Variables That Can Enhance and Complicate Sibling Caregiving of Individuals With Intellectual and Developmental Disabilities

Saxena, Mamta

doi:10.1111/jppi.12127

Cited by 13 publications

(17 citation statements)

References 68 publications

(88 reference statements)

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“…There are some data to suggest that birth order may have an impact on various elements of sibling experience. Saxena (2015) highlighted that in adulthood, older siblings have been found to be more involved in care and suggest this may be in response to parental expectations of older siblings in childhood. There are also data to suggest that relationships between siblings and their brother or sister with developmental disabilities may be more positive when they are the older sibling (Orsmond et al 2009).…”

Section: Discussionmentioning

confidence: 99%

A Population-Based Study of the Behavioral and Emotional Adjustment of Older Siblings of Children with and without Intellectual Disability

Hayden

Hastings

Totsika

et al. 2019

J Abnorm Child Psychol

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This is the first study on the behavioral and emotional adjustment of siblings of children with intellectual disabilities (ID) to use a population-based sample, from the third wave of the Millennium Cohort Study (MCS); a UK longitudinal birth cohort study. We examined differences between nearest-in-age older siblings (age 5–15) of MCS children (likely mainly with mild to moderate ID) identified with ID ( n = 257 siblings) or not ( n = 7246 siblings). The Strengths and Difficulties Questionnaire (SDQ) measured all children’s adjustment. For SDQ total problems, 13.9% of siblings of children with ID and 8.9% of siblings of children without had elevated scores ( OR 1.65; 95% CI 1.04, 2.62; p = 0.031). Similar group differences were found for SDQ peer and conduct problems. In logistic regression models, variables consistently associated with older sibling adjustment were: adjustment of the MCS cohort child, older sibling being male, family socio-economic position, primary carer psychological distress, and being from a single parent household. The ID grouping variable was no longer associated with adjustment for all SDQ domains, except siblings of children with ID were less likely to be identified as hyperactive ( OR 0.30; 95% CI 0.10, 0.87; p = 0.027). Some older siblings of children with ID may be at additional risk for behavioral and emotional problems. Group differences were related mainly to social and family contextual factors. Future longitudinal research should address developmental pathways by which children with ID may affect sibling adjustment.

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Section: Discussionmentioning

confidence: 99%

A Population-Based Study of the Behavioral and Emotional Adjustment of Older Siblings of Children with and without Intellectual Disability

Hayden

Hastings

Totsika

et al. 2019

J Abnorm Child Psychol

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“…In the initial study, data were collected through an online survey. We conducted an extensive literature search (e.g., Saxena, 2015;Stoneman, 2005) and then developed the survey based on the gaps in the extant research (e.g., other sibling roles besides caregiving) and the goals of the study. The authors'…”

Section: Methodsmentioning

confidence: 99%

“…In particular, sibling involvement in caregiving can be a critical component in the lives of adults with IDD, thus there is a need to further examine it in research (Saxena, 2015). Prior research has shown that future caregiving is more common for women, lone siblings, siblings in emotionally close relationships with their brothers and sisters with IDD, and siblings who live in close proximity to their brothers and sisters with IDD (Burke, Taylor, Urbano, & Hodapp, 2012;Heller & Kramer, 2009).…”

Section: Patterns Of Adult Sibling Role Involvement With Brothers Andmentioning

confidence: 99%

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Patterns of Adult Sibling Role Involvement with Brothers and Sisters with Intellectual and Developmental Disabilities

2018

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Adult siblings of individuals with intellectual and developmental disabilities (IDD) are increasingly involved in family care, yet, adult siblings consistently report needing more information and support to engage in these roles. Knowing more about which roles siblings are likely to assume may help address this need. Thus, we further examined the most common roles assumed by adult siblings (N= 171), the demographic variables related to an increased likelihood of assuming specific roles, and the potential clusters in patterns of role assumption. We transformed qualitative data from an online survey with four open-ended questions about sibling relationships and roles into quantitative presence data for role-related codes in order to examine relationships between assumed roles and demographic variables. The most common roles assumed by adult siblings were friend, advocate, caregiver, and sibling. Key demographic variables related to role assumption included disability severity, emotional closeness, and age of the brother or sister with IDD. Cluster analyses indicated five potential categories of adult sibling role involvement: Companion, Least Involved, Highly Involved, Needs Focused, and Professional. Implications and future areas of research are shared.

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“…Despite the contributions of siblings in the family context where their brother or sister (brother/sister) has a developmental disability, accurate understanding of their experiences, relationships with their brother/sister, and needs for support remains unexplored (Saxena, 2015). This is perhaps because many sibling researchers have thus far disregarded the utility of a theoretical framework to organize findings and understand the experiences of siblings (Saxena & Adamsons, 2013).…”

Section: Introductionmentioning

confidence: 99%

Mutual Exchange: Caregiving and Life Enhancement in Siblings of Individuals With Developmental Disabilities

Mauldin

Saxena

2017

Journal of Family Issues

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Individuals with disabilities increasingly live at home. This study focuses on experiences of adult siblings (aged 18 years and older) in the United States who have a brother or sister with an intellectual/developmental disability. It is based on qualitative survey data (n = 224). We coded narratives of siblings’ experiences and identified themes, correlating themes with demographic characteristics. The major finding was that narratives of the youngest age group (aged 18-25 years) had the highest number of direct care codes. This group of siblings also had the highest number of codes indicating that their lives were enhanced by their brother or sister. To account for this, we utilize the mutual exchange theory of care from sociology and a social model of disability. As a result, we suggest a richer theoretical understanding of care and disability that can capture these nuances, and comment on some of the historical tensions between disability studies and caregiving.

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Variables That Can Enhance and Complicate Sibling Caregiving of Individuals With Intellectual and Developmental Disabilities

Cited by 13 publications

References 68 publications

A Population-Based Study of the Behavioral and Emotional Adjustment of Older Siblings of Children with and without Intellectual Disability

A Population-Based Study of the Behavioral and Emotional Adjustment of Older Siblings of Children with and without Intellectual Disability

Patterns of Adult Sibling Role Involvement with Brothers and Sisters with Intellectual and Developmental Disabilities

Mutual Exchange: Caregiving and Life Enhancement in Siblings of Individuals With Developmental Disabilities

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