Advertisement

Broadening the Conceptualization of Participation of Persons With Physical Disabilities: A Configurative Review and Recommendations

      Abstract

      Within the context of physical disability, participation has typically been conceptualized in terms of one's performance of different roles and activities. This perspective, however, ignores the meanings and satisfactions that a person derives from participating. Without an accepted conceptualization of participation that accounts for people's subjective perceptions and experiences, it is challenging for decision-makers and service providers to design meaningful participation-enhancing services, programs, and policies. Accordingly, our objectives were (1) to conduct a review of definitions and conceptualizations of participation that extend beyond performance and capture people's subjective experiences of participating and (2) to identify key experiential aspects of participation that can be used as a basis for conceptualizing and operationalizing the concept more broadly. The project involved a systematic, configurative review of relevant literature. Ten relevant articles were identified. Information on characteristics associated with experiential aspects of participation was extracted and subjected to a thematic analysis. The following 6 themes emerged: autonomy, belongingness, challenge, engagement, mastery, and meaning. Drawing on these findings, it is recommended that the individual's subjective perceptions of autonomy, belongingness, challenge, engagement, mastery, and meaning associated with participating be incorporated into conceptualizations and operationalizations of the participation construct. This recommendation provides a starting point for clinicians, researchers, and policymakers to conceptualize and measure the participation concept more consistently and more broadly.

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Archives of Physical Medicine and Rehabilitation
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Noreau L.
        • Fougeyrollas P.
        • Post M.
        • Asano M.
        Participation after spinal cord injury: the evolution of conceptualization and measurement.
        J Neurol Phys Ther. 2005; 29: 147-156
        • Whiteneck G.G.
        • Dijkers M.
        Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors.
        Arch Phys Med Rehabil. 2009; 90: S22-S35
        • Levasseur M.
        • Desrosiers J.
        • Noreau L.
        Is social participation associated with quality of life of older adults with physical disabilities?.
        Disabil Rehabil. 2009; 26: 1206-1213
        • Law M.
        Participation in the occupations of everyday life.
        Am J Occup Ther. 2002; 56: 640-649
      1. United Nations, Department of Public Information. Convention of the rights of persons with disabilites. 2006. Available at: http://www.un.org/disabilities/convention/conventionfull.shtml. Accessed December 29, 2015.

        • Dijkers M.
        Issues in the conceptualization and measurement of participation: an overview.
        Arch Phys Med Rehabil. 2010; 91: S5-S14
        • Fayed N.
        • de Camargo O.K.
        • Elahi I.
        • et al.
        Patient-important activity and participation outcomes in clinical trials involving children with chronic conditions.
        Qual Life Res. 2014; 23: 751-757
        • Barclay L.
        • McDonald R.
        • Lentin P.
        Social and community participation following spinal cord injury: a critical review.
        Int J Rehabil Res. 2015; 38: 1-19
        • Carpenter C.
        • Forwell S.J.
        • Jongbloed L.E.
        • Backman C.L.
        Community participation after spinal cord injury.
        Arch Phys Med Rehabil. 2007; 88: 427-433
        • Law M.
        • King G.
        • King S.
        • et al.
        Patterns of participation in recreational and leisure activities among children with complex physical disabilities.
        Dev Med Child Neurol. 2006; 48: 337-342
        • Clayton S.
        • Bambra C.
        • Gosling R.
        • Povall S.
        • Misso K.
        • Whitehead M.
        Assembling the evidence jigsaw: insights from a systematic review of UK studies of individual-focused return to work initiatives for disabled and long-term ill people.
        BMC Public Health. 2011; 11: 170
        • Rimmer J.H.
        • Chen M.D.
        • McCubbin J.A.
        • Drum C.
        • Peterson J.
        Exercise intervention research on persons with disabilities: what we know and where we need to go.
        Am J Phys Med Rehabil. 2010; 89: 249-263
        • World Health Organization
        International classification of functioning, disability, and health (ICF).
        World Health Organization, Geneva2001
        • Hammel J.
        • Magasi S.
        • Heinemann A.
        • Whiteneck G.
        • Bogner J.
        • Rodriguez E.
        What does participation mean? An insider perspective from people with disabilities.
        Disabil Rehabil. 2008; 30: 1445-1460
        • Ueda S.
        • Okawa Y.
        The subjective dimension of functioning and disability: what is it and what is it for?.
        Disabil Rehabil. 2003; 25: 596-601
        • Kramer J.M.
        • Olsen S.
        • Mermelstein M.
        • Balcells A.
        • Liljenquist K.
        Youth with disabilities' perspectives of the environment and participation: a qualitative meta-synthesis.
        Child Care Health Dev. 2012; 38: 763-777
        • Levasseur M.
        • Richard L.
        • Gauvin L.
        • Raymond E.
        Inventory and analysis of definitions of social participation found in the aging literature: proposed taxonomy of social activities.
        Soc Sci Med. 2010; 71: 2141-2149
        • Cobigo V.
        • Ouellette-Kuntz H.
        • Lysaght R.
        • Martin L.
        Shifting our conceptualization of social inclusion.
        Stigma Res Action. 2012; 2: 75-84
        • Cummins R.A.
        • Lau A.L.
        Community integration or community exposure? A review and discussion in relation to people with an intellectual disability.
        J Appl Res Intellect Disabil. 2003; 16: 145-157
        • Gough D.
        • Thomas J.
        • Oliver S.
        Clarifying differences between review designs and methods.
        Syst Rev. 2012; 1: 1-9
        • Lilford R.J.
        • Richardson A.
        • Stevens A.
        • et al.
        Issues in methodological research: perspectives from researchers and commissioners.
        Health Technol Assess. 2001; 5: 1-57
        • Morgan C.
        • Burns T.
        • Fitzpatrick R.
        • Pinfold V.
        • Priebe S.
        Social exclusion and mental health.
        Br J Psychiatry. 2007; 191: 477-483
        • Chow W.S.
        • Priebe S.
        Understanding psychiatric institutionalization: a conceptual review.
        BMC Psychiatry. 2013; 13: 169
        • Sparkes A.C.
        • Smith B.
        Qualitative research methods in sport, exercise and health: from process to product.
        Routledge, London2014
        • Hammel K.W.
        Quality of life, participation and occupational rights: a capabilities perspective.
        Aust Occup Ther J. 2015; 62: 78-85
        • Heinemann A.W.
        • Lai J.S.
        • Magasi S.
        • et al.
        Measuring participation enfranchisement.
        Arch Phys Med Rehabil. 2011; 92: 564-571
        • Hoogsteen L.
        • Woodgate R.L.
        Can I play? A concept analysis of participation in children with disabilities.
        Phys Occup Ther Pediatr. 2010; 30: 325-339
        • Imms C.
        • Granlund M.
        Participation: are we there yet?.
        Aust Occup Ther J. 2014; 61: 291-292
        • Hjelle K.M.
        • Vik K.
        The ups and downs of social participation: experiences of wheelchair users in Norway.
        Disabil Rehabil. 2011; 33: 2479-2489
        • Maxwell G.
        • Augustine L.
        • Granlund M.
        Does thinking and doing the same thing amount to involved participation? Empirical explorations for finding a measure of intensity for a third ICF-CY qualifier.
        Dev Neurorehabil. 2012; 15: 274-283
        • Deci E.L.
        • Ryan R.M.
        Intrinsic motivation and self-determination in human behavior.
        Plenum Pr, New York1985
        • Ryan R.M.
        • Deci E.L.
        Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being.
        Am Psychol. 2000; 55: 68-78
        • Barrick M.R.
        • Mount M.K.
        • Li N.
        The theory of purposeful work behavior: the role of personality, higher-order goals, and job characteristics.
        Acad Manage Rev. 2013; 38: 132-153
        • Csikszentmihalyi M.
        • LeFevre J.
        Optimal experience in work and leisure.
        J Pers Soc Psychol. 1989; 36: 815-822
        • Moll S.E.
        • Gewurtz R.E.
        • Krupa T.M.
        • Law M.C.
        • Larivière N.
        • Levasseur M.
        “Do-Live-Well”: a Canadian framework for promoting occpation, health, and well-being.
        Can J Occup Ther. 2015; 82: 9-23
        • Minnes P.
        • Carlson P.
        • McColl M.A.
        • Nolte M.L.
        • Johnston J.
        • Buell K.
        Community integratio: a useful construct, but what does it really mean?.
        Brain Inj. 2003; 17: 149-159
        • Sander A.M.
        • Clark A.
        • Pappadis M.R.
        What is community integration anyway?: defining meaning following traumatic brain injury.
        J Head Trauma Rehabil. 2010; 25: 121-127
        • Chang F.H.
        • Coster W.
        • Helfrich C.A.
        Community participation measures for people with disabilities: a systematic review of content from an International Classification of Functioning, Disability and Health perspective.
        Arch Phys Med Rehabil. 2013; 94: 771-781
        • Eyssen I.C.
        • Steultjens M.P.
        • Dekker J.
        • Terwee C.B.
        A systematic review of instruments assessing participation: challenges in defining participation.
        Arch Phys Med Rehabil. 2011; 92: 983-997
        • Cardol M.
        • de Haan R.J.
        • de Jong B.A.
        • van den Bos G.A.
        • de Groot I.J.
        Psychometric properties of the Impact on Participation and Autonomy Questionnaire.
        Arch Phys Med Rehabil. 2001; 82: 210-216
        • Wood-Dauphinee S.
        • Opzoomer M.A.
        • Williams J.I.
        • Marchand B.
        • Spitzer W.O.
        Assessment of global function: The Reintegration to Normal Living Index.
        Arch Phys Med Rehabil. 1988; 69: 583-590
        • Gignac M.A.
        • Backman C.L.
        • Davis A.M.
        • et al.
        Understanding social role participation: What matters to people with arthritis?.
        J Rheumatol. 2008; 35: 1655-1663
        • Brown M.
        • Dijkers M.P.
        • Gordon W.A.
        • Ashman T.
        • Charatz H.
        • Cheng Z.
        Participation objective, participation subjective: a measure of participation combining outsider and insider perspectives.
        J Head Trauma Rehabil. 2004; 19: 459-481
        • Heinemann A.
        • Magasi S.
        • Bode R.K.
        • et al.
        Measuring enfranchisement: importance of and control over participation by people with disabilities.
        Arch Phys Med Rehabil. 2013; 94: 2157-2165
        • Deci E.L.
        • Ryan R.M.
        • Gagné M.
        • Leone D.R.
        • Usunov J.
        • Kornazheva B.P.
        Need satisfaction, motivation, and well-being in the work organizations of a former Eastern Bloc country.
        Pers Soc Psychol Bull. 2001; 27: 930-942
        • Ilardi B.C.
        • Leone D.
        • Kasser R.
        • Ryan R.M.
        Employee and supervisor ratings of motivation: main effects and discrepancies associated with job satisfaction and adjustment in a factory setting.
        J Appl Soc Psychol. 1993; 23: 1789-1805
        • Kasser T.
        • Davey J.
        • Ryan R.M.
        Motivation, dependability, and employee-supervisor discrepancies in psychiatric vocational rehabilitation settings.
        Rehabil Psychol. 1992; 37: 175-187
        • May D.R.
        • Gilson R.L.
        • Harter L.M.
        The psychological conditions of meaningfulness, safety and availability and the engagement of the human spirit at work.
        J Occup Organ Psychol. 2004; 77: 11-37
        • Morgeson F.P.
        • Humphrey S.E.
        The Work Design Quesionnaire (WDQ): developing and validating a comprehensive measure for assessing job design and the nature of work.
        J Appl Psychol. 2006; 91: 1321-1339