A community-based intervention for siblings and parents of children with chronic illness or disability: the ISEE study

Williams, Phoebe D.; Williams, Arthur R.; Graff, J. Carolyn; Hanson, Sandra; Stanton, Anne; Hafeman, Carol; Liebergen, Adrienne; Leuenberg, Karla; Setter, Robyn Karlin; Ridder, Lavonne; Curry, Heather; Barnard, Martha Underwood; Sanders, Susan

doi:10.1067/s0022-3476(03)00391-3

Cited by 91 publications

(127 citation statements)

References 13 publications

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“…Changes in treatment modality can have dramatic changes upon the burden of care and support required for families, with peritoneal dialysis making large demands particularly in young infants [20,21]. A recent study reports on a community-based programme of support for siblings focusing on their knowledge of their brother's/sister's illness, self-esteem, mood and access to support [22]. Support offered over a period of 12 months showed significant treatment gains.…”

Section: Discussionmentioning

confidence: 97%

The effects of chronic renal failure on siblings

2005

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It is well recognised that chronic illness in children can have a significant effect upon siblings, but their viewpoints need to be sought if we are to change our practice. We conducted semi-structured interviews at home with 15 siblings (8 males) aged 8-12 years whose brother/sister were on chronic dialysis or had received or were waiting for a renal transplant. The interviews were analysed using a grounded theory approach. The children also completed the Spence Children's Anxiety Scale (SCAS), which revealed no statistically significant evidence that they were exhibiting chronic clinical anxiety. Qualitative data indicated that siblings had a variety of concerns concerning their own health and that of their siblings and worried about the effects on family routine and separation from parents. The siblings felt more protective towards their chronically ill sibling and felt that they themselves needed to be more grown up. The study has implications for our clinical practice in that our psychosocial assessment of families needs to include an assessment of sibling needs and siblings should be involved when preparing patients for chronic renal failure treatment. The importance of maintaining family routines should be emphasised, as well as trying to involve siblings in unit activities.

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Section: Discussionmentioning

confidence: 97%

The effects of chronic renal failure on siblings

2005

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“…Measures that can be used to assess or evaluate interventions designed to ameliorate or alleviate the negative effects of chronic illness or disability on families and children are very welcome. 4,5,[26][27][28][29] The revised IOF should be added to the armamentarium of such measures. The results of this analysis suggest that this instrument can be used to generate such a measure with considerable confidence.…”

Section: Discussionmentioning

confidence: 99%

“…Chronic illnesses were cystic fibrosis, cancer, juvenile diabetes, spina bifida, and developmental disabilities. [5][6][7] Sample characteristics (Table I) …”

Section: Sample Characteristicsmentioning

confidence: 99%

Validity of the revised Impact on Family (IOF) scale

Williams

Piamjariyakul

Williams

et al. 2006

The Journal of Pediatrics

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“…Because these therapies are effective in improving a child' s functioning and longterm outcomes, parents exhaust their financial, physical, and emotional resources to provide for their children with special health care needs. [5][6][7][8] In addition to the significant out-of-pocket expense of these therapies, substantial time is spent learning to navigate the service delivery and eligibility system, coordinating care, advocating for coverage with insurance companies, and augmenting therapy with practice at home. 9,10 It is not that parents overlook their other children who are typically developing.…”

Section: Resultsmentioning

confidence: 99%

Assessing Functional Impairment in Siblings Living With Children With Disability

et al. 2013

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WHAT'S KNOWN ON THIS SUBJECT: Previous research on potential deleterious effects of typically developing children growing up in households with children with disability has produced mixed results. Research methods have been cited as a problem in many studies. WHAT THIS STUDY ADDS:This is the largest known empirical study comparing functional impairment in siblings living with a child with disability and siblings residing with children who are typically developing. This study also follows the trajectory of functional impairment across 2 measurement periods. abstract OBJECTIVE: The purpose of this study was to empirically test if siblings of children with disability had higher levels of parent-reported behavioral and emotional functional impairment compared with a peer group of siblings residing with only typically developing children. METHODS:This was a retrospective secondary analysis of data from the Medical Expenditure Panel Survey. We included only households with at least 2 children to ensure sibling relationships. Two groups of siblings were formed: 245 siblings resided in households with a child with disability and 6564 siblings resided in households with typically developing children. Parents responded to questions from the Columbia Impairment Scale to identify functional impairment in their children. RESULTS:On the basis of parent reports and after adjusting for sibling demographic characteristics and household background, siblings of children with disability were more likely than siblings residing with typically developing children to have problems with interpersonal relationships, psychopathological functioning, functioning at school, and use of leisure time (P , .05). The percentage of siblings of children with disability classified with significant functional impairment was 16.0% at the first measurement period and 24.2% at the second (P , .001). For siblings of typically developing children there was a smaller percentage increase from 9.5% to 10.3% (P , .001).CONCLUSIONS: Functional impairment is a key indicator for the need of mental health services and, as such, early assessment and interventions to limit increasing severity and short-to long-term consequences need to be addressed. Health care professionals need to consider a family-based health care approach for families raising children with disability. Pediatrics 2013;132:e476-e483 AUTHORS:

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A community-based intervention for siblings and parents of children with chronic illness or disability: the ISEE study

Cited by 91 publications

References 13 publications

The effects of chronic renal failure on siblings

The effects of chronic renal failure on siblings

Validity of the revised Impact on Family (IOF) scale

Assessing Functional Impairment in Siblings Living With Children With Disability

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