Vester, Louise Buus & Haavaag, Silje Bjørnsen [Show all 16 contributors for this article] (2026). Feasibility and acceptability of the cross-national multisectoral OPTIM-PARK intervention for people affected with Parkinson’s disease and their family carers. BMC Health Services Research. doi: 10.1186/s12913-026-14912-5. Full text in Research Archive Show summary

  Abstract Background Parkinson’s disease (PD) is a common neurological disease worldwide. Management of PD is complex, requiring person-centred care to address the physical, emotional, social, and economic impacts of the disease. The OPTIM-PARK intervention was developed to enhance the process of living with PD for people affected and their family carers (FCs) by designing inter- and multisectoral collaboration and incorporating a coordinator role in four European countries: Denmark, Norway, Spain, and the United Kingdom. The aim of this cross-national study was to evaluate the feasibility and acceptability of the OPTIM-PARK intervention in community settings. Methods A mixed-methods convergent design was applied, including quantitative analysis of registrations, outcome measures and an Acceptability scale, as well as qualitative analysis of Logs and Mapping of Resources, and semistructured interviews. The focus of the three months intervention was a PD coordinator who undertook a personalized needs assessment and provided information and support, strengthened multi- and intersectoral collaboration, and optimized access to and use of community resources and other third sector support systems. Results A total of 130 participants were included in the intervention, 72 people with PD and 58 of their FCs. The intervention was typically provided in three consultations. The PD coordinator focus was on individualized support through active listening in the delivery of healthcare interventions. Inclusion of FCs were highly valued. Completion of the outcome measures was feasible, 105 (81%) participants were able to complete outcomes at both time points with <5% missing data. Most participants (92%) found it easy to answer the questionnaires, the use of digital tools for data collection was found beneficial if the participant were comfortable with the digital format. Conclusions To the best of our knowledge this is the first cross-national European study exploring the feasibility of a PD coordinator focussed support to enhance the process of living with PD. The findings suggest that the OPTIM-PARK intervention was feasible and well-received in a community setting across different countries, suggesting potential for wider application and further evaluation in a larger-scale trial.

• Hjelle, Ellen Gabrielsen; Smidt, Helle Rønn; Haahr, Anita; Haavaag, Silje Bjørnsen; Sørensen, Dorthe & Navarta-Sánchez, Maria Victoria [Show all 8 contributors for this article] (2023). Filling the gap in service provision. Partners as family carers to people with Parkinson's disease: A Scandinavian perspective. Chronic Illness. ISSN 1742-3953. doi: 10.1177/17423953231174470. Full text in Research Archive Show summary

  Objectives: The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway. Methods: A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark (n=9) and Norway (n=5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed ver- batim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches. Results: The main themes were ‘negotiating systems of support’ and ‘balancing being both a part- ner and a family carer’. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role. Discussion: A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the col- laboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family.

• Navarta-Sánchez, Maria Victoria; Palmar-Santos, Ana; Pedraz-Marcos, Azucena; Reidy, Claire; Soilemezi, Dia & Haahr, Anita [Show all 12 contributors for this article] (2023). Perspectives of people with Parkinson's disease and family carers about disease management in community settings: A cross-country qualitative study. Journal of Clinical Nursing (JCN). ISSN 0962-1067. 32(15-16), p. 5201–5218. doi: 10.1111/jocn.16636. Full text in Research Archive Show summary

  Aim: To explore perceptions of people with Parkinson's disease and family carers about the use and impact of health and social care services, community and voluntary sector resources for the management of Parkinson's disease.<p> <p>Background: Resources from outside the formal health care system and collaborations between different levels and sectors could address the unmet needs of people with Parkinson's disease and their family carers and improve the management of Parkinson's disease in the community setting. <p>Design: A qualitative exploratory study was carried out in Denmark, Norway, Spain and the United Kingdom and was reported using the COREQ. Methods: Individual semi-structured interviews were conducted with people with Parkinson's disease and family carers between May and August 2020. Interviews were digitally recorded, transcribed verbatim and analysed using thematic analysis. A meta-ethnographic approach was used to analyse and synthesise cross-national findings. <p>Results: Forty-seven people with Parkinson's disease and 39 family carers participated in the four countries. Four themes and eight sub-themes emerged: (1) Personalised care for needs throughout the Parkinson's disease journey; (2) Accessibility of different types of support systems (including initiatives to support emotional well-being, physical rehabilitation, information on the healthcare services, voluntary associations and community groups); (3) Multiagency collaborations, a more comprehensive approach; (4) Acknowledgment of people with Parkinson's and family carers own role in Parkinson's disease management. <p>Conclusions: An integrated and person-and-community-centred approach, which includes the participation of the health, social, voluntary and community sectors, is desired by people with Parkinson's disease and their family carers to improve the management of Parkinson's in the community setting. These findings could contribute to the creation of more sustainable care systems at the European level that would better respond to individual and changing needs in people with Parkinson's disease and their family carers, and in other long-term conditions. <p>Patient or Public Contribution: The Patient and Public Involvement groups contributed to the design of the study, the interview guides and validation of findings. <p>Relevance to Clinical Practice: This study will inform the management of Parkinson's disease at the community level and the use of resources not only directly linked to the health system. Taking into account all the actors that provide care and support to people with Parkinson’ disease and family carers facilitates the creation of strategies that better respond to individual needs. Nurses and other health and social care professionals in the community and specialist levels of care should collaborate to develop multisectoral strategies that promote personalised and integrated care throughout the Parkinson's journey.

• Nielsen, Tove Lise; Kruse, Naja Benigna; Haahr, Anita; Hjelle, Ellen Gabrielsen; Bragstad, Line Kildal & Palmar-Santos, Ana [Show all 11 contributors for this article] (2022). Exploring health and social services in Denmark, Norway, Spain and the United Kingdom for the development of Parkinson's care pathways. A document analysis. Health and Social Care in the Community. ISSN 0966-0410. doi: 10.1111/hsc.13970. Full text in Research Archive Show summary

  People with Parkinson's disease (PD) may find it difficult to identify and access the wide number of services they need and are entitled to along their complex PD journey. As part of the project OPTIM-PARK – Optimisation of community resources and systems of support to enhance the process of living with Parkinson's Disease, document analysis was developed to create overviews of existing resources and systems of support in Denmark, Norway, Spain and the United Kingdom. Documents on community resources, policies, guidelines and professional recommendations were the main sources of information. They were sought systematically at official websites of the public sector (national and regional levels) and websites of non-governmental organisations and scientific societies; searches were performed in October 2020 and updated in September 2021. A higher-level cross-national content analysis integrated all the country-specific information. Data- and concept-driven coding frames were developed; trial coding and peer review strengthened face validity and reliability. The analysis led to overviews of: (1) Key aims at patient and societal levels. (2) Key elements in form of professional approaches. (3) Community resources. (4) Legally anchored services. In general, clear descriptions of how to implement care pathways and tools to facilitate delivery were missing in the included documents, and pathways and guidelines did not include referral to general social support, social security support or labour and employment support. The results shed light on the complex support systems and resources and can inspire the planning of more comprehensive care pathways for people with PD and other long-term conditions.

• Soilemezi, Dia; Palmar-Santos, Ana; Navarta-Sánchez, Maria Victoria; Roberts, Helen; Pedraz-Marcos, Azucena & Haahr, Anita [Show all 11 contributors for this article] (2022). Understanding support systems for Parkinson's disease management in community settings: A cross‐national qualitative study. Health Expectations. ISSN 1369-6513. doi: 10.1111/hex.13691. Full text in Research Archive Show summary

  Background Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long-term conditions such as Parkinson's disease. Objective This study aimed 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 Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships. Methods A mixed-methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta-ethnography approach was used to analyse and synthesize cross-national findings. Results A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services. Conclusions Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory. Patient or Public Contribution Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings.

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• Hjelle, Ellen Gabrielsen; Nielsen, Tove Lise; Bragstad, Line Kildal; Kruse, Naja Benigna; Vester, Louise Buus & Haavaag, Silje Bjørnsen [Show all 16 contributors for this article] (2026). OPTIM-PARK - A cross-national multisectoral intervention for people affected with Parkinson’s disease and their family carers. Full text in Research Archive Show summary

  Introduction/Rationale: Parkinson’s disease (PD) is a common neurological disorder that requires a complex approach. Objectives: The OPTIM-PARK intervention was developed to improve the living with PD through intersectoral collaboration and follow up by a coordinator in Denmark, Norway, Spain, and the UK. Methods/Approach: The three-month OPTIM-PARK intervention included face-to-face, digital or telephone consultations with a PD coordinator who had a background in occupational therapy, physical therapy, or nursing. Participants had at least one initial meeting and one follow-up after three months, with additional meetings as needed. The meetings were conducted with people with PD, family carers, or both, based on preference. Coordinators logged the follow up and used a template to guide the meetings, detailing resources beneficial to people with PD and family carers across "Body function and structure," "Activity and participation," and "Environmental factors." Each country identified local resources fitting these classifications. Results/Practice Implications: Fifty-eight coordinator logs were collected. Most intervention topics were raised by the participant with PD, while family carers focused on the person with PD needs, providing direct help or increasing training and general follow-up. Key issues included disease management, exercise, home care, practical help, and social support. The OPTIM-PARK intervention highlighted the importance of tailored, person-centered care and intersectoral collaboration in managing Parkinson’s disease. Conclusions and contribution to the occupational therapy profession The intervention shows how occupational therapists and other health care professionals, through personalized care and collaboration, can address complex needs, enhance quality of life, and support the management of long-term conditions, such as PD.

• Bragstad, Line Kildal (2023). Using CSNAT as a conversation tool in the OPTIM-PARK intervention in Parkinson’s disease. Full text in Research Archive
• Bragstad, Line Kildal; Nielsen, Tove Lise; Hjelle, Ellen Gabrielsen; Kruse, Naja Benigna; Vester, Louise Buus & Haahr, Anita [Show all 16 contributors for this article] (2023). The OPTIM-PARK project: Assessing acceptability of a cross-national multisectoral intervention for people affected by Parkinson's disease. Full text in Research Archive
• Haahr, Anita; Vester, Louise Buus; Bragstad, Line Kildal; Nielsen, Tove Lise; Kruse, Naja Benigna & Hjelle, Ellen Gabrielsen [Show all 13 contributors for this article] (2023). Coordinated care in Parkinson's Disease. Full text in Research Archive
• Hjelle, Ellen Gabrielsen; Nielsen, Tove Lise; Callesen, Jacob; Kruse, Naja Benigna; Vester, Louise Buus & Haahr, Anita [Show all 17 contributors for this article] (2023). Evaluating a cross-national multisevtoral OPTIM-PARK intervention for People with Parkinson's disease and their family carers in the community: a feasibility study. Full text in Research Archive
• Haahr, Anita; Vester, Louise Buus; Bragstad, Line Kildal; Nielsen, Tove Lise; Kruse, Naja Benigna & Hjelle, Ellen Gabrielsen [Show all 13 contributors for this article] (2023). The Coordinator - someone to turn to. Experiences of the OPTIM-PARK intervention from people with Parkinson's disease and their family carers. Full text in Research Archive
• Haavaag, Silje Bjørnsen (2022). "Du har Parkinson 365 dager i året" En kvalitativ studie om hjemmeboende personer med Parkinsons sykdom sine erfaringer fra møter med helsevesenet, med andre og seg selv. Full text in Research Archive
• Navarta-Sánchez, Maria Victoria; Pedraz-Marcos, Azucena; Palmar-Santos, Ana; Bragstad, Line Kildal; Haahr, Anita & Portillo-Vega, Mari Carmen (2022). Patient and Public Involvement in a research to improve Parkinson’s disease management in Spain. Full text in Research Archive
• Bragstad, Line Kildal; Haavaag, Silje Bjørnsen & Hjelle, Ellen Gabrielsen (2022). OPTIM-PARK prosjektet. Full text in Research Archive
• Navarta-Sánchez, Maria Victoria; Haahr, Anita; Bragstad, Line Kildal; Palmar-Santos, Ana; Roberts, Helen & Pedraz-Marcos, Azucena [Show all 17 contributors for this article] (2022). Optimization of community resources and systems of support to enhancethe process of living with Parkinson's Disease: A multicectoral intervention. Full text in Research Archive
• Palmar-Santos, Ana; Navarta-Sánchez, Maria Victoria; Pedraz-Marcos, Azucena; Haahr, Anita; Sørensen, Dorthe & Bragstad, Line Kildal [Show all 9 contributors for this article] (2022). Manejo de la enfermedad de Parkinson en el ámbito comunitario en cuatro países europeos: ¿cómo optimizar los recursos? [Håndtering av Parkinsons sykdom på samfunnsnivå i fire europeiske land: hvordan optimalisere ressursene?]. Full text in Research Archive
• Bragstad, Line Kildal (2021). Patient and public involvement in research in an international context. Examples from the OPTIM-PARK project. Full text in Research Archive
• Navarta-Sánchez, Maria Victoria; Palmar-Santos, Ana; Pedraz-Marcos, Azucena; Haahr, Anita; Bragstad, Line Kildal & Soilemezi, Dia [Show all 9 contributors for this article] (2021). OPTIM-PARK cross-country project: patients with PD and family carers perspectives about intersectoral collaboration. Full text in Research Archive
• Haavaag, Silje Bjørnsen & Bragstad, Line Kildal (2021). «Du har Parkinson 365 dager i året» En kvalitativ studie om hjemmeboende personer med Parkinsons sykdom sine erfaringer fra møter med helsevesenet, med andre og seg selv. Universitetet i Oslo. Full text in Research Archive

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