ORIGINAL RESEARCH article
Social Outcomes of School Leavers With Cerebral Palsy Living in Victoria
- 1Apex Australia Foundation Chair of Neurodevelopment and Disability, Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia
- 2Principal Research Fellow, Murdoch Children's Research Institute, Melbourne, VIC, Australia
- 3Biostatistician, Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia
- 4Chair in Disability and Health, School of Population and Global Health, The University of Melbourne, Parkville, VIC, Australia
Objective: In Australia, the National Disability Strategy provides a framework to guide actions and investment to achieve equity in social inclusion and economic participation for people with disability. We investigated the social outcomes of school leavers with cerebral palsy (CP) in Victoria, Australia and explored the determinants of desirable outcomes.
Methods: We used the Victorian CP Register to invite all adults with CP aged 18–25 years (n = 649). On-line and/or paper-based surveys explored participation in education, employment, community activities, living situation, relationships and life satisfaction. Functional and health status data were collected. Social outcomes were summarized descriptively and compared between individuals with CP and non-disabled peers aged 18–25 years from the Household Income and Labor Dynamics in Australia dataset. Within the CP cohort we explored whether physical and mental health and level of functioning were associated with social outcomes. In addition, a descriptive comparison was undertaken between the social outcomes of the current CP cohort with that of a previously reported 2007 cohort.
Results: Ninety participants (57% male; mean age 22.4 years (SD: 2.2) in 2020; 61.1% self-reported) provided data for analyses; response rate 16.9%. CP characteristics were similar between respondents and non-respondents. In comparison to similar aged peers, 79.8% had completed secondary school (compared to 83.2%); 32.6% (compared to 75.8%) were in paid work; 87.5% (compared to 48.2%) were living in their parental home; and 3.4% (compared to 31.6%) were married or partnered. Individuals with CP and higher levels of functional capacity and better physical health were more likely to undertake post-secondary education. Higher levels of functional capacity and physical health, as well as lower mental health status were associated with being employed.
Conclusions: While foundational education completion rates were similar to non-disabled peers, significant gaps in social outcomes remain, including residence in the parental home and single status. While addressing these issues is challenging, substantial efforts are needed to reduce these disparities—work that needs to be done in collaboration with people with CP and their families.
Adults with cerebral palsy (CP) experience social and economic inequalities and challenges (1–3), related to impairments associated with CP (4), societal barriers such as discrimination, and a lack of accommodations they require to cater for their needs (5, 6). There is evidence that participation in life situations becomes more challenging as children with CP transition to adulthood. As their social roles change, they expect and desire to participate in common adult activities such as employment, further education, independent living and intimate relationships (7).
CP is a lifelong condition that occurs as a result of damage to the developing brain in utero or in the first 2 years of life (8). While the primary disorder is of movement and posture, people with CP experience a range of co-morbidities (e.g., intellectual impairment, epilepsy, hearing or vision impairment, musculo-skeletal contractures and deformities) and functional impacts (8). For example, almost half require assistance to mobilize, two-thirds require help to handle objects, one-fifth require assistance to communicate, one quarter have behavioral concerns and three-quarters experience chronic pain (9). While prognostic data is most commonly found in studies of children, more recent research that has focused on adults, confirms the epidemiology of ongoing functional impacts of CP into adulthood (10). Given that in Australia over 75% of the estimated 35,500 individuals who have CP are adults (11), evidence of outcomes for Australian adults with CP is needed.
The 2010–2020 National Disability Strategy provided a policy framework to guide investment and activity to improve performance of mainstream services for people with disability, increase the visibility of disability issues and improve inclusion of those with disability (12). The second 10-year National Disability Strategy will be released late 2021. In 2013, within the life of the 2010–2020 Strategy, a National Disability Insurance Scheme (NDIS) was legislated for implementation, representing a major policy shift and re-direction of disability funding (13). The intent of the NDIS was to give choice and control to individuals with severe and permanent disability via funding packages which they could use to purchase supports and services (14). The NDIS funding is explicitly to support individuals to meet their goals for participation in the usual activities of life (13) (see also, www.ndis.gov.au). In 2018, ~5% of NDIS recipients were those with CP, however, they required the second highest annualized support package in dollar value (11), emphasizing that an understanding of participation gaps and supports required, is needed.
In 2007, we investigated the social situation of 335 young adults with CP aged 20–30 years (2). Our results showed that compared to their non-disabled peers, many of those with CP had not completed secondary education (50 vs. 20%), were unemployed (64 vs. 20%), and had an annual income of < $20,000 Australian dollars (80 vs. 39%). These findings have been substantiated in more recent international research. For example, a series of studies from The Netherlands (7), found that difficulties in participation in domestic life and interpersonal relationships for individuals with CP increased from the age of 16 years. In related work, van Wely et al. (15) demonstrated that family and daily supports, along with personal coping styles and prior participation patterns predicted participation in adulthood in domestic life and interpersonal relationships. Schmidt et al. (16) also found that individuals with CP appeared to lag behind their age-matched non-disabled peers in the development of autonomy in life domains, including finances, intimate relationships and housing. Those with lower gross motor function were at risk of not achieving full autonomy. This body of work from The Netherlands provides important evidence but is limited by its exclusion of individuals with CP with intellectual impairments. In Sweden, Jacobson et al. (17) also described the social participation of young adults with CP aged 20–22 years, including those with intellectual impairment. Jacobson et al. (17) found young adults with CP were likely to be living in the parental home, be unemployed and dependent on family for financial and basic support for daily activities. Comparisons with age-matched peers were not provided in that study, but the relationships between communication, intellectual and manual abilities and participation outcomes was highlighted (i.e., higher levels of activity limitation were associated with decreased participation).
Research that involves adults with CP has been growing rapidly over the past two decades. A recent overview of systematic reviews of research about adults with CP identified 19 reviews and mapped their content and focus to the domains of the International Classification of Functioning, Disability and Health (ICF) (18). One finding of the overview was that the predominant focus of research has been at the ICF level of body functions, with 12 of the 19 included reviews mapped to this aspect (19). While an overview of systematic reviews does not identify all pertinent research, nevertheless it does highlight the need to shift the focus in research with adults with CP beyond mobility and gait, to broader social outcomes. The need for a change in focus is supported by Lindsay's (20) qualitative synthesis—a systematic review of lived experiences of children and youth with CP. Lindsay found that young people's accounts of their experience of CP focused on social inclusion and aspects of the environment (i.e., family, peers, services, supports) and when aspects of body functions were discussed, they were more likely to be pain, fatigue and mental health, rather than mobility, assistive devices and activities of daily living.
Ensuring optimal outcomes for young people with CP is crucial so that they can participate fully in home and community life. We have little knowledge of how Australian young adults with CP are progressing at the current time and what could be put in place to improve their social and economic participation. When young people are at school, they often receive considerable support and are linked with a range of services. When they leave school, there are significant changes in their care and management (21). Some attend higher education facilities, others seek open or supported employment, whilst others may participate in community activities or in day centre programs. With the advent of the NDIS and the National Disability Strategy in Australia, it is crucial that information is generated so that gaps in service provision can be addressed and that the needs of the individuals themselves, and their families, can play a central role in guiding allocation of resources into the future.
The purpose of this study, therefore, was to investigate the social outcomes of young adults with CP (aged 18–25 years) in Victoria, Australia and determine the factors that may result in desirable outcomes. While this cohort was not fully comparable [included age range of the previous study was 20–30 years, mean = 24.7 years (SD 2.8)] to the 2007 cohort (2), we also aimed to explore whether social outcomes had changed since the study 13 years ago. The specific research questions were:
1. What are the social outcomes of Victorian young adults with CP in terms of further education, employment, living situation and community participation?
a. How do educational, employment, living arrangements, marital status and financial outcomes compare to young adults without CP?
b. Are the social outcomes of the current cohort comparable to that of the 2007 cohort of young adults with CP living in Victoria, Australia?
2. What are the determinants of social outcomes for young adults with CP aged 18–25 years in terms of individual (e.g., functional or health status) and environmental (e.g., socio-economic status, educational background) factors?
3. How satisfied are young adults with CP, or those responsible for their care, with their outcomes?
This descriptive study used survey methods and secondary analyses of matched datasets to address the research aims. Our multi-disciplinary research team also engaged with stakeholders (young adults with CP and parents) as a consultation group during inception of the study.
Ethical approval for the study was received from the Australian Catholic University Human Ethics Committee (ACU HREC 2018–43H). Participants provided written informed consent to participate in the study, with substitute decision makers (e.g., parent, primary carer) providing consent on the behalf of participants who did not have the capacity to consent. As we aimed to recruit participants with a diverse range of impairments, options for survey completion were provided as follows: (i) choices made by myself and filled out by myself; (ii) choices made by myself and filled out by another person; or (iii) choices made on my behalf and filled out by another person.
Participants and Recruitment
Participants were eligible to participate in the study if they were aged 18–25 years, had a diagnosis of CP of any type or severity, no longer attended secondary school and currently lived in Victoria, Australia. Participants were also included via a proxy respondent (parent, or responsible other identified by the individual) if they were unable to complete the survey on their own. Efforts were made to engage and include individuals across all five Gross Motor Function Classification System (GMFCS) (22) levels and those with difficulties relating to communication and/or intellectual function to achieve diversity of participants' experience.
Participants were recruited for the study via letters of invitation through the Victorian Cerebral Palsy Register (VCPR; n = 649 eligible), advertising in newsletters of the Cerebral Palsy Support Network and snowball invitations between participants and social media posts. Follow up letters were sent to those with current addresses on the VCPR as reminders.
The survey questions were developed following a literature review to explore participation of school leavers with CP. The review, plus consultations with a reference group of adults with CP, was used to identify the important life situations to include as well as potential factors to consider when designing the survey. The result was a survey that sought information about (i) the following life situations—further education, employment, friendships and intimate relationships, living situation, health care provision, community participation; (ii) individual factors influencing participation—CP functional status, mental and physical health status, personal factors (gender, education attainment); (iii) environmental factors influencing participation (parental roles and education, school setting, transport availability, provision of health services); and (iv) life satisfaction. We then sought valid and reliable outcomes to measure the identified variables (see Table 1) to which items about participation in education, employment, living situation and community life were added, to create a compilation of measures as an online or paper-based survey. The survey comprised 89 items and took ~30 mins to complete.
Demographic data were also collected, including gender, date of birth, Indigenous status, parents' education, employment and place of birth, and languages spoken at home. The resultant survey was reviewed and piloted to ensure clarity of understanding with a small number of individuals known to the researchers, and modifications were made as necessary. While the survey was intended to be delivered in an online environment, for respondents who could not, or preferred not to access the online version, a paper-based version of the survey was also available. The online survey was supported and distributed using the web-based application Research Electronic Data Capture (REDCap) (31, 32). Data collection occurred during the latter part of 2019 and ceased in March 2020, just prior to the impacts of COVID-19 in Australia.
For the purposes of assessing the likely representativeness of the final sample, de-identified data of eligible non-participants were obtained from the VCPR. To compare outcomes of the CP sample with the general population, data were extracted from the Household, Income and Labor Dynamics in Australia (HILDA) 2019 Survey after filtering for the age range of interest (18–25 years) (33, 34). HILDA is a nationally representative survey of Australian households with individual data collected on all household residents over 15 years of age.
Data Processing and Analysis
All survey responses were either collected directly using REDCap or entered from paper-based questionnaires. All data cleaning and analyses were undertaken using R software version 4.02 (35). Individuals were included in the CP sample if they had returned their survey and provided information for at least one item beyond the demographic characteristics. A comparison of the respondents to invited non-respondents was undertaken using de-identified VCPR data. This comparison was to assess similarity of key CP characteristics between the groups, and to quantify how generalisable the findings would be to the CP population.
Responses to closed-ended questions were summarized using descriptive statistics and described under domains of interest. In the presence of incomplete survey responses, analysis was conducted on observations with complete information only, and frequency of missing data summarized in tabulated results. For the first research question, social outcomes for young adults with CP were reported and compared to a same-aged cohort without CP (via the HILDA dataset restricted to ages 18–25 years). Comparison between the cohorts was made using two approaches. First, responses to common questions within both datasets were summarized and compared descriptively. Second, when appropriate to aid discussion, logistic regression was used to investigate the impact of CP on dichotomised social outcomes of interest, whilst adjusting for potential confounding effects of gender and age. A separate logistic regression model was fitted for each social outcome, with the estimated odds ratio used to quantify the strength of association between exposure (CP vs. no CP) and outcome (e.g., employed vs. unemployed). Odds ratios are reported with their 95% confidence intervals (CI) and probability values to aid in interpretation of the effect size, variability in the observed data, and strength of the evidence, not to make a dichotomized decision of significant/not significant (36, 37). A descriptive comparison was further used to compare the social outcomes of the current CP cohort with that of the 2007 cohort.
For the second research question, responses to questions around potential determinants (individual and environmental factors) of social outcomes were summarized using descriptive statistics within the cohort with CP. To describe the functional impact of CP characteristics on an individual, function was categorized into three levels: high (those classified at Level I or II on GMFCS, MACS, CFCS and with no intellectual impairment or learning disability only), low (those classified at Level IV or V on GMFCS, MACS, CFCS, and severe or moderate intellectual disability) or medium (individuals not in either high or low category). The distribution of functional level was then described (using proportions) to identify the probability of the social outcomes given functional status. Where relevant, and enough responses were obtained, univariate logistic regression was further used to estimate the impact of these factors separately on dichotomized social outcomes for the CP cohort. As before, a separate logistic regression model was fitted for each factor and social outcome of interest. For the third research question, survey responses pertaining to life satisfaction were summarized and described for the young adults with CP.
Response Rates and CP Group Characteristics
In total, 110 surveys were returned (16.9% response rate); one duplicate was removed, and 90 surveys had complete information in relevant fields and were included in the analyses. Of these, 61.1% were completed by self-report (n = 55), defined as individuals making decisions themselves (regardless of who completed the survey), and 38.9% by proxy (n = 35), of which most (n = 32) were completed by a parent and n = 3 by a carer or other responsible person.
In total, 43.3% (n = 39) of individuals were female, and 56.7% male (n = 51). The mean age of participants at time of survey completion was 22.4 years (SD 2.2 years, range 18.6 to 25.8 years). Participants included those classified at each level of the GMFCS (22), Manual Ability Classification System [MACS; (23)], Communication Function Classification System [CFCS; (24)], and the Eating and Drinking Ability Classification System [EDACS; (25)] functional classification systems, indicating the sample represented the diversity of CP characteristics (see Table 2). Participants with no intellectual disability made up 45.6% (n = 41) of the total, while the proportion of those with moderate or severe intellectual disability was 37.8% (n = 34). Comparison of the CP cohort with VCPR non-respondents suggested the distribution of functional abilities was comparable between the two groups, with the age of non-participants being slightly younger (see Table 3). The results pertaining to each research question are reported sequentially within each social outcome domain of interest.
After restricting to the age range of interest (18 to 25 years), the HILDA cohort included information on 2,375 individuals. In comparison to the CP cohort, there was a smaller proportion of males in the HILDA group (49.1% HILDA compared to 56.7% CP cohort), with the mean age being similar between the cohorts [21.7years (SD: 2.3) HILDA; 22.4years (SD: 2.2) CP cohort]. Key demographic information and social outcomes for both cohorts are presented in Table 4, with specific outcomes discussed in further detail below.
Just over half of the young adults with CP had received their education through mainstream schools (53.4%, 47/88), with 46.6% (41/88) attending a special school. Within the CP cohort, 79.8% of young adults (71/89) reported completing high school (year 12 or equivalent); a higher proportion than the 50% reported in the previous study (2). Despite the high rate of high-school completion, over half of the young adults with CP had not attempted any additional qualifications after school (59.0%, 49/83). Approximately a third of young adults with CP reported they were currently completing formal tertiary study at the time of survey (30.3%, 27/89).
In comparison to the general population, the proportion of young adults obtaining qualifications after high school was similar between cohorts (41.0% in the CP group compared to 38.9% in the general population), with a similar proportion obtaining a University qualification (15.4 and 19.3%, respectively). Within the CP group, the odds of completing post-secondary education increased with better physical health scores (OR = 1.10, 95% CI: 1.04 to 1.17, p< 0.01). Mental health [PROMIS OR = 1.03, 95% CI: 0.99 to 1.08, p = 0.19; K10 OR = 1.05, 95%CI: 0.99 to 0.11, p = 0.11)] and pain (OR = 0.98, 95%CI: 0.82 to 1.18, p = 0.85) had little impact on the odds of completing post-secondary education within the CP group. Individuals with higher functional capacity (i.e., classified at Levels I or II on the functional classification systems and/or no intellectual disability) were more likely to obtain a post-secondary qualification (65.5%, 19/29) compared to those with categorized as medium (33.3%, 15/45) or low (0%, 0/9) capacity. Two thirds of individuals reported that their health affected their participation in education (68.9%, 62/90).
Impacts on education are summarized in Table 5. The following environmental factors were reported to somewhat or greatly affect participation in education: lack of access to transport (35.8%), lack of available education close by (30.7%) and lack of family help or assistance (21.5%). In addition, respondents reported that a lack of confidence (48.7%), along with not having required background experience or education were impediments (62.7%).
The rate of employment was much lower for participants with CP than young adults in the general population (32.6% compared to 75.8%), with a substantially higher rate of individuals with CP not being in the labor force (i.e., not working or looking for work: 49.4% compared to 16.0%). After adjusting for age and sex, the odds of employment were substantially lower for individuals with CP compared to those without CP (adjusted OR: 0.14, 95% CI:0.09 to 0.22, p < 0.01). For those working, reported job quality in the CP cohort was consistent with that reported in the general population with relatively low levels of adversity (Psychosocial Job Quality (28): job demand and complexity mean = 2.5 SD 1.3; job security mean = 3.6 SD 1.5; and job control mean = 2.7 SD 2.0 (see Table 4). The majority of employed young adults with CP reported working 20 hours or less in the last week across all jobs (57.7%, 15/26), with 46.4% of employed individuals expressing they wanted to work more hours (13/28).
In comparison to the prior study, there has been little change in the proportion of young adults with CP being employed (36.3%, compared with general population of 80.0%) or not being in the labor force (53.5%, compared with general population of 14.6%) (2).
Within the CP cohort, the odds of being employed increased with better physical health scores (OR = 1.06, CI: 1.01 to 1.13, p = 0.04). However, poorer mental health using the K10 measure was also associated with being employed (i.e., increased odds of being employed with higher K10 scores; OR = 1.06, CI: 1.00 to 1.12, p = 0.05); although the PROMIS mental health score indicated little association with employment status. In addition, reported pain had little impact on the odds of employment (OR = 0.99, 95% CI: 0.82 to 1.19, p = 0.91). Individuals with higher functional capacity (i.e., classified at Levels I or II on the functional classification systems and/or no intellectual disability) were more likely to be employed (55.9%, 19/29), compared to those categorized as medium (22.2%, 10/45) or low (0%, 0/10) capacity. Respondents commonly reported their long-term health affected their participation in work (72.7%, 64/88).
Other impacts on participation in employment included experiencing unfair treatment or discrimination during job-seeking, lack of transport, lack of available work close by and a lack of family support (see Table 5). Individual factors reported to somewhat or greatly impact employment included lack of confidence (50.7%) and not having appropriate qualifications or experience (71.0%).
Young adults with CP reported having a lower personal income than individuals in the general population, with 62.8% (32/51) reporting an annual income of $20,000 Australian dollars or less (before taxation), compared to 47.1% of those without CP. After adjusting for age and sex, there was a strong impact of CP on earning potential, with the odds of earning over $20,000 being lower for individuals with CP compared to those without CP (adjusted OR: 0.38, 95% CI: 0.20 to 0.69, p < 0.01). At the time of survey, ~70.6% (60/85) of individuals with CP were receiving money from the NDIS. Many respondents were receiving the Disability Support Pension (68.8%, 55/80), with a smaller proportion receiving the New Start or unemployment benefit (6.2%, 4/65) or other government benefits (22.8%, 13/57).
Partnered or Married
Very few young adults with CP were married or partnered at the time of survey (3.4%, 3/88); a proportion substantially lower than adults in the general population (31.6%), and lower than the prior study of young adults with CP (7.5%, compared to 47.9% in the general population at that time (2). In addition, none of the individuals with CP currently surveyed reported having any children (n = 88).
At the time of survey, a small proportion of young adults with CP reported living away from the parental home (12.5%, 11/88) compared to 51.8% of young adults in the general population. In comparison to the prior study, proportions living away from the parental home were lower for both the CP group (20.9%) and the general population (77.9%) (2).
Within the CP cohort, there was little association between the reported physical and mental health (PROMIS physical health OR = 1.01, 95% CI: 0.94 to 1.09, p = 0.77; PROMIS mental health OR = 1.00, 95% CI: 0.94 to 1.07, p = 0.99) and living away from the parental home. The PROMIS mental health result was consistent with the K10 measure of mental health. In addition, reported pain had little impact on the odds of living away from home (OR = 1.05, 95%CI: 0.80 to 1.35, p = 0.69). Those with a higher functional capacity (i.e., classified at Levels I or II on the functional classification systems and/or no intellectual disability) were more likely to be living away from home (18.2%, 6/33) compared to those categorized as medium (8.9%, 4/44) or low (10%, 1/10) functional capacity. When asked about having choice over their living situation, just over one third expressed they had complete choice over where they lived (35.3%) or who they lived with (34.5%; see Table 5).
In comparison to their similar aged peers, a higher proportion of young adults with CP were an active member of a club or association (41.4% compared to 30.0%), with a similar distribution of event attendance frequency between the two groups (see Table 4). Within the CP group, participation in community service tended to be low (22.7%, 20/88), with a very low rate of participation in religious services (77.0%, 67/87 never attend). Between half and two-thirds of respondents reported having complete choice over how they spend their time (62.8%), who they spend time with (58.8% complete) and how they spend their money (54.1%).
In relation to factors that may influence participation in community, on average, young adults with CP reported high levels of emotional/informational support, tangible support, affectionate support, and presence of positive social interactions (mean scores range: 74.3 to 92.1), however there was high variability in responses within the group (see Table 5).
Young adults had a lower mean life satisfaction score [Personal Well-being Index (30)] than similar aged peers without disability [mean = 66.3 (SD 23.3), compared with mean = 80.3 (SD 13.6) see Table 4]. Within the CP cohort, individuals reported high satisfaction with their standard of living (mean = 81.3, SD 19.8) and safety (mean = 80.3, SD 24.5). However, they reported lower satisfaction in their health (mean = 69.2, SD = 22.9), achieving in life (mean = 62.0, SD 27.9), being part of a community (mean = 66.4 (SD 26.2) and personal relationships (mean = 63.2, SD = 28.2).
Overview of Findings
The findings of this survey suggest that the social outcomes of young adults with CP remain significantly different than the general Australian population of the same age (18–25 years), with lower proportions obtaining higher education qualifications, gaining employment, being partnered, living away from the parental home and having reasonable finances. The only area in which there was evidence of greater participation in young adults with CP compared to the general population, was in community clubs and associations. Some explanatory variables were related to functional impairment, that is, having higher levels of functional capacity was associated with better outcomes. There is, however, also some evidence that physical health, mental health and presence of pain play a role in relation to participation. Although we did not have enough data for a robust evaluation of the influence of environmental factors on social outcomes, this group of young adults with CP reported impacts on their participation from known factors (38, 39), for example availability of transport and social supports.
One key and positive finding was that the proportion of young adults with CP completing foundational education has improved since the 2007 survey undertaken: from 50 to ~80%. This may relate to shifts in educational policy that has increasingly required inclusion of students with disability (40). Following completion of Year 12, however, the proportion undertaking further education was similar to the proportion in the prior study (2), and given the slightly older aged cohort in the 2007 study (mean age 24 years), this suggests that ongoing educational attainment may also be improving, however without an equivalent aged cohort it is difficult to tell. While impairments may limit capacity for further education for some young people, the respondents in the current study reported several other factors that acted to constrain their educational participation: lack of transport, availability of programs, social supports, confidence and prior experience or qualifications. Most of these factors are modifiable. In addition, the discrepancy between the 45.6% of participants who reported no intellectual disability or learning difficulty, and the 68.9% who reported health impacts on educational participation, requires further investigation regarding the additional health care supports that may be needed.
Employment outcomes for young adults with CP remain poor and do not appear to have changed in the past 13 years. This is consistent with evidence from broader disability research in Australia (41). Although those with higher functional capacity were more likely to obtain employment, some young adults in the work force (employed or looking for work) reported a range of difficulties associated with obtaining work (unfair treatment or discrimination), and a lack of resources and environmental supports affecting what they can do. Positively, when working, these young adults mostly reported psychosocial job quality in relation to job demands, security and control at very similar levels to their similar aged peers. Once again, health status was commonly identified by this group (73%) as impacting on their participation in employment. The suggestion that those who are working have higher levels of pain and mental health concerns, raises questions as to whether these are particularly resilient individuals, or if there is an impact on health from working. The finding that poorer mental health is associated with increased employment among people with CP is, however, hard to explain particularly as other literature shows that employment rates are low in groups with mental health conditions (42). Previous Australian research has shown that people with disability are more likely to have poor quality jobs than their non-disabled peers which has impacts on their mental health (43). However, our sample reported relatively good job quality. Further research exploring this outcome is needed. In addition, not having the appropriate experience or qualification for employment choices was identified as a potential barrier. Consistent with their reports of impacts on their participation in both education and employment, these young adults' satisfaction with “achieving in life” was also lower than data obtained in 2019 from a representative sample of 2000 Australians [mean = 62.0 compared with mean = 73.5; (44)]. These findings reinforce the importance of optimizing participation in education of young people with disability, both during mandated school years and beyond. Educational attainment at the level of the individual's capacity is a crucial resource for living, a finding highlighted in a recent studying examining what adults with CP identify as enablers of their success in adulthood (45).
Most young adults with CP are living in the parental home, compared to their similar-aged peers. Changes over time (i.e., a higher proportion still living with parents) may be explained by the slightly younger age cohort than in the prior study (2); we expect that more young adults will move out of home as they get older. In addition, the age at which young adults leave the parental home in Australia has increased in recent years, from 2001 when 37% of women, and 47% of men aged 18–29 years were living with a parent, up to 54 and 57% respectively, in 2017. Thus, the gap between those with and without CP is closing, because of changes in the general population, driven by economic (e.g., cost of housing, employment concerns for young adults) and social (e.g., increasing involvement in post-school education) factors (46). Most of the young people with CP in this study expressed that they had no, or only some, choice over where they lived or who they lived with—a finding that is at least partly explained by their continuing to live in the parental home. They also had high levels of satisfaction with their standard of living (mean = 81.3 CP cohort), similar to that of other Australians in 2019 (mean = 78.1) (44). Only a very small proportion were partnered or married. Difficulties in establishing social and sexual relationships have been reported previously (47, 48).
Community participation was the one domain in which young people with CP had higher proportions of participation—in clubs and community organizations—than those without CP. Dependent on the type of club, this may or may not provide opportunity to develop friendships and more intimate relationships. In addition, these young adults with CP indicated they were most likely to have “some” or “complete” choice over who they spent time with, how they spent their money and their time. Their reported personal wellbeing varied, however, depending on the aspect considered, with lower levels of satisfaction being expressed, in comparison to other Australians, in personal relationships (mean = 63.2, compared with 79.4), being part of a community (mean = 66.4, compared with 71.2), overall satisfaction (mean = 66.6, compared with 77.6), and health (mean 69.2 compared with 74.5).
Contribution to Literature/Knowledge
The age of adolescence has recently been proposed to extend well beyond 18 years, suggesting that the time required to achieve the tasks of that developmental period is also extended (49). Findings of this study for those without CP are consistent with that assumption, with high proportions of young adults continuing to live with parents, still undertaking education, and having limited financial resources. Young adults with neurodevelopmental disabilities have been reported to take even longer than their non-disabled peers to achieve developmental outcomes (50), with an implicit (and sometimes explicit) assumption that the reason for that sits solely within the individual—that is, it is impairment related. While some young adults with CP have severe or even profound intellectual and physical impairments, many do not: and social outcomes for all people occur as a result of the transactional exchanges that occur over time between people and context (51).
The environment matters. CP is a complex heterogeneous condition: many individuals with CP will require ongoing supports: indeed, in this study, only 25–30% had no difficulty and did not require aids or equipment to support their independence in self-care, domestic activities or general management. Given that participation is strongly influenced by the person-environment fit (52), the ongoing large discrepancies in participation outcomes between young adults with CP and their peers suggests more needs to be done to build supportive environments and to work toward meeting our obligations in relation to the United Nations Convention on the Rights of Persons with Disability (53).
The substantial increase in the proportion of young people with CP completing foundational education is very positive and provides an important opportunity for young people to be set on a strong path following school leaving. However, attendance at school, while positive, is not enough: the extent to which young people are engaged in learning and provided with the scaffolded experiences that support their incremental skill development is critical. The young adults with CP in this study reported that lack of confidence was a factor in both their educational and employment participation and that they were not as satisfied with their achievements in life as other Australians. Adults with CP have described needing pathways for developing competence, acceptance and support in school life and skills for making friends (45): these early formative experiences, along with an expectation that they will take part in society from parents, teachers and themselves, (45) provide a foundation for adulthood successes, when the needed contextual supports are also in place.
Despite around 70% of participants reporting having individualized NDIS funding, tangible supports, like accessible transport, availability of suitable education or work and social supports, were commonly reported to be a barrier. Prior research reports varied experiences of the NDIS, with some individuals greatly valuing the additional opportunities afforded for autonomy and participation, and others experiencing great difficulty with accessing and using the scheme in ways that meet their preferences (14). There are high hopes for the NDIS to close the participation gap and social outcomes for people with disability but also concerns about implementation, cost and sustainability (54). Currently we need a stronger body of evidence-based approaches and a more sophisticated evaluation of outcomes than is currently available to inform decisions about what works for whom, and when.
Employment outcomes for many young people with neurodevelopmental disabilities have remained poor over a long period, despite evidence being available about what is needed for improvement. Sheppard et al. (41) describe six key principles to supporting the transition from school to employment for those with disability: (1) the expectation that young people can work; (2) collaboration across sectors; (3) participation in meaningful work during the school years; (4) skills development (of all those involved in school transitions); (5) family involvement; and (6) early transition planning.
The relatively high prevalence of mental health concerns in this group, along with presence of pain and fatigue for more than 50% of individuals suggest greater attention is needed to ensure good quality healthcare in early adulthood. In this sample, nearly 40% had yet to transfer from paediatric to adult health care services. The gap in consistent quality healthcare for adults with CP has been recognized, with significant attention in recent years to transition planning (55). Best practice principles for effective healthcare transition are similar to those for transitioning to employment: (1) collaboration across health systems; (2) capacity building in people and communities starting early; (3) supported navigation (that involves family) through the process; (4) accessible information and resources; and (5) education for young people, parents and healthcare professionals (56).
Participation in meaningful life situations is a fundamental right of all people. Young adults with CP may experience a range of impairments of body functions and structures, but if provided with appropriate supports, participation is possible in many aspects of life. There is good evidence that participation outcomes are influenced by interventions delivered in real-world contexts that are tailored to address the individual-context fit to provide the necessary supports to ensure that learning and engagement are effective (57, 58).
This descriptive study used survey methods and did not achieve a strong response rate [110 returned surveys of 649 VCPR known eligible participants (16.9%)]. Of these only 90 were usable. Along with item-level missing data, this meant that some questions had incomplete information and limited the possible analyses and interpretations. Use of population-based comparative data provided evidence that the sample was broadly representative of the population of those with CP living in Victoria. The potential for response bias is acknowledged, however, the direction of any bias is unknown. A larger cohort of participants would have allowed a more detailed analysis of the factors influencing participation in key aspects of life, and potentially allowed subgroup analyses for some outcomes (e.g., determinants of employment). Our categorisation of functional capacity into three levels may be critiqued, however, it did provide a mechanism for considering a constellation of functional capacities given that individuals with CP may experience varied severity of impairment across functional domains. A more detailed questioning of NDIS supports would have been valuable, given just over 70% of participants were receiving some funding. In addition, the standard questions included in this survey about being partnered or married and presence of social and emotional supports, did not capture information about friendships and intimate relationships—areas in which young people with CP and their parents have previously expressed dissatisfaction (7, 45). This survey sought to replicate data that is commonly sought when measuring “outcomes in adulthood” implicitly labeling participation success as having further education and training, being employed, partnered and living out of the parental home. These are inherent cultural biases that can be perpetuated through research, unless the work is grounded in consumer perspectives.
Implications for Practice, Policy, Research
There is an ongoing need for attention to be given to supporting young people with CP to achieve meaningful participation. Using evidence already available to us (58), stronger pathways to employment (41) and community (38) participation can be built.
The advantage of survey methods is the capacity to reach—potentially—large numbers of participants who are geographically dispersed. Future surveys are likely to be more helpful, however, if there is greater involvement of young adults with CP, their parents and other support people in their development to ensure that their lived experiences assists in designing surveys in which; (1) the most important (or a broader range of) life situations are asked about; (2) significant individual and environmental influences on outcomes are captured; and (3) methods of engaging with individuals are broader (e.g., delivered as an interview) to ensure that those who are able to provide their own, rather than a proxy response, can do so. In addition, surveys that are followed up by more in-depth interviews with those who can provide rich information about specific life situations will provide more nuanced knowledge to inform policy and practice.
Findings of this study indicate substantial increase in the proportion of young people with CP completing school since the prior study in 2007, but less evidence of improved participation outcomes in employment or living situation. This is over a decade in which substantial disability policy reform has occurred in Australia; but there is still much work to be done. Closing the gap between those with and without CP will require addressing multiple issues at the individual level including reducing pain, improving mental health and building confidence and self-esteem. Environmental and contextual changes are an imperative to achieve the vision of an inclusive society where people with disability have the same opportunity as others to live productive and meaningful lives.
Data Availability Statement
The datasets presented in this article are not readily available because we did not seek participant consent for re-use of the data. Requests to access the datasets should be directed to firstname.lastname@example.org.
The studies involving human participants were reviewed and approved by Australian Catholic University Human Research Ethics Committee. The patients/participants provided their written informed consent to participate in this study.
CI, DR, and AK conceived and designed the study and obtained the grant funding. CI led the development of the survey, supervised the data collection phase, and drafted the manuscript. DS undertook data cleaning and analyses. All authors contributed to the interpretation of findings, reviewed and contributed to the preparation of the manuscript, and approved the final version.
This study received funding from the Disability Research Initiative from the University of Melbourne. The research was undertaken under the auspices of two Australian National Health and Medical Research Council funded Centres for Research Excellence: CRE-Cerebral Palsy (APP1057997) and the Australian Centre for Health, Independence, Economic Participation and Value Enhanced Care for adolescents and young adults with CP (CP-Achieve) (APP1171758). The authors acknowledge the support provided by the Victorian Cerebral Palsy Register, funded by the Royal Children's Hospital Foundation and Victorian Department of Health. The funding agencies were not involved in the conduct of the study or interpretation or reporting of the findings. This study uses unit record data from the Household Income and Labour Dynamics in Australia (HILDA) survey. The HILDA project was initiated and is funded by the Australian Government Department of Social Services and managed by the Melbourne Institute at the University of Melbourne.
The findings and views reported in this paper based on access to HILDA data are those of the authors and should not be attributed to either the Department of Social Services or the Melbourne Institute.
Conflict of Interest
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
We thank and acknowledge the participants of this study, and their support people, who gave their time and information in the completion of the surveys. We also acknowledge and thank our research assistants, Anna Atkinson and Jesse Taylor.
3. Frisch D, Msall ME. Health, functioning, and participation of adolescents and adults with cerebral palsy: a review of outcomes research. Dev Disabil Res Rev. (2013) 18:84–94. doi: 10.1002/ddrr.1131
4. Alriksson-Schmidt A, Hagglund G, Rodby-Bousquet E, Westbom L. Follow-up of individuals with cerebral palsy through the transition years and description of adult life: the Swedish experience. J Pediatr Rehabil Med. (2014) 7:53–61. doi: 10.3233/PRM-140273
5. Boucher N, Dumas F, Maltais DB, Richards CL. The influence of selected personal and environmental factors on leisure activities in adults with cerebral palsy. Disabil Rehabil. (2010) 32:1328–38. doi: 10.3109/09638280903514713
7. van Gorp M, Van Wely L, Dallmeijer AJ, de Groot V, Ketelaar M, Roebroeck ME, et al. Long-term course of difficulty in participation of individuals with cerebral palsy aged 16 to 34 years: a prospective cohort study. Development Med Child Neurol. (2019) 61:194–203. doi: 10.1111/dmcn.14004
8. Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M. A report: The definition and classification of cerebral palsy April 2006. Development Med Child Neurol. (2007) 49:8–14. doi: 10.1111/j.1469-8749.2007.tb12610.x
10. van Gorp M, Hilberink SR, Noten S, Benner JL, Stam HJ, van der Slot WMA, et al. Epidemiology of cerebral palsy in adulthood: a systematic review and meta-analysis of the most frequently studied outcomes. Archiv Physic Med Rehabil. (2020) 101:1041–52. doi: 10.1016/j.apmr.2020.01.009
11. Deloitte Access Economics. The cost of cerebral palsy in Australia in 2018. Sydney, Australia: Report prepared for Cerebral Palsy Australia, Cerebral Palsy Alliance and The Australasian Academy of Cerebral Palsy and Developmental Medicine (2020).
12. Council of Australian Governments. 2010–2020 National Disability Strategy2011 March 2021. Available online at: https://www.dss.gov.au/sites/default/files/documents/05_2012/national_disability_strategy_2010_2020.pdf (accessed November 29, 2021).
13. Reddihough DS, Meehan E, Stott NS, Delacy MJ, Australian Cerebral Palsy Register G. The national disability insurance scheme: a time for real change in Australia. Dev Med Child Neurol. (2016) 58:66–70. doi: 10.1111/dmcn.13007
14. Carey G, Malbon E, Olney S, Reeders D. The personalisation agenda: The case of the Australian national disability insurance scheme. Int Rev Sociol. (2018) 28:20–34. doi: 10.1080/03906701.2018.1425084
15. van Wely L, van Gorp M, Tan SS, van Meeteren J, Roebroeck ME, Dallmeijer AJ. Teenage predictors of participation of adults with cerebral palsy in domestic life and interpersonal relationships: a 13-year follow-up study. Res Dev Disabil. (2020) 96:103510. doi: 10.1016/j.ridd.2019.103510
16. Schmidt AK, van Gorp M, van Wely L, Ketelaar M, Hilberink SR, Roebroeck ME. Autonomy in participation in cerebral palsy from childhood to adulthood. Development Med Child Neurol. (2019) 62:363-71. doi: 10.1111/dmcn.14366
18. World Health Organization. International Classification of Functioning, Disability and Health (ICF). WHO (2001). Available online at: https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health (accessed November 29, 2021).
21. Stewart D, Stavness C, King G, Antle B, Law M, Stewart D, et al. A critical appraisal of literature reviews about the transition to adulthood for youth with disabilities. Phys Occup Ther Pediatr. (2006) 26:5–24. doi: 10.1080/J006v26n04_02
22. Palisano RJ, Rosenbaum P, Bartlett D, Livingston MH. Content validity of the expanded and revised gross motor function classification system. Development Med Child Neurol. (2008) 50:744–50. doi: 10.1111/j.1469-8749.2008.03089.x
23. Eliasson AC, Krumlinde-Sundholm L, Rösblad B, Beckung E, Arner M, Öhrvall AM, et al. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Develop Med Child Neurol. (2006) 48:549–54. doi: 10.1017/S0012162206001162
24. Hidecker MJC, Paneth N, Rosenbaum PL, Kent RD, Lillie J, Eulenberg JB, et al. Developing and validating the Communication Function Classification System for individuals with cerebral palsy. Develop Med Child Neurol. (2011) 53:704–10. doi: 10.1111/j.1469-8749.2011.03996.x
25. Tschirren L, Bauer S, Hanser C, Marsico P, Sellers D, van Hedel HJ. The Eating and Drinking Ability Classification System: concurrent validity and reliability in children with cerebral palsy. Develop Med Child Neurol. (2018) 60:611–7. doi: 10.1111/dmcn.13751
26. Katzan IL, Lapin B, PROMIS GH. (Patient-reported outcomes measurement information system global health) scale in stroke: a validation study. Stroke. (2018) 49:147–54. doi: 10.1161/STROKEAHA.117.018766
31. Harris PA, Taylor R, Minor BL, Elliott V, Fernandez M, O'Neal L, et al. The REDCap consortium: building an international community of software platform partners. J Biomed Inform. (2019) 95:103208. doi: 10.1016/j.jbi.2019.103208
32. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. (2009) 42:377–81. doi: 10.1016/j.jbi.2008.08.010
33. Summerfield M, Bright S, Hahn M, La N, Macalalad N, Watson N, et al. HILDA User Manual—Release 18. Melbourne, Australia: Melbourne Institute: Applied Economic and Social Research, The University of Melbourne (2019).
34. Department of Social Services. “The Household, Income and Labour Dynamics in Australia (HILDA) Survey, GENERAL RELEASE 19 (Wave 1-19),” In: Research MIoAEaS, editor. ADA Dataverse V5 ed. The Unviersity of Melbourne (2020).
36. Greenland S, Senn SJ, Rothman KJ, Carlin JB, Poole C, Goodman SN, et al. Statistical tests, P values, confidence intervals, and power: a guide to misinterpretations. Eur J Epidemiol. (2016) 31:337–50. doi: 10.1007/s10654-016-0149-3
38. McKenzie G, Willis C, Shields N. Barriers and facilitators of physical activity participation for young people and adults with childhood-onset physical disability: a mixed methods systematic review. Dev Med Child Neurol. (2021). 63:914-24. doi: 10.1111/dmcn.14830
39. Shahin S, Reitzel M, Di Rezze B, Ahmed S, Anaby D. Environmental factors that impact the workplace participation of transition-aged young adults with brain-based disabilities: a scoping review. Int J Environ Res Public Health. (2020) 17:378. doi: 10.3390/ijerph17072378
40. Department of Education Training. Inclusive education for all students with disabilities and additional needs: The government's response to the review of the program for students with disabilities2016 1 July 2021. Available online at: https://www.education.vic.gov.au/Documents/about/department/PSD-Review-Response.pdf (accessed November 29, 2021).
41. Sheppard L, Harrington, R, Howard, K,. Effective school to employment transitions. Research to Action Guide, Rapid Review. (2017). Available online at: http://www.cadr.org.au (accessed July 23, 2021).
43. Milner A, Krnjacki L, Butterworth P, Kavanagh A, LaMontagne AD. Does disability status modify the association between psychosocial job quality and mental health? a longitudinal fixed-effects analysis. Soc Sci Med. (2015) 144:104–11. doi: 10.1016/j.socscimed.2015.09.024
44. Khor S, Cummins RA, Fuller-Tyszkiewicz M, Capic T, Jona C, Olsson CA. Australian Unity Wellbeing Index: Report 36: Social connectedness adn wellbeing. (2020). Available online at: http://www.acqol.com.au/projects#reports (accessed July 23, 2021).
45. Gaskin CJ, Imms C, Dagly G, Msall ME, Reddihough DS. Successfully negotiating life challenges: Learnings from adults with cerebral palsy. Qual Health Res. (2021) 21:449. doi: 10.1177/10497323211023449
46. Wilkins R, Lass, I,. The Household, Income Labour Dynamics in Australia Survey: Selected findings from Waves 1 to 16. (2018). Available online at: https://melbourneinstitute.unimelb.edu.au/__data/assets/pdf_file/0009/2874177/HILDA-report_Low-Res_10.10.18.pdf (accessed February 1, 2021).
47. Wiegerink DJ, Roebroeck ME, Donkervoort M, Stam HJ, Cohen-Kettenis PT. Social and sexual relationships of adolescents and young adults with cerebral palsy: a review. Clin Rehabil. (2006) 20:1023–31. doi: 10.1177/0269215506071275
48. Wiegerink DJ, Roebroeck ME, van der Slot WMA, Stam HJ, Cohen-Kettenis PT, Grp SWNTR. Importance of peers and dating in the development of romantic relationships and sexual activity of young adults with cerebral palsy. Dev Med Child Neurol. (2010) 52:576–82. doi: 10.1111/j.1469-8749.2010.03620.x
51. King G, Imms C, Stewart D, Freeman M, Nguyen TA. transactional framework for pediatric rehabilitation: shifting the focus to situated contexts, transactional processes, and adaptive developmental outcomes. Disabil Rehabil. (2018) 40:1829–41. doi: 10.1080/09638288.2017.1309583
52. Imms C, Granlund M, Wilson PH, Steenbergen B, Rosenbaum PL, Gordon AM. Participation, both a means and an end: A conceptual analysis of processes and outcomes in childhood disability. Developmental Medicine & Child Neurology. (2017) 59:16–25. doi: 10.1111/dmcn.13237
53. UN General Assembly,. Convention on the rights of persons with disabilities 2007 3 October (2019). Resolution/adopted by the General Assembly. (2019). Available online at: https://www.refworld.org/docid/45f973632.html (accessed January 24, 2007).
55. Lilly H, Bitzel M, Pejnovic T, Schnell J, Doty A. Barriers and characteristics for successful transition to adult healthcare for individuals with cerebral palsy: a systematic review. Physic Therapy Rev. (2019) 24:195–207. doi: 10.1080/10833196.2019.1662995
56. Stewart D, Freeman, M, Law, M, Healy, H, Burke-Gaffney, J, Forhan, M, . The Best Journey to Adult Life for Youth With Disabilities: An Evidence-based Model Best Practice Guidelines for the Transition to Adulthood for Youth With Disabilities. (2009). Available online at: https://www.canchild.ca/system/tenon/assets/attachments/000/000/688/original/BJAmodelandbestpracticeguidelinespdf2009.pdf (accessed September 20, 2015).
57. Anaby D, Vrotsou K, Kroksmark U, Ellegard K. Changes in participation patterns of youth with physical disabilities following the Pathways and Resources for Engagement and Participation intervention: a time-geography approach. Scand J Occup Ther. (2020) 27:364–72. doi: 10.1080/11038128.2018.1554088
58. Anaby D, Khetani M, Piskur B, van der Holst M, Bedell G, Schakel F, et al. Towards a paradigm shift in pediatric rehabilitation: Accelerating the uptake of evidence on participation into routine clinical practice. Disabil Rehabil. (2021) 2021:1–12. doi: 10.1080/09638288.2021.1903102
Keywords: economic participation, social outcomes, life satisfaction, survey method research, cerebral palsy, young adult
Citation: Imms C, Reddihough D, Shepherd DA and Kavanagh A (2021) Social Outcomes of School Leavers With Cerebral Palsy Living in Victoria. Front. Neurol. 12:753921. doi: 10.3389/fneur.2021.753921
Received: 05 August 2021; Accepted: 16 November 2021;
Published: 14 December 2021.
Edited by:Mark D. Peterson, University of Michigan, United States
Reviewed by:Felippe Borlot, Alberta Children's Hospital Research Institute (ACHRI), Canada
Jill Edith Cadwgan, Evelina London Children's Hospital, United Kingdom
Copyright © 2021 Imms, Reddihough, Shepherd and Kavanagh. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
*Correspondence: Christine Imms, email@example.com