The needs of aging parents caring for an adult with acquired brain injury.

This study focused on issues of concern to and service needs of older parents caring for an adult son or daughter with an acquired brain injury (ABI) in Ontario. Three issues were identified as particularly challenging: diagnosis of the brain injury, parents' feelings about the cause of the brain injury, and planning for long-term accommodation for their family member with a brain injury. The most frequently cited services needed for the person with ABI were social and/or recreational activities, day programs, and residential placement. The most frequently cited services needed by parents were parent education and support groups. The information gathered provides a base for further research in other sectors. Implications of these initial findings for clinical practice and policy and program development are discussed.

Addressing health disparities through promoting equity for individuals with intellectual disability.

Intellectual disabilities (ID) are conditions originating before the age of 18 that result in significant limitations in intellectual functioning and conceptual, social and practical adaptive skills. IDs affect 1 to 3% of the population. Persons with ID are more likely to have physical disabilities, mental health problems, hearing impairments, vision impairments and communication disorders. These co-existing disabilities, combined with the limitations in intellectual functioning and in adaptive behaviours, make this group of Canadians particularly vulnerable to health disparities. The purpose of this synthesis article is to explore potential contributory factors to health vulnerabilities faced by persons with ID, reveal the extent and nature of health disparities in this population, and examine initiatives to address such differences. The review indicates that persons with ID fare worse than the general population on a number of key health indicators. The factors leading to vulnerability are numerous and complex. They include the way society has viewed ID, the etiology of ID, health damaging behaviours, exposure to unhealthy environments, health-related mobility and inadequate access to essential health and other basic services. For persons with ID there are important disparities in access to care that are difficult to disentangle from discriminatory values and practice. Policy-makers in the United States, England and Scotland have recently begun to address these issues. It is recommended that a clear vision for health policy and strategies be created to address health disparities faced by persons with ID in Canada.

Who participates in support groups for parents of children with autism spectrum disorders? The role of beliefs and coping style.

One hundred forty-nine parents of children with autism spectrum disorders (ASD) completed online questionnaires measuring their beliefs about support groups and ASD, coping style, social support, mood, and use of support groups. Those currently using parent support groups (PSGs) reported using more adaptive coping strategies than both parents who had never used PSGs and parents who had used PSGs in the past. Past PSG users reported that they did not find the groups as beneficial as current users, and parents who had never participated in PSGs reported difficulties with the accessibility of PSGs. Based on the current results, interventions for parents of children with ASD that are focused on meeting the needs identified by participating parents may be most effective.

Logging on: evaluating an online support group for parents of children with autism spectrum disorders.

Twenty mothers participated in an online support group for parents of children with autism spectrum disorders. Twenty-five unrelated parents participated in a no-treatment control group. The participants completed online questionnaires prior to and following the 4-month support group, to evaluate changes in mood, anxiety, parenting stress, and positive perceptions. No significant differences between the groups or across time were found. However, parents who participated in the group reported being satisfied with the support they received and finding the group helpful. Issues related to participant recruitment and retention are discussed. Further research is required to investigate the efficacy of online support groups for parents of children with ASD.

Predicting social and functional outcomes for individuals sustaining paediatric traumatic brain injury.

OBJECTIVE: To determine the efficacy of models employing the classification of severity of injury, based on either GCS scores or clinical findings using standardized test scores for Occupational Therapy, Physiotherapy and Psychology in predicting outcomes associated with paediatric traumatic brain injury (TBI). METHOD: Medical records were reviewed to obtain GCS scores and standardized tests used in the clinically based classification of severity of injury for 30 individuals who sustained a paediatric TBI and were patients of a brain injury treatment programme. Interviews were conducted with parents to obtain current data on social participation, cognitive functioning and environmental factors. RESULTS: Three variables emerged as significant predictors of outcome: age at injury, clinical ratings of injury severity and environmental factors. CONCLUSION: Findings offer preliminary support for the idea that a combination of factors, including age at injury, clinical expertise and the environment, provide the best estimate of long-term outcome.

A comparison of challenges faced by parents of children with ABI with and without access to third party funding.

BACKGROUND: In Canada, allocation of rehabilitation services is often based on the assumption that families who have third party insurance funding are well served by the private sector system and are not in need of publicly funded rehabilitation services. However, there has been little research comparing the experiences of caregivers with and without access to third party insurance funding; data that could inform service planning and provision. METHOD: The current study compared the stresses, resources and psychological health of caregivers of children with Acquired Brain Injury (ABI) with and without third party funding. RESULTS: Caregivers with third party funding (MVA) reported a similar level of stress in comparison to caregivers without funding (non-MVA); however there were differences in what these families perceived as stressful. CONCLUSIONS: Although results indicated significant psychological distress and depressive symptoms for both groups, parents in both groups reported high availability of and satisfaction with services, although they used very few services. Implications for clinical services are discussed.

'Participate to learn': a promising practice for community ABI rehabilitation.

OBJECTIVE: To identify best practices and promising practices to enhance participation in meaningful and productive activities. METHOD: An electronic search of the ABI rehabilitation research literature since 1990 yielded 974 articles of which 30 focused on interventions that targeted participation and evaluated effectiveness using direct measures of participation. Three reviewers rated these articles according to the standards set out by the Centre for Reviews and Dissemination. Following the systematic review, an interpretive review of the same articles was completed. RESULTS: Only three studies were rated as strong. No best practices were identified. Three promising practices found some support. The interpretive review suggested 'Participate to learn' as a useful rehabilitation model. The model rests on roles as goals, learning by experience in real-life contexts and the use of personal and environmental support to enable participation. CONCLUSIONS: 'Participate to learn' is both a credible rehabilitation model and deserving of more study.

Community integration: a useful construct, but what does it really mean?

The primary objective of this paper is to contribute to a clearer understanding of the construct of community integration. Rehabilitation literature is discussed in relation to three measures of community integration: the AIMS Interview, Community Integration Measure and Community Integration Questionnaire. Results of a principal components analysis with varimax rotation indicated that the measures are independent and coherent. Significant correlations were not found between total scores on the three measures and problem behaviour or quality of life. However, analysis of individual items on the scales yielded one significant correlation between the first item on the Community Integration Measure (i.e. sense of belonging) and quality of life. The need for a clear statement in future research regarding the definition of community integration is emphasized, and inclusion of both subjective perceptions and objective indicators of community integration is recommended.