“It’s Hard When People Try and Get Their Kids Away From Cole”: A Family’s Experiences of (In)dignity in Leisure Settings

in Adapted Physical Activity Quarterly
View More View Less
  • 1 University of Alberta
Restricted access

Purchase Article

USD  $24.95

Student 1 year online subscription

USD  $64.00

1 year online subscription

USD  $86.00

Student 2 year online subscription

USD  $122.00

2 year online subscription

USD  $162.00

The indignities imposed by the words and actions of strangers in public recreation facilities can deter families with children experiencing disability from using these spaces. An interpretative phenomenological analysis case study was conducted to gain an understanding of how a young family with a child with autism experiences dignity during family leisure. Three generations (parents, grandmother, and great grandmother) participated in audio-recorded semistructured and conversational interviews. The interviews, thematically analyzed and interpreted using the conceptual framework of relational ethics, depicted the family’s experiences of dignity: (a) living under a microscope; (b) “screw your microscope, we’re going anyway”; (c) emerging stories of belonging; and (d) retreating, feeling overlooked, and lamenting the future. The family members experienced both dignity-affirming and dignity-removing interactions during community family leisure. Dignity was cyclically maintained, temporarily lost, and regained again as family members (re)formulated perceptions of self-respect, rejected stereotypes, and built relationships.

The authors are with the University of Alberta, Edmonton, AB, Canada.

Boyd (boyd@ualberta.ca) is corresponding author.
  • Bailey, C.A. (2017). A guide to qualitative field research. Thousand Oaks, CA: Sage.

  • Baker-Ericzn, M.J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities, 30 , 194204. doi:10.2511/rpsd.30.4.194

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Baxter, P., & Jack, S. (2008). Qualitative case study methodology: Study design and implementation for novice researchers. Qualitative Report, 13 , 544559. Retrieved from http://nsuworks.nova.edu/tqr/vol13/iss4/2

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

  • D’Astous, V., Wright, S.D., Wright, C.A., & Diener, M.L. (2013). Grandparents of grandchildren with autism spectrum disorders: Influences on engagement. Journal of Intergenerational Relationships, 11 , 134147. doi:10.1080/15350770.2013.782744

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Davis, N.O., & Carter, A.S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38 , 12781291. PubMed ID: 18240012 doi:10.1007/s10803-007-0512-z

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Fenton, E., & Mitchell, T. (2002). Growing old with dignity: A concept analysis. Nursing Older People, 14 , 1921. PubMed ID: 12094515 doi:10.7748/nop2002.06.14.4.19.c2212

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Fisher, M.H., Corr, C., & Morin, L. (2016). Victimization of individuals with intellectual and developmental disabilities across the lifespan. International Review of Research in Developmental Disabilities, 51 , 233280. doi:10.1016/bs.irrdd.2016.08.001

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Gallagher, A. (2004). Dignity and respect for dignity—Two key health professional values: Implications for nursing practice. Nursing Ethics, 11 , 587599. PubMed ID: 15597939 doi:10.1191/0969733004ne744oa

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Goodwin, D.L., Johnston, K., & Causgrove Dunn, J. (2014). Thinking ethically about inclusive recreational sport: A narrative of lost dignity. Sport, Ethics and Philosophy, 8 , 1631. doi:10.1080/17511321.2014.891644

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Guba, E.G., & Lincoln, Y.S. (1994). Competing paradigms in qualitative research. In N.K. Denzin & Y.S. Lincoln (Eds.), Handbook of qualitative research (pp. 105117). Thousand Oaks, CA: Sage.

    • Search Google Scholar
    • Export Citation
  • Harris, S.L., Handleman, J.S., & Palmer, C. (1985). Parents and grandparents view the autistic child. Journal of Autism and Developmental Disorders, 15 , 127137. PubMed ID: 3997741 doi:10.1007/bf01531599

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Hillman, J. (2007). Grandparents of children with autism: A review with recommendations for education, practice, and policy. Educational Gerontology, 33 , 513527. doi:10.1080/03601270701328425

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Hodge, C., Bocarro, J.N., Henderson, K.A., Zabriskie, R., Parcel, T.L., & Kanters, M.A. (2015). Family leisure. Journal of Leisure Research, 47 , 577600. doi:10.18666/jlr-2015-v47-i5-5705 Retrieved from http://eds.a.ebscohost.com/eds/pdfviewer/pdfviewer?sid=b3ed0b74-56fb-4535-8550-15f9c99102e9%40sessionmgr4003&vid=2&hid=4103

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Hoffman, B. (2002). Respect for patients’ dignity in primary health care: A critical appraisal. Scandinavian Journal of Primary Health Care, 20 , 8891. doi:10.1080/02813430215555

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Ilias, K., Liaw, J.H.J., Cornish, K., Park, M.S.A., & Golden, K.J. (2016). Wellbeing of mothers of children with “AUTISM” in Malaysia: An interpretative phenomenological analysis study. Journal of Intellectual & Developmental Disability, 42 , 116. doi:10.3109/13668250.2016.1196657

    • Search Google Scholar
    • Export Citation
  • Irvine, A., Drew, P., & Sainsbury, R. (2012). ‘Am I not answering your questions properly?’ Clarification, adequacy and responsiveness in semi-structured telephone and face-to-face interviews. Qualitative Research, 13 , 87106. doi:10.1177/1468794112439086

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Johnston, K.R., Goodwin, D.L., & Leo, J. (2015). Understanding dignity: Experiences of impairment in an exercise facility. Adapted Physical Activity Quarterly, 32 , 106124. PubMed ID: 25799592 doi:10.1123/APAQ.2014-0124

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Langdridge, D. (2007). Phenomenological psychology: Theory, research and method. New York, NY: Pearson Education.

  • Larkin, M., & Thompson, A. (2012). Interpretative phenomenological analysis. In A.R. Thompson & D. Harper (Eds.), Qualitative research methods in mental health and psychotherapy: A guide for students and practitioners (pp. 99116). Chichester, UK: Wiley-Blackwell.

    • Search Google Scholar
    • Export Citation
  • Larkin, M., Watts, S., & Clifton, E. (2006). Giving voice and making sense in interpretative phenomenological analysis. Qualitative Research in Psychology, 3(2), 102120. doi:10.1191/1478088706qp062oa

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Mactavish, J.B., & Schleien, S.J. (1998). Playing together growing together: Parents’ perspectives on the benefits of family recreation in families that include children with a developmental disability. Therapeutic Recreation Journal, 32 , 207230. Retrieved from http://libres.uncg.edu/ir/uncg/f/Schleien_S_Playing_1998.pdf

    • Search Google Scholar
    • Export Citation
  • Mains, E.D. (1994). Concept clarification in professional practice—dignity. Journal of Advanced Nursing, 19 , 947953. doi:10.1111/j.1365-2648.1994.tb01173.x

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Mann, J. (1998). Dignity and health: The UDHR’s revolutionary first article. Health and Human Rights, 3 , 3038. doi:10.2307/4065297 Retrieved from http://www.jstor.org/stable/4065297?origin=crossref

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Markula, P., & Silk, M. (2011). Qualitative research for physical culture. Hampshire, UK: Palgrave Macmillan.

  • Marshall, V., & Long, B.C. (2010). Coping processes as revealed in the stories of mothers of children with autism. Qualitative Health Research, 20 , 105116. PubMed ID: 20019351 doi:10.1177/1049732309348367

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Martins, C.D., Walker, S.P., & Fouché, P. (2013). Fathering a child with autism spectrum disorder: An interpretative phenomenological analysis. Indo-Pacific Journal of Phenomenology, 13 , 119. doi:10.2989/ipjp.2013.13.1.5.1171

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Mayan, M.J. (2009). Essentials of qualitative inquiry. Walnut Creek, CA: Left Coach Press.

  • Meirsschaut, M., Roeyers, H., & Warreyn, P. (2010). Parenting in families with a child with autism spectrum disorder and a typically developing child: Mothers’ experiences and cognitions. Research in Autism Spectrum Disorders, 4 , 661669. doi:10.1016/j.rasd.2010.01.002

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Munroe, K., Hammond, L., & Cole, S. (2016). The experiences of African immigrant mothers living in the United Kingdom with a child diagnosed with an autism spectrum disorder: An interpretive phenomenological analysis. Disability & Society, 31 , 798819. doi:10.1080/09687599.2016.1200015

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Nordenfelt, L. (2004). The varieties of dignity. Health Care Analysis, 12 , 6981. PubMed ID: 15487812 doi:10.1023/b:hcan.0000041183.78435.4b

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Patton, M.Q. (2002). Qualitative research & evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.

  • Pearce, K. (2010). Tell me a story about your child: A narrative exploration of disability in recreation (Master’s thesis). Retrieved from https://uwspace.uwaterloo.ca/bitstream/handle/10012/5148/Pearce?sequence=1

    • Search Google Scholar
    • Export Citation
  • Phetrasuwan, S., & Miles, M. (2009). Parenting stress in mothers of children with autism spectrum disorders. Journal for Specialists in Pediatric Nursing, 14 , 157165. PubMed ID: 19614824 doi:10.1111/j.1744-6155.2009.00188.x

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Poff, R.A., Zabriskie, R.B., & Townsend, J.A. (2010). Modeling family leisure and related family constructs: A national study of U.S. parent and youth perspectives. Journal of Leisure Research, 42 , 365391.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Ryan, S. (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, 3 , 291305. doi:10.1080/14733280500352920

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Sandelowski, M. (1993). Theory unmasked: The uses and guises of theory in qualitative research. Research in Nursing & Health, 16 , 213218. PubMed ID: 8497673

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Schroeder, J.H., Cappadocia, M.C., Bebko, J.M., Pepler, D.J., & Weiss, J.A. (2014). Shedding light on a pervasive problem: A review of research on bullying experiences among children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44 , 15201534. PubMed ID: 24464616 doi:10.1007/s10803-013-2011-8

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Scully, J.L. (2010). Hidden labor: Disabled/nondisabled encounters, agency, and autonomy. International Journal of Feminist Approaches to Bioethics, 3 , 2542. doi:10.2979/fab.2010.3.2.25

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Shannon, D.W. (2007). Six degrees of dignity: Disability in an age of freedom. Ottawa, Canada: Creative Bound International.

  • Shaw, E. (2011). Relational ethics and moral imagination in contemporary systemic practice. The Australian and New Zealand Journal of Family Therapy, 32 , 114. doi:10.1375/anft.32.1.1

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Shotton, L., & Seedhouse, D. (1998). Practical dignity in caring. Nursing Ethics, 5 , 246255. PubMed ID: 9653222 doi:10.1177/096973309800500308

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Shotwell, A. (2012). Open normativities: Gender, disability, and collective political change. Signs: Journal of Women in Culture and Society, 37 , 9891016. doi:10.1086/664475

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Smith, J.A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis. London, UK: Sage.

  • Smith, K.M., Freeman, P.A., & Zabriskie, R.B. (2009). An examination of family communication within the core and balance model of family leisure functioning. Family Relations, 58 , 7990. doi:10.1111/j.1741-3729.2008.00536.x

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Stake, R.E. (2000). Case study. In N.K. Denzin & Y.S. Lincoln (Eds.), Handbook of qualitative research (pp. 435454). Thousand Oaks, CA: Sage.

    • Search Google Scholar
    • Export Citation
  • Stake, R.E. (2005). Multiple case study analysis. New York, NY: Guilford Press.

  • Stevens, A., Coon, D., Wisniewski, S., Vance, D., Arguelles, S., Belle, S., … Haley, W. (2004). Measurement of leisure time satisfaction in family caregivers. Aging & Mental Health, 8 , 450459. PubMed ID: 15511743 doi:10.1080/13607860410001709737

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Townsend, J.A., & Zabriskie, R.B. (2010). Family leisure among families with a child in mental health treatment: Therapeutic recreation implications. Therapeutic Recreation Journal, 44(1), 1134. Retrieved from http://login.ezproxy.library.ualberta.ca/login?url=https://search-proquest-com.login.ezproxy.library.ualberta.ca/docview/347864389?accountid=14474

    • Search Google Scholar
    • Export Citation
  • Trute, B. (2003). Grandparents of children with developmental disabilities: Intergenerational support and family well-being. Families in Society: The Journal of Contemporary Social Services, 84 , 119126. doi:10.1606/1044-3894.87

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Woodgate, R.L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18 , 10751083. PubMed ID: 18650563 doi:10.1177/1049732308320112

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Woodgate, R.L., Edwards, M., & Ripat, J. (2012). How families of children with complex care needs participate in everyday life. Social Science & Medicine, 75 , 19121920. PubMed ID: 22901669 doi:10.1016/j.socscimed.2012.07.037

    • Crossref
    • Search Google Scholar
    • Export Citation
  • Wu, H.L., & Volker, D.L. (2009). The use of theory in qualitative approaches to research: Application in end of life studies. Journal of Advanced Learning, 65 , 27192732.

    • Search Google Scholar
    • Export Citation
  • Yardley, L. (2000). Dilemmas in qualitative health research. Psychology & Health, 15 , 215228. doi:10.1080/08870440008400302

  • Yin, R.K. (2009). Case study research: Design and methods (4th ed.). Los Angeles, CA: Sage.

  • Zabriskie, R.B., & McCormick, B.P. (2003). Parent and child perspectives of family leisure involvement and satisfaction with family life. Journal of Leisure Research, 35 , 163189. doi:10.1080/00222216.2003.11949989 Retrieved from http://search.proquest.com/docview/201173007/fulltextPDF?accountid=14474

    • Crossref
    • Search Google Scholar
    • Export Citation
All Time Past Year Past 30 Days
Abstract Views 313 233 15
Full Text Views 44 27 5
PDF Downloads 28 20 2