Supporting Sense of Meaningful Life and Human Dignity in Digitally Assisted Physiotherapy Environment : Qualitative Secondary Research with Thematic Analyses and Inductive Synthesis

This is a self-archived version of an original article. This version may differ from the original in pagination and typographic details. Author(s): Title: Year: Version: Copyright: Rights: Rights url: Please cite the original version: CC BY 4.0 https://creativecommons.org/licenses/by/4.0/ Supporting Sense of Meaningful Life and Human Dignity in Digitally Assisted Physiotherapy Environment : Qualitative Secondary Research with Thematic Analyses and Inductive Synthesis © 2024 the Authors Published version Sjögren, Tuulikki; Korpi, Hilkka Sjögren, T., & Korpi, H. (2024). Supporting Sense of Meaningful Life and Human Dignity in Digitally Assisted Physiotherapy Environment : Qualitative Secondary Research with Thematic Analyses and Inductive Synthesis. In M. Särestöniemi, P. Keikhosrokiani, D. Singh, E. Harjula, A. Tiulpin, M. Jansson, M. Isomursu, M. van Gils, S. Saarakkala, & J. Reponen (Eds.), Digital Health and Wireless Solutions : First Nordic Conference, NCDHWS 2024, Oulu, Finland, May 7-8, 2024, Proceedings, Part I (2083, pp. 371-386). Communications in Computer and Information Science. https://doi.org/10.1007/978-3-031-59080-1_27 2024 Supporting Sense of Meaningful Life and Human Dignity in Digitally Assisted Physiotherapy Environment – Qualitative Secondary Research with Thematic Analyses and Inductive Synthesis Tuulikki Sjögren1(B)and Hilkka Korpi1,2 1Faculty of Sport and Health, University of Jyväskylä, Jyvaskyla, Finland [email protected] 2Oulu University of Applied Sciences, OAMK, Culture and Welfare, Oulu, Finland Abstract. The goal of this secondary research was to create a model that aims at increasing the sense of meaningful life and human dignity in physiotherapy by utilizing remote and digital rehabilitation technologies, focusing on people with cerebrovascular accident (CVA) and multiple sclerosis (MS). The results of this qualitative research effort have been obtained using thematic analyses and inductive synthesis. Our primary research, which provides materials for the secondary analysis, is based on qualitative systematic literature reviews and a meta-synthesis of the perceived meaningfulness of physiotherapy. The outcome of the secondary analysis is a research-based model, which combines rehabilitees´ experiences and expectations towards physiotherapy, professionals’ competence needs, and the technological prerequisites for using digital rehabilitation technologies with CVA and MS rehabilitees. Maintenance of human dignity and promotion of the sense of meaningful life, and various issues related to them, were most meaningful for the rehabilitees. The essential prerequisites of meaningful use of remote and digital rehabilitation technologies in physiotherapy were enabling identification of the rehabilitees’ own current functioning, needs and goals, supporting their motivation and commitment, choosing relevant and meaningful activities, creating safe and variable environments, and enabling social interaction and relationships. As far as we know, this is the first model which combines neurological rehabilitees’ experiences of physiotherapy with remote and digital technology’s potential. In the future, the usefulness of our novel research-based holistic and biopsychosocial physiotherapy model should be tested in real life situations. Keywords: Human dignity and sense of meaningfulness ·Digitalization ·Remote physiotherapy ·Modelling physiotherapy 1 Introduction Countries worldwide face challenges linked to population ageing. This demographic trend, coupled with increasing chronic diseases and mental problems poses significant social challenges. Both the active-age and senior citizens’ health and functional ability © The Author(s) 2024 M. Särestöniemi et al. (Eds.): NCDHWS 2024, CCIS 2083, pp. 371–386, 2024. https://doi.org/10.1007/978-3-031-59080-1_27 372 T. Sjögren and H. Korpi need to be supported to lessen the growth in health care costs and thus to ensure the economic and social sustainability of societies. Therefore, there is an increasing need for effective physiotherapy measures, firstly using early rehabilitation before individuals experience debilitating problems, and secondly to alleviate the inevitable later symptoms and functional capacity problems [1–3]. The tendency toward digitalization and greater role of remote techniques in rehabilitation requires new approaches on rehabilitation research. Compared to traditional face-to-face rehabilitation remote rehabilitation, relying to a greater extent on digital technologies, increases the significance of rehabilitees’ own commitment and technological skills. This type of change in the rehabilitation paradigm calls for a deeper understanding of those factors which support the rehabilitees’ sense of purpose in their efforts to work towards recovery and thus trigger intrinsic motivation. Consequently, the scope of the current mainstream rehabilitation research should be supplemented with more research on broader biopsychosocial, cultural, environmental, or artistic aspects of the rehabilitation process. Typical rehabilitation studies focus on testing the outcomes and short-term effectiveness of a single rehabilitation technique and sometimes just on one group of rehabilitees suffering from a single functionality impairment [4–6]. Even in the most recent policy reports, which cover activities in rehabilitation, the medical aspects have the primary role [7–9]. The organization of health and social services are currently at a watershed moment in Finland. In 2023, the organization of health and social services have been transferred from the responsibility of municipalities to 21 wellbeing services counties [10]. As part of this extensive change, it is important to research and develop the use of digitalization and remote technologies even in physiotherapy, and in such a way that individuals’ sense of human dignity and meaningful life is preserved during the rehabilitation process. In future we urgently need an open-minded approach to new technologies to ensure human resources, develop more personalized services, maintain sound public finances, alleviate sustainability crisis, and all-in-all respond to the variable challenges posed by ageing societies [11]. It is important to develop digital solutions which are useful, efficient and sustainable. During the process, rehabilitees’ and rehabilitation staffs’ attitudes and opinions should be taken into consideration [12,13]. For example, our recently published study indicated that, 75% of Finnish physiotherapists reported that they used mainly conventional physiotherapy, and remote physiotherapy is still minimally used as the primary working method at different stages of the physiotherapy process [14]. According to physiotherapists, remote rehabilitation techniques are least suitable for neurological rehabilitees [15], even though they are a group of rehabilitees who are in most need of very intensive therapeutic training as well as guidance, counselling and support in their everyday life [5,16–18]. Development of rehabilitation platforms, rehabilitation applications, telemedicine solutions and even digital twin solutions are rapidly increasing [19]. There is a lack of digital and remote technology solutions which are rehabilitee-centered, holistic and reflect the biopsychosocial model of rehabilitation for use in neurological physiotherapy. For example, the main contents of commercial models for MS rehabilitees are still narrowly focused on medical care [19,20], medical aspects of self-care [19,21], physical activity [19,22,23], or self-management [19,24]. Supporting Sense of Meaningful Life and Human Dignity 373 Non-compliance with various therapies and treatments in chronic diseases is a worldwide problem of striking magnitude, making this a critical issue in population health both from the perspective of life quality, and health economics as well as of health system effectiveness [1]. The same problem concerns also home exercise that shows low adherence (as low as 50%), potentially having detrimental effects on clinical outcomes. Some studies highlight that well-designed health technologies provide us with the opportunity to better support both the patient and clinician. Of significance is a data-driven approach that incorporates features designed to increase adherence to exercise, such as coaching, self-monitoring and education, as well as the ability to remotely monitor adherence rates more objectively [25]. However, a recently published meta-analysis showed that technology assisted self-rehabilitation (remote coaching, self-monitoring, education, and adherence) did not appear to have a significant effect on the outcomes [26]. So, as far as we can conclude, commitment and adherence in self-rehabilitation context is still an unresolved problem in remote physiotherapy [25–28]. The goal of this research was to create a rehabilitation model that aims at sustaining the sense of meaningful life and human dignity in physiotherapy, potentially having positive effects on rehabilitees´ commitment and adherence when using remote and digital rehabilitation technologies. The focus was on people with cerebrovascular accident (CVA) or multiple sclerosis (MS). 2 Materials and Methods CVA and MS rehabilitees are very suitable study populations for the purpose of this study. CVA and MS have an impact on persons’ physical, psychological, social, and cognitive functioning, affecting their daily life activities, participation, and quality of life. In addition to the affected individuals, CVA and MS also place a considerable burden on their families, caregivers, and in overall on the entire society [29,30]. Since 1990, the prevalence of CVA has increased over 70% worldwide in less than 30 years [31]. Each year, approximately 1.1 million Europeans suffer a stroke, and in 2020 there were an estimated 9.5 million stroke survivors in Europe [32,33]. By 2030, the stroke prevalence is expected to rise by 35% [34]. An increasing trend can also be seen in people with MS showing a 30% increase from 2013 to 2020 worldwide [35]. This study is a secondary analysis using thematic analyses and inductive synthesis of detected meanings in the materials [36], considering both the results of rehabilitee experiences of meaningful physiotherapy and the results of the experiences in using rehabilitation technology. The primary analyses have been produced as part of our previous line of research using two extensive systematic literature reviews (publication dates extending from Jan. 2001 to Nov. 2017), the first one focusing on CVA rehabilitees and the second one on MS rehabilitees. The reviews included 50 qualitative studies in total (711 rehabilitees) [16,17]. The literature search of qualitative studies was conducted from the Cumulative Index to Nursing and Allied Health Literature (CINAHL), the National Library of Medicine (Ovid MEDLINE), and the Education Resources Information Center (ERIC). In addition, the searches were supplemented with manual and reference searches. According to the qualitative PICoS framework, the inclusion criteria were adult CVA and MS rehabilitees (age ≥18 years) (P =population or problem, i.e. patient). Our focus of interest was on 374 T. Sjögren and H. Korpi rehabilitees’ views, perceptions, and experiences of physiotherapy (I =interest). In the literature search, the content of physiotherapy was not limited, and different methods, practices and operating environments of physiotherapy used in Finnish physiotherapy were accepted (Co =context). All original studies conducted using a qualitative research design (S =study design) were included. Studies published in English, Swedish, German and Finnish were accepted as data. The original idea of the study was to use the literature reviews to investigate rehabilitee experiences of meaningful physiotherapy. The analysis of the systematic literature (CVA/MS) review data was conducted in five phases: 1) Classifying and summarizing the study results according to the PICoS criteria and main results, 2) narrative synthesis of the results [cf.37], 3) constructing lower and upper themes of meaningful experiences [cf. 38], 4) metasynthesis of qualitative research results by rehabilitee-specific (CVA/MS) groups, and 5) combining both rehabilitee groups [cf.38]. The stages of the analysis were carried out as triangulation by two pairs of researchers [16,17]. The results of our primary research have been published in Korpi et al. 2022 [16], Sjögren et al. 2022 [17,18]. These results have served as the materials for our secondary analysis, which we have divided into three phases. For the first phase of the analysis, we have focused on the rehabilitee experiences of meaningful physiotherapy and reclassified the findings in such a manner that we can create a coherent synthesis (i.e., phase three) when combined the outcomes with the outcomes of the second phase. For the second phase, the sense of meaningfulness in physiotherapy was examined from the perspective of rehabilitation technologies, including remote technologies. Technology use in rehabilitation was not a specific issue in our primary study, but it frequently had come up as part of the experiences tackled by the rehabilitees. These data were analyzed following a standard thematic content analysis process [cf.38]. For the third phase, we have integrated the main results of the previous secondary analysis phases to create a theoretical model as a synthesis of this study. The model is expected to provide tools for sustaining the sense of meaningful life and human dignity in physiotherapy for CVA and MS rehabilitees, particularly when using digital rehabilitation technologies and techniques of remote physiotherapy. The key concepts used throughout this study are human dignity and sense of meaningful life. Human dignity has generally been identified as a concept or phenomenon intertwined with human rights [39] or defined in several various ways [40]. From the perspective of physiotherapy science or rehabilitation we have not tied the concept of human dignity with any single human characteristic (e.g., gender, functional ability) or operational environment (e.g., clinical work). Our perspective is more linked to the general idea that every individual holds a special value that is tied with their humanity. In our research context, human dignity means that during physiotherapy rehabilitation rehabilitates should be treated in such manner that their individual human value and basic human rights, needs and wishes are consistently respected. The sense of meaningful life, in turn, can be associated with, e.g., safety, dependency, flexibility and one’s physical and social world [41]. The entire process of secondary analysis was carried out using researcher triangulation conducted by the authors. At first, the researchers worked independently by adding the relevant factors of a meaningful physiotherapy process and the use of technology Supporting Sense of Meaningful Life and Human Dignity 375 in the same context to the framework originating from the primary analysis (“meaningful experiences of physiotherapy”). Secondly, the researchers formed a consensus over the results by discussing as well as by forming the principal essential prerequisites for meaningful physiotherapy, also focusing on the use of digital and remote technologies. 3 Results Our secondary analysis confirmed that the most fundamental generic elements in physiotherapy, based on the interpretation of the rehabilitee feedback (mostly interviews), should be preservation of meaningfulness in life and maintenance of human dignity. These elements were primarily reinforced by treating the rehabilitees as individuals, respecting their independence and freedom of choice, promoting their participation in ordinary life, and ensuring that they could preserve faith and hope for the future (see the middle sections in Fig. 1). Fig. 1. Technology assisted personalized physiotherapy model: The Human Dignity Centered Rehabilitation approach Striving for the above listed goals requires a physiotherapy model, which takes into account the following seven factors related to the content of physiotherapy treatment:1) Improving self-confidence, 2) strengthening psychological and cognitive wellbeing, 3) maintaining the meaningfulness of rehabilitation, 4) using reflective discussions to overcome rehabilitation linked challenges, 5) conducting a fair and professional rehabilitation process, also recognizing the need for a holistic biopsychosocial approach to rehabilitation, 6) enabling improvements in body awareness/image, physical functioning and physical activity as well as accessibility, and 7) enabling empowerment through dynamic interaction with others. Table 1is a concise presentation of all these factors, which have been derived from the systematic literature review data using the applied qualitative analysis approach. 376 T. Sjögren and H. Korpi Table 1. Rehabilitees´ experiences in physiotherapy focusing on the elements of human dignity and sense of mea‘xningful life. Rehabilitees self-reflections on their rehabilitation process Professional competence needs for supportive rehabilitation Themes supporting human dignity and sense of meaningful life Enabling improvements in body awareness/ image, physical functioning and physical activity as well as accessibility Enabling empowerment through dynamic interaction with others Enabling increases in self-confidence Strengthening psychological wellbeing, including cognitive wellbeing Conducting a fair and professional rehabilitation process Recognizing the Need for a biopsychosocial approach to rehabilitation Using reflective discussions to overcome rehabilitation challenges Maintaining the meaningfulness of rehabilitation (continued) Supporting Sense of Meaningful Life and Human Dignity 377 Table 1. (continued) Rehabilitees self-reflections on their rehabilitation process Professional competence needs for supportive rehabilitation People with cerebrovascular accident (CVA) Korpi et al. 2022 [16] Physical functioning and perceived benefits: Physical functioning and participation in society Social support and relevance of networks: Support from the peers, physiotherapists, friends, and relatives Psychosocial wellbeing: Mood, psychosocial functioning, and faith in the future Physiotherapeutic professional competencies, role and significance: Professional skills and experience, positive and considerate attitude, rehabilitation support, individualized therapy and support Challenges and conflicts in the rehabilitation process: Disappointments, frustration as well as failure to acknowledge individuality, autonomy, accessibility and equality Experiences of motivation, rehabilitation process requirements and participation: Meaningfulness of exercises, commitment to training, rehabilitation environments and facilities Illness and functional capacity as an individual experience Experience of autonomy, sustainable physiotherapy, participation and use of rehabilitation services Active role in the operating environment, as early and continuous participation as possible positive experiences and hope, individuality and personal wishes regarding physiotherapy, maintenance of hope People with multiple sclerosis (MS) Sjögren et al. 2022 [17] Body awareness and body functions, physical activity (capacity), physical functioning in everyday life (performance), self-rehabilitation Working together, being understood, obtained support from physiotherapy Self-confidence, positive emotions, active everyday life Good rehabiliteetherapist relationship, diverse and wide-ranging guidance skills, specialized expertise related to the disease, therapeutic permanence Decreasing physical functioning, failure to reconcile the needs with provision, experiences of failure Taking into consideration individual autonomy, goal-oriented actions and processes as well as diverse operating environments 378 T. Sjögren and H. Korpi Table 2. Examples of rehabilitees´ experiences focusing on rehabilitation technology assisted physiotherapy. Themes Reflecting perceived essential prerequisites for technology assisted physiotherapy Supporting motivation and commitment Enabling social interactions and social relationships Building a safe and variable training environment Helping to choose relevant and meaningful activities for oneself Enabling identification of rehabilitation needs and goals Supporting rehabilitees‘ understanding of their current functioning status and the path to improvements Perceived meaningfulness of physiotherapy (CVA) Korpi et al. 2022 [16] Nintendo Wii game console was experienced to be easy to use and fun Gaming was seen as a new and challenging method of rehabilitation The rehabilitees encouraged their peers to trythismethod[44] Games were found entertaining and fun and were also regarded to facilitate adherence to rehabilitation [44] Rehabilitees brought up the idea of developing a rehabilitation app for smartphones, and many of them emphasized that telephone could be a very effective way to maintain contact with their personal physiotherapist [45] Remote communication with their physiotherapist encouraged rehabilitees to become engaged in activities [45] The opportunity to use text messaging was especially beneficial for people with aphasia [45] Weekly contact by phone was more important for those rehabilitees who could not leave their home due to poor physical mobility or who, for any reason, spent most of their time alone [46] Digital gaming improved one’s possibilities to exercise and recuperate, following one’s own preferred schedule [44] Rehabilitees were annoyed by the lack of alternative modes of physiotherapy and exercises in the public sector They proposed Nintendo Wii game console or something similar, which could diversify the available modes of exercising, either independently at home or as part of a structured exercise program [44] Technology assisted training could help in maintaining hope and therefore encourage the rehabilitees to continue practicing until the desired and valued activity level has been reached [45] Rehabilitees appreciated that digital games gave them instant feedback using metric scores, which helped them to measure their personal development [46] Digital gaming (e.g. Nintendo Wii game console) had positive effects on cognition. 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