Experiences of participation in daily life of adolescents and young adults with cerebral palsy: A scoping review

被引:0
|
作者
Cleary, Stacey L. [1 ,2 ]
Morgan, Prue E. [1 ,3 ]
Wallen, Margaret [4 ]
Honan, Ingrid [5 ]
Shields, Nora [6 ]
Munzel, Freya E. [7 ,8 ]
Plummer, James R. [7 ]
Assaad, Cassandra [7 ]
Karlsson, Petra [5 ]
Culnane, Evelyn [9 ]
Ding, Jacqueline Y. [1 ,3 ]
Holmes, Carlee [1 ,2 ,10 ]
Dutia, Iain M. [1 ,11 ,12 ]
Reddihough, Dinah S. [1 ,2 ,13 ]
Imms, Christine [1 ,2 ]
机构
[1] Murdoch Childrens Res Inst, Neurodisabil & Rehabil, Parkville, Vic, Australia
[2] Univ Melbourne, Dept Paediat, Parkville, Vic, Australia
[3] Monash Univ, Dept Physiotherapy, Frankston, Vic, Australia
[4] Australian Catholic Univ, Sch Allied Hlth, Fac Hlth Sci, North Sydney, NSW, Australia
[5] Univ Sydney, Cerebral Palsy Alliance, Discipline Child & Adolescent Hlth, Fac Med & Hlth,Childrens Hosp Westmead Clin Sc, Sydney, NSW, Australia
[6] La Trobe Univ, Sch Psychol & Publ Hlth, Olga Tennison Autism Res Ctr, Melbourne, Vic, Australia
[7] Murdoch Childrens Res Inst, NHMRC Ctr Res Excellence, CP Achieve, Parkville, Vic, Australia
[8] Ctr Psychosocial Res, Coburg, Vic, Australia
[9] Royal Childrens Hosp, Transit Support Serv, Parkville, Vic, Australia
[10] St Vincents Hosp Melbourne, Young Adult Complex Disabil Serv, Melbourne, Vic, Australia
[11] Australian Catholic Univ, Fac Hlth Sci, Sch Allied Hlth, Brisbane, Qld, Australia
[12] Univ Queensland, Sch Human Movement & Nutr Sci, Brisbane, Qld, Australia
[13] Royal Childrens Hosp, Neurodev & Disabil, Parkville, Vic, Australia
基金
英国医学研究理事会;
关键词
TRANSITION EXPERIENCES; ROMANTIC RELATIONSHIPS; SEXUAL-ACTIVITY; LOOKING BACK; HEALTH; CHILDREN; YOUTH; REFLECTIONS; OUTCOMES; NEEDS;
D O I
10.1111/dmcn.16196
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
AimTo synthesize the experiences of 15- to 34-year-olds with cerebral palsy (CP) as they participate in key life situations of young adulthood.MethodA mixed-methods scoping review was undertaken and six electronic databases searched (January 2001 to August 2023). Participation foci and thematic outcomes were mapped to the International Classification of Functioning, Disability and Health. Results were integrated using a convergent integrated analysis framework, and data analysis completed through thematic synthesis. Themes were mapped to the family of Participation-Related Constructs.ResultsThirty-eight publications (32 studies; 2759 participants) were included. More participants were male (n = 1435), walked independently (n = 1319), and lived with their families (n = 1171). 'Claiming my adulthood and "doing" life' was the unifying descriptor of participation, conveying the effortful work young people felt necessary to take their places in the adult world. The physical accessibility of the environment was a significant barrier to participation, as were people's negative attitudes or misconceptions about disability. A close-knit 'circle of support', typically family members, formed a supportive foundation during this period.InterpretationYoung people with CP aim to participate fully in adult life, alongside their peers. Improved community accessibility, inclusion, and more supportive health environments would ensure they could live the lives they choose.
引用
收藏
页数:19
相关论文
共 50 条
  • [1] Does exercise affect quality of life and participation of adolescents and adults with cerebral palsy: a systematic review
    Czencz, James
    Shields, Nora
    Wallen, Margaret
    Wilson, Peter H.
    McGuckian, Thomas B.
    Imms, Christine
    DISABILITY AND REHABILITATION, 2023, 45 (25) : 4190 - 4206
  • [2] Child engagement in daily life: a measure of participation for young children with cerebral palsy
    Chiarello, Lisa A.
    Palisano, Robert J.
    Mccoy, Sarah Westcott
    Bartlett, Doreen J.
    Wood, Audrey
    Chang, Hui-Ju
    Kang, Lin-Ju
    Avery, Lisa
    DISABILITY AND REHABILITATION, 2014, 36 (21) : 1804 - 1816
  • [3] Daily living skills of autistic adolescents and young adults: A scoping review
    Auld, Chelsea
    Foley, Kitty-Rose
    Cashin, Andrew
    AUSTRALIAN OCCUPATIONAL THERAPY JOURNAL, 2022, 69 (04) : 456 - 474
  • [4] Social and sexual relationships of adolescents and young adults with cerebral palsy: a review
    Wiegerink, Diana J. H. G.
    Roebroeck, Marij E.
    Donkervoort, Mireille
    Stam, Hank J.
    Cohen-Kettenis, Peggy T.
    CLINICAL REHABILITATION, 2006, 20 (12) : 1023 - 1031
  • [5] Health, functioning, and participation of adolescents and adults with cerebral palsy: A review of outcomes research
    Frisch, Dana
    Msall, Michael E.
    DEVELOPMENTAL DISABILITIES RESEARCH REVIEWS, 2013, 18 (01) : 84 - 94
  • [6] Participation experiences of young people with cerebral palsy in key life situations: A qualitative study
    Ding, Jacqueline Y.
    Cleary, Stacey L.
    Morgan, Prue E.
    DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY, 2024, 66 (10): : 1369 - 1379
  • [7] EXPLORING SOCIAL PARTICIPATION IN YOUNG ADULTS WITH CEREBRAL PALSY
    Jacobson, Dan N. O.
    Lowing, Kristina
    Hjalmarsson, Emma
    Tedroff, Krishna
    JOURNAL OF REHABILITATION MEDICINE, 2019, 51 (03) : 167 - 174
  • [8] Facilitators and barriers to participation in physical activities in children and adolescents living with cerebral palsy: a scoping review
    Abid, Manel
    Cherni, Yosra
    Batcho, Charles Sebiyo
    Traverse, Elodie
    Lavoie, Marie Denise
    Mercier, Catherine
    DISABILITY AND REHABILITATION, 2023, 45 (25) : 4322 - 4337
  • [9] Quality of life in young adults with cerebral palsy
    Jiang, Benran
    Walstab, Janet
    Reid, Susan M.
    Davis, Elise
    Reddihough, Dinah
    DISABILITY AND HEALTH JOURNAL, 2016, 9 (04) : 673 - 681
  • [10] Exploring the transition experiences of young adults with cerebral palsy
    Clough, Isabelle
    Culnane, Evelyn
    Loftus, Hayley
    CHILD CARE HEALTH AND DEVELOPMENT, 2024, 50 (01)