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Examining the experience of social and occupational participation among persons with physical disabilities: Development of a model of social and occupational participation

This paper presents a brief summary of our work examining the everyday experience of social and occupational participation among persons with physical disabilities living in Croatia. A full presentation of the results of this research is provided in two previously published scientific articles (Bartolac & Sangster Jokić, 2018 ; Sangster Jokić & Bartolac, 2018). The International Classification of Functioning, Disability & Health (ICF) (World Health Organization, 2001) defines participation as ‘involvement in a life situation’ (p. 10), which manifests as an interaction between an individual and his or her environment and is closely linked to health and quality of life. In this paper, we examine the concept of participation using two related, but distinct concepts: social participation and occupational participation. Social participation might be generally defined as social engagement, which includes exchanges and interactions during social occupations (Prohaska, Anderson, & Binstock, 2012) or any human social activity that aims to raise awareness or influence social attitudes (Zaleskiene, 2008). The American Occupational Therapy Association (AOTA, 2014) defines social participation as engagement in occupations that contribute to social interaction in community life, familial roles and intimate relationships. Indeed, current understanding of social participation in part emphasizes its close relationship with engagement in meaningful everyday occupations that are part of a given socio-cultural context and/or contribute to personal well-being. Occupational participation is a means through which a person acquires skills, connects with others, finds purpose and meaning in life and achieves that which is important to them (Hocking, 2009 ; Law, 2002). As such, participation in meaningful occupation becomes the basis for social participation. Furthermore, both involvement and engagement in social groups and meaningful participation in occupations are important for physical and psychological well-being (Gallagher et al., 2015). We argue that current conceptualizations of social and occupational participation are consistent with the social model of disability, which emphasizes the (in)ability of society to adapt to diversity among its members and organize the environment to be accessible to everyone (Lang, 2007). Conversely, various physical, social and institutional barriers can limit a person’s occupational participation, resulting in occupational deprivation or marginalization (Hocking, 2017 ; Whiteford & Townsend, 2011). Indeed, understanding notions of participation among persons with disabilities requires a consideration of the various ways in which meaningful participation is supported and the barriers to participation experienced by marginalized groups. However, concepts of social and occupational participation have rarely been studied together nor is there a clear consensus on the definitions of these concepts. As such, the aim of the present study was to examine these concepts and their interrelationship more carefully through an exploration of the everyday experiences of social and occupational participation among persons with physical disabilities living in Croatia. This research employed a qualitative research methodology in which individual interviews and focus groups were conducted using semi-structured protocols designed for the purposes of the study. A total of 15 participants were recruited using a purposive sampling method. All participants had long-term experience with physical disability that significantly affected mobility. Participants were aged between 20 and 65 years and were all living in Zagreb at the time of data collection. Interview and focus group data were analysed using a constant comparative approach (Corbin & Strauss, 2014), whereby a coding framework was gradually developed and applied to an in-depth review of the data and excerpts and codes reflecting emerging themes were gradually synthesized into an organized structure. Using the framework and coded data, participant statements were clustered into meaningful units representing themes of interest. Three main themes emerged from this data analysis process: • Occupational and social participation: Means for inclusion • Exclusion as a consequence of occupational deprivation and social marginalization • Enablers and barriers to meaningful participation Under the first theme, participants’ perspectives confirmed the importance of participation in occupations as a means for deriving purpose, satisfaction and meaning in life, asserting independence and achieving a sense of inclusion through the fulfilment of important social roles. In contrast, participants also identified numerous instances in which they were unable to perform or participate in desired occupations. In this second important theme, participants described their experiences of occupational deprivation as a loss of control or choice over performance of important occupations, as a result of inaccessibility in the physical environment or as exclusion and marginalization in educational and professional spheres. Together, these experiences represented a significant source of stress, frustration and isolation for all participants. The third theme to arise from our analysis examined the numerous factors reported by participants that supported or inhibited successful participation. These factors represented elements at both an individual level and a more systemic level and included personal attitudes and adaptability, perceived support from others, (in)accessibility, lack of services and inadequate institutional support. Interestingly, a common thread linking many of the reported barriers to participation was the continued presence of stigma and discrimination experienced by persons with physical disabilities. For participants, discrimination experienced at various levels of personal and social life was a leading cause of reduced participation, social marginalization and exclusion. The findings arising from the present study were synthesized to construct a tentative model representing the emerging ideas, in which social and occupational participation is depicted as a dynamic continuum. At one end of this continuum, successful participation acts as a vehicle through which inclusion is achieved. At the other end, where participation decreases, inclusion is replaced by exclusion linked to processes of occupational deprivation and social marginalization. The proposed model also encompasses the numerous enablers and barriers to participation reported by participants, which fall under individual, environmental and systemic levels and the negative consequences of exclusion for health and well-being. Through its examination of the everyday experiences of persons with disabilities in Croatia, this study provides new insight into the nature of participation among this often marginalized group. The proposed model has assembled various elements emerging from the analysis, while also offering new understanding to existing literature. More importantly, it raises many potential directions for further investigation and, as such, might act as a useful framework to further examining this important topic.

social participation, occupational participation, physical disabilities

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