Perspectives on participation, wellness, satisfying and meaningful life : Implications to AAC

1. Perspectives on participation, wellness, satisfying and meaningful life: Implications to AAC Beata Batorowicz1, Nadia Browning 2, Darryl Sellwood3 1.CanChild Centre for Childhood Disability Research, McMaster University, 2.Assistive Technology and AAC Consultant, 3. Sellwood Consultant Introduction Findings Discussion / Relevance to AAC • The importance of participation in relation to health, development, and well-being has been recently widely discussed1,2,3. • Within a context of health and disability, disussions have focused on concepts of participation, well-being and/or wellness, and satisfying and /or meaningful life. These concepts are believed to be linked to positive developmental and health outcomes 4,5. • However, there is a lack of clarity how these terms are defined and used within health applied fields; we know little about the actual participation experiences of people who use AAC and how these experiences relate to their well-being or wellness, or contribute to satisfying or meaningful life. • The idea for this work was based on Darryl Sellwood’s keynote speaker address at the 8th Regional Eastern and Central European Augmentative and Alternative Communication Conference in Poland, Warsaw, 20116. • It is important to evaluate actual participation experiences of people using AAC within a specific social context rather than only participation problems or accomplishments 20, facilitators or barriers. Various settings can create various types of experiences, such as meaningful engagement, social connection, or self-understanding. • Participation experiences need to be studied from individuals’ perspective, rather than relying on proxies’ report 21,22. • Communication is essential to positive participation experiences. Communication experiences can cause negative feelings from loneliness to discrimination and can impact on the mental health of the person using AAC 23. • It is important for people who rely on AAC to start to have positive participation experiences as early as possible. • Meaningful participation requires first gaining and maintaining access to activities, places,people, resources, for example, information technology and employment 24,25,26. • Often in the AAC field, the focus is on the functional approach, which considers an environment as an arena for action with opportunities, barriers, and supports, providing conditions that facilitate or inhibit performance. Merging the functional approach with the developmental approach, which considers participation experiences over time will help to better understand long-term benefits / consequences of participation contributing to wellness and satisfyng life 27. Social Environment – Contextualized: places, activities, people, objects situated in time External conditions: opportunities, supports, resources, demands Over time contribute to Wellness Satisfying Life Participation experiences: (where person meets social environment): -Choice and Control, Belonging, Competence & Personal Growth, Meaningful Interactions, Psychological Engagement 14 Psychological recources self-determination, self-efficacy, personal control, meaning Having VOICE to: choose and to influence own settings; Being meaningfully engaged Objectives • To clarify and describe concepts of participation, well-being, wellness, satisfying life and meaningful life and to identify and explain linkages among the above concepts as relevant to AAC. • Relationships: reciprocity of person-environment influences in specific social context; and reciprocity between participation experiences and actual perceptions of wellness and satisfying life. • There were no consistent patterns of conceptual links between the meanings of key constructs; all of them are occasionally used in a reductionistic sense, for example, referring only to a certain domain of human life (physical, mental or spiritual). • Well-being and wellness: • Well-being refers to feelings in the moment, or to specific areas of life such as material well-being, emotional well being, spiritual well-being; the term ‘overall sense of well-being’ has been equated with the subjective quality of life, defined as psychological and social experiences across participation settings 15,16. • Wellness has been defined as a state or outcome (optimal state) and also as a process (over time practice). Wellness is a uniquely personal and subjective experience about which each person has his or her own narrative. It has been linked to: • Psychological and social experiences of participation over time provide a sense of wellness 18. • Proposed distinction: wellness is a broader concept capturing all domains of life (‘a whole of life view’ or holistic view) and refers to a life long dynamic process (quest for maximum human functioning that involves the body, mind and spirit) and a goal vs. well-being refers to feelings about an aspect of wellness. • Meaningful life and satisfying life: • Meaningful life: means having intentional or self-imposed structure and purpose and making contributions to something outside self; it may also refer to a spiritual dimension of human life 19. • Satisfying life: means enjoyable life, being fullfilled and happy about own life • Proposed distinction: satisfying life is experienced and meaningful life has some external significance. Methods • A review of interdisciplinary literature, including psychology, sociology, and health sciences. • Information was extracted and coded for viewpoints / perspectives, definitions, elements / domains / dimensions, and relationships; subsequently, this information was analysed descriptively. • The findings were summarized and organized into a visual model depicting the key concepts and relationships among them. • We followed a holistic paradigm, presenting the integrated view of health, which considers the physical, mental and spiritual aspects. Our approach was eco-systemic and constructivist-interpretative. We also followed transcendental pragmatism 7. • The findings from literature were summarized into the following categories: participation, meaningful participation, well-being and/or wellness, meaningful life and/or satisfying life. We defined these concepts and drew disctinctions between them. • Participation: ‘being a part of’ as situated in a social context (activities, people, places, objects, time)8; can be a) ‘here and now ‘, in the moment, experience; or b) a process (over-time); the later has long term developmental and health consequences 9; participation can be conceptualized as an objective (what people do) or as a subjective approach (personal experience of participating) 10. • Meaningful participation:psychological meaning that individuals derive from participation in specific contexts (eg. feelings of self- expression, self-determination, choice, challenge, fun) 11. Participation is realized at a personal level because an individual derives a sense of fulfillment, feels connected to others, and/or has a better understanding of self in a unique way 12,13. Conclusions and Future Directions Well-being Hedonic: Pleasure and enjoyment in the moment Eudemonic: Psychological self-fulfillment • A greater effort is needed to support the pursuit of interest, engagement, and meaningful participation of people using AAC to help them to achieve wellness and lead satisfying lives. • Both environment-focused and person-focused interventions are necessary. We need to built capacities in our communities and capacities within individuals using AAC to assure opportunities, affordances, social inclusion, and belonging. • We need to consider each person as a unique bio-psycho-socio- spiritual being. Competence Self-efficacy Findings Resources: material and psychological • co-determined by both: internal capacities and external conditions 17 Wellness Self-determination ‘... it is more than just enabling participation, it must be about enabling satisfied lives...’ 6 References Available at: www.thedazz.com/?page_id=407 ACKNOWLEDGMENTS: The first author was supported by a Canadian Institutes of Health Research (CIHR) Vanier Canada Doctoral Scholarship, CanChild Centre for Childhood Disability Research Award and the Ontario Neurotrauma Foundation.