Successfully Negotiating Life Challenges: Learnings From Adults With Cerebral Palsy

Abstract

Despite facing multidimensional inequalities, some adults with cerebral palsy achieve positive social outcomes (e.g., independent living, employment, and romantic relationships). We interviewed 23 adults (aged 23–47 years) about how they successfully negotiated the challenges of adulthood. Common to all life situations was doing what others (people without cerebral palsy) do. Origins of success lay in their formative experiences (e.g., typical parental expectations with commensurate support and acceptance and supported involvement in school life). Their present functioning (e.g., positive self-concept, well-honed social skills, and physical fitness) combined with present contexts (e.g., expectations of involvement in adult activities and accessible and accommodating environments) enabled them to find ways of negotiating challenges. Finding a way included drawing on knowledge and skills, gravitating toward those who are comfortable with difference, maintaining function, and using natural and paid supports. The findings suggest multiple avenues for supporting people with cerebral palsy to achieve positive social outcomes.

Keywords

cerebral palsy adults participation qualitative interpretive description Australia

Get full access to this article

View all access options for this article.

References

Alriksson-Schmidt

Hagglund

Rodby-Bousquet

Westbom

(2014). Follow-up of individuals with cerebral palsy through the transition years and description of adult life: The Swedish experience. Journal of Pediatric Rehabilitation Medicine, 7(1), 53–61. https://doi.org/10.3233/prm-140273

Andrade

P. M.

Haase

V. G.

Oliveira-Ferreira

(2012). An ICF-based approach for cerebral palsy from a biopsychosocial perspective. Developmental Neurorehabilitation, 15(6), 391–400. https://doi.org/10.3109/17518423.2012.700650

Bergmark

Westgren

Asaba

(2011). Returning to work after spinal cord injury: Exploring young adults’ early expectations and experience. Disability & Rehabilitation, 33(25–26), 2553–2558. https://doi.org/10.3109/09638288.2011.579224

Boucher

Dumas

Maltais

D. B.

Richards

C. L.

(2010). The influence of selected personal and environmental factors on leisure activities in adults with cerebral palsy. Disability & Rehabilitation, 32(16), 1328–1338. https://doi.org/10.3109/09638280903514713

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Carroll

Chan

Thorpe

Levin

Bagatell

(2021). A life course perspective on growing older with cerebral palsy. Qualitative Health Research, 31(4), 654–664. https://doi.org/10.1177/1049732320971247

Crenshaw

(1989). Demarginalizing the intersection of race and sex: A black feminist critiquie of antidiscrimination doctrine, feminist theory adn antiracist politics. University of Chicago Legal Forum, 1, Article 8. https://doi.org/10.4324/9780429500480-5

Deloitte Access Economics. (2020). The cost of cerebral palsy in Australia in 2018. http://cerebralpalsystrategy.com.au/wp-content/uploads/2020/02/DAE_Cost-of-cerebral-palsy-in-2018_FINAL.pdf

Donkervoort

Roebroeck

Wiegerink

van der Heijden-Maessen

Stam

(2007). Determinants of functioning of adolescents and young adults with cerebral palsy. Disability & Rehabilitation, 29(6), 453–463. https://doi.org/10.1080/09638280600836018

10.

Dune

T. M.

(2013). “You just don’t see us”: The influence of public schema on constructions of sexuality by people with cerebral palsy. World Journal of Social Science, 1(1). https://doi.org/10.5430/wjss.v1n1p1

11.

Frisch

Msall

M. E.

(2013). Health, functioning, and participation of adolescents and adults with cerebral palsy: A review of outcomes research. Developmental Disabilities Research Reviews, 18(1), 84–94. https://doi.org/10.1002/ddrr.1131

12.

Gaskin

C. J.

(2015). On the potential for psychological researchers and psychologists to promote the social inclusion of people with disability: A review. Australian Psychologist, 50(6), 445–454. https://doi.org/10.1111/ap.12128

13.

Gaskin

C. J.

Andersen

M. B.

Morris

(2009). Physical activity in the life of a woman with severe cerebral palsy: Showing competence and being socially connected. Developmental Medicine & Child Neurology, 53(3), 704–710. https://doi.org/10.1080/10349120903102312

14.

Gaskin

C. J.

Andersen

M. B.

Morris

(2010). Sport and physical activity in the life of a man with cerebral palsy: Compensation for disability with psychosocial benefits and costs. Psychology of Sport & Exercise, 11(3), 197–205. https://doi.org/10.1016/j.psychsport.2009.12.003

15.

Gaskin

C. J.

Andersen

M. B.

Morris

(2011). Physical activity and fantasies in the life of an adult with cerebral palsy: The motivator, looking for love. Qualitative Research in Sport, Exercise & Health, 3(2), 238–262. https://doi.org/10.1080/2159676X.2011.572178

16.

Gaskin

C. J.

Andersen

M. B.

Morris

(2012). Physical activity in the life of a woman with cerebral palsy: Physiotherapy, social exclusion, competence, and intimacy. Disability & Society, 27, 205–218. https://doi.org/10.1080/09687599.2011.644931

17.

Goldberg

R. J.

Higgins

E. L.

Raskind

M. H.

Herman

K. L.

(2003). Predictors of success in individuals with learning disabilities: A qualitative analysis of a 20-year longitudinal study. Learning Disabilities Research & Practice, 18(4), 222–236.

18.

Heller

T. S. Y. G.

Rimmer

J. H.

Marks

B. A.

(2002). Determinants of exercise in adults with cerebral palsy. Public Health Nursing, 19(3), 223–231. https://doi.org/10.1046/j.0737-1209.2002.19311.x

19.

Hidecker

M. J. C.

Paneth

Rosenbaum

P. L.

Kent

R. D.

Lillie

Eulenberg

J. B.

Chester

Johnson

Michalsen

Evatt

Taylor

(2011). Developing and validating the communication function classification system for individuals with cerebral palsy. Developmental Medicine & Child Neurology, 53(8), 704–710. https://doi.org/10.1111/j.1469-8749.2011.03996.x

20.

Imms

Granlund

Wilson

P. H.

Steenbergen

Rosenbaum

P. L.

Gordon

A. M.

(2017). Participation, both a means and an end: A conceptual analysis of processes and outcomes in childhood disability. Developmental Medicine & Child Neurology, 59(1), 16–25. https://doi.org/10.1111/dmcn.13237

21.

Jacobson

D. N. O.

Lowing

Hjalmarsson

Tedroff

(2019). Exploring social participation in young adults with cerebral palsy. Journal of Rehabilitation Medicine, 51(3), 167–174. https://doi.org/10.2340/16501977-2517

22.

Kembhavi

Darrah

Payne

Plesuk

(2011). Adults with a diagnosis of cerebral palsy: A mapping review of long-term outcomes. Developmental Medicine & Child Neurology, 53(7), 610–614. https://doi.org/10.1111/j.1469-8749.2011.03914.x

23.

King

G. A.

Cathers

Polgar

J. M.

MacKinnon

Havens

(2000). Success in life for older adolescents with cerebral palsy. Qualitative Health Research, 10(6), 734–749. https://doi.org/10.1177/104973200129118796

24.

Lawrence

Hills

Kline

Weems

Doty

(2016). Effectiveness of exercise on functional mobility in adults with cerebral palsy: A systematic review. Physiotherapy Canada, 68(4), 398–407. https://doi.org/10.3138/ptc.2015-38LHC

25.

Liamputtong

(2019). Qualitative research methods (5th ed.). Oxford University Press.

26.

Lloyd

Gatherer

Kalsy

(2006). Conducting qualitative interview research with people with expressive language difficulties. Qualitative Health Research, 16(10), 1386–1404. https://doi.org/10.1177/1049732306293846

27.

Magill-Evans

Darrah

Pain

Adkins

Kratochvil

(2001). Are families with adolescents and young adults with cerebral palsy the same as other families? Developmental Medicine & Child Neurology, 43(7), 466–472. https://doi.org/10.1017/s0012162201000858

28.

Maxwell

Alves

Granlund

(2012). Participation and environmental aspects in education and the ICF and the ICF-CY: Findings from a systematic literature review. Developmental Neurorehabilitation, 15(1), 63–78. https://doi.org/10.3109/17518423.2011.633108

29.

Michelsen

S. I.

Uldall

Hansen

Madsen

(2006). Social integration of adults with cerebral palsy. Developmental Medicine & Child Neurology, 48(8), 643–649. https://doi.org/10.1017/S0012162206001368

30.

Michelsen

S. I.

Uldall

Kejs

A. M. T.

Madsen

(2005). Education and employment prospects in cerebral palsy. Developmental Medicine & Child Neurology, 47(8), 511–517. https://doi.org/10.1111/j.1469-8749.2005.tb01184.x

31.

Morse

J. M.

Coulehan

(2015). Maintaining confidentiality in qualitative publications. Qualitative Health Research, 25(2), 151–152. https://doi.org/10.1177/1049732314563489

32.

Novak

Hines

Goldsmith

Barclay

(2012). Clinical prognostic messages from a systematic review on cerebral palsy. Pediatrics, 130(5), e1285–1312. https://doi.org/10.1542/peds.2012-0924

33.

Olsson Moller

Hansson

E. E.

Ekdahl

Midlov

Jakobsson

Kristensson

. (2014). Fighting for control in an unpredictable life: A qualitative study of older persons’ experiences of living with chronic dizziness. BMC Geriatrics, 14, Article 97. https://doi.org/10.1186/1471-2318-14-97

34.

Oskoui

Coutinho

Dykeman

Jette

Pringsheim

(2013). An update on the prevalence of cerebral palsy: A systematic review and meta-analysis. Developmental Medicine & Child Neurology, 55(6), 509–519. https://doi.org/10.1111/dmcn.12080

35.

Palisano

R. J.

Rosenbaum

Bartlett

Livingston

M. H.

(2008). Content validity of the expanded and revised Gross Motor Function Classification System. Developmental Medicine & Child Neurology, 50(10), 744–750. https://doi.org/10.1111/j.1469-8749.2008.03089.x

36.

QSR International. (2018). NVivo qualitative data analysis software (Version 12).

37.

Raskind

M. H.

Goldberg

R. J.

Higgins

Herman

K. L.

(1999). Patterns of change and predictors of success in individuals with learning disabilities: Results from a twenty-year longitudinal study. Learning Disabilities Research & Practice, 14(1), 35–49. https://doi.org/10.1207/sldrp1401_4

38.

Reddihough

D. S.

Jiang

Lanigan

Reid

S. M.

Walstab

J. E.

Davis

(2013). Social outcomes of young adults with cerebral palsy. Journal of Intellectual & Developmental Disability, 38(3), 215–222. https://doi.org/10.3109/13668250.2013.788690

39.

Rosenbaum

Paneth

Leviton

Goldstein

Bax

(2007). A report: The definition and classification of cerebral palsy April 2006. Developmental Medicine & Child Neurology, 49(Suppl. 109), 8–14. https://doi.org/10.1111/j.1469-8749.2007.tb12610.x

40.

Stallings

S. C.

Boyer

A. P.

Joosten

Y. A.

Novak

L. L.

Richmond

Vaughn

Y. C.

Wilkins

C. H.

(2019). A taxonomy of impacts on clinical and translational research from community stakeholder engagement. Health Expectations, 22(4), 731–742. https://doi.org/10.1111/hex.12937

41.

Thompson Burdine

Thorne

Sandhu

. (2021). Mar). Interpretive description: A flexible qualitative methodology for medical education research. Medical Education, 55(3), 336–343. https://doi.org/10.1111/medu.14380

42.

Thorne

(2000). Data analysis in qualitative research. Evidence-Based Nursing, 3, 68–70. https://doi.org/10.1136/ebn.3.3.68

43.

Thorne

(2016). Interpretive description: Qualitative research for applied practice. Taylor & Francis.

44.

Thorne

Kirkhan

O’Flynn-Magee

(2004). The analytic challenge in interpretive description. International Journal of Qualitative Methods, 3(1), 1–11. https://doi.org/10.1177/160940690400300101

45.

van Gorp

Hilberink

S. R.

Noten

Benner

J. L.

Stam

H. J.

van der Slot

W. M. A.

Roebroeck

M. E

. (2020). Epidemiology of cerebral palsy in adulthood: A systematic review and meta-analysis of the most frequently studied outcomes. Archives of Physical Medicine & Rehabilitation, 101(6), 1041–1052. https://doi.org/10.1016/j.apmr.2020.01.009

46.

van Gorp

Van Wely

Dallmeijer

A. J.

de Groot

Ketelaar

Roebroeck

M. E.

, & Perrin-Decade Study Group. (2019). Long-term course of difficulty in participation of individuals with cerebral palsy aged 16 to 34 years: A prospective cohort study. Developmental Medicine & Child Neurology, 61(2), 194–203. https://doi.org/10.1111/dmcn.14004

47.

van Schelven

van der Meulen

Kroeze

Ketelaar

Boeije

. (2020). Patient and public involvement of young people with a chronic condition: Lessons learned and practical tips from a large participatory program. Research Involvement & Engagement, 6, Article 59. https://doi.org/10.1186/s40900-020-00234-1

48.

Verhoef

J. A.

Bramsen

Miedema

H. S.

Stam

H. J.

Roebroeck

M. E.

(2014). Development of work participation in young adults with cerebral palsy: A longitudinal study. Journal of Rehabilitation Medicine, 46(7), 648–655. https://doi.org/10.2340/16501977-1832

49.

Wehman

Sima

A. P.

Ketchum

West

M. D.

Chan

Luecking

(2015). Predictors of successful transition from school to employment for youth with disabilities. Journal of Occupational Rehabilitation, 25(2), 323–334. https://doi.org/10.1007/s10926-014-9541-6

50.

Wiegerink

D. J.

Roebroeck

Bender

Stam

Cohen-Kettenis

, & Transition Research Group South West Netherlands. (2011). Sexuality of young adults with cerebral palsy: Experienced limitations and needs. Sexuality & Disability, 29(2), 119–128. https://doi.org/10.1007/s11195-010-9180-6

51.

Wiegerink

D. J.

Roebroeck

M. E.

Donkervoort

Stam

H. J.

Cohen-Kettenis

P. T.

(2006). Social and sexual relationships of adolescents and young adults with cerebral palsy: A review. Clinical Rehabilitation, 20(12), 1023–1031. https://doi.org/10.1177/0269215506071275

52.

World Health Organization. (2001). International classification of functioning, disability and health. https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health

53.

Yeung

P. H.

Passmore

A. E.

Packer

T. L.

(2008). Active citizens or passive recipients: How Australian young adults with cerebral palsy define citizenship. Journal of Intellectual & Developmental Disability, 33(1), 65–75. https://doi.org/10.1080/13668250701875129

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.03 MB