Physical Activity for Disabled Youth: Hidden Parental Labor

in Adapted Physical Activity Quarterly
Restricted access

Purchase Article

USD $24.95

Student 1 year subscription

USD $63.00

1 year subscription

USD $84.00

Student 2 year subscription

USD $119.00

2 year subscription

USD $156.00

Locating suitable, inclusive community physical activity programs for disabled children can be challenging for parents. The aim of this study was to uncover everyday hidden labor experienced by parents, as they sought inclusive physical activity opportunities for their children. Focus group interviews with eight families of youth aged 13–19 years were completed using an interpretative phenomenological case study research approach. Four themes, interpreted through the framework of relational ethics, captured their experiences: (a) inclusion is immensely effortful; (b) judged by their impairments, not their possibilities; (c) ongoing education needed to open doors and sustain participation; and (d) the guilt of staying home. Reliance on hidden parental labor highlighted an exclusion agenda in community, accentuated by ableist belief systems.

Goodwin and Ebert are with the Faculty of Physical Education and Recreation, University of Alberta, Edmonton, AB, Canada.

Goodwin (donna.goodwin@ualberta.ca) is corresponding author.
Adapted Physical Activity Quarterly
Article Sections
References
  • AitchisonC. (2009). Exclusive discourses: Leisure studies and disability. Leisure Studies 28375386. doi:10.1080/02614360903125096

  • AllisonM.T. (2000). Leisure, diversity and social justice. Journal of Leisure Research 3226. Retrieved from http://people.tamu.edu/~dscott/340/U1%20Readings/1%20-%202000%20Allison.pdf

    • Crossref
    • Search Google Scholar
    • Export Citation
  • AshforthB.E. & HumphreyR.H. (1993). Emotional labor in service delivery roles: The influence of identity. Academy of Management Review 1888115. doi:10.5465/AMR.1993.3997508

    • Crossref
    • Search Google Scholar
    • Export Citation
  • AustinW. (2007). The ethics of everyday practice: Healthcare environment as moral communities. Advances in Nursing Science 308188. PubMed doi:10.1097/00012272-200701000-00009

    • Crossref
    • Search Google Scholar
    • Export Citation
  • BeetsM.W.WallnerM. & BeighleA. (2010). Defining standards and policies for promoting physical activity in afterschool programs. Journal of School Health 80411417. PubMed doi:10.1111/j.1746-1561.2010.00521.x

    • Crossref
    • Search Google Scholar
    • Export Citation
  • BennerP. (2004). Relational ethics of comfort, touch, and solace—Endangered arts? American Journal of Critical Care 13346349. Retrieved from http://ajcc.aacnjournals.org/content/13/4/346.short

    • Search Google Scholar
    • Export Citation
  • BergumV. & DossetorJ.B. (2005). Relational ethics: The full meaning of respect. Hagerstown, MD: University Publishing Group.

  • BlackmoreJ. (1996). Doing ‘emotional labor’ in the education market place: Stories from the field of women in management. Discourse: Studies in the Cultural Politics of Education 17337349. doi:10.1080/0159630960170304

    • Search Google Scholar
    • Export Citation
  • BoernerK.SchulzR. & HorowitzA. (2004). Positive aspects of care giving and adaptation to bereavement. Psychology of Aging 19668675. doi:10.1037/0882-7974.19.4.668

    • Crossref
    • Search Google Scholar
    • Export Citation
  • BogdanR.C. & BiklenS.K. (2003). Qualitative research for education: An introduction to theory and methods. Needham Heights, MA: Allyn & Bacon.

    • Search Google Scholar
    • Export Citation
  • BriscoeC.L. & AraiS. (2015). Relational reflective process as an act of compassionate pedagogy in therapeutic recreation. Leisure/Loisir 39193214. doi:10.1080/14927713.2015.1086582

    • Crossref
    • Search Google Scholar
    • Export Citation
  • ButtimerJ. & TierneyE. (2005). Patterns of leisure participant among adolescents with a mild intellectual disability. Journal of Intellectual Disabilities 92542. PubMed doi:10.1177/1744629505049728

    • Crossref
    • Search Google Scholar
    • Export Citation
  • CampbellF.K. (2001). Inciting legal fictions: ‘Disability’s’ date with ontology and the ableist body of the law. Griffith Law Review 104262. Retrieved from https://research-repository.griffith.edu.au/bitstream/handle/10072/3714/17563_1.pdf?sequence=1&isAllowed=yhttps://research

    • Search Google Scholar
    • Export Citation
  • CampbellF.K. (2008). Exploring internalized ableism using critical race theory. Disability & Society 23151162. doi:10.1080/09687590701841190

    • Crossref
    • Search Google Scholar
    • Export Citation
  • CampbellF.K. (2009). Contours of ableism: The production of disability and abledness. New York, NY: Palgrave.

  • CancianF. & OlikerS. (2000). Caring and gender. New York, NY: AltaMira Press.

  • DevineM. & ParrM. (2008). Come on in, but not too far: Social capital in an inclusive leisure setting. Leisure Sciences 30391408. doi:10.1080/01490400802353083

    • Crossref
    • Search Google Scholar
    • Export Citation
  • DowlingF. (2015). Parents’ narratives of physically educating their children at the interplay of home and school. Qualitative Research in Sport Exercise and Health 7776792. doi:10.1080/2159676X.2015.1026384

    • Crossref
    • Search Google Scholar
    • Export Citation
  • FrenchD. & HainsworthJ. (2001). ‘There aren’t any buses and the swimming pool is always cold!’ Obstacles and opportunities in the provision of sport for disabled people. Managing Leisure 63549. doi:10.1080/13606710010026359

    • Crossref
    • Search Google Scholar
    • Export Citation
  • GoodleyD. & Runswick-ColeK. (2010). Emancipating play: Dis/abled children, development and deconstruction. Disability & Society 25499512. doi:10.1080/09687591003755914

    • Crossref
    • Search Google Scholar
    • Export Citation
  • GoodleyD. & Runswick-ColeK. (2011). The violence of disablism. Sociology of Health & Illness 33602617. PubMed doi:10.1111/j.1467-9566.2010.01302.x

    • Crossref
    • Search Google Scholar
    • Export Citation
  • GoodwinD.L. (2008). Self-regulated dependency: Ethical reflections on interdependence and help in adapted physical activity. Sports Ethics and Philosophy 2172184. doi:10.1080/17511320802223477

    • Crossref
    • Search Google Scholar
    • Export Citation
  • GoodwinD.L.FitzpatrickD.ThurmeierR. & HallC. (2006). The decision to join Special Olympics: Parents’ perspectives. Adapted Physical Activity Quarterly 23163183. doi:10.1123/apaq.23.2.163

    • Crossref
    • Search Google Scholar
    • Export Citation
  • GoodwinD.L. & Rossow-KimballB. (2012). Thinking ethically about professional practice in adapted physical activity. Adapted Physical Activity Quarterly 29295309. PubMed doi:10.1123/apaq.29.4.295

    • Crossref
    • Search Google Scholar
    • Export Citation
  • GreenS.E. (2007). We’re tired, not sad: Benefits and burdens of mothering a child with a disability. Social Science & Medicine 64150163. PubMed doi:10.1016/j.socscimed.2006.08.025

    • Crossref
    • Search Google Scholar
    • Export Citation
  • GreenbaumT. (1998). The handbook for focus group research. Thousand Oaks, CA: Sage.

  • GubaE.G. & LincolnY.S. (1994). Competing paradigms in qualitative research. In N.K. Denzin & Y.S. Lincoln (Eds.) Handbook of qualitative research (4th ed. pp. 105117). Thousand Oaks, CA: Sage.

    • Search Google Scholar
    • Export Citation
  • HeimanT. (2002). Parents of children with disabilities: Resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities 14159171. doi:10.1023/A:1015219514621

    • Crossref
    • Search Google Scholar
    • Export Citation
  • HochschildR. (1983). The managed heart: Commercialization of human feeling. Los Angeles, CA: University of California Press.

  • HodgeN. & Runswick-ColeR. (2013). ‘They never pass me the ball’: Exposing ableism through the leisure experiences of disabled children, young people and their families. Children’s Geographies 11311325. PubMed doi:10.1080/14733285.2013.812275

    • Crossref
    • Search Google Scholar
    • Export Citation
  • HomeA. (2002). Challenging hidden oppression: Mothers caring for children with disabilities. Critical Social Work 316. Retrieved from http://www1.uwindsor.ca/criticalsocialwork/challenging-hidden-oppression-mothers-caring-for-children-with-disabilities

    • Search Google Scholar
    • Export Citation
  • HumphreyR.PollackJ.M. & HawverT. (2008). Leading with emotional labor. Journal of Managerial Psychology 23151168. doi:10.1108/02683940810850790

    • Crossref
    • Search Google Scholar
    • Export Citation
  • JohnsonJ.L.BottorffJ.L.BrowneA.J.GrewalS.HiltonB.A. & ClarkeH. (2004). Othering and being othered in the context of health care services. Health Communication 16255271. doi:10.1207/S15327027HC1602_7

    • Crossref
    • Search Google Scholar
    • Export Citation
  • JonesD.B. (2003). Denied from a lot of places, barriers to participation in community recreation programs encountered by children with disabilities: Perspectives of parents. Leisure 284969. doi:10.1080/14927713.2003.9649939

    • Crossref
    • Search Google Scholar
    • Export Citation
  • KehnM. & KrollT. (2009). Staying physically active after spinal cord injury: A qualitative exploration of barriers and facilitators to exercise participation. Biomed Central Public Health 9168179. PubMed doi:10.1186/1471-2458-9-168

    • Crossref
    • Search Google Scholar
    • Export Citation
  • KingG.McDougallJ.DeWittD.PetrenchikT.HurleyP. & LawM. (2009). Predictors of change over time in the activity participation of children and youth with physical disabilities. Children’s Health Care 38321351. PubMed doi:10.1080/02739610903237352

    • Crossref
    • Search Google Scholar
    • Export Citation
  • KnightA.PetrieP.ZuurmondM. & PottsP. (2009). ‘Mingling together’: Promoting the social inclusion of disabled children and young people during the school holidays. Child & Family Social Work 141524. doi:10.1111/j.1365-2206.2008.00577.x

    • Crossref
    • Search Google Scholar
    • Export Citation
  • KnowlesA.M.KirkA.F. & HughesA.R. (2015). Parents’ perceptions of their children’s sedentary behaviour. Qualitative Research in Sport Exercise and Health 7449465. doi:10.1080/2159676X.2015.1008026

    • Crossref
    • Search Google Scholar
    • Export Citation
  • KohlH.W.III & CookH.D. (Eds.). (2013). Educating the student body: Taking physical activity and physical education to school. Washington, DC: National Academies Press.

    • Search Google Scholar
    • Export Citation
  • KruegerR.A. & CaseyM.A. (2000). Focus groups: A practical guide for applied research (3rd ed.). Thousand Oaks, CA: Sage.

  • LyonsL. (2013). Transformed understanding or enlightened ableism? The gap between policy and practice for children with disabilities in Aotearoa New Zealand. International Journal of Early Childhood 45237249. doi:10.1007/s13158-013-0086-1

    • Crossref
    • Search Google Scholar
    • Export Citation
  • MacbethJ.L. (2010). Reflecting on disability research in sport and leisure settings. Leisure Studies 29477485. doi:10.1080/02614367.2010.523834

    • Crossref
    • Search Google Scholar
    • Export Citation
  • MacDonaldC. (2002). Relational professional autonomy. Cambridge Quarterly of Healthcare Ethics 11282289. PubMed doi:10.1017/S0963180102113090

    • Crossref
    • Search Google Scholar
    • Export Citation
  • MackenzieC. & ScullyJ. (2007). Moral imagination, disability and embodiment. Journal of Applied Philosophy 24335351. doi:10.1111/j.1468-5930.2007.00388.x

    • Crossref
    • Search Google Scholar
    • Export Citation
  • MarcellusL. (2005). The ethics of relation: Public health nurse and child protection clients. Journal of Advanced Nursing 51414420. PubMed doi:10.1111/j.1365-2648.2005.03512.x

    • Crossref
    • Search Google Scholar
    • Export Citation
  • MarkulaP. & SilkM. (2011). Qualitative research for physical culture. Basingstoke, UK: Macmillan.

  • MartinJ.J. (2013). Benefits and barriers to physical activity for individuals with disabilities: A social-relational model of disability perspective. Disability and Rehabilitation 3520302037. PubMed doi:10.3109/09638288.2013.802377

    • Crossref
    • Search Google Scholar
    • Export Citation
  • MayanM. (2009). Essentials of qualitative inquiry. Walnut Creek, CA: Left Coast Press.

  • McConachieH.ColverA.F.ForsythR.J.JarvisS.N. & ParkinsonK.N. (2006). Participation of disabled children: How should it be characterized and measured? Disability and Rehabilitation 2811571164. PubMed doi:10.1080/09638280500534507

    • Crossref
    • Search Google Scholar
    • Export Citation
  • McLaughlinJ.GoodleyD.ClaveringE. & FisherP. (2008). Families raising disabled children: Enabling care and social justice. New York, NY: Palgrave.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • MitchellD.T. & SnyderS.L. (2015). The biopolitics of disability: Neoliberalism ablenationalism and peripheral embodiment. Ann Arbor, MI: University of Michigan Press.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • MorganD.L. (1997). Focus groups as qualitative research. London, UK: Sage.

  • MulliganH.F.HaleL.A.WhiteheadL. & BaxterG.D. (2012). Barriers to physical activity for people with long-term neurological conditions: A review study. Adapted Physical Activity Quarterly 29243265. PubMed doi:10.1123/apaq.29.3.243

    • Crossref
    • Search Google Scholar
    • Export Citation
  • NaborsL.WilloughbyS.LeffS. & McMenaminS. (2001). Promoting inclusion for young children with special needs on playgrounds. Journal of Developmental and Physical Disabilities 13170190. doi:10.1023/A:1016665409366

    • Crossref
    • Search Google Scholar
    • Export Citation
  • NelsonL. (1995). Resistance and insubordination. Hypatia 102340. doi:10.1111/j.1527-2001.1995.tb01367.x

  • ObrusnikovaI. & MiccinelloD.L. (2012). Parent perceptions of factors influencing after- school physical activity of children with autism spectrum disorders. Adapted Physical Activity Quarterly 296380. PubMed doi:10.1123/apaq.29.1.63

    • Crossref
    • Search Google Scholar
    • Export Citation
  • OliverM. (1996). Understanding disability from theory to practice. New York, NY: Palgrave.

  • ParkynH. & CoveneyJ. (2013). An exploration of the value of social interaction in a boys’ group for adolescents with muscular dystrophy. Child: Care Health and Development 398189. PubMed doi:10.1111/j.1365-2214.2011.01353.x

    • Search Google Scholar
    • Export Citation
  • PeersD.Spencer-CavaliereN. & EalesL. (2014). Say what you mean: Rethinking disability language. Adapted Physical Activity Quarterly 31265282. PubMed doi:10.1123/apaq.2013-0091

    • Crossref
    • Search Google Scholar
    • Export Citation
  • PhillipsE.MontagueJ. & ArcherS. (2016). Worlds within worlds: A strategy for using interpretative phenomenological analysis with focus groups. Qualitative Research in Psychology 13289302. doi:10.1080/14780887.2016.1205692

    • Crossref
    • Search Google Scholar
    • Export Citation
  • PitchfordA.SiebertE.HammJ. & YunJ. (2016). Parental perceptions of physical activity benefits for youth with developmental disabilities. American Journal on Intellectual and Developmental Disabilities 1212532. PubMed doi:10.1352/1944-7558-121.1.25

    • Crossref
    • Search Google Scholar
    • Export Citation
  • ReidK.FlowersP. & LarkinM. (2005). Exploring lived experience. The Psychologist 182023. Retrieved from https://www.researchgate.net/profile/Paul_Flowers/publication/221670347_Exploring_lived_Experience/links/0922b4f57ab3ca3a29000000/Exploring-lived-Experience.pdf

    • Search Google Scholar
    • Export Citation
  • RimmerJ.H. (2005). The conspicuous absence of people with disabilities in public fitness and recreation facilities: Lack of interest or lack of access? American Journal of Health Promotion 19327329. doi:10.4278/0890-1171-19.5.327

    • Crossref
    • Search Google Scholar
    • Export Citation
  • RimmerJ.H. & RowlandJ.L. (2008). Physical activity for youth with disabilities: A critical need in an underserved population. Developmental Neurorehabilitation 11141148. PubMed doi:10.1080/17518420701688649

    • Crossref
    • Search Google Scholar
    • Export Citation
  • RyanS. (2005). People don’t do odd, do they? Mothers making sense of the reactions of others towards their learning disabled children in public places. Children’s Geographies 3291305. PubMed doi:10.1080/14733280500352920

    • Crossref
    • Search Google Scholar
    • Export Citation
  • ScullyJ.L. (2010). Hidden labor: Disabled/nondisabled encounters, agency, and autonomy. International Journal of Feminist Approaches to Bioethics 32542. doi:10.3138/ijfab.3.2.25

    • Crossref
    • Search Google Scholar
    • Export Citation
  • ShawE. (2011). Relational ethics and moral imagination in contemporary systemic practice. Australian & New Zealand Journal of Family Therapy 32114. doi:10.1375/anft.32.1.1

    • Crossref
    • Search Google Scholar
    • Export Citation
  • ShearnJ. & ToddS. (2000). Maternal employment and family responsibilities: The perspective of mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 13109131. doi:10.1046/j.1468-3148.2000.00021.x

    • Crossref
    • Search Google Scholar
    • Export Citation
  • SilvaC.F. & HoweP.D. (2012). Difference, adapted physical activity and human development: Potential contribution of capabilities approach. Adapted Physical Activity Quarterly 292543. PubMed doi:10.1123/apaq.29.1.25

    • Crossref
    • Search Google Scholar
    • Export Citation
  • SmithB. & McGannonK.R. (2017). Developing rigor in qualitative research: Problems and opportunities within sport and exercise psychology. International Review of Sport and Exercise Psychology. doi:10.1080/1750984X.2017.131173457

    • Search Google Scholar
    • Export Citation
  • SmithJ.A. (2004). Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research in psychology. Qualitative Research in Psychology 13954.

    • Search Google Scholar
    • Export Citation
  • SmithJ.A.FlowersP. & LarkinM. (2009). Interpretative phenomenological analysis: Theory method and research. Thousand Oaks, CA: Sage.

    • Search Google Scholar
    • Export Citation
  • SmithJ.A. & OsbornM. (2008). Interpretative phenomenological analysis. In J.A. Smith (Ed.) Qualitative psychology: A practical guide to methods (pp. 5380). Thousand Oaks, CA: Sage.

    • Search Google Scholar
    • Export Citation
  • SpradleyJ.P. (1979). The ethnographic interview. New York, NY: Harcourt Brace Jovanovich College.

  • StakeR.E. (2006). Multiple case study analysis. New York, NY: Guilford Press.

  • ThomasC. (2004). How is disability understood? An examination of sociological approaches. Disability & Society 19569583. doi:10.1080/0968759042000252506

    • Crossref
    • Search Google Scholar
    • Export Citation
  • ThompsonD. & EmiraM. (2011). ‘They say every child matters, but they don’t’: An investigation into parental and carer perceptions of access to leisure facilities and respite care for children and young people with autistic spectrum disorder (ASD) or attention deficit, hyperactivity disorder. Disability & Society 266578. doi:10.1080/09687599.2011.529667

    • Search Google Scholar
    • Export Citation
  • TomkinsL. & EatoughV. (2010). Reflecting on the use of IPA with focus groups: Pitfalls and potentials. Qualitative Research in Psychology 7244262. doi:10.1080/14780880903121491

    • Crossref
    • Search Google Scholar
    • Export Citation
  • TsaiE. & FungL. (2009). Parents’ experiences and decisions on inclusive sport participation of their children with intellectual disabilities. Adapted Physical Activity Quarterly 26151171. PubMed doi:10.1123/apaq.26.2.151

    • Crossref
    • Search Google Scholar
    • Export Citation
  • UpdaleE. (2008). The ethics of the everyday: Problems professors are too posh to ponder. Clinical Ethics 33436. doi:10.1258/ce.2007.007053

    • Crossref
    • Search Google Scholar
    • Export Citation
  • van ManenM. (1997). Researching lived experience: Human science for an action sensitive pedagogy. London, Canada: The Althouse Press.

  • WatsonC. (2009). The ‘impossible vanity’: Uses and abuses of empathy in qualitative inquiry. Qualitative Research 9105117. doi:10.1177/1468794108098033

    • Crossref
    • Search Google Scholar
    • Export Citation
  • WiartL.DarrahJ.KellyM. & LeggD. (2015). Community fitness programs: What is available for children and youth with motor disabilities and what do parents want? Physical & Occupational Therapy in Pediatrics 357387. PubMed doi:10.3109/01942638.2014.990550

    • Crossref
    • Search Google Scholar
    • Export Citation
  • WithersA.J. (2012). Disability politics and theory. Black Point, Canada: Fernwood Publishing.

  • WoodgateR.L.EdwardsM. & RipatJ. (2012). How families of children with complex care needs participate in everyday life. Social Science & Medicine 7519121920. PubMed doi:10.1016/j.socscimed.2012.07.037

    • Crossref
    • Search Google Scholar
    • Export Citation
  • WuH. & VolkerD. (2009). The use of theory in qualitative approaches to research: Application in end-of-life studies. Journal of Advanced Nursing 6527192732. PubMed doi:10.1111/j.1365-2648.2009.05157.x

    • Crossref
    • Search Google Scholar
    • Export Citation
  • YardleyL. (2000). Dilemmas in qualitative health research. Psychology & Health 15215228. doi:10.1080/08870440008400302

  • YinR.K. (2014). Case study research: Design and methods. Thousand Oaks, CA: Sage.

  • ZitomerM. & GoodwinD.L. (2014). Gauging the quality of qualitative research in adapted physical activity. Adapted Physical Activity Quarterly 31193218. doi:10.1123/apaq.2013-0084

    • Crossref
    • Search Google Scholar
    • Export Citation
Article Metrics
All Time Past Year Past 30 Days
Abstract Views 41 41 4
Full Text Views 6 6 1
PDF Downloads 2 2 0
Altmetric Badge
PubMed
Google Scholar