The meaning of leisure participation: perspectives of children and young people with significant physical disabilities

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Background: Leisure can be defined as activities we choose to do in our free time for enjoyment (Majnemer, 2009, p. 2). Leisure is recognised as a human right (United Nations General Assembly, 1948, 1989) and is important for health and wellbeing (Kuykendall, Tay & Ng, 2015). Children and young people (CYP) with physical disabilities view leisure as essential for their quality of life, yet they have fewer and less diverse leisure opportunities than their non-disabled peers (Shikako-Thomas, Kolehmainen, Ketelaar, Bult & Law, 2014). National policies on participation and inclusion require services to consider the views of young people in service design and provision (e.g. Australian Local Government Association, 2016; Children and Families Act 2014). Occupational therapists who aim to facilitate meaningful leisure participation need to consider a person’s perception of their involvement in that activity (Imms, Adair, et al., 2016), which requires an understanding of what leisure means to the young people themselves. A qualitative synthesis of the literature was conducted to identify existing knowledge related to the meaning of leisure for CYP with disabilities. Twelve qualitative studies reporting the views of CYP with physical disabilities on leisure participation were analysed. Analysis involved thematic syntheses, double coding, and established quality appraisal procedures (Thomas & Harden, 2008). Core themes on the meaning of leisure: fun, freedom, friendship and fulfilment, corresponded to the psychological needs of Self-Determination Theory (SDT) (autonomy, relatedness and competence). Limited research exploring the experience of leisure with CYP with complex physical and communication disabilities was found (Powrie, Kolehmainen, Turpin, Ziviani & Copley, 2015), highlighting the need for further research in this area. Aim: The purpose of this study was to understand meaningful participation in leisure from the perspective of CYP with complex physical and communication disabilities. The research questions were: 1. What is the meaning of leisure for CYP with complex disabilities that significantly limit their physical and communicative ability? 2. How do these CYP experience leisure? Method: Data was sought directly from CYP about their experience of leisure using a hermeneutic phenomenological qualitative research design. Purposive sampling identified six participants, three males and three females, aged 9-19 years. All were at level IV or V on the Gross Motor Function Classification System, and all were at level II or III on the Communication Function Classification System. Participants were interviewed three times over approximately six months. A semi-structured interview format based on open-ended questions was used, supported by photo elicitation, Talking Mats and direct observation. Rigorous development of the interview process accommodated the individual communication styles of participants. Data analysis was undertaken in two ways. First, individual narratives were generated from the interview data. Second, a cross-case analysis of the complete data set was undertaken to identify similar and different experiences across cases. The results of this analysis were further informed by published autobiographies written by people with similar disabilities to enhance understanding of the meaning of the results. Data analysis was iterative and multi-directional over multiple stages. Field notes, memos and group discussions with advisors, and ongoing communication with one participant were used as reflective tools to identify assumptions, and to provide challenges and critical review of emerging themes. Results: The narrative summaries highlighted the importance of situating leisure experience within the circumstances of each person’s life. The cross-case analysis provided an understanding of the phenomenon of leisure for CYP with disabilities. The essences of leisure were formulated into a metaphor, the tree of leisure, which contains three essential features: the fruit, representing ‘enjoyment’, the trunk, representing ‘choice and control’, and the canopy, representing the need for leisure to be ‘engrossing’. There are four branches of the tree of leisure: expression, escape, exploration and exchange. The tree is grounded in the context of the activity (e.g. swimming) and is situated in the broader environment (e.g. social). The fruit of leisure provided nourishment beyond the immediate pleasure of enjoyment, contributing to both hedonic and eudaimonic wellbeing through restorative, constructive, reflective and protective benefits and connection with others. Discussion: The lived experience of leisure for these CYP was consistent with literature on the broader population. The proposed model developed from the findings of this research illustrates the different leisure needs young people seek to fulfil and the beneficial outcomes they experience from leisure. The model has resonance with aspects of two current models of leisure (Iwasaki, Messina & Hopper, 2018; Newman, Tay & Diener, 2014). A balanced array of diverse leisure experiences provides a powerful and accessible route to meaning-making and well-being for CYP. Implications: Leisure experiences were uniquely constructed for each person, based on their preferences, personality and circumstances. Considering the environment in which leisure occurs may be important to ensure meaningful leisure for CYP. This includes increasing access to peers and ensuring that assistance from others enhances rather than diminishes their experiences of leisure.