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Psychosocial Research Projects  E-mail

“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

A comparison of the motivation of volunteers with and without disabilities

Collaborating with parents and therapists to develop dissemination products: The move & play study

Coordination difficulties and life experiences in adolescence

Early experiences and participation patterns of children with Developmental Coordination Disorder

Educators' attitudes toward inclusion

Evaluating the mental health of children and youth with Duchenne's Muscular Dystrophy (DMD): Phase one

High school-aged youths' attitudes towards their peers with disabilities

How adolescents with physical disabilities view success in life

Predictors of Canadian children's mental health and competenence

Predictors of the physical and emotional health of parents of children with cerebral palsy

School reintegration for children and youth with acquired brain injury

School role participation: Perspectives of the child, the parents, and the teachers

Self-esteem and self-concept of adolescents with physical disabilities

The effect of parent support networks for parents of children with disabilities

The impact of personal, interpersonal, and environmental factors on changes in quality of life for youth with chronic conditions

The participation of children with physical disabilities

The physical and emotional health of parents of children with cerebral palsy

Turning points and protective factors in the lives of persons with disabilities

Understanding the bodily experience of Cerebral Palsy: A phenomenology

Understanding sexuality among adolescents with physical disabilities: A narrative inquiry

Understanding the values, priorities, and world views of families raising children with chronic developmental conditions

 


A comparison of the motivation of volunteers with and without disabilities
Investigators: M. Baldwin, & J. Specht
Affiliation of Collaborator: The University of Western Ontario
Funding: Thames Valley Children's Centre Research Award, 1998-2000, $3,500
Status: Completed
     Twenty volunteers from four non-profit agencies providing services to individuals with disabilities were divided into two groups of volunteers (10 with and 10 without disabilities) and then participated in semi-structured interviews. All participants who had altruistic reasons for volunteering stated a connection to the agency as a motivation. Employment experience was a motivation indicated by 55 % of participants in the study. Participants with disabilities stated primarily altruistic reasons (e.g., the desire to help out) as their main reason for volunteering. Participants without disabilities stated primarily egotistic motivations (e.g., gaining employment experience). The ability to serve as a role model for clients was a motivation to volunteer shared by participants with disabilities and not mentioned by participants with disabilities. The results of the research will assist rehabilitation and volunteer professionals in determining the motivations of volunteers to ensure successful placements.
Publications:
     Baldwin, M., & Specht, J. (2004). Volunteers: What motivates them? (Focus On, Volume 4 Issue 1). London, ON: Research Alliance for Children with Special Needs.

Collaborating with parents and therapists to develop dissemination products: The move & play study
Investigators: Bartlett, D.
Affiliation of Collaborator: Western University
Funding: Canadian Institutes of Health Research-Knowledge Translation Supplement, 2010-2011 $39,220
Status: Completed
     The Move & Play study (Movement and Participation in Life Activities of Young Children) focused on understanding determinants of motor abilities, self-care and play of pre-school children with cerebral palsy and our primary goal in conducting this research was to impact practice. We prepared 12 easy-to-read research summaries of our results which were reviewed by parents of children with cerebral palsy, and therapists who worked with these children. The provided feedback via focus groups and the final summaries were posted on the CanChild website for access by parents, therapists, administrators and policy makers. 

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.

Educators' attitudes toward inclusion 
Investigators: J. Specht, M. Currie, S. Killip, G. King, M. Burton, J. Eliav, S. Lambert, B. Thornton
Affiliations of Collaborators: Huron University College, Department of Psychology; Thames Valley District School Board
Status: Completed
     Much of the past research has examined attitudes towards inclusion of children with learning disabilities. The purpose of this study was to determine educators' opinions about the inclusion of children with special needs in regular classrooms. Focus groups were held with 47 educators who were divided into four categories according to their experience with children with special needs: general educators with little experience with children with special needs, general educators with a great deal of experience, educational assistants, and special education educators. The transcripts of the interviews were analyzed for common themes. Consistent with past research, the educators we interviewed were positive about inclusion, but felt that many practical issues still remained unsettled. The most common issue identified was support. Both general educators and educational assistants felt the need for better training to work with children with special needs. Special educators expressed frustration with continuing discussions of inclusion without necessary improvements being implemented.
Publications:
      Ross, C., & Specht, J. (2002). Strategies to include children in the classroom (Focus On, Volume 2 Issue 6). London, ON: Research Alliance for Children with Special Needs. 
      Specht, J., Currie, M., Killip, S., King, G., Burton, M., Eliav, J., Lambert, S., & Thornton, B. (2001). Educators' attitudes toward inclusion (Focus On, Volume 1 Issue 3). London, ON: Research Alliance for Children with Special Needs.
Presentation:
     Specht, J., Currie, M., Killip, S., King, G., Burton, M., Eliav, J., Lambert, S., & Thornton, B. (2002, August). Inclusion: Attitudes of Canadian educators. Presented at the American Educational Research Association, Chicago, IL.

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 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 Canadian children’s mental health and competence: A structural equation modeling approach using the National Longitudinal Survey of Children and Youth

Investigators: G. King, D. R. Offord, D. DeWit, K. Meyer, J. LaPorta, J. McDougall, & L. Miller
Affiliations of Collaborators:
Offord Centre for Children at Risk, Centre for Addiction and Mental Health, The University of Western Ontario
Funding:
Health Canada, Health Policy Research Program, 2000-2002, $49,630
Status:
Completed
     This study used structural equation modeling to analyze the data of approximately 10,000 children aged 6-11 from the 1994-95 National Longitudinal Survey of Children and Youth. The study: (1) examined the prevalence of chronic physical conditions, impairments, and activity limitations among Canadian school-aged children, described the presence of mental health conditions and learning disabilities among children by physical health status, and examined the relationship of children’s physical health status to their education and service utilization; and (2) examined the most important factors associated with the academic performance and prosocial behaviour of Canadian school-aged children, including: child factors (physical health status, emotional, behavioural, and cognitive functioning, hyperactivity/inattention, recreational participation), family factors (family social support, family functioning), and environmental factors (neighbourhood cohesion). A theoretically- and empirically-based model of competence development was used that proposes that three types of relational processes, dealing with opportunity, support, and skill development through participation, lead to competence. The findings have been shared widely to inform policy makers, health planners, health and social services managers, and those in education, about changing patterns of prevalence and utilization, and about the most important predictive factors affecting the academic performance and social competence of children.
Publications:
     McDougall, J., King, G., DeWit, D., Miller, L. T., Hong, S., Offord, D. R., LaPorta, J., & Meyer, K. (2004). Chronic physical health conditions and disability among Canadian school-aged children: A national profile. Disability and Rehabilitation, 26(1), 35-45.
     King G., McDougall, J., DeWit, D., Hong, S., Miller, L., LaPorta, J., Meyer, K., & Offord, D. (2004). Pathways to children’s academic and social outcomes (Focus On, Volume 4 Issue 3). London, ON: Research Alliance for Children with Special Needs. 
     McDougall, J., King, G., DeWit, D., Miller, L., Hong, S., Offord, D., LaPorta, J., & Meyer, K. (2004). A profile of Canadian school-aged children’s health and disability (Focus On, Volume 4 Issue 4). London, ON: Research Alliance for Children with Special Needs. 
    King, G., McDougall, J., DeWit, D., Hong, S., Miller, L. T., Offord, D., Meyer, K., & LaPorta, J. (2005). Pathways to children’s academic performance and prosocial behaviour: Roles of physical health status, environment, family, and child factors. International Journal of Disability, Development and Education, 52(4), 313-344.
Presentations:
     McDougall, J., King, G., LaPorta, J., & Meyer, K. (2003,October). Examining the health, functioning and competence of Canadian school-aged children using the National Longitudinal Survey of Children and Youth. Presented at the meeting of the Ontario Association of Children’s Rehabilitation Services, Richmond Hill, ON.
     McDougall, J., King, G., DeWit, D. J., Miller, L. T., Hong, S., Offord, D. R., LaPorta, J., & Meyer, K. (2004, June). Chronic physical health conditions and disability among Canadian school-aged children: A national profile using the National Longitudinal Survey of Children and Youth and the ICD-10 and ICF definitions of health condition and disability. Presented at the 10th North American Collaborating Center Conference on ICF, Halifax, NS.
     King, G., McDougall, J., DeWit, D., Hong, S., Miller, L. T., Offord, D., Meyer, K., & LaPorta, J. (2006, March). Developing competence: Pathways to children’s academic performance and prosocial behaviour. Presented at the Early Childhood Intervention Australia 2006 National Conference, Adelaide, Australia.

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.

School reintegration for children and youth with acquired brain injury
Investigators: D. Good1, P. Rumney2, J. McDougall, C. DeMatteo3, P. McKeever2, D. Guerriere4, S. Loyst5, R. Martinussen4, S. Bennett1, & John Kumpf6
Affiliations: Brock University1, Bloorview Kids Rehabilitation2, McMaster University3, University of Toronto4, Georgian College5, Ontario Brain Injury Association6
Funding: Ontario Neurotrauma Foundation, 2009-2011, $360,000
Status: Completed
     Partnering with Children’s Centres and schools across Ontario, this study will investigate individual, academic, and system-related factors that relate to the successful return to school of children and youth with Acquired Brain Injury (ABI).
     Using questionnaires and standardized testing, this study proposes to identify and examine the impact of the important factors involved in returning to school and how those factors are related to outcomes.
     The results of this study will contribute to the understanding and advancement of the academic, social, and environmental features supporting successful school reintegration for students with ABI.
Publication:
      Good, D., Rumney, P., McDougall, J., Bennett, S., Martinussen, R., DeMatteo, C., McKeever, P., Guerriere, D., Loyst, S., Kumpf, J., & DeCourville, N. (2009) School reintegration for children and youth with Acquired Brain Injury. [Abstract] Journal of Head Trauma Rehabilitation, 24(5), 399.
     Good, D., McDougall, J., Rumney, P., & Bennett, S. (2012). Successful Scholastic Reintegration for Students who have experienced ABI. [Abstract] Archives of Physical Medicine and Rehabilitation, 93(10): E28. 
     Good, D., Rumney, P., McDougall, J., Bennett, S., DeMatteo, C., & McCormick, A. (2012). Successful Scholastic Reintegration: Academic, Social and Behavioural Success for Students with ABI. [Abstract] Journal of Head Trauma Rehabilitation, 27(5): E35-E36. 
     Good, D., Rumney, P., McDougall, J., Bennett, S., DeMatteo, C., Martinussen, R., & DeCourville, N. (2012). School-based Factors Contribute to Successful School Reintegration of Children and Youth with Acquired Brain Injury. [Abstract] Brain Injury, 26(4-5): 699-700.
Presentations:
     McDougall, J., Good, D., Rumney, P., DeMatteo, C., McKeever, P., Guerriere, D., Loyst, S., Martinussen, R., Bennett, S., Kumpf, J., Wlodarczyk, K., & McCafferty, K. (2009, November). School reintegration for children and youth with Acquired Brain Injury. Presented at the annual meeting of the Ontario Association of Children’s Rehabilitation Services, Toronto, ON.
     Good, D., Rumney, P., McDougall, J., Bennett, S., Martinussen, R., DeMatteo, C., McKeever, P., Guerriere, D., Loyst, S., Kumpf, J., & Decourville, N. (2009, October). School reintegration for children and youth with Acquired Brain Injury. Presented at the North American Brain Injury Society 7th Annual conference on Brain Injury, Austin, TX.
     Good, D., Rumney, P., McDougall, J., DeMatteo, C., McKeever, P., Guerriere, D., Loyst, S., Martinussen, R., Bennett, S., Kumpf, J., Wlodarczyk, K., & McCafferty, K. (2009, May). School reintegration for children and youth with Acquired Brain Injury. Presented at the 16th Annual Conference on Neurobehavioural Rehabilitation in Acquired Brain Injury, Hamilton Health Sciences, Hamilton, ON.
     Good, D., Rumney, P., McDougall, J., DeMatteo, C., McKeever, P., Guerriere, D., Loyst, S., Martinussen, R., Bennett, S., Kumpf, J., Wlodarczyk, K., & McCafferty, K. (2009, April). School reintegration for children and youth with Acquired Brain Injury. Presented at the 17th Annual Research Day of the Ontario Association for Developmental Disabilities Research Special Interest Group, Barrie, ON.
     McDougall, J., Good, D., Rumney, P., Bennett, S., Martinussen, R., DeMatteo, D., McKeever, P., Guerriere, D., Loyst, S., Kumpf, J., & DeCourville, N. (2012, April). Factors influencing school reintegration for Ontario students with Acquired Brain Injury. Presented at the 20th Annual Research Day of the Ontario Association for Developmental Disabilities Research Special Interest Group, Kingston, ON.
     Good, D., Rumney, P., McDougall, J., Bennett, S., DeMatteo, C., Martinussen, R., & DeCourville, N. (2012, March). School-based factors contribute to successful school reintegration of children and youth with Acquired Brain Injury. Presented at he 9th World Congress on Brain Injury, Ediburgh, Scotland.
     Good, D., Rumney, P., McDougall, J., Bennett, S., Martinussen, R., DeMatteo, C., McKeever, P., Guerriere, D., Loyst, S., Kumpf, J., & DeCourville, N. (2011, November). School reintegration for children and youth with acquired brain injury. Presented at the Acquired Brain Injury 2011 Provincial Conference, Niagara Falls, ON.
     Good, D., Rumney, P., McDougall, J., Bennett, S., Martinussen, R., DeMatteo, C., McKeever, P., Guerriere, D., Loyst, S., Kumpf, J., & DeCourville, N. (2011, November). Predictors of successful school reintegration outcomes for students with Acquired Brain Injury (ABI). Presented at the Children’s Mental Health Ontario, Toronto, ON.
     Good, D., Rumney, P., McDougall, J., DeMatteo, C., McKeever, P., Guerriere, D., Loyst, S., Martinussen, R., Bennett, S., Kumpf, J., Wlodarczyk, K., & McCafferty, K. (2011, October) Social and academic competency in students with ABI. Presented at the annual meeting of the Ontario Association of Children's Rehabilitation Services, Toronto, ON.
     Good, D., Rumney, P., McDougall, J., Bennett, S. Martinussen R., DeMatteo, C., McKeever, P., Guerriere, D., Loyst, S., Kumpf, J., DeCourville, N. (2010, November). School reintegration for children and youth with Acquired Brain Injury. Presented at the Toronto ABI Network Conference, Toronto, ON.
     Good, D. Rumney, P., McDougall, J., Bennett, S., Martinussen, R., DeMatteo, C., McKeever, P., Guerriere, D., Loyst, S., Kumpf, J.,& DeCourville, N. (2010, June). School reintegration for children and youth with Acquired Brain Injury. Presented at the 71st Annual Convention of the Canadian Psychological Association, Winnipeg, MB. 
     Good, D., McDougall, J., Rumney, P., & Bennett, S. (2012, October). Successful Scholastic Reintegration for Students who have experienced ABI. Presented at the ARCM-ASNR Conference, Vancouver, BC.

School role participation: Perspectives of the child, the parents, and the teachers
Investigators: J. Specht1, G. King, M. Servais, M. Kertoy2, & T. Spencer3
Affiliation: The University of Western Ontario, Faculty of Education1, School of Communication Sciences and Disorders2; London District Catholic School Board3
Funding: Provincial Centre of Excellence for Child and Youth Mental Health, Grant in Aid, 2005-2006, $7,065; Social Sciences and Humanities Research Council of Canada, 2006-2009, $109,563
Status: Completed, 2006-2009
     Repeatedly, participation has been shown as key to the healthy adjustment of individuals. Unfortunately, children with disabilities have been found to participate less than children without disabilities and these differences increase through middle and late childhood, thus putting them at risk for negative life outcomes such as low self-esteem, depression, and anxiety. Promoting children’s active engagement in school through opportunities such as involvement in classroom lessons, games, sports, and social events, leads to a greater likelihood of successful experiences. This may be especially true during the transition to secondary school when the emphasis on social comparison is heightened. The potential worries and vulnerabilities of children with respect to social comparison may interfere with participation.
     The project examined children’s participation in school roles (e.g., leader, friend, athlete, helper), which is a novel and conceptually meaningful approach to understanding the complexities of participation. Using mixed methods, the child, his/her parent(s), and his/her teacher(s) were interviewed about the roles in which children participate during the school day. Researchers used measures to assess (a) the cognitive, communicative, and physical functioning of the children, (b) the child’s self-concept, (c) child’s participation in activities outside of school, (d) the school culture, and (e) the classroom environment in order to assess how these characteristics relate to school role participation. Interviews were carried out with students in Grades 7, 8, and 9 who were followed for a period of 2 years. This sequential approach allowed researchers to see the development of roles at the end of elementary school through to the middle of secondary school. By involving children with and without disabilities as well as their teachers and parents, researchers were able to (a) compare the roles between children, (b) examine the perspectives of the children, parents and teachers, and (c) compare these perspectives to determine if and where the gaps in promoting participation exist.
     This program of research provided important information to help teachers, service providers, and parents understand the experiences of children in the school setting.
Presentations:
     Specht, J. A., Servais, M., Kertoy, M., Spencer, T., King, G., Cressman, C., Pompeo, M., & Young, G. (2008, March). School role participation: Perspectives of the child, parent, and the teacher. Presented at the 2008 Eighth Annual Second City Conference on Disability Studies in Education, New York, NY.
     Specht, J. A., Servais, M., Kertoy, M., Spencer, T., King, G. A., Cressman, C., Pompeo, M., & Young, G. (2008, August). School participation: Opportunities, enhancers, and limiters. Presented at the Annual Meeting of the American Psychological Association. Boston, MA.
     Specht, J. A., Spencer, T., Servais, M., Kertoy, M., Young, G., Pompeo, M., Cressman, C., & Puskarich, M. (2008, November). School participation: How educators can help. Presented at the 52nd Ontario Provincial Conference of the Council for Exceptional Children, London, ON.
     Specht, J. A., Servais, M., Kertoy, M., Spencer, T., King, G., Young, G., Pompeo, M., Young, G., & Puskarich, M. (2009, August). School roles: Opportunities to participate. Presented at the American Psychological Association Annual Conference, Toronto, ON.
     Spencer, T., Specht, J.,  Servais, M., Kertoy, M.,  King, G., Pompeo, M., Young, G., & Puskarich, M. (2010, February). Elementary school roles: Making sure all participate. Presented at the 5th Annual Ontario Education Research Symposium, Toronto, ON.

Self-esteem and self-concept of adolescents with physical disabilities
Investigators: G. King, & J. Specht
Affiliation of Collaborator: The University of Western Ontario
Funding: Easter Seal Research Institute, 1993-1994, $5,000
Status: Completed
     It is often assumed that people with disabilities have low self-esteem, but research studies find little evidence for this belief. This interview study examined several possible reasons why adolescents with physical disabilities do not have lower self-esteem. Their coping mechanisms included: comparing oneself to others with disabilities rather than to an able-bodied group (social comparison explanation); devaluing skill areas in which one has little competency (devaluing explanation); and attributing negative feedback to others’ prejudiced attitudes rather than to personal factors (defensive attribution). Results indicated, as expected, adolescents with spina bifida or cerebral palsy did not have lower overall self-esteem, although they did have lower self-concepts in the areas of social acceptance, athletic competence, and job competence.
Publications:
     Willoughby, C., Polatajko, H., Currado, C., Harris, K., & King, G. (2000). The self-esteem of adolescents with mental health problems: Theory meets practice. Physical & Occupational Therapy in Pediatrics, 67(4), 230-238.
     Specht, J., King, G., & Francis, P. (1998). A prelimary study of strategies for maintaining self-esteem in adolescents with physical disabilities. Canadian Journal of Rehabilitation, 11(3), 103-110.
     Willoughby, C., King, G., & Polatajko, H. (1996). The importance of self-esteem: Implications for practice (Keeping Current #96-1). Hamilton, ON: CanChild Centre for Childhood Disability Research.
     Willoughby, C., King, G., & Polatajko, H. (1996). A therapist’s guide to children’s self-esteem. American Journal of Occupational Therapy, 50(2), 124-132.

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 impact of personal, interpersonal, and environmental factors on changes in quality of life for youth with chronic conditions
Investigators: J. McDougall, V. Wright1, & L. Miller2
Affiliation: Holland Bloorview Kids Rehabilitation Hospital/Bloorview Research Institute1, University of Western Ontario School of Graduate and Postdoctoral Studies2
Funding: Canadian Institutes of Health Research, 2009-2014, $742,340
Status: Underway, 2009-2016
     Optimizing quality of life for children and youth is a key goal of the Ontario Association of Children’s Rehabilitation Services (OACRS) centres. Many supports and interventions are directed toward this goal. It is important for clients, families, service providers, and policy makers to understand the key factors that influence changes in life quality throughout childhood and adolescence for children and youth with chronic conditions.
     To this end, researchers will examine the impact of personal, interpersonal, and environmental factors on changes in quality of life for youth with chronic conditions. 
     This research endeavour includes a five-year survey-based study and a qualitative study. The survey-based study will address two unexplored research areas: 1) the changing nature of quality of life for youth with chronic conditions over a three-year period, and 2) the factors that influence change in quality of life for youth.qualityoflifelogo_rgb.jpg Approximately 575 youth aged 11 to 17 years (and one of their parents) who receive services from eight OACRS centres across Ontario will participate. Youth and parents will each complete a brief questionnaire at four time points that include questions about quality of life and the factors that research and conceptual thinking suggest influence changes in life quality for youth with chronic conditions. Some of the factors to be explored are: youths’ physical and emotional functioning, self-determination, social participation, and family and environmental supports. Advanced statistical analysis procedures will be used to evaluate changes in quality of life and to determine the factors related to change.
     Twenty to thirty youth from TVCC will be involved in the qualitative study. The youth will take part in individual interviews and focus groups to consider what “quality of life” means to them and what aspects of life they feel are most important for enhancing their life quality. These findings will be examined alongside those of the survey-based study.
     Findings from this research will help us to understand more about quality of life from the perspectives of youth and their families, and can help guide program and policy development toward optimizing life quality for youth with chronic conditions!
Publication:
      McDougall, J.,
Wright, V., & Miller, L. (2009). What is “quality of life” and how can research identify the factors that optimize life quality for children and youth with chronic conditions? (Facts to Go, Volume 5 Issue 1). London, ON: Thames Valley Children’s Centre.
     McDougall, J., Wright, V., Miller, L., & Nichols, M. (2012). Evaluation of two measures of perceived quality of life when used with youth with chronic conditions. [Abstract] Developmental Medicine & Child Neurology, 54(6): 34-35. (Suppl.).
     McDougall, J., Wright, V., Schmidt, J., Miller, L., & Lowry, K. (2011). Applying the ICF Framework to study changes in quality of life for youth with chronic conditions. Developmental Neurorehabilitation,14(1), 41-53.
     McDougall, J., Wright, V., & Rosenbaum, P. (2010). The ICF Model of Functioning and Disability: Incorporating quality of life and human development. Developmental Neurorehabilitation, 13(3), 204-211.
    McDougall, J., Bedell, G., & Wright, V. (2013). The youth report version of the Child and Adolescent Scale of Participation: Assessment of psychometric properties and comparison with parent report. Child: Care, Health, & Development, 39(4), 512-522.
    McDougall, J., Wright, V., Nichols, M., & Miller, L. (2013). Assessing the Psychometric Properties of both a Global and a Domain-Specific Perceived Quality of Life Measure when used with Youth who have Chronic Conditions. Social Indicators Research, 114(3), 1243-1257.
Presentations:
      McDougall, J.,
Wright., V., & Miller, L. (2009, November). Changes in quality of life for youth with chronic conditions: The impact of personal, interpersonal and environmental factors.  Presented at the annual meeting of the Ontario Association of Children's Rehabilitation Services, Toronto, ON.
      McDougall, J., Wright, V., Miller, L., & Nichols, M. (2012, July). A “Positive" focus in research for pediatric rehabilitation. Presented at the 7th Biennial International Meaning Conference, Toronto, ON.
     McDougall, J., Wright, V., Miller, L., & Nichols, M. (2012, April). Identifying the personal, interpersonal and environmental factors associated with changes in quality of life for youth with chronic conditions and disabilities. Presented at the 33rd Annual International Young Adults Institute (YAI) Network Conference, New York, New York.
     McDougall, J., Wright, V., Miller, L., & Nichols, M. (2012, April). Identifying the personal, interpersonal and environmental factors associated with changes in quality of life for youth with chronic conditions and disabilities. Presented at the 20th Annual Research Day of the Ontario Association for Developmental Disabilities Research Special Interest Group, Kingston, ON.
    Bedell, G., McDougall, J., & Wright, V. (2013, April). “Youth Report Version of the Child and Adolescent Scale of Participation (CASP): Psychometric Properties and Comparisons with the Parent Report Version”. Presented at the annual meeting of the American Occupational Therapy Association, San Diego, California.
    McDougall, J., Bedell, G., & Wright, V. (2012, November). “Youth Report Version of the Child  and Adolescent Scale of Participation (CASP): Psychometric Properties and Comparisons with the Parent Report Version”. Presented at the annual meeting of the Ontario Association of Children's Rehabilitation Services, Toronto, ON.
    McDougall, J., Wright, V., Miller, L., Nichol, M. (2012, September). Evaluation of Two Perceived Quality of Life Measures when used with Youth with Chronic Conditions.  Presented at the 66th Annual Meeting of the American Academy of Cerebral Palsy and Developmental Medicine, Toronto, ON.

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 Children's Assessment of Participation and EnjoymentParticipation 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 InstituteResilience Book Cover
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., 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 bodily experience of Cerebral Palsy: A phenomenology
Investigators: L. Brunton
Affiliaton of Collaborator: Western University
Status: Completed
     This study helps us understand how adolescents and young adults with cerebral palsy experience their bodies. Youth and young adults with cerebral palsy experience pain and fatigues with activities of daily living. This study used interviews to gain knowledge about pain, fatigue and exercise. This information is necessary, to help plan physical therapy interventions and for transition from pediatric to adult care. The data gathered from this study helped create a tool to screen people with muscle fatigue to help tailor their physiotherapy services to better manage pain and fatigue experienced n a daily basis.
Publication:
     Brunton, L.K., Rice, C.L. (2012). Fatigue in cerebral palsy: A critical review. Developmental Neurorehabilitation, 15(1), 54-62.
Presentation:
     Brunton, L. (2012, March). The bodily experience of living with cerebral palsy: A phenomenology. Presented at the Discovery Series session, Thames Valley Children's Centre, London, ON.

Understanding sexuality among adolescents with physical disabilities: A narrative inquiry
Investigators: Orchard, T., & East, L.
Affiliation of Collaborators: Western University
Funding: Ontario Graduate Scholarship, 2010-2011, $15,000
Status: Completed
     This study explored how adolescents with physical disabilities learned about sexuality and how this experience influenced the way they see themselves as sexual beings. This project also looked at what types of resources and services should be developed in order to improve sexuality education for these youth. Narrative interviews were conducted with adolescents living with a physical disability, along with focus groups involving teachers, physicians and allied health professionals who are involved in the delivery of sexuality education as well as parents/guardians of youth with physicial disabilities.
Presentation:
East, L. (2011, March). Understanding sexuality among adolescents with physical disabilities: A narrative inquiry. Presented at the HRS Research Forum, London, ON.

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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Last Updated ( Wednesday, 22 January 2014 )