Both the population of siblings of youth with developmental disabilities (DDs) and the popularity of clinical services designed for these youth are on the rise. However, the research base for such services has yet to be evaluated. A systematic review of studies on intervention and support for siblings of youth with DDs was conducted in order to evaluate the current state of the literature and provide recommendations for research and practice. Sixteen articles were selected and reviewed in terms of their experimental design, participant characteristics, measurement, intervention or support group protocol, outcomes, and dissemination of findings. Results indicate substantial variability in both methodology and outcomes across sibling-focused intervention and support group studies, which put the overall effects and utility of these services into question. Recommendations for future research are outlined, with a focus on advancing a more systematic and careful approach to asking and effectively answering questions about siblings, their families, and meaningful services for both.

Intervention and support for siblings of youth with developmental disabilities: a systematic review.

© 2020 The Authors. Campbell Systematic Reviews published by John Wiley & Sons Ltd on behalf of The Campbell Collaboration Background: There are approximately 1 billion people in the world with some form of disability. This corresponds to approximately 15% of the world's population (World Report on Disability, 2011). The majority of people with disabilities (80%) live in low- and middle-income countries (LMICs), where disability has been shown to disproportionately affect the most disadvantaged sector of the population. Decision makers need to know what works, and what does not, to best invest limited resources aimed at improving the well-being of people with disabilities in LMICs. Systematic reviews and impact evaluations help answer this question. Improving the availability of existing evidence will help stakeholders to draw on current knowledge and to understand where new research investments can guide decision-making on appropriate use of resources. Evidence and gap maps (EGMs) contribute by showing what evidence there is, and supporting the prioritization of global evidence synthesis needs and primary data collection. Objectives: The aim of this EGM is to identify, map and describe existing evidence of effectiveness studies and highlight gaps in evidence base for people with disabilities in LMICs. The map helps identify priority evidence gaps for systematic reviews and impact evaluations. Methods: The EGM included impact evaluation and systematic reviews assessing the effect of interventions for people with disabilities and their families/carers. These interventions were categorized across the five components of community-based rehabilitation matrix; health, education, livelihood, social and empowerment. Included studies looked at outcomes such as, health, education, livelihoods, social inclusion and empowerment, and were published for LMICs from 2000 onwards until January 2018. The searches were conducted between February and March 2018. The EGM is presented as a matrix in which the rows are intervention categories (e.g., health) and subcategories (e.g., rehabilitation) and the column outcome domains (e.g., health) and subdomains (e.g., immunization). Each cell lists the studies for that intervention for those outcomes, with links to the available studies. Included studies were therefore mapped according to intervention and outcomes assessed and additional filters as region, population and study design were also coded. Critical appraisal of included systematic review was done using A Measurement Tool to Assess Systematic Reviews’ rating scale. We also quality-rated the impact evaluation using a quality assessment tool based on various approaches to risk of bias assessment. Results: The map includes 166 studies, of which 59 are systematic reviews and 107 impact evaluation. The included impact evaluation are predominantly quasiexperimental studies (47%). The numbers of studies published each year have increased steadily from the year 2000, with the largest number published in 2017.The studies are unevenly distributed across intervention areas. Health is the most heavily populated area of the map. A total of 118 studies of the 166 studies concern health interventions. Education is next most heavily populated with 40 studies in the education intervention/outcome sector. There are relatively few studies for livelihoods and social, and virtually none for empowerment. The most frequent outcome measures are health-related, including mental health and cognitive development (n = 93), rehabilitation (n = 32), mortality and morbidity (n = 23) and health check-up (n = 15). Very few studies measured access to assistive devices, nutrition and immunization. Over half (n = 49) the impact evaluation come from upper-middle income countries. There are also geographic gaps, most notably for low income countries (n = 9) and lower-middle income countries (n = 34). There is a fair amount of evidence from South Asia (n = 73) and Sub-Saharan Africa (n = 51). There is a significant gap with respect to study quality, especially with respect to impact evaluation. There appears to be a gap between the framing of the research, which is mostly within the medical model and not using the social model of disability. Conclusion: Investing in interventions to improve well-being of people with disabilities will be critical to achieving the 2030 agenda for sustainable development goals. The EGM summarized here provides a starting point for researchers, decision makers and programme managers to access the available research evidence on the effectiveness of interventions for people with disabilities in LMICs in order to guide policy and programme activity, and encourage a more strategic, policy-oriented approach to setting the future research agenda.

https://onlinelibrary.wiley.com/doi/pdf/10.1002/cl2.1070

Evidence and gap map of studies assessing the effectiveness of interventions for people with disabilities in low-and middle-income countries

Objective This research aimed to provide new knowledge about the emotional experiences of siblings of children with rare disorders. Methods Qualitative thematic analysis was conducted based on videotapes of 11 support groups for 58 siblings aged 7-17 years (Mage = 11.4 years, SD = 2.4) of children with rare disorders. Results Participants described contradictory emotions in three main contexts: (1) implications of the disorder (knowledge, medical issues, prognosis); (2) consequences for family life (practical implications, limitations of the child with disorder, perspectives on the sibling relationship); and (3) consequences for social life (reflections about (ab)normality, reactions from others). Passive coping strategies were frequently described relative to active coping strategies. An emerging dilemma for participants was hiding versus sharing emotional experiences. Conclusions Siblings' emotional experiences are characterized by diverse and contradictory feelings. Interventions to promote emotional health in siblings of children with rare disorder should address this complexity.

/pdf/emotional-experiences-among-siblings-of-children-with-rare-428raqiwjv.pdf

Emotional Experiences Among Siblings of Children With Rare Disorders

Siblings of children and young people with a chronic illness are at increased risk of poor psychological functioning. A number of studies have attempted to implement and evaluate interventions targeting the psychological well-being of this at-risk group. This systematic review summarises the evidence regarding psychological functioning of siblings following an intervention targeting their well-being. The meta-analysis considered behaviour and knowledge, two of the most frequently studied outcomes. The following databases were used: PsycINFO, EMBASE, CINAHL, PubMed, Scopus and Web of Science. Seventeen studies were eligible to be included in the systematic review and eight in the meta-analysis. Results from the systematic review reflected the inconsistency of intervention evaluations in this area with a high level of heterogeneity and a total of 23 outcomes considered across the 17 included studies. The meta-analysis estimated effect sizes using a standardised mean difference (SMD) approach. Pre-post analysis suggested significant improvement in behavioural outcomes and knowledge of their sibling's health conditions with a SMD of - 0.44 [95% CI (- 0.6, - 0.29); p = 0.000] and 0.69 [(95% CI = 0.42, 0.96); p = 0.000], respectively. The SMD was not significant for behavioural outcomes when considering treatment-control studies. In conclusion, the findings suggest interventions for well-being have a positive effect on the psychological functioning of siblings of children and young people with a chronic illness, but their specificity needs to be established. There is a need for further, more methodologically robust research in this area.

/pdf/impact-of-well-being-interventions-for-siblings-of-children-3op7tj1bde.pdf

Impact of Well-being Interventions for Siblings of Children and Young People with a Chronic Physical or Mental Health Condition: A Systematic Review and Meta-Analysis

This article reviews the literature on modifiable factors associated with mental health in siblings of children with chronic illness. Three clinical databases were searched. A total of 17 studies met the inclusion criteria. Several key themes emerged from the review. Better sibling mental health was associated with camp attendance, perceived parent/peer support, illness education and enhancing control through cognitive coping strategies and routine. Parental and sibling psychoeducation interventions and social support may enhance children's mental health when their sibling has a chronic illness.

A review of factors associated with mental health in siblings of children with chronic illness.

Aim: Chronic illness or disability in children can have a deleterious effect on the psychosocial health of well siblings. This systematic review synthesised evidence from studies evaluating sibling-oriented care aimed at improving behavioural and emotional outcomes in well siblings of children with chronic illness or disability.

Methods:  Twenty electronic databases were searched. Study selection, data extraction and assessment of methodological quality were performed by two independent reviewers.

Results:  Five controlled and nine uncontrolled studies were included. In higher-quality controlled trials, benefits of sibling-oriented care included reduced anxiety, improved mood and behavioural adjustment; however, these findings were not consistently demonstrated across studies. Study differences made it difficult to determine which sibling care features were most salient.

Conclusions:  Study findings highlight the potential for enhancing emotional and behavioural outcomes in well siblings. Future evaluations need to clearly identify the intended purpose of the care (what improvements are intended) and which types of siblings are most likely to benefit. This approach may yield more consistent and clinically important results.

A systematic review of interventions to support siblings of children with chronic illness or disability.

The purpose of this study was to describe child life services provided to siblings of hospitalised children and the resources associated with these services in major paediatric hospitals throughout the United States (U.S.) and Canada. Cross-sectional data on sibling support services and resources needed for capacity building were collected via a web-based survey from administrative and clinical practice leads in identified Child Life Departments. The 34-item survey targeted three domains: Facility Demography, Sibling Support Resources, and Capacity Building and Funding. Surveys were sent to 217 leads and 109 responded (50% response rate). Of the 109 respondents, 48% indicated their facilities provided sibling support including grief or palliative support (90% of facilities) and therapeutic play (94% of facilities). More than 50% indicated that these services were not evaluated for improved family or sibling outcomes. Twenty-six percent of the respondents indicated having monies earmarked for sibling support from the following sources: hospital budget (34%), private donation (25%), foundation (22%), other (14%) and government (4%). There was a significant relationship between respondents who indicated sibling support services and funding (chi(2)= 0.0001). Resources identified included staff availability and funding as needed for sibling support capacity building. Given the limited sibling support available in major paediatric hospitals across the U.S. and Canada, hospitals with existing resources should act as exemplars and evaluate the impact of their services with clear dissemination to other facilities. In addition to defining service effectiveness, this evaluation can help to determine the most fiscally responsible ways to deliver sibling support in their established facilities and others.

Dawn Wrightson

Papers

A systematic review of interventions to support siblings of children with chronic illness or disability.

Providing support to siblings of hospitalised children.