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Article

Participatory Research Partnership in Rehabilitation—Co-Development of a Model for Collaboration Process

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Department of Wellbeing, Metropolia University of Applied Sciences, 00920 Helsinki, Finland
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Department of Rehabilitation and Examination, Metropolia University of Applied Sciences, 00920 Helsinki, Finland
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Department of Future Health Care Services, Lapland University of Applied Sciences, 94600 Kemi, Finland
4
Graduate School and Research, Arcada University of Applied Sciences, 00550 Helsinki, Finland
*
Author to whom correspondence should be addressed.
Disabilities 2023, 3(3), 410-425; https://doi.org/10.3390/disabilities3030027
Submission received: 14 June 2023 / Revised: 4 September 2023 / Accepted: 5 September 2023 / Published: 7 September 2023

Abstract

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Purpose: Collaboration that engages diverse stakeholders to actively participate in the rehabilitation research process is becoming a crucially important approach when the purpose is to promote well-being in everyday life. The aim of this study was to co-develop a partnership-based participation model for research with stakeholders such as researchers, rehabilitees, close ones, rehabilitation professionals and experts by experience. Methods: We applied an action research approach. The Participatory Research Partnership (PaRe) model was co-developed in a multi-phase process including a literature review, workshops and focus group discussions (64 participants). The model was tested, evaluated and further developed in a developmental training process with 50 experts in rehabilitation. Results: The PaRe model consists of five phases: (1) starting the research partnership; (2) building a research team; (3) reciprocal co-planning of research; (4) co-production of new research data; and (5) utilization of research data in everyday life. The model comprises examples and templates including developmental and ethical evaluation. Conclusions: The PaRe model enhances co-agency, interaction and co-learning in rehabilitation research and practices. Active participation of users and providers of rehabilitation services in scientific research promotes everyday accessibility and relevance of research-based knowledge. The model ensures that the research process and results are meaningful and empowering for the participants.

1. Introduction

Rehabilitation is a multidisciplinary and collaborative endeavor with the person undergoing rehabilitation and the rehabilitee’s close ones, aiming to enhance their functional capacity in everyday life. It is a goal-directed process that is based on the needs of the rehabilitee [1]. Rehabilitation is conducted with the help and support of professionals. According to the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) framework, rehabilitation is a complex and interactive practical phenomenon [2]. Therefore, rehabilitation research should also have a multifaceted and collaborative approach.
Scientific research in rehabilitation is typically conducted by researchers and the topics are often based on existing theoretical premises and previous studies, repeating certain starting points. Lately, however, the democratization of research has generated new research approaches especially concerning minorities, vulnerable and marginalized citizens. For these research approaches, several different concepts used in the literature can be found, e.g., inclusive research, co-research and participatory or peer research [3,4,5,6].
Researchers have enabled professionals, service users and citizens to participate as partners and knowledge producers through a variety of approaches and methods. Such research approaches include citizen science with its use of crowdsourcing [7] and various collaborative research orientations such as co-research [8]. An action research approach is commonly used and is characterized by the participation of members of a given community in the development of their own environment, thus emphasizing research participants as active agents of change in their own community [9,10]. The approach known as inclusive research, on the other hand, allows for the accessibility of research activities, i.e., active participation of people with disabilities in research [11].
The terminology and definition of concepts in participatory research varies across approaches and disciplines [6,11,12]. Among others, the literature review by Hoekstra et al. (2020) identified more than 30 different concepts related to participatory research approaches from 86 included articles [6]. Examples of terms used to describe participatory approaches include community-based research, community-based participatory research, participatory action research and public scholarship. The participatory approaches in research have a common characteristic: individuals with experience, expertise in the research topic or those whose lives are directly impacted by the phenomenon being studied are invited to actively participate. The underlying assumption is that the collaborative nature of these approaches will lead to a more comprehensive, enriched and enhanced understanding of the phenomenon under investigation [13,14]. The activity in the different participatory approaches is divided into “consultation”, “collaboration” and “patient-led”. In “consultation”, researchers define the focus and ask people with lived experience about their opinion of the phenomena; in “collaboration”, people with lived experience and researchers work as equal partners in the research process; and in “patient-led”, people with lived experience are in charge of the research process (sometimes with assistance from researchers) [13,15].
There has been an increasing interest in patient and public involvement in research [3]. Activation of public laypeople in research is characterized by a process whereby research is carried out together with or by clients and other stakeholders [16]. It is important that research activities are carried out by all parties affected by the research or who benefit from the results—that means research in collaboration. In collaborative research, all participants work together in a co-productive way on equitable premises. Collaborative research can be understood as the democratization of research, but it also concerns a question of epistemological issues. When it comes to such phenomena as rehabilitation and rehabilitation experiences, epistemology is always complex. The research of complex issues requires multidimensional and transdisciplinary viewpoints and methods. Additionally, information about experiences is subjective. This subjectivity also applies to the researchers, whose interpretations are always linked to their own life history and understanding [17,18].
In a process of different collaborative research approaches, it is typical that end users are enabled to participate in the definition of research topics, search for funding, planning, data collection and analysis, evaluation, public