Exploring factors that impact activity participation of children and adolescents with severe developmental disabilities.

BACKGROUND: Despite the benefits of social participation, children and adolescents with developmental disabilities (DD) are often excluded from taking part in social activities. There is a gap in the literature about the factors that contribute to adequate participation of children with severe DD in particular and the barriers to their participation. Taking an ecological perspective, the purpose of this study was to examine child, family and community variables that may impact the activity participation of children and adolescents with severe DD. METHODS: A total of 197 parents of children with severe DD (4-19 years) completed a survey, addressing a wide range of child, family and community related variables, as well as a measure of activity participation. RESULTS: Overall, the final model significantly accounted for 30% of the variance in activity participation. Higher adaptive behaviour, greater parental socialisation and placement in an integrated school programme were significant predictors of greater activity participation. CONCLUSION: Child, family and community factors were all important in understanding the activity participation of children with severe DD, thus supporting the value of an ecological approach. Suggestions for future research and clinical implications are discussed.

Examining the social participation of children and adolescents with Intellectual Disabilities and Autism Spectrum Disorder in relation to peers.

BACKGROUND: Participation in social and physical activities has a number of benefits for children with or without disabilities. However, individuals with disabilities are often excluded from taking part in social activities. Most of the research on activity participation has focused on adults or youth with milder disabilities. However, children and adolescents with severe and complex needs, including those with autism, are often excluded from this type of research because of their complexities and level of functioning. Thus, we examined the social participation and friendships of children and adolescents with severe developmental disabilities, with and without autism, compared with peers without developmental disabilities. METHODS: We compared the activity participation and friendships of typically developing children (n = 210), children with an intellectual disability (ID only; n = 186), and children with autism spectrum disorder plus intellectual disability (ID + ASD; n = 232) between the ages of 3 and 19 years. Parents of these children completed a survey, which included questions about their children's participation in six activities, and the number and quality of their children's friendships. RESULTS: Children and adolescents with ID only and ID + ASD were reported to participate in significantly fewer activities and to participate much less frequently than typically developing peers. Those with ID only and ID + ASD were reported to have fewer friends and poorer quality of friendships. In addition, those with ID + ASD participated even less frequently in some activities and had fewer friends relative to those with ID only. CONCLUSION: It is important to find ways to increase the social and activity participation of children and adolescents with ID only and ID + ASD. Future research should examine the barriers to such participation and factors that impact social participation in this population.

Predictors of distress and well-being in parents of young children with developmental delays and disabilities: the importance of parent perceptions.

BACKGROUND: Moving from family-centred to child-centred models of service delivery can be stressful for parents as their young children with developmental delays and disabilities transition into school. The purpose of this paper was to explore and compare predictors of both distress and well-being in parents during this transition period. METHODS: A sample of 155 mothers of 113 boys and 42 girls participated in the study. The mean age of the children was 4.9 years and their diagnoses included autism spectrum disorder (52%); unspecified intellectual disability/developmental delay (26%); Down syndrome (12%); other genetic conditions (4%) and other diagnoses (6%). Participants completed surveys primarily online focusing on child characteristics, family resources, parent coping strategies, parental distress and positive gain. RESULTS: Multiple regression analyses were conducted to determine predictors of parent reported distress and positive gain. Parent coping variables were the strongest predictors of both positive gain and parental distress, with reframing emerging as a predictor of positive gain and parent empowerment emerging as a predictor of both greater positive gain and lower parental distress. CONCLUSIONS: The results of this study highlight not only the importance of including positive as well as negative outcomes in research with parents but also the importance of including parent characteristics such as coping strategies (e.g. reframing and empowerment/self-efficacy) as potential predictors of outcome in such studies.

Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome.

BACKGROUND: International research in recent years has begun to focus on the medical problems of individuals with intellectual disabilities and on family stress in accessing health services for persons with developmental disabilities. Less is known about the needs of individuals in different diagnostic groups, or about their experiences of systems of care. Therefore, we report the results of focus groups with parents of children or adults with fragile X syndrome, autism or Down syndrome. METHODS: Semi-structured group interviews with parents of children, youth or adults from each of three diagnostic groups probed perceptions of challenges and successes in obtaining and negotiating healthcare services in Ontario, Canada. RESULTS: Parents described diverse barriers to care, the need for advocacy in securing services, perceptions of service delivery and the role of healthcare professionals in regulating access to a wide range of services. Diagnostic services represented one area of central concern to parents from all three groups. DISCUSSION: Focus group data yielded a wide range of concerns. Suggestions for enhancing the system included expanding syndrome-specific education for medical students and health professionals and creating a centre that could offer service-related information for parents.

Empowerment in parents of school-aged children with and without developmental disabilities.

BACKGROUND: Despite the widespread use of the term 'empowerment' in clinical literature to describe both a desirable process and the outcome of service delivery, the term remains more of a theoretical than practical construct. This study examined the factors that contribute to empowerment in parents of school-aged children with and without developmental disabilities (DD) using the Double ABCX model of family adaptation contrasted with the linear ACBX model. METHODS: Parents of children with (n = 100, 97% mothers) and without (n = 100, 98% mothers) DD completed questionnaires relating to child behaviour problems, parent stress and well-being, and formal and informal support. Structural equation modelling was used RESULTS: Parents of children with DD reported more child behaviour problems, more stress, less well-being and more social support than parents of children without DD. Structural equation modelling supported the ACBX model for both groups. A linear relationship was found in which parent well-being and resources mediated the relationship between the stressor (child behaviour problems) and the outcome (empowerment). CONCLUSIONS: The results of the current study support Hastings and Taunt's assertion in 2002, in that empowerment was adequately explained using a traditional model of family functioning. The significant prediction offered by the parent's resources points to the need to deliver services in a manner that is more family-centred. In the education system, this means providing parents with clear messages regarding the schools goals, clarifying the parent's rights and responsibilities, including the parent in planning and decision making, respecting their knowledge as caregivers and supporting their hopes for their child.

The Family Stress and Coping Interview for families of individuals with developmental disabilities: a lifespan perspective on family adjustment.

BACKGROUND: The present study investigated the psychometric properties of the Family Stress and Coping Interview (FSCI), a questionnaire designed to quantitatively and qualitatively examine the experiences of parents of children with developmental disabilities (DDs). METHODS: The participants consisted of 106 primary caregivers of 106 individuals with DDs from centres in Eastern, Central and North-western Ontario, Canada. The participants completed a demographic questionnaire, the FSCI, and the Vineland Adaptive Behaviour Scales. RESULTS: The results of this study indicate that the FSCI has adequate reliability (i.e. internal consistency and long-term stability) and validity (i.e. independent item ratings and discriminant validity). CONCLUSIONS: The results of this study support the use of the FSCI as a measure of family stress in research and practice.

Women with spinal cord injury and the impact of aging.

OBJECTIVES: The objectives of this study were to describe what women with longstanding spinal cord injury (SCI) feel they are experiencing as they age, how they are coping and what they require in order to ensure their continued social and economic participation in society. STUDY DESIGN, METHODS AND SETTING: :A naturalistic approach was taken, incorporating three focus groups (n=10) and key informant interviews (n=19) of women with SCI ranging in age from 31 to 70 years and living in rural and urban communities in Ontario, Canada. RESULTS: The women feel isolated and sense many of their key concerns are ignored or dismissed by health care and service providers. The common physical changes and concerns were gynecological/sexual and bowel and bladder issues. Socio-emotional changes with age included impact of their age-related changes on important relationships and re-evaluation of personal priorities. They articulated worries including declining health, increasing dependency and financial stresses. Additional resources they need to age successfully include improved environmental accessibility, assistive devices, more flexible and responsive attendant and household support, access to recreation and fitness opportunities and peer and psychological support. CONCLUSIONS: Many of the issues raised by the women were consistent with the authors' previous examination of aging in men with SCI and women with disabilities. The most striking difference was their profound sense of isolation and perceptions that health care and service providers were unprepared or unwilling to address the unique issues they face as women living and now aging with SCI.

Defining community integration of persons with brain injuries as acculturation: a Canadian perspective.

In this study, the AIMS, a measure of community integration developed from acculturation theory, was used to explore the various ways that people with brain injuries, a smaller cultural or minority group, are involved with the larger cultural group and to evaluate rehabilitation outcome (i.e., reintegration into the community). Specifically, the AIMS assesses whether the needs of individuals with brain injuries in a number of areas are identified and supported in a way that supports community participation. In addition, the opinions of persons with a brain injury regarding their level of community integration were compared to the opinions of individuals who knew them well. The results of this study indicate that while a large proportion of the participants with brain injuries were integrated in traditional areas of service delivery such as medical services, housing and social activity, their disability-related needs were not being identified and supported adequately in the areas of spirituality and productive activity.

The community integration measure: development and preliminary validation.

OBJECTIVE: To present a new measure of community integration, the Community Integration Measure (CIM), and to offer preliminary information about its psychometric properties. DESIGN: Validation study. SETTING: Community. PARTICIPANTS: Ninety-two participants placed in 3 subgroups (brain injury survivors, n = 41; significant others, n = 36; college students, n = 15). MAIN OUTCOME MEASURES: The distributional properties, factor structure, internal consistency reliability, content validity, discriminant validity, concurrent validity, and construct validity of the CIM. RESULTS: All items correlated positively with each other and with the total score. Principal components factor analysis confirmed a 1-factor structure, which explained 44.1% of the variance. Internal consistency reliability, using Cronbach's alpha, was.87. Content validity was assured by the development procedure, correspondence with the theoretical model, and direct use of consumer language. Discriminant validity was supported by the CIM's ability to differentiate between subsamples. Criterion validity was supported by using correlations with the Community Integration Questionnaire. Construct validity was supported by correlations with the Interpersonal Support Evaluation List. CONCLUSION: The CIM offers a brief, easily administered measure of community integration that conforms to an empirically derived theoretical model and is psychometrically sound.

Coping and stress in Canadian family caregivers of persons with traumatic brain injuries.

The purpose of this study was to document the stresses reported by Canadian caregivers of persons with brain injuries and to consider the factors which serve to mediate or moderate such stress. Highest stress scores on the Holroyd Questionnaire on Resources and Stress-Short Form (QRS) were associated with Lifespan Care and Personal Burden. Although overall burden as reported on the QRS by parents and spouses did not differ from other studies, it did differ somewhat for specific types of burden. Social Support and Spiritual Support, as measured by the F-COPES, fell within the medium use category, and scores for Reframing, Mobilizing and Passive Appraisal fell within the high use category. In multiple regression analyses, client competency as measured by the Patient Competency Rating Scale emerged as a major predictor of stress associated with Cognitive Impairment, Physical Limitations, Lifespan Care, Terminal Illness Stress, Limits on Family Opportunities, and Personal Burden. In contrast, other client characteristics (e.g. Time Since Injury) accounted for relatively little variance. The results also indicate that both Refraining and Seeking Spiritual Support as coping strategies can make an important contribution to stress reduction.

Transitions to independent living after ABI.

One of the most challenging questions facing service providers and policy makers alike is the appropriate level of supervision for adults living in the community following a brain injury. In a 3-year province-wide study of people entering the community following brain injury rehabilitation, four individuals (out of 22 studied) made a transition from fully supervised living to lower levels of formal supervision during their first year in the community. The present study seeks to provide more information about these four individuals, the factors that allowed them to move to lower levels of supervision, and the perceived success of that transition. For each participant, the interviews conducted over the 1 year period in the initial study were reviewed in detail for information about independent living. In addition, each participant was interviewed again for this study, along with his significant other and three of the community programme staff who were most closely involved with his transition. To summarize, factors most salient in the success of transition included: (1) Roles and relationships of family and programme personnel; (2) staying away from drugs and alcohol; (3) availability of structured daily activities, including productive activity or community programme; (4) financial management; and (5) emotion and behaviour self-control. Secondary themes related to successful community living also included the availability of transportation and prior experience with community living since the onset of brain injury. These results offer the experience of four individuals in moving towards independent living. As such, they provide a starting point for further discussions of the process of supporting individuals to pursue the ultimate goal of independent living.

A transitional living environment for persons with brain injuries: staff and client perceptions.

Given increasing interest in social ecology and the impact of environmental factors upon rehabilitation outcomes, the purpose of this study was to begin to document the characteristics of a particular environment designed to meet the needs of persons with traumatic brain injuries. Staff and clients at the Transitional Living Centre of Kingston, Ontario (TLC), a community based post-acute rehabilitation programme providing both residential and day programmes for adults who have acquired brain injuries participated in this study by completing the Community-Oriented Programme Environment Scale (COPES). While COPES subscale scores for clients and staff were within the average range, the results of a multivariate analysis of variance indicated that client and staff perceptions of the TLC environment differed significantly on two subscales within the Personal Development Dimension (i.e., Personal Problem Orientation, Anger and Aggression) and on one subscale under the System Maintenance Dimension (i.e., Staff Control). The results of this study suggest that future research should consider the impact of staff and client perceptions on the effectiveness of the therapeutic environment of brain injury programmes.

The definition of community integration: perspectives of people with brain injuries.

Despite considerable attention to community integration and related topics in the past decades, a clear definition of community integration continues to elude researchers and service providers. Common to most discussions of the topic, however, are three ideas: that integration involves relationships with others, independence in one's living situation and activities to fill one's time. The present study sought to expand this conceptualization of community integration by asking people with brain injuries for their own perspectives on community integration. This qualitative study resulted in a definition of community integration consisting of nine indicators: orientation, acceptance, conformity, close and diffuse relationships, living situation, independence, productivity and leisure. These indicators were empirically derived from the text of 116 interviews with people with moderate-severe brain injuries living in the community. Eighteen adults living in supported living programmes were followed for 1 year, to track their evolving definition of integration and the factors they felt were related to integration. The study also showed a general trend toward more positive evaluation over the year, and revealed that positive evaluation was frequently related to meeting new people and freedom from staff supervision. These findings are interpreted in the light of recommendations for community programmes.

Stability of functional outcomes following transitional living programme participation: 3-year follow-up.

The functional status and perceived problems of 21 persons with severe brain injury were reported at admission, and at 1 and 3 years post-discharge from a community-based post-acute rehabilitation programme. Functional status was measured by participation in productive activity, financial support, place of residence and level of supervision required. Improvements observed at 1-year follow-up remained stable or had improved at 3-year follow-up. Loneliness and depression, while not reported at admission, increased over time to become the two problems reported most frequently at 3-year follow-up.

Research and practice with congenital amputees: making the whole greater than the sum of its parts.

This paper highlights the need for methodologically sound research on the motor, cognitive and psychosocial development of children with congenital limb deficiencies and the integration of findings in these three areas. Such topics have received little attention in the literature and systematic attempts to apply developmental theory to the assessment, fitting, training and evaluation of these children seldom have been made. A number of important current issues in research and practice are critically reviewed including optimal age for fitting, training procedures, prosthesis usage, cognitive deficits and vulnerability to psychosocial problems. Recommendations for the adoption of a more holistic approach to research and practice with amputee children are presented and the need to develop strategies for systematic evaluation and follow up is emphasized.

Family resources and stress associated with having a mentally retarded child.

Concepts drawn from family stress theory and current empirical information on families of handicapped children were integrated to further understand factors influencing parental adjustment to stress associated with such children living at home. Internal and external family resources and characteristics of the children were examined. Mothers (n = 60) were asked to complete four relevant questionnaires. Results of multiple regression analyses indicated that characteristics of the child and the family's crisis-meeting resources were significant predictors of various forms of stress. Clinical implications of these findings and current research directions were discussed.

Attitudes of primary school children toward the physical appearance and labels associated with Down syndrome.

Attitudes of 80 kindergarten and 80 third-grade subjects responding to videotape excerpts of children either with or without Down syndrome and with or without the label and description "mentally retarded" were examined and affect, belief endorsements, and behavioral intentions were assessed. Multivariate analyses of variance indicated that subjects were significantly less positive in their affective evaluations and belief endorsements toward target children labeled and described as mentally retarded. Third-grade children were significantly more negative in their affective responses toward children with Down syndrome, and kindergarten children were more positive in their evaluations of such children. Possible reasons for the lack of significant gender and contact differences were discussed.