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Having a brother or sister with Down syndrome: perspectives from siblings.

ABSTRACT: This study asks brothers and sisters about their feelings and perceptions toward their sibling with Down syndrome (DS). We analyzed valid and reliable surveys from 822 brothers and sisters whose families were on the mailing lists of six non-profit DS organizations around the country. More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS. Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% plan to remain involved in their sibling's lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing.

SUBMITTER: Skotko BG

PROVIDER: S-EPMC3348944 | biostudies-literature | 2011 Oct

REPOSITORIES: biostudies-literature

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Having a brother or sister with Down syndrome: perspectives from siblings.

Skotko Brian G BG Levine Susan P SP Goldstein Richard R

American journal of medical genetics. Part A 20110909 10

This study asks brothers and sisters about their feelings and perceptions toward their sibling with Down syndrome (DS). We analyzed valid and reliable surveys from 822 brothers and sisters whose families were on the mailing lists of six non-profit DS organizations around the country. More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, a ...[more]

PMID: 21910244

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Project description:IntroductionSiblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and psychological outcomes of the siblings. There is a need to synthesise existing evidence and enhance our understanding about programmes for siblings to acquire knowledge, develop skills and become empowered that can help them to provide support to their brother or sister with a neurodisability. The objective of this review is to identify and map the characteristics and outcomes of programmes designed to prepare siblings in their future roles to support their brother or sister with a neurodisability.Methods and analysisThis review will be conducted using the Joanna Briggs Institute methodology for scoping reviews. An integrated knowledge translation approach will be used by partnering with the Sibling Youth Advisory Council comprised of siblings of individuals with a disability throughout all review phases. Databases to be searched include PsycINFO, Cumulative Index of Nursing and Allied Health Literature, Sociological Abstracts, Education Resources Information Center, EMBASE, Web of Science, MEDLINE (Ovid) and SPORTDiscus, from date of inception to November 2020. Studies of programmes designed for siblings of individuals with neurodisabilities, with no exclusion on the age of siblings or context, and published in English will be included. Extracted data will include details of programme structure and content, eligibility criteria and participants, context, study methods and outcomes. A summary of the results will be presented in a tabular form to provide an overview of the programmes with an accompanying narrative summary to address the research questions of this review.DisseminationFindings from this review will be shared using dissemination strategies in partnership with the Sibling Youth Advisory Council. We will share the findings with key stakeholders such as healthcare providers, researchers, and patient and family advocacy groups.

Project description:Abstract Objectives Nutrition interventions to improve infant and young child feeding (IYCF) and care in developing countries usually target mothers, while critical roles of other family members, particularly older siblings, are not well known. As part of the Engaging Fathers for Effective Child Nutrition and Development in Tanzania (EFFECTS) cluster-randomized trial (ClinicalTrials.gov: NCT03759821), we examined the roles of older children and adolescents in IYCF and care in rural Tanzania to develop and administer informed quantitative questionnaires on IYCF and care by older siblings. Methods Twelve mothers, 12 fathers, 4 grandmothers, and 4 older siblings (7–17 years of age) were purposively sampled for qualitative interviews conducted July-August 2018. Open-ended questions explored older siblings’ roles in IYCF and care, managing time for child care, and responsiveness to young children's hunger cues. Inductive and deductive approaches were used to identify themes from transcribed interviews. Findings supported development of two questionnaires on older children's roles in IYCF and care (14 questions each) that were administered to mothers and siblings in the EFFECTS baseline. Results Qualitative data indicate older siblings (male and female) are involved in food preparation (e.g., starchy staples), daily feeding, hygiene (e.g., washing baby after toileting) and care when the mother is unavailable due to other household activities. The EFFECTS study enrolled 960 households across 80 villages in Mara, Tanzania, and 53% of households identified at least one sibling who cares for an index child aged 0–18 months. Baseline data collection is ongoing and indicates prevalence and types of child care (e.g., feeding, playing, hygiene, responding to crying) provided by older siblings. Conclusions To our knowledge, this is the first mixed methods study developing instruments to investigate the role of older siblings in providing IYCF and care in a rural, developing country setting. As parents seek to meet household and livelihood needs, older siblings are often engaged in child feeding and care. Nutrition interventions should consider roles of all family members, including older children, in child feeding and care. Further research is needed to evaluate the effect of family-based interventions. Funding Sources Eleanor Crook Foundation and Conrad N. Hilton Foundation.

Project description:Evidence suggests that early life infections, presence of older siblings and furred pets in the household affect the risk of developing allergic diseases through altered microbial exposure. Recently, low gut microbial diversity during infancy has also been linked with later development of allergies. We investigated whether presence of older siblings, furred pets and early life infections affected gut microbial communities at 9 and 18 months of age and whether these differences were associated with the cumulative prevalence of atopic symptoms of eczema and asthmatic bronchitis at 3 years of age. Bacterial compositions and diversity indices were determined in fecal samples collected from 114 infants in the SKOT I cohort at age 9 and 18 months by 16S rRNA gene sequencing. These were compared to the presence of older siblings, furred pets and early life infections and the cumulative prevalence of diagnosed asthmatic bronchitis and self-reported eczema at 3 years of age.The number of older siblings correlated positively with bacterial diversity (p?=?0.030), diversity of the phyla Firmicutes (p?=?0.013) and Bacteroidetes (p?=?0.004) and bacterial richness (p?=?0.006) at 18 months. Further, having older siblings was associated with increased relative abundance of several bacterial taxa at both 9 and 18 months of age. Compared to the effect of having siblings, presence of household furred pets and early life infections had less pronounced effects on the gut microbiota. Gut microbiota characteristics were not significantly associated with cumulative occurrence of eczema and asthmatic bronchitis during the first 3 years of life.Presence of older siblings is associated with increased gut microbial diversity and richness during early childhood, which could contribute to the substantiation of the hygiene hypothesis. However, no associations were found between gut microbiota and atopic symptoms of eczema and asthmatic bronchitis during early childhood and thus further studies are required to elucidate whether sibling-associated gut microbial changes influence development of allergies later in childhood.

Dataset Information

Having a brother or sister with Down syndrome: perspectives from siblings.

Publications

Having a brother or sister with Down syndrome: perspectives from siblings.

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