Amber Savage

Benefit-finding or finding benefits? The positive impact of having a disabled child

This study investigated the positive impact of having a disabled child. The question addressed is whether the positive impacts reported by parents are better characterised as artefacts of stress-processing or transformational outcomes. A total of 538 parent-carers in Alberta, Canada completed a survey. Most parents reported benefits. Their reports were corroborated by measures of family cohesion and social support. Reported benefit had no observed stress-buffering effects. The findings suggest that reported benefits are not merely perceived for the sake of coping. These are better viewed as outcomes of a transformational life-learning process. When parent-carers report benefits, we should take them at their word.

Stress and Resilience Among Families Caring for Children with Intellectual Disability: Expanding the Research Agenda

Parents of children with intellectual disability (ID) tend to report higher-than-average rates of stress, anxiety and depression. Chronic psychological distress may place parents at increased risk of marital disruption, family dysfunction, and for a number of physical and mental health conditions. The prevailing approach in the literature starts from the premise that (the care needs of) the child with ID is the stressor and, in doing so, equates resilience with the successful adaptation of families to caring for a child with ID. This approach naturally leads to proposals for special services aimed at modifying or reforming the individual child, caregiver and/or family. In this paper, we highlight some of the limitations of a research programme that frames the problem as family adaptation to caring for a child with ID. We argue for expanding the research agenda to consider the adaptation of families caring for children with ID through greater understanding of the social-ecological constraints on families and the resources needed to meet the ‘normal’, everyday adaptive challenges they face.

Integrating Triple P into Existing Family Support Services: A Case Study on Program Implementation

The purpose of this paper is to present a case study of “evidence-based” program uptake and implementation. The process of integrating Triple P (levels 2 and 3) into existing family support centers in Alberta, Canada, was examined. We conducted ten individual interviews with directors, and ten group interviews, involving a total of 62 practitioners across ten Triple P pilot sites. Key findings show that there was variability in the approach and extent to which Triple P was integrated into family support centers. Five key factors impacting the integration process emerged from the interviews. These were: (1) the level of development of pre-existing support services; (2) the degree of “fit” between the Triple P program approach and existing agency practice, including the perceived suitability/unsuitability for some client groups; (3) practitioner perceptions of the adaptability of the program; (4) rules about who can and who cannot use Triple P resources; and (5) training and sustainability issues. In addition to identifying specific factors, this study was able to provide some insight as to why and how these factors were significant, thereby adding to the literature on knowledge/program dissemination processes.

Rethinking resilience in families of children with disabilities: a socioecological approach

This paper explores resilience in families of children with disabilities in the Province of Alberta, Canada. Utilizing Ungars social ecology of resilience, we present an analysis of 78 responsive interviews drawn from a three-year multimethod study. We show that families who reported doing well were able to conduct their lives with a ‘business as usual’ approach to their daily lives, in contrast to families who were struggling and had reported that disability had overtaken their day-to-day routines and activities. Exploring factors that led to these experiences, we show the importance of social context in understanding family ‘well-doing’ in families with disability. The policy and program implications of our findings are discussed.

Suicidal Ideation Among Adults with Disability in Western Canada: A Brief Report

This study investigated prevalence and risk factors for suicidal ideation among adults with self-reported disability in Western Canada. The method was secondary data analysis utilising the Canadian Community Health Survey. The odds of 12-month suicidal ideation are 3.5 times greater for adults with self-reported disability compared with non-disabled adults, controlling for age, sex, ethnicity, and psychiatric morbidity. The heightened risk of ideation among adults with self-reported disability is partially explained by social adversity, including food insecurity and low sense of community belonging. Reducing suicide risk among adults with disability requires a broad-spectrum approach, including mental health care, and strategies to ameliorate social and economic hardship.

Parent-mediated intervention: adherence and adverse effects.

Abstract Purpose: The purpose of this study was to investigate parent implementation of home-based therapy regimens, and the relationship between implementation and family-level outcomes. Method: A stratified (by child age group) random sample of 538 families raising children with disabilities in Alberta, Canada took part. Participants completed the Family Life Survey, which incorporated child and family measures, and items measuring parent implementation of home-based therapy regimens. Results: Parents are more likely to implement therapeutic regimens when these are “enfolded” into other daily activities and routines. If parents have to “find a slot” in the daily routine to implement therapy, they will sacrifice personal leisure, participation in paid work, and time spent with other family members. Greater parent sacrifices/trade-offs was negatively associated with family well-being. Conclusion: As a general rule, children do well when their families do well, and families do well when they have the resources they need to juggle work and family and care demands. Recruiting parents as interventionists can tax family resources. Rehabilitation professionals must weigh up the pros and cons of parent-mediated intervention, and look to enfolding therapy into the everyday family routine. Implications for Rehabilitation Parents are more likely to implement prescribed therapeutic activities and exercises when these are “enfolded” into the everyday family routine. Higher levels of parental adherence and implementation of home-based therapy programs is associated with poorer family well-being. Rehabilitation professionals must weigh the pros and cons of parent-mediated intervention, and help families find ways to enfold intervention into their daily routine.

Disability-based inequity in youth subjective well-being: current findings and future directions

This selective, critical literature review synthesizes recent research exploring disability-based disparities in the subjective well-being and living conditions of youth in high-income countries. Compared with their non-disabled peers, disabled youth report lower levels of happiness, lower global life satisfaction and higher rates of suicidal ideation. Emerging evidence suggests that the relatively poor subjective well-being of disabled youth reflects, at least in part, differential access to material and social resources rather than the presence of chronic conditions or impairment per se. These findings indicate that disability-based disparities in youth subjective well-being are socially patterned and preventable.

Parent needs and family support service outcomes in a Canadian sample

• Summary: Parent support needs and family support service (FSS) outcomes were investigated. A total of 923 parent participants were recruited through 20 community-based FSS providers in Alberta, Canada. Participants completed a survey, incorporating well validated child, parent and family outcome measures, a minimum of 8–12 weeks after utilizing their FSS. • Findings: Overall, parent need satisfaction was high. However, low socio-economic status, English as a second language, parental disability or chronic health condition, and child disability or chronic health condition were associated with lower levels of parent need satisfaction. Higher levels of need satisfaction were linked to lower levels of parenting stress and more positive parent–child interactions. These, in turn, were linked to more positive family functioning and fewer child difficulties. • Applications: Mediation analysis and qualitative findings suggest that family support services are making a positive difference by creating points of ‘connection’, including opportunities for informal learning and peer-support. We argue that the informal, ‘social networking’ role of family support services should be valued alongside evidence-based parenting training programs.

Ameliorating Psychosocial Risk Among Mothers with Intellectual Impairment

The purpose of this study was to pilot a flexible, group-based program designed to strengthen the social connections and enhance the psychological well-being of mothers with intellectual impairment. A multi-site, mixed-method, pretest–posttest design was employed. To obtain rich process and outcome data, the evaluation incorporated measures of psychosocial well-being, goal achievement scaling, and interviews with group facilitators and participants. A total of 18 mothers completed the program. Participation was associated with a meaningful reduction in psychological distress with effect sizes ranging from .57 for depression to .71 for anxiety. Participating in the group program gave the mothers something to look forward to each week, opportunities to learn from and support others, and the feeling of “being a part of society”. Further research is needed to determine whether these promising results can be replicated, and to evaluate the long-term impact of the program on mothers and their children.

Overweight and obesity among children at risk of intellectual disability in 20 low and middle income countries

BACKGROUND Children with intellectual disability (ID) in high income countries are at significantly greater risk of obesity than their non-disabled peers. We aimed to estimate the prevalence of overweight and obesity in 3 to 4-year-old children who are/are not at risk of ID in low and middle income countries. METHOD Secondary analysis of Round 4 and 5 UNICEF Multiple Indicator Cluster Surveys (MICS) from 20 low and middle income countries that included a total of 83 597 3 to 4-year-old children. RESULTS Few differences in risk of overweight or obesity were apparent between 3 and 4-year-old children identified as being at risk/not at risk of ID in 20 low and middle income countries. In the two countries where statistically significant differences were observed, prevalence of overweight/obesity was lower among children at risk of ID. CONCLUSIONS These results stand in stark contrast to evidence from high income countries which suggest that children with ID are at significantly increased risk of obesity when compared to their non-intellectually disabled peers.