Understanding and optimising participation in people with childhood onset disability across the lifespan
Research in this field encompasses conceptual work to further understand the concept and measurement of participation; a longitudinal study of participation patterns in activities outside school; qualitative studies of experiences of family social participation and participation aspirations of people with cerebral palsy; development and validation of participation measures; and studies that test intervention models and processes that enhance participation outcomes. The goals of this program of work are to optimise participation outcomes for children, adults and their carers across the lifespan.
Project team: Professor Christine Imms, Dr Brooke Adair, Ms Maria Sicari, Mr Koki Miyazaki, Professor Sheena Reilly (Griffith University), Professor John Carlin (Murdoch Childrens Research Institute), Professor Karen Dodd (La Trobe University).
The primary objective of this project was to explore the longitudinal participation patterns of Victorian children with cerebral palsy. A secondary aim was to investigate the impact of key transition points (such as the transition from primary to secondary school) on participation levels. A prospective, longitudinal, population-based study was undertaken. Participation was measured using the Children's Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activity of Children (PAC) questionnaires. In addition semi-structured interviews were held with participants so they could tell us about their participation levels, aspirations and achievements. Victorian youth with cerebral palsy who were born in 1994/95 were eligible to take part in this study. The study began in 2006 and has been going for nine years, with up to five assessment points over this time. The overall findings indicated that: a large amount of individual variation occurred in participation patterns; youth increased their participation diversity and intensity of social activities over time; youth decreased their participation diversity; intensity and their preferences for recreational, active physical and skill-based activities; youth showed reduced preferences for participation in skill-based activities; and the levels of enjoyment of the activities the youth were doing remained stable, and was generally high. These findings are important in considering the key aspects of facilitating participation in activities outside school, and how to work towards maintaining participation in preferred activities. These findings can also support intervention planning in relation to promoting participation outcomes for youth with cerebral palsy.
Project team: Professor Christine Imms, Dr Brooke Adair, Dr Elspeth Froude, Professor Nora Shields (La Trobe University), Professor Peter Wilson, Ms Maria Sicari, Mr Koki Miyazaki, and the following students of La Trobe University: Ms Rachel Chin, Ms Sarah McMullen, Mr Matthew King, Ms Monica Black, Ms Carmen Woodmansee.
The aims of this study were to describe normative data about the participation of children and adolescents with typical development, to describe their patterns of participation by age and gender and to investigate the personal and environmental characteristics that influence the extent of their participation in activities outside school. This cross-sectional study included 422 children from Victoria, aged 6 to 18 years. Measures included the Children's Assessment of Participation and Enjoyment and the Preferences for Activity of Children which quantify participation in Recreational, Active -physical, Social, Self-improvement and Skill-based activities. A tailored questionnaire captured the personal and environmental characteristics of participants, including gender, age, body mass index, school type, socio-economic advantage/disadvantage and location of residence. Linear regression analyses were conducted to determine predictors of participation diversity and participation preferences. The results suggested that there was a reduction in the number and enjoyment of Recreational activities with increasing age in children and adolescents with typical development. In contrast, there was relative stability in intensity, frequency and preference scores across the age-groups for other activity types. Different patterns of participation were found between male and female participants for Social, Skill-based and Self-improvement activities. In general, the childs preferences for activities were found to be the most common predictor for their involvement in the five different activity types, while age, gender and school style occasionally had an impact. Participation preference scores were associated with age, gender and school style. Because activity preference plays a key role in determining the extent of participation in activities outside school, factors that influence the development of preferences in children are important to understand if we are to effectively support young people to establish lifelong participation habits and subsequent involvement in health-promoting activities.
Project team: Professor Christine Imms, Dr Brooke Adair, Professor Deb Keen (Griffith University), Professor Peter Rosenbaum (McMaster University), Professor Mats Granlund (CHILD), Ms Maria Sicari.
This project is a series of systematic reviews of the literature that aim to investigate how best to conceptualise and measure participation in childhood disability to inform future research. Participation was defined by the World Health Organisation, in 2001, within its International Classification of Functioning, Disability and Health (ICF) as "involvement in a life situation" (p.11 WHO, 2001). Life situations in which people want to, need to or have to be involved in, can include education, leisure, work, personal and daily living activities, that occur at home or in the community. Ultimately, the goal for all young people growing up with a disability or with disadvantage, is that they are able to interact effectively within their communities and to achieve their life aspirations for education, work, leisure and relationships to their satisfaction. Therefore, participation is a key outcome of health and education services for all people, regardless of their age or state of health.
We know that using the World Health Organisations definition of participation in research has been difficult because different researchers have understood what is meant by 'involvement' and 'life situations' differently, thus comparing research findings is compromised, because the measures used to assess participation differ widely.
To date we have published two systematic reviews and a third is in progress, along with a more detailed conceptual paper. Our first published systematic review demonstrated that individually tailored education and mentoring/coaching programs can enhance participation and that intervention programs that focused on participation were more effective than those that focused on improving other aspects of the child but sought changes in participation.
The second review found that the language used to describe participation in research was inconsistent. There was also a disconnection between participation language and the outcome measures chosen in the research. In this review we used the themes from the participation language analysis to build a model of model of Participation and Participation-Related constructs. This model identifies the two key elements of participation as: attendance and involvement. Attendance is defined as being there and measured as frequency of attending and or the range of activities done. Involvement is the experience of participation while attending including elements of persistence, motivation and affect, and it may or may not involve an experience of social connection. The related constructs include activity competence, sense of self (e.g. self-determination, self-esteem) and preferences. Each of these might change as a result of participation, and each might influence future participation, but they are not, in of themselves, participation.
The objectives of the current review are three-fold: 1) to identify measures of key participation constructs for children with childhood onset impairment or chronic health conditions; 2) to identify and critically evaluate studies that assessed the reliability and validity of these measurement tools; and 3) to map the content of the identified tools to the participation model described in the second review to determine whether they measure attendance, involvement, preference, sense of self, activity competence or an aspect of the environment. Structured database searches will be employed to locate the relevant articles for to address each of the study aims. It is anticipated that the results of this study will provide researchers and clinicians with a better understanding of the various facets of participation quantified by available outcome measures as well as their psychometric properties.
Listen to Peter Rosenbaum and Bernard Dan (Editors for Developmental Medicine and Child Neurology) discuss this paper and have an engaging conversation about the concept of participation and what it means for children with disability.
Project team: Professor Christine Imms, Dr Brooke Adair, Ms Erin Stevenson.
This study aims to validate the Young Childrens Participation and Environment Measure (YC-PEM) and the Participation and Environment Measure for Children and Youth (PEM-CY) by investigating the equivalency of their scores to determine whether the PEMs can be used interchangeably with children aged 5 years. This instrumentation study uses a mixed methods approach (survey methods and a brief telephone interview) to collect data from parents of 5 year old children. Participants will be randomly allocated to receive one of the two participation measures first. Following a two week break the second measure will be completed. The results from this study will inform clinicians and researchers about the equivalency of the PEMs and the most appropriate version to utilise with children. If the measures are equivalent it is possible that they may be used in longitudinal studies to track participation over time. Preliminary results suggest that the level of education of the child needs to be considered when selecting which PEM is most appropriate.
Project team: Professor Christine Imms, Dr Brooke Adair, Dr Claire Kerr, Ms Andrea Morris.
Physical activity is important for health and wellbeing for all people, nonetheless children with disability have been found to participate in less activity than their unimpaired peers. Previous studies have reported on supports of barriers to physical activity but little information exists to understand how to best support children with disabilities in sustained/ongoing physical activity. The current study aims to investigate the factors associated with sustained participation in physical activity by children and youth with cerebral palsy. This study will employ qualitative methods to explore what adolescents with cerebral palsy describe as factors that influence their ongoing involvement in physical activity. To enrich our results we will also interview the parents of the child as well as their coach. It is anticipated that the current study will help to identify facilitators to sustained participation in physical activity for adolescents with cerebral palsy. The results from this study will help to inform future studies on this topic.
Project team: Dr Helen Bourke-Taylor, Dr Sarah Wilkes-Gillan, Ms Kahli Joyce.
The APS is a brief scale developed to measure the extent and type of assistance that children with disability require from their parent in order to participate in home or community based play and leisure. The parents’ contribution to a child’s ability to participate can easily be estimated and measured using this scale, however the extent of assistance required by typically developing young children has not been determined. The APS may be downloaded here and is freely available by contacting the first author. This study will implement online survey design and recruit around 150 Australian parents of 3-9 year olds to create normative data. Other instruments will measure parental support to participate in instrumental daily activities such as self-care, mobility, social functioning and school related tasks as well. The results of this study will provide a comparison for future research that explores enablers and barriers to participation in play and leisure for children with disabilities and chronic medical conditions.
Project team: Dr Helen Bourke-Taylor, Ms Claire Cotter (Manager Cerebral Palsy Education Centre).
The research project was a qualitative study that involved interviewing 47 people about their perspective of the experience of students with cerebral palsy who were attending in local schools. The rigorous research involved analysis of interviews including: 7 students; 11 parents; 10 teachers; 9 principals; 10 allied health therapists. Fact sheets have been configured and are freely available in a first step dissemination of findings for immediate use by students, parents, schools and therapists. Fact sheets are available in the CPEC website and journal articles are currently under construction for future publication. Visit the CPEC webste.
Project team: Dr Helen Bourke-Taylor; Associate Professor Julie Pallant (Griffith University), Associate Professor Reinie Cordier (Curtin University).
Children with disability are known to exhibit challenging behaviours at a higher rate that than typically developing children. Challenging behaviour is known to negatively impact the child’s participation and the wellbeing of parents or carers. Early detection of challenging behaviours such as rejection of others carers, aggression, violence or frequent discontent state is imperative so that services can be initiated for families. The CCBS-2 measures mother’s experience of challenging behaviour exhibited by her child.The CCBS-2 is freely available and may be downloaded here. The behaviours are associated with compromised mental health and caregiving capacity. The study collected data on a sample of 332 Australian 3-9 year old children to establish norms for typically developing children and establish criterion validity with other more lengthy scales. The CCBS-2 may be developed as a family centred surveillance tool to assist in the identification and prioritization of mother-child dyads at risk and in need of behavioural interventions. Such interventions minimize the families risk for reduced participation in enjoyable activities and inclusion at school and the community.