Participation in Social Roles of Adolescents With Cerebral Palsy: Exploring Accomplishment and Satisfaction

Dirk-Wouter Smits; Marloes van Gorp; Leontien van Wely; Johannes Verheijden; Jeanine Voorman; Sophie Wintels; Joyce van der Cruijsen; Marjolijn Ketelaar; PERRIN-PiP study group

doi:10.1016/j.arrct.2019.100021

Participation in Social Roles of Adolescents With Cerebral Palsy: Exploring Accomplishment and Satisfaction

Arch Rehabil Res Clin Transl. 2019 Aug 22;1(3-4):100021. doi: 10.1016/j.arrct.2019.100021. eCollection 2019 Dec.

Authors

Dirk-Wouter Smits¹, Marloes van Gorp^{2

3}, Leontien van Wely², Johannes Verheijden⁴, Jeanine Voorman^{1

5}, Sophie Wintels¹, Joyce van der Cruijsen¹, Marjolijn Ketelaar¹; PERRIN-PiP study group

Collaborators

PERRIN-PiP study group:
M Ketelaar, D W Smits, J M Voorman, A J Dallmeijer, M E Roebroeck, H A Reinders-Messelink, J W Gorter, J Verheijden

Affiliations

¹ Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands.
² Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Rehabilitation Medicine, Amsterdam Movement Sciences, Amsterdam, The Netherlands.
³ Department of Rehabilitation Medicine, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
⁴ BOSK, Association of Persons with a Physical Disability, Utrecht, The Netherlands.
⁵ Department of Rehabilitation, Physical Therapy Science & Sports, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands.

Abstract

Objective: To explore participation in social roles of adolescents (aged 12-18y) with cerebral palsy (CP), in terms of satisfaction compared with accomplishment.

Design: Cohort study as part of a prospective longitudinal research program.

Setting: Clinic.

Participants: Participants were adolescents (N=45; 58% male, mean age 15y 6mo) with CP at levels I-II (88%) and III-IV-V (12%) of the Gross Motor Function Classification System.

Interventions: Not applicable.

Main outcome measures: Accomplishment (0-9 scale; with score <8 "having difficulties") and satisfaction (1-5 scale; with score 3 "neutral") were assessed using the Life-Habits questionnaire, on 6 domains (Responsibilities, Interpersonal relationships, Community life, Education, Employment, Recreation). Per domain, we analyzed scatterplots of accomplishment vs satisfaction. Additionally, we compared determinant-models (including factors of CP, activity, person, and environment) using regression analysis.

Results: For accomplishment, mean scores were <8.00 except for Interpersonal relationships. For satisfaction, mean scores varied between 3.85 and 4.34. Overall, individuals with similar levels of accomplishment showed large ranges in their levels of satisfaction, which was expressed by low explained variances, especially on Education (6%). Furthermore, different sets of determinants were found for accomplishment (predominantly CP factors) compared with satisfaction (predominantly environment factors).

Conclusions: This study revealed a dissociation between participation accomplishment and satisfaction with participation among adolescents with CP. For practice and research, we recommend not only to focus on accomplishment but also, if not mainly, on satisfaction.

Keywords: Adolescent; CP, cerebral palsy; Cerebral palsy; GMFCS, Gross Motor Function Classification System; GMFM, Gross Motor Function Measure; ICF, International Classification of Functioning, Disability, and Health; Life-H, Life Habits questionnaire; MACS, Manual Ability Classification System; PEDI, Pediatric Evaluation of Disability Inventory; PERRIN, Pediatric Rehabilitation Research in the Netherlands; Personal satisfaction; PiP, Participation in Perspective; Rehabilitation; Social participation; UCL, Utrecht Coping List.