Social participation in adults with cerebral palsy: a systematic review of the evidence-base

Figures & data

Table 1. Search terms.

Social participation	Cerebral palsy	Adult
Social/community engagement Social/community activities Social/community involvement Social/community participation Participation	Cerebral pals* CP ((Hemipleg* or diplegi* or quadriplegi* or unilateral*) ataxi*) ((Hemipleg* or diplegi* or quadriplegi* or unilateral*) spastic*) Little* disease	Adult* Grow* up Young adult Aged Middle-aged Older* Elder* Later in life Aging

Figure 1. PRISMA flowchart.

t shows the PRISMA flowchart for the review. Title: Identification of studies via databases and registers. Section 1: Identification. Records identified from: Databases (CINAHL (77), PsycINFO (45), PubMed (61), Web of Science (155)) Combined (n = 338) Hand-searching reference lists (n = 8). Records removed before screening: duplicate records removed by endnote (n = 120), duplicate records removed by researcher (n = 24). Section 2: Screening. Records screened (n = 247), records excluded (n = 225). Reports sought for retrieval (n = 22), reports not retrieved (n = 0). Reports assessed for eligibility (n = 22), reports excluded: no discussion of social participation (n = 3), Inadequate number of adults with CP (n = 3). Section 3: Included. Studies included in review (n = 16).

Table 2. Characteristics of included studies.

Author(s) and country of origin	Aim(s)	Design	Participants	Methods	Findings	Definition of social participation
Bartolac, & Jokic [36] Croatia	To explore the everyday experience of social and occupational participation of persons with physical disabilities living in Croatia.	Qualitative	15 Adults (CP n = 7, SCI n = 3, MD n = 5), ages 20–65 years, 9 women, GMFCS not recorded.	Six semi-structured interviews on sources of stress, two focus groups.	Three themes emerged. First, occupational and social participation are described as a means for inclusion. Work and completing tasks/chores provides a sense of achievement, belonging, pride and purpose. Secondly, exclusion is seen as a consequence of occupational deprivation and social marginalization. Finally, enablers and barriers to meaningful participation were highlighted. Enablers: positive attitude and empowerment. Barriers: illness, low confidence, physical limitations, loss of spontaneity.	Social model definition.
Carroll et al. [37] United States	To explore how adults with CP experience aging and the impact of growing older on participation.	Qualitative	38 Adults with spastic CP, ages 18–65 (average 31.42 years), 63.2% female, GMFCS I–III	Semi-structured interviews	Themes included individual agency, family and social context, and sociocultural contexts in a life-course development context. The impact of parental expectations, apprehension of aging, inaccessible environments and lack of social supports were cited as barriers to social participation.	ICF definition.
Gannotti et al. [38] United States	To evaluate changes in gait, descriptive analysis of characteristics associated with gait and participation outcomes, and to highlight characteristics of paediatric rehab interventions aimed at improving gait in adults with CP.	Mixed methods	26 Adults with CP, ages 20–36 (average 25 years), 11 male, GMFCS I–IV.	Case studies, motion analysis, semi-structured interviews. Measures: Short Form Health Survey (SF-36) [39], Canadian Occupational Performance Measure [40]	No direct relationship found between gait and participation outcomes (work activities, social functioning (SF-36), role-emotional (SF-36), living arrangements.) Highlights importance of self-efficacy and determination in achieving success in participation domains.	ICF definition.
Gaskin et al. [24] Australia	To investigate how people with CP have successfully negotiated major challenges of adulthood, and to identify what factors may have contributed to successful outcomes and what supports were needed in achieving these outcomes.	Qualitative	23 Adults with CP, ages 18–47, 13 female, GMFCS I–IV	Semi-structured interviews	Four main themes emerged, with several subcategories, relating to positive and negative experiences in participants’ lives: Formative Experiences – determination; pathways for developing competence; parental expectations; sibling support; involvement in school life; skills for making friends; coping with bullying; experiences with healthcare. Present functioning – positive self-concept; social skills; physical fitness; ability to find a way. Present contexts – availability of support; expectations of involvement; accessible environments. Finding a way – drawing on knowledge and skills; gravitating towards those who are comfortable with difference; maintaining function; using natural and paid supports.	ICF definition.
Hanes et al. [41] Canada	Explore the lived experience of young people with CP with their physical, mental and emotional health in the context of a larger longitudinal study on brain function, physical and mental health, and well-being.	Qualitative	16 Adults with CP, ages 17–29 (average 26 years, SD = 3), 7 female, GMFCS I–V	Three focus groups	Four main themes emerged from focus groups: Health – physical and mental health and illness experience. Meaningful participation in work (major subject) and recreation, benefits of goal setting. Impact of the environment – family, intimate and peer relationships, accessibility. Identity for young people with CP.	Not defined, however, Aligns with ICF definition.
Imms et al. [42] Australia	Investigate the social outcomes of school leavers with CP and explore the determinants of desirable outcomes.	Quantitative, cross-sectional	90 Adults with CP aged 18–25, (average 22.4 years, SD = 2.2), 57% male, GMFCS I–V	Online/paper-based surveys. Measures of variables that may influence participation in life situations and life satisfaction.	Overall, young adults with CP had different social outcomes to the general population in participation domains of education, employment (32.6% CP employed, 75.8% general population), financial status, relationships, living arrangements (12.5% CP living away from parental home, 51.8% general population), community participation and life satisfaction. Most participants with CP (72.7%) reported that their health affects participation in work and were receiving disability support pensions. Young adults with CP reported high levels of emotional/informational support, tangible support, affectionate support and presence of positive social interactions, and a higher proportion were active members of a club or association compared with the general population (41.4% CP, 30% general population).	Not defined, however, aligns with ICF definition.
Jacobson et al. [27] Sweden	To describe social outcomes for young adults with CP and to explore associations of social outcomes with their classification levels within GMFCS, MACS and CFCS and intellectual disability.	Quantitative, cross-sectional	61 Adults with CP, ages 20–22 (average 21 years 2 months, SD = 8 months), 27 female, GMFCS I–V	Social outcomes examined through questions on living arrangements, occupation, personal finances, personal care and relationships. GMFCS [43], MACS [44], CFCS [45].	Participation largely defined by communication levels and ID. Fine motor function had some associations with participation in employment (p < 0.01–0.06) and finance (p < 0.001) while gross motor function (GMFCS) showed no significant associations with social outcomes. 20% of young adults had moved out of the parental home, 43% dependent on family support. Majority without ID (79%) were employed. All associations negative: increased disability, lower probability of achieving participation goals.	Not defined, however, aligns with ICF definition.
Jiang et al. [46] Australia	Compares the QOL of young adults with CP in Australia with able-bodied peers to explore the relationship between QOL and impairments, functioning, and social participation.	Quantitative, cross-sectional	335 Adults with CP (or proxies, 62% self-report), average 24.7 years (SD = 2.8), 51% male, GMFCS I–V	Social participation data obtained from questions on education, employment, living situation and marital status.	General population and self-report group had similar scores for QOL in social relationship and environment domains (p < 0.05), but lower scores in physical health, psychological well-being and role function (p < 0.001) Mobility/functional independence strongly associated with QOL related to physical health and employment but not to satisfaction with social relationships. Barthel index scores and social participation variables significantly linked to the social relationship domain score in simple linear regressions but not in the multivariate analysis. Employment status associated with each QOL domain except psychological wellbeing. Highlights the benefit of employment and employment-related support services on social participation.	Not defined, however, aligns with ICF definition.
Palisano et al. [43] Canada	To describe how young adults with CP experience life-course health development. To create key messages for paediatric health service providers to promote children’s capacities for future adult roles and healthy adult living.	Qualitative	23 Adults with CP, ages 25–33 years (average 28.2 years, SD = 2.4), 13 male, GMFCS I–V	Semi-structured interviews lasting 50–60min.	Four themes were identified from interviews. Personal life-course – unique nature of each developmental journey and constant change of healthy living potential for people with CP. Contexts of healthy living – relationships between person and circumstances of their lives (family, health care, community etc.), transactional as the individual can influence the context as much as the context influences the individual. Health development through everyday experiences – these shape the life-course and develop the individual capacity for healthy living and social participation. Healthy living as an adaptive process – adjusting to changing circumstances and learning from experience.	Not defined, however, takes a social model stance.
Rozkalne et al. [47] Latvia	To identify the level of participation in the context of the developmental transition from adolescence to adult life for young adults with CP and the factors that had an influence on participation.	Quantitative, cross-sectional	81 Adults with CP and normal/slightly decreased cognitive function, ages 16–21 years (average 18 years [IQR 20–17]), 41 male, GMFCS I–V	Rotterdam Transition Profile [48]	Overall, low levels of autonomy in all domains of participation. Participants were in phase 0 (no experience) in the domains of education and employment (21%), intimate relationships (56%) and sexuality (59%). Higher disability levels (measured by WHODAS) were associated with decreased participation. Age positively associated with participation in education and employment, finance, housing and sexuality. Low GMFCS negative associations with autonomy in social activities, sexuality and transportation. Only 9% of adults were autonomous in education and employment domains, 44% depending on other adults for money/allowance.	Not defined, however, aligns with ICF definition.
Schmidt et al. [49] The Netherlands	1 Describe the long-term development of autonomy in individuals with CP in several domains of participation and examine differences in development between individuals with high versus low levels of GMF. 2 Compare the proportions of individuals with CP who are autonomous in participation to typically developing peers.	Quantitative, cohort study, PERRIN combination of two 13-year follow up studies.	189 Individuals with CP without intellectual disability, ages 12–34 (average 21 years 11 months, SD = 4 years 11 months), 117 male, 72 female, GMFCS I–V.	Rotterdam Transition Profile [48]	90% of Individuals with CP reached autonomy in participation in adulthood (27 years). Transport – most autonomous from 13+. Leisure, finance, intimate relationships, employment – autonomous from 18 to 22+, Housing – autonomous from 27+. Those with lower gross motor function had lower odds of organising own transport and less experienced in sexual relationships. Social participation reliant on provision of transport from family members. GMFCS 3–5 autonomy higher in finances regardless of age (related to disability benefits in Netherlands).	Not defined, however, aligns with ICF definition.
Slaman et al. [50] The Netherlands	To evaluate the effect of a lifestyle intervention on fatigue, participation, QOL, GMF, motivation, self-efficacy and social support, and to explore mediating effects of physical behaviour and physical fitness.	Quantitative randomised controlled trial with intention to treat analysis	41 Adults with CP, ages 16–24 (average 20 years, SD = 3), 27 male, 30 female, GMFCS I–IV.	6-Month intervention of physical fitness training with counselling sessions. LIFE-H Questionnaire [51].	While the intervention saw an increase in family support for participation during intervention (difference = 5.38, p = 0.04), participants still experienced no change to physical limitations in achieving social participation.	ICF definition.
Van Gorp et al. [52] The Netherlands	To determine childhood predictors of participation in domestic life and interpersonal relationships of young adults with CP.	Quantitative, prospective cohort study, 13 year follow up of 9–16 cohort (PERRIN)	67 Adults with CP, ages 21–27 (average 24.6 years, SD = 1.6), 44 m 22,GMFCS I–V	Life-H Questionnaire [51], Vineland Adaptive Behaviour Scale (Vine-II) [53]	Childhood factors predict up to 90% of variation in participation in adulthood. Environmental and personal factors in childhood did not influence future participation. Participation in domestic life − 73% performed below adequate level for age, 66% experienced difficulty. Participation in interpersonal relationships − 64% performed below adequate for age, 33% experienced difficulty. Having ID or epilepsy influenced lower attendance and difficulty in participation in interpersonal relationships. Individuals with lower motor capacity, low manual ability and ID were at increased risk for low participation in domestic life and interpersonal relations in the future.	ICF definition.
Van Gorp et al. [54] The Netherlands	To determine the long-term course of difficulty in participation of individuals with CP without ID between ages 16–34 years of age.	Quantitative, prospective cohort study, 13 year follow up of two age cohorts (PERRIN 9–13 + 16–24)	151 Individuals with CP aged 16–34 (no mean stated), 63% male, 71% GMFCS I–IV	Life-H Questionnaire [51].	Difficulty in participation increased for individuals with CP in mid-late 20s. High average levels of participation but large proportions experience difficulty (41–95% young adults) and require assistance, particularly in domestic life, education and employment and recreation. Those with lower motor function experience more difficulty with 95% of individuals in GMFCS IV experiencing difficulty in one or more participation domains. However, this group continued to develop participation into early 20s, whereas those with higher function reached peak participation levels at younger age. Increasing difficulty for all in older age in 5/6 domains (not responsibilities). Highest levels of difficulty in GMFCS 4, oldest age bracket (23–34) and in housing, education and employment and recreation.	ICF definition.
Van Wely et al. [55] The Netherlands	To examine which teenage factors predict participation attendance, as well as difficulty and need for assistance with participation in domestic life and interpersonal relationships among adults with CP without ID.	Quantitative, prospective cohort study, 13 year follow up of PERRIN 16–24 cohort.	53 Adults with CP without intellectual disability, ages 24–29, (average 31.7 years, SD = 1.4), 28 m 25 f, GMFCS I–V	Vineland Adaptive Behaviour Scales [53], Life-H Questionnaire [51].	High average scores in participation in domestic life [Vine-II: 42.6 (SD 10.3) out of 48 points; Life-H: 8.3 (SD 1.4) out of 10 points] and interpersonal relationships [Vine-II: 73.3 (SD 4.0) out of 76 points; Life-H: 9.2 (SD 1.2) out of 10 points], but high number scored below reference norms for difficulty and need for assistance. Domestic life – low attendance in adulthood predicted by lower GMF and protective parenting at teenage (R^2 = 60.9%). More difficulty/need for assistance predicted by lower GMF, rigid personality and special education (R^2= 64.6%). Interpersonal relationships – low attendance predicted by rejective parenting and less daily support in teenage (R^2= 40.6%). More difficulty/need for assistance predicted by being male, socially avoidant and rejective parenting (R^2 = 49.6%). Environmental and personal factors + GMF (domestic only) + teenage participation in communication and daily living skills predict participation in domestic life and/or interpersonal relationships in adulthood. Parenting style and personality type significant predictors of participation in adulthood.	ICF definition.
Veerbeek et al. [56] South Africa	To determine changes in level of accomplishment and satisfaction in daily activities and social participation, and functional mobility in adults with CP more than 25 years after selective dorsal rhizotomy (SDR). To compare these outcomes of adults with CP to a matched group of typically developing adults.	Quantitative, cross-sectional, 9 year follow up.	26 Adults with CP and spastic diplegia, ages 34–41 (median age 35.8 years), 16 male, GMFCS I–III	Life-H Questionnaire [51], Functional Mobility Scale (walking performance) [57], GMFCS [43]	Overall, most adults independent and satisfied with their participation in daily life. Strong correlations found between accomplishment and functional mobility (0.85–0.89), and satisfaction and functional mobility (0.73–0.79). Slight change in housing dependency in follow up but all satisfied – happy to have/pay someone else to assist with domestic tasks. Some small differences in daily activities and social roles to typically developing peers, adults with CP more dependent in mobility and recreation. Interestingly, higher levels of employment in CP than in developing countries (70% of CP cohort employed cf 29–54% in Western countries) – perhaps highlighting impact of disability benefits. No change in functional mobility in 9 years is remarkable as most studies report decline in early-mid 20s.	Not defined but aligns with ICF model.

Abbreviations: CP: cerebral palsy; SCI: spinal cord injury; MD: muscular dystrophy; GMFCS: Gross Motor Function Classification System; ICF: International Classification of Functioning; SD: standard deviation; MACS: Manual Ability Classification System; CFCS: Communication Function Classification System; ID: intellectual disability; QOL: quality of life; IQR: interquartile range; WHODAS: World Health Organisation Disability Assessment Scale; PERRIN: Pediatric Rehabilitation Research in the Netherlands; GMF: gross motor function.

Table 3. Quality assessment (MMAT).

First author & year	Q1	Q2	Q3	Q4	Q5	Explanation
Bartolac (2019) [36]	Y	Y	Y	Y	Y	All criteria clearly addressed
Carroll (2021) [37]	Y	Y	Y	Y	Y	All criteria clearly addressed
Gannotti (2013) [38]	Y	Y	Y	N	CT	Divergences and inconsistencies of quantitative and qualitative results were not addressed; insufficient detail was provided to assess if each component of the study adhered to quality criteria.
Gaskin (2021) [24]	Y	Y	Y	Y	Y	All criteria clearly addressed
Hanes (2019) [41]	Y	Y	Y	Y	Y	All criteria clearly addressed
Imms (2021) [42]	Y	Y	Y	Y	Y	All criteria clearly addressed
Jacobson (2019) [27]	Y	Y	Y	Y	Y	All criteria clearly addressed
Jiang (2016) [46]	Y	Y	Y	Y	Y	All criteria clearly addressed
Palisano (2020) [58]	Y	Y	Y	Y	Y	All criteria clearly addressed
Rozkalne (2019) [47]	Y	Y	Y	CT	Y	Details of nonresponse bias are not discussed
Schmidt (2020) [49]	Y	Y	Y	CT	Y	Details of nonresponse bias are not discussed
Slaman (2015) [50]	Y	Y	Y	Y	Y	All criteria clearly addressed
Van Gorp (2018) [54]	Y	Y	Y	Y	Y	All criteria clearly addressed
Van Gorp (2020) [52]	Y	Y	Y	Y	Y	All criteria clearly addressed
Van Wely (2020) [55]	Y	Y	Y	CT	Y	Details of nonresponse bias are not discussed
Veerbeek (2021) [56]	Y	Y	Y	CT	Y	Details of nonresponse bias are not discussed

Y: YES – the paper clearly addresses the question; N: NO – the paper has clearly shown a negative answer to the question; CT: cannot tell – no statement is included which allows an answer to be drawn for the question.

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