Patricia Minnes

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 ones living situation and activities to fill ones 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.

Behavior Problems in Young Children With or At Risk for Developmental Delay

We examined the prevalence of behavior problems and their relationship to child, parent, and family factors in 76 children with or at risk for developmental delay. Parents reported that 42% of the children had behavior problems. Child Behavior Checklist (CBC) scores revealed that 25% of the sample scored above the borderline cutoff. Although the total, externalizing, and internalizing mean CBC scores did not differ from the normative group (same-aged peers without developmental delay), each of the syndrome subscales was significantly higher in the study group. The Reiss Scales for Childrens Dual Diagnosis revealed that, as compared to older children (≥4 years) with developmental delay, the study sample scored significantly lower on the total score and 8 of the 10 subscales. Increased CBC total scores were significantly related to dependency and management of the child, birth weight, gestational length, paternal illness, maternal depression, perceived personal burden of care, maternal escape-avoidance coping strategy, family disharmony, and financial stress. CBC total scores were significantly negatively correlated with being of a multiple birth, paternal education, maternal employment, two-parent family, family social support, and family income. Multiple regression analyses revealed that an empirically-derived combination of child, parent, and family variables accounted for 31% of the variance in CBC total scores. Our findings suggest that 2-year old children with or at-risk for developmental delay may already be showing signs of increased risk of behavior problems relative to peers without developmental delay. We identified several child, parent, and family variables that may help to pinpoint children at increased riskxs for psychopathology.

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.

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.

Family Stress Associated with a Developmentally Handicapped Child

Publisher Summary This chapter provides an overview of the research regarding family responses to a handicapped child using family stress theory as a framework. It focuses upon family coping and family stress and describes the factors, which facilitate family adjustment to a handicapped child. While the stress experienced by mothers, fathers, and siblings of developmentally handicapped children is widely documented in case studies and retrospective personal accounts, the latest research focuses increasingly upon the relationships between family resources, coping strategies, and stress associated with a handicapped child. With the growing need for community based support systems for families of developmentally handicapped children across the life-span, the data gathered from research that takes a multidimensional perspective should be of great value to professionals, caregivers, and parents as the complex relationships among family stress, coping, and adaptation are unravelled.

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.

'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.

Staff Attitudes towards the Sexuality of Persons with Intellectual Disability.

The purpose of the present study was to assess attitudes towards the sexuality of persons with intellectual disability held by staff employed in the field, using an instrument originally designed by Brantlinger (1983). In contrast to the findings of earlier studies (Haavik & Menninger, 1981; Mitchell, Doctor & Butler, 1978; Saunders, 1979) these results indicated that in general the staff held moderately liberal attitudes. Younger staff members (under 40 years of age) and those who reported a university education held more liberal attitudes towards the sexuality of persons with intellectual disability. Professional staff had significantly more liberal attitudes than those of direct-care staff. Implications of the results and directions for future research are discussed.

The modification of phobic behavior by covert reinforcement

Covert reinforcement procedures were compared with experimental desensitization in their power to (a) reduce subjective distress, and (b) increase approach behavior to a harmless snake. Six groups were included in the study: (1) Experimental desensitization (ED); (2) Covert positive reinforcement (CPR); (3) Covert negative reinforcement (CNR); (4) Noncontingent covert positive reinforcement (N-CPR); (5) Placebo controls (PC); and (6) No-treatment controls (NT). The results indicated that CPR and ED were equally effective, and both showed greater improvement than either of the control groups. CNR subjects also did better than the controls, but after treatment the combined CPR and ED group showed a greater increase in approach behavior than the CNR subjects. Thus CPR appears to be an equal alternative to ED and may be more economical of time, whereas CNR may only be useful when the other two procedures are not appropriate. An examination of the theoretical rationale of CPR provided equivocal results, and further research is necessary.

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.