“Psychosocial” refers to the psychological and/or social effects on individuals and other people’s attitudes and perceptions. For example, studying and finding better ways of delivering care may lessen the impact (i.e., stress) of the child’s disability on the child, family, and its individual members. Psychosocial research may also help children and families to develop the skills needed to adjust and function with minimum distress.

The table contains a list of some of the psychosocial research projects on which TVCC staff members were named investigators. Abstracts, publications, and presentations of the projects are listed below.

• Names of present TVCC staff members are bolded and italicized.
• Names of past TVCC staff members are italicized only.

Publications that have resulted from these selected projects are also listed. For more information on how to obtain a copy of an article, please see Accessing Journal Articles.

List of Psychosocial Projects

Early experiences and participation patterns of children with Developmental Coordination Disorder
Investigators: C. Missiuna, M. Law, G. King, & S. King
Affiliation of Collaborators: CanChild Centre for Childhood Disability Research
Funding: Canadian Institutes of Health Research, and Social Sciences and Humanities Research Council of Canada, 2000-2002, $54,800
Status: Completed
     Children who are so clumsy that they are unable to perform age-appropriate academic tasks and self-care activities have a syndrome known as Developmental Coordination Disorder (DCD). Children with Developmental Coordination Disorder (DCD) represent 5 to 6% of the school-aged population and are at risk for a number of secondary academic, social, and self-concept difficulties. Despite its prevalence, DCD is often unrecognized in the school system, and the needs of children are not addressed. In this qualitative research study, 13 parents of school-aged children who met the criteria for DCD, were asked about their observations and experiences during the preschool years and through the diagnostic process. Parents of school-aged children with DCD who are at various stages of the identification and intervention process were asked to share their observations about what they noticed and were concerned about in the preschool and early school years. Analysis of the study findings led to three primary themes that captured the experience of parents as they attempted to understand and get help for their child. The theme of unravelling the mystery highlights parents' impressions of their child's difficulties. The second theme of negotiating the maze refers to the many pathways followed by families as they sought to affirm their perceptions and obtain services for their child and the final theme of parenting dilemmas underscores some of the common challenges faced by parents in trying to deal with their child's limitations.
     Study findings highlighted that these, often very bright, students struggled hard to produce in the classroom, with varied teacher responses. Outside the classroom, many children experienced social, self-concept, and emotional problems. Despite the support of some excellent teachers, families felt that the educational system displayed a lack of understanding and responsiveness to their child's needs. Implications of these findings include the importance of teachers in identifying children and modifying classroom environments, and the necessity of improving the responsiveness of the educational system to their needs. For occupational therapists, the study findings illustrate the importance of focusing on occupational performance issues for children with DCD, facilitating the understanding of parents, and the need for early intervention.
Publications:
      Missiuna, C., Moll, S., Law, M., King, S., & King, G. (2006). Mysteries and mazes: Parents’ experiences of developmental coordination disorder. Canadian Journal of Occupational Therapy, 73, 7-17.
     Missiuna, C., Moll, S., King, S., Law, M., & King, G. (2006). “Missed and misunderstood”: Children with coordination difficulties in the school system. International Journal of Special Education, 21, 53-67.
     Missiuna, C., Moll, S., King, S., King, G., & Law, M. (2007). A trajectory of troubles: Parents’ impressions of the impact of developmental coordination disorder. Physical & Occupational Therapy in Pediatrics, 27(1), 81-101.
Presentations:
     Moll, S., Missiuna, C., King, G., King, S., & Law, M. (2002, April). Mysteries and mazes: Parents’ perspectives on developmental coordination disorder. Presented at the Qualitative Health Research Conference, Banff, AB.
     Missiuna, C., Moll, S., Law, M., King, G., & King, S. (2002, June). New strategies to encourage earlier identification of children with developmental coordination disorder. Presented at the World Federation of Occupational Therapists’ Conference, Stockholm, Sweden.
     Missiuna, C., Moll, S., Law, M., King, G., & King, S. (2002, November). Improving identification of children with developmental coordination disorder: Understanding the clues. Presented at the Ontario Association of Children’s Rehabilitation Services meeting, Richmond Hill, ON.
      Missiuna, C., Moll, S., Law, M., King, G., & King, S. (2003, September). Early experiences and participation patterns of children with Developmental Coordination Disorder. Presented at the American Academy of Cerebral Palsy and Developmental Medicine Annual Meeting, Montreal, QC.
     Missiuna, C., Moll, S., Law, M., King, G., & King, S. (2004, June). Early experiences and participation patterns of children with developmental coordination disorder. Presented at the Canadian Association of Occupational Therapists’ Conference, Charlottetown, PEI.

Evaluating the mental health of children and youth with Duchenne's Muscular Dystrophy (DMD): Phase One
Investigators: L. Taylor, J. Gray, B. Lyttle, P. McGrath, M. Steeles, & C. Young
Affiliations of Collaborators: Children’s Hospital of Western Ontario, The University of Western Ontario, London Health Sciences Centre
Funding: Thames Valley Children's Centre Research Award, 2000-2003, $5,000
Status: Completed
     Duchenne’s Muscular Dystrophy (DMD) is the most common hereditary neuromuscular disease, affecting 1 out of every 3,500 males. DMD is an X-linked recessive disorder of the muscles that causes progressive muscle weakness as muscle cells are broken down and gradually lost. TVCC Investigators observed that four out of six individuals referred with DMD also had a psychiatric disorder. A focus group of interdisciplinary DMD team members at Thames Valley Children’s Centre discussed the mental health of individuals with DMD and the potential contributing factors, which include medical symptoms such as respiratory function and pain, and social factors such as family communication, parental stress, marital functioning, support systems, and finances. This study is the initial phase of a comprehensive study of children with DMD. The ultimate objectives are to determine the status of mental health, pain experience, and quality of life among children with DMD and their families at different life stages. In this pilot project, the objectives were: (1) to determine the levels of depression and anxiety in the parents of children with DMD, and (2) to assess the parental stress and family functioning in families with a  child with DMD.
     Ten children between the ages of 8 and 15 years were randomly chosen to participate using a block randomization design. Both children and parents were administered questionnaires.
     Results indicated that more than half of the families had a parent with depression or anxiety. Seven of the families had high levels of overall parenting stress. Nine of the ten families had a child with comorbid psychiatric diagnosis, which included anxiety disorders, attention deficit hyperactivity disorder, or mental retardation. The majority of children did not identify high levels of anxiety, depression, or self-concept problems on self-report measures. Only one family of a child with a comorbid psychiatric diagnosis did not have any parental depression, anxiety or significant stress. Only one family had a child with no comorbid psychiatric diagnosis and no problems identified in the parent.
     In conclusion, significant parenting stress is present in the majority of parents with children with DMD. More than half of the families had a parent with depression or anxiety. Children with DMD and their parents are at significant risk for mental health problems.
Presentations:
     Steele, M., Taylor, E., Young, C., Davidson, B., & McGrath, P. (2003, January). Family functioning with a child who has Duchenne muscular dystrophy (DMD): A pilot study. Presented at the Ontario Psychiatric Association Conference, Toronto, ON.
     Steele, M., Taylor, E., Young, C., Davidson, B., & McGrath, P. (2003, May). Family functioning with a child who has Duchenne muscular dystrophy: A pilot study. Presented at the Child and Youth Health, Third World Congress, Vancouver, BC.
     Steele, M., Taylor, E., Davidson, B., McGrath, P., & Lyttle, B. (2003, November). Family functioning with a child who has Duchenne muscular dystrophy: A pilot study. Presented at Canadian Academy of Child and Adolescent Psychiatry, Banff, AB.
     Steele, M., Taylor, E., Davidson, B., McGrath, P. & Lyttle, B. (2004, October). Cognitive functioning of children and youth with Duchenne's muscular dystrophy. Presented at Canadian Academy of Child and Adolescent Psychiatry, Montreal, QC.
      Young, C., Steele, M., Davidson, B., Taylor, E., McGrath, P., & Lyttle, B. (2005, January). Cognitive functioning of children and youth with Duchenne Muscular Dystrophy (DMD). Presented at the Ontario Psychiatric Association Conference, Toronto, ON.

High school-aged youths’ attitudes towards their peers with disabilities: The role of school and student interpersonal factors
Investigators: J. McDougall, D. DeWit, G. King, L. Miller, & S. Killip
Affiliations of Collaborators: Centre for Addiction and Mental Health, The University of Western Ontario School of Occupational Therapy, Thames Valley District School Board
Status: Completed
     Negative peer attitudes are generally recognised as being a major barrier to full social inclusion at school for children and youth with disabilities. The present study examined the attitudes of 1,872 grade nine high school students in Ontario, Canada toward their peers with disabilities. A bioecological perspective and a structural equation modeling approach were adopted to investigate how various aspects of school culture and student interpersonal factors influenced attitudes. The majority of students (61%) held attitudes toward peers with disabilities that ranged from slightly above neutral to very positive. However, a substantial number (21%) held slightly below neutral to very negative attitudes. Positive student relationships at the school level and a school goal task structure that promotes learning and understanding for all students, rather than social comparison and competition among students, were two aspects of school culture that had both direct associations with positive attitudes and indirect associations through student interpersonal factors. Teacher and student relationships at the school level were an aspect of school culture that had an indirect association with positive attitudes via interpersonal support from teachers. Results support the development of ecologically based programs aimed at promoting aspects of school culture that contribute to positive attitudes of students toward their peers with disabilities.
Publications:
     McDougall, J., DeWit, D., King, G., Miller, L., & Killip, S. (2004). High school-aged youths’ attitudes toward their peers with disabilities: The role of school and student interpersonal factors. International Journal of Disability, Development, and Education, 51(3), 287-313.
     McDougall, J., DeWit, D., King, G., Miller, L., & Killip, S. (2005). Factors influencing students’ attitudes toward their peers with disabilities. (Focus On, Volume 5 Issue 6). London, Ontario: Research Alliance for Children with Special Needs.

How adolescents with physical disabilities view success in life
Investigators: J. Miller Polgar, G. King, E. MacKinnon, T. Cathers, & L. Havens
Affiliation of Collaborator: The University of Western Ontario
Funding: Thames Valley Children’s Centre Research Award, 1994-1995, $5,000; Canadian Occupational Therapy Foundation, 1994-1995, $2,500
Status:Completed
     This exploratory qualitative study examined how adolescents with non-progressive physical disabilities define success in life and what they identify as precursors for present and future success. The adolescents in this study want what all adolescents generally want in life—happiness, meaningful occupation, fulfilling relationships, independence, being believed in, and being accepted by others. However, they will have difficulty in attaining these goals due to prejudice, lack of skills, and our current weak economic climate.
Publications:
     King, G., Cathers, T., Miller Polgar, J., MacKinnon, E., & Havens, L. (2000). Success in life for older adolescents with cerebral palsy. Qualitative Health Research, 10(6), 734-749.
     King, G., & Cathers, T. (1996). What adolescents with disabilities want in life: Implications for service delivery (Keeping Current #96-2). Hamilton, ON: CanChild Centre for Childhood Disability Research.

Predictors of the physical and emotional health of parents of children with cerebral palsy
Investigators: P. Rosenbaum, P. Raina, M. O’Donnell, G. King, S. King, S. Walter, J. Brehaut, D. Russell, E. Wood, & M. Wong.
Affiliations of Collaborators: CanChild Centre for Childhood Disability Research, McMaster University, Sunnyhill Health Centre for Children, Ottawa Health Research Institute, Dalhousie University, British Columbia Children’s Hospital
Funding: Medical Research Council of Canada, 2000-2002, $338,000
Status: Completed
     Parents of children with disabilities experience extra demands on their time, energy, and resources. Most parents cope well, but are known to be under more stress than other parents, and to have increased rates of physical and emotional wear and tear. The purpose of this Ontario-wide study is to assess the well-being of up to 650 parents of children aged 3-13 with varying levels of ‘severity’ of cerebral palsy. By using advanced statistical analyses, researchers examined how a large number of factors in the child, the parents, the family, and the social environment influenced parents’ well-being and physical health. Researchers also compared the health of these parents with a matched sample of Canadian parents drawn from current national health surveys.
Publication:
     Raina, P., O’Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., Russell, D., Swinton, M., King, S., Wong, M., Walter, S. D., & Wood, E. (2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. Biomedical Pediatrics, 4,1.

The effect of parent support networks for parents of children with disabilities  
Investigators: M. Law, G. King, S. King, & J. Chiu
Affiliation of Collaborators: CanChild Centre for Childhood Disability Research
Funding: National Health Research and Development Program, Brighter Futures Program, 1994-1996, $58,058
Status: Completed
     This study explored the perceived effect of parent support groups in providing parents with support, reducing parent stress, and improving parents’ ability to deal with disability issues. A second goal was to study factors that make groups successful. The results indicated that the effects of belonging to a parent-led parent support group are substantial. Through these groups, parents gain increased skills, an increased sense of power, and sense of belonging. Participants are able to connect with each other, and provide support and skills to deal with the day-to-day issues of raising a child with special needs.
Publications:
     Law, M., King, S., Stewart, D., King, G. (2001). The perceived effects of parent-led support groups for parents of children with disabilities. Physical & Occupational Therapy in Pediatrics, 21, 29-48.
     King, G., Stewart, D., King, S., & Law, M. (2000). Organizational factors and issues affecting the longevity of self-help groups for parents of children with special needs. Qualitative Health Research, 10(2), 225-241.
     King, G., & King, S. (1994). Support groups for parents of children with disabilities (Keeping Current #94-3). Hamilton, ON: CanChild Centre for Childhood Disability Research. http://www.canchild.ca/.
     Law, M., Stewart, D., King, G., King, S., Terry, L., & Chui, J. (1996). “Many roads to one place”: The effects of parent support groups for parents of children with special needs. Hamilton, ON: CanChild Centre for Childhood Disability Research.

The participation of children with physical disabilities
Investigators: M. Law, G. King, P. Rosenbaum, M. Kertoy, S. King, P. Tremblay, & N. Young
Affiliations of Collaborators: CanChild Centre for Childhood Disability Research, The University of Western Ontario, The Hospital for Sick Children
Funding: National Institutes of Health (U.S.), 2000-2003, $1,700,000
Status: Completed
     The World Health Organization, in the new International Classification of Functioning, Disability and Health, defines participation as involvement in a life situation. For children and youth, involvement in life situations includes participation in recreational and leisure activities as well as school and work activities. Regular participation in day-to-day activities is an important aspect of children’s health, well-being, and development. Participation in activities is the context in which children develop skills and competencies, form friendships and relationships, achieve mental and physical health, develop a self-identity, and determine meaning and purpose in life.
     Studies indicate that children and adolescents with chronic disabilities are at risk for lower participation in ordinary daily activities. They tend to engage in less varied leisure activities than do children without disabilities and their participation is characterized by a greater frequency of quiet recreation activities and fewer social activities, especially social activities of a spontaneous nature. The factors that enable, promote, and reinforce the participation of children with disabilities have not been comprehensively studied.
     The capacity of children with disabilities to participate in the life of their family and community is an essential goal for all health services. The primary objective of the study was to describe the patterns of participation of children and youth with physical disabilities, and to examine how these patterns change over time.
Development and Testing of a Measure
     There was a need for psychometrically sound measures of children’s participation in recreation and leisure activities, for both clinical and research purposes. As a result, the Children’s Assessment of Participation and Enjoyment (CAPE) and its companion measure, Preferences for Activities of Children (PAC) were developed to assist with this study. These measures are appropriate for children and youth with and without disabilities between the ages of 6 to 21. Both measures are appropriate for children and youth with and without disabilities between 6 and 21 years of age, since the items reflect activities done by any child. The items  were developed through a review of the literature, expert review, and pilot testing of the CAPE and PAC with children both with and without disabilities.
     The CAPE is a 55-item measure of 5 dimensions of participation (diversity, intensity, with whom, where, and enjoyment) providing 3 levels of scoring: (1) overall participation scores, (2) domain scores reflecting participation in formal and informal activities, and (3) scores reflecting participation in five types of activities (i.e., Recreational, Active Physical, Social, Skill-Based, and Self-Improvement Activities), which were determined through principal component analyses (King et al., 2004). The PAC is a parallel measure of preference for activities, which can be scored on the same three levels. Harcourt Assessment
Publications:
     King, G., Law, M., King, S., Hurley, P., Hanna, S., Kertoy, M., Rosenbaum, P., & Young, N. (2004). Children’s Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). San Antonio, TX: Harcourt Assessment, Inc.
      King, G., Law, M., King, S., Hurley, P., Hanna, S., Kertoy, M., & Rosenbaum, P. (2007). Measuring children’s participation in recreation and leisure activities: Construct validation of the CAPE and PAC. Child: Care, Health & Development, 33(1), 28-39.
Presentations:
      Law, M., King, G., King, S., Hurley, P., Rosenbaum, P., Young, N., & Hanna, S. (2002, September). The Children’s Assessment of Participation and Enjoyment (CAPE). Presented at the meeting of the American Academy of Cerebral Palsy and Developmental Medicine, New Orleans, LA.
     Law, M., King, G., King, S., Kertoy, M., & Hurley, P. (2003, May). The Children’s Assessment of Participation and Enjoyment (CAPE). Presented at the International Conference on Cerebral Palsy, Quebec City, QC.
The Study
     A longitudinal study (using a cross-sequential design) was conducted to determine the environmental, family, and child factors that enhance participation in the formal and informal activities of childhood. Formal activities involve rules or goals and have formally-designated leaders whereas informal activities involve little or no prior planning.
     Participants were 427 children with long-term, non-progressive physical conditions associated with physical functional limitations in day-to-day activities, and their families. They were recruited using random sampling from 12 children’s community-based rehabilitation programs. The children were aged from 6–14 years, and included 229 boys and 198 girls with a range of neurological or musculoskeletal development problems.
     Fifteen interviewers collected data during home interviews with children and their parents/caregivers at three points in time, with approximately 9 to 12 months elapsing between data collection periods. Other data were collected using self-administered, standardized questionnaires that parents returned by mail.
     The Children’s Assessment of Participation and Enjoyment (CAPE) was used to assess children’s participation in formal and informal day-to-day activities outside of mandated school. The CAPE is a reliable and valid self-report measure of participation that includes both a formal and informal sub-domain. Structural equation modeling was used to test a conceptual model of environmental, family, and child factors (determined from a comprehensive review of the literature) as predictors of the intensity of children’s participation in informal and informal activities.
     The major predictors of both formal and informal participation intensity were found to be: the child’s cognitive, communicative, and physical functioning; family active-recreational orientation; and child preferences. As well, family intellectual-cultural orientation significantly predicted the intensity of children’s participation in formal activities but not informal activities. Family income, environmental barriers, family cohesion, and social support to the child were found to influence the more proximal predictors of participation (i.e., child functioning, family orientations, and child preferences).
     These findings confirm that explaining the participation of children with physical disabilities is complex; the study, however, points to several family and child factors that should be considered by community agencies when planning community development initiatives and services to promote children’s participation. Understanding the factors that promote the participation of children, and the pathways by which these factors operate, is an obvious prerequisite to our ability to improve the personal and social well-being of children with disabilities and their families.
Publications:
     King, G., Law, M., King, S., Rosenbaum, P., Kertoy, M., & Young, N. (2003). A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Physical & Occupational Therapy in Pediatrics, 23(1), 63-90.
     Law, M., Finkelman, S., Hurley, P., Rosenbaum, P., King, S., King, G., & Hanna, S. (2004). Participation of children with physical disabilities: Relationships with diagnosis, physical function, and demographic variables. Scandinavian Journal of Occupational Therapy, 11(4), 156-162.
     Law, M., King, G., King, S., Kertoy, M., Hurley, P., Rosenbaum, P., Young, N., & Hanna, S. (2006). Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Developmental Medicine and Child Neurology, 48(5), 337-342.
     Law, M., Petrenchik, T., Ziviani, J., & King, G. (2006). Participation of children in school and community. In S. Rodger and J. Ziviani (Eds.), Occupational therapy with children: Understanding children’s occupations and enabling participation (pp.67-90). Oxford: Blackwell.
     King, G., Law, M., Hanna, S., King, S., Hurley, P., Rosenbaum, P., Kertoy, M., & Petrenchik, T. (2006). Predictors of the leisure and recreation participation of children with physical disabilities: A structural equation modeling analysis. Children’s Health Care, 35(3), 209-234.
     Law, M., Petrenchik, T., King, G., & Hurley, P. (2007). Perceived barriers to recreational community, and school participation for children and youth with physical disabilities. Archives in Physical Rehabilitation and Medicine, 88, 1636-1642.
Presentations:
     King, G., Law, M., King, S., Hurley, P., Hanna, S., Kertoy, M., Rosenbaum, P., & Young, N. (2005, April). A longitudinal study of the predictors of the participation of children with physical disabilities. Presented at the biennial meeting of the Society for Research in Child Development, Atlanta, GA. 
     King, G., Law, M., Hanna, S., King, S., Hurley, P., Kertoy, M., Rosenbaum, P., & Young, N. (2005, September). A longitudinal study of the predictors of the participation of children with physical disabilities.Presented at the meeting of the American Academy for Cerebral Palsy and Developmental Medicine, Orlando, FL.
     King, G., Law, M., Hanna, S., King, S., Hurley, P., Kertoy, M., Rosenbaum, P., & Young, N. (2006, March). The participation of children and youth with physical disabilities. Presented at Scope, Melbourne, Australia.
     King, G., Law, M., Hanna, S., King, S., Hurley, P., Kertoy, M., Rosenbaum, P., & Young, N. (2006, March). The participation of children and youth with physical disabilities. Presented at Novita Children’s Services, Adelaide, Australia.
     King, G., Law, M., Hanna, S., King, S., Hurley, P., Kertoy, M., Rosenbaum, P., & Young, N. (2006, May). The participation of children and youth with physical disabilities. Presented at the International Meeting in Paediatric Neuromuscular Rehabilitation, Vingstedcentret, Denmark.
     Law, M., King, G., Kertoy, M., Hurley, P., Hanna, S., Petrenchik, T., Rosenbaum, P., & Young, N. (2006, June). Participation of children with physical disabilities in out of school occupations. Presented at the Canadian Occupational Therapy Conference, Montreal, QC.  
     Kertoy, M., Law, M., King, G., Rosenbaum, P., King, S., Hurley, P., & Hanna, S. (2007, May). Participation in every day activities by children with cerebral palsy: Relationship of language functioning to participation. Poster presented at the Nordic Network of Childhood Disability Conference, Gotenburg, Sweden.
     Boyd, R. N., Sakzewski, L., LePage, C., & King, G. (2007, October). Participation-How to measure it in research and clinical practice and will intervention change it? Instructional course presented at the annual meeting of the American Academy of Cerebral Palsy and Developmental Medicine, Vancouver, BC.

Turning points and protective factors in the lives of persons with disabilities
Investigators: G. King, J. Specht, J. Miller Polgar, T. Cathers, C. Willoughby, E. MacKinnon, E. Brown, & L. Smith
Affiliations of Collaborators: Huron University College, The University of Western Ontario, Child and Parent Resource Institute
Funding: St. Mary’s Fund, 1997-1998, $55,000; Canadian Occupational Therapy Foundation, 1998-1999, $3,000
Status: Completed
     Fifteen individuals between the ages of 28 and 53 with cerebral palsy, spina bifida, or attention deficit disorder identified their key turning points and the factors that helped and/or hindered them at these critical points in their lives. The helpful/hindering factors and study recommendations indicate the need for various supports and services to be available at critical periods in people's lives.
Publications:
     King, G. A., Brown, E. G., & Smith, L. K. (Eds.) (with Cathers, T., Havens, L., MacKinnon, E., Miller Polgar, J., Specht, J. A., & Willoughby, C.) (2003). Resilience: Learning from people with disabilities and the turning points in their lives. Westport, CT: Greenwood. (ISBN: 0-275-97943-1)
     King, G., Cathers, T., Brown, E., Specht, J. A., Willoughby, C., Miller Polgar, J., MacKinnon, E., Smith, L. K., & Havens, L. (2003). Turning points and protective processes in the lives of people with chronic disabilities. Qualitative Health Research, 13(2), 184-206. 

Understanding the values, priorities, and world views of families raising children with chronic developmental conditions
Investigators: G.King, P. Rosenbaum, S. King, & A. Bates
Affiliations: CanChild Centre for Childhood Disability Research, Parent Representative
Funding: Canadian Institutes of Health Research, 2002-2005, $85,644
Status: Completed
     This three-year study looked at how parenting a child with a disability affects family values, priorities, and views of their place in the world. Families were queried at two transition points—entry into school and transition into high school.
~ Family priorities deal with the activities and roles families feel are most important.
~ Family values are fundamental operating principles by which parents organize the lives of their families, such as the importance of open communication and of doing things together as a family. 
~ Worldviews are the family’s assumptions about the social and cultural environment, and their family’s place in the world.
     The priorities, values, and worldviews of families affect their adaptation and resilience. Little is known, however, about how families may adjust to raising a child with a disability by changing or adapting their priorities, values, or worldviews. Findings from the first phase of a two-part study investigating changes in the belief systems of families of children with autism or Down syndrome are reported in a TVCC Facts To Go. Three focus groups involving 19 knowledgeable individuals (15 parents and 4 service providers) were conducted to obtain information about the priorities, values, and worldviews of families, and how these might change over time. Four categories of themes emerged from the analysis of the focus group information:
(1) initial reaction to parenting a child with a disability (a life-changing experience),
(2) adapting over time (being spurred to examine beliefs, importance of hope, gaining a sense of control and empowerment),
(3) changes in priorities (giving up “trying to fix the child," refocusing on the needs of other family members), and
(4) changes in worldviews and values (stronger values and broader worldviews, areas of personal growth, learning what is important in life).
Implications for families of children with disabilities and service providers are included. This information could help ease the challenges commonly faced by families of children with disabilities.
Publication:
     King, G., King, S., Zwaigenbaum, L., Baxter, D., Rosenbaum, P., & Bates, A. (2005). The priorities, values, and worldviews of families of children with autism or down syndrome: Study 1 (Facts To Go, Volume 1 Issue 2). London, ON: Thames Valley Children’s Centre.
     King, G., Zwaigenbaum, L., King, S., Baxter, D., Rosenbaum, P., & Bates, A. (2006). A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome. Child: Care, Health and Development, 32(3), 353-369.
     King, G., Baxter, D., Rosenbaum, P., Zwaigenbaum, L., & Bates, A. (2006). The worldviews, values, and priorities of families of children with autism or Downs syndrome. Focus on Autism and Other Developmental Disabilities.
Presentation:
     King, G., Zwaigenbaum, L., Rosenbaum, P., King, S., Bates, A., & Baxter, D. (2006, June). Belief systems of families of children with autism spectrum disorders. Presented at the International Meeting for Autism Research, Montreal, QC. 
    Zwaigenbaum, L., King, G., Rosenbaum, P., King, S., Bates, A., & Baxter, D. (2007, March). Belief systems of families of children with autism spectrum disorders. Presented at the annual meeting of the Society for Research in Child Development, Boston.

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