The daily patterns of time use for parents of children with complex needs

McCann, Damhnat; Bull, R; Winzenberg, Tania

doi:10.1177/1367493511420186

Cited by 183 publications

(155 citation statements)

References 54 publications

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“…[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. Parents worry that they can't provide enough for all their children.…”

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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Section: Resultsmentioning

confidence: 99%

Assessing Functional Impairment in Siblings Living With Children With Disability

et al. 2013

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“…Compared with parents of typically developing children, parents of children with special needs spend longer time in childcare activities (Crowe & Florez, 2006;McCann, Bull, & Winzenberg, 2012). One study found that mothers of children with a disability engaged in childcare activities on average 13.1 hours more per week than mothers of children without a disability (Crowe & Florez, 2006).…”

Section: Mothers' Experiences When There Is a Child With Asd In Theirmentioning

confidence: 99%

“…We chose these 14 activities from previous publications on time use of mothers of children with a disability (Gevir, Goldstand, Weintraub, & Parush, 2006;McCann et al, 2012). The fourteen activities listed in this study were (1) sleep, (2) grooming and personal hygiene, (3) meal preparations and clean up, (4) having a meal, (5) taking care of child, (6) travel time to and from school or work, (7) time spent at work, (8) personal leisure time, (9) house duties, (10) shopping, (11) having quiet time or down time, (12) visiting family/friends, (13) studying, and (14) voluntary work.…”

Section: Time Use Estimate Tablementioning

confidence: 99%

“…However, mothers of children with complex needs, such as ASD, may need to seek part-time employment as the demand to cater for their children's unique needs (McCann et al, 2012;Sawyer et al, 2010) may continue through to young adulthood (Smith et al, 2010). In fact, parents of children with ASD report that reduced working hours and the associated loss in income are the single largest contributing factor to the cost of having a child with ASD (Horlin, Falkmer, Parsons, Albrecht, & Falkmer, 2014).…”

Section: Maternal Quality Of Lifementioning

confidence: 99%

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Quality of Life, Coping Styles, Stress Levels, and Time Use in Mothers of Children with Autism Spectrum Disorders: Comparing Single Versus Coupled Households

McAuliffe

Cordier

Vaz

et al. 2017

J Autism Dev Disord

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This study aimed to examine the influence of differences in household status on the parental stress, coping, time use and quality of life (QoL) among mothers of children with autism spectrum disorders. Forty-three single and 164 coupled mothers completed the survey. Data were analysed using multivariate logistic regression. We found that single mothers were 1.05 times more likely to report lower levels of environmental QoL. Whilst they were 1.73 times more likely to use acceptance coping style, this association did not persist after adjusting for total number of children, household income and employment status. There was no difference in time use and stress between these mothers. Possible environmental issues for single mothers and implications for future research are discussed.

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“…It therefore falls to health professionals to recognise the implications of any additional demands made (McCann, Bull, and Winzenberg 2012) and ensure adequate support and resources are available. Moreover, whilst it is important to recognise the value of parents' knowledge, there is still a need for information and education to support them to fulfil this role (Wolfendale 2002).…”

Section: Evolution Of Practicementioning

confidence: 99%

Paediatric Health Professionals as Parent Educators: A Developing Role?

Reeder

Morris

2016

IJPBLHS

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The purpose of this study was to develop an improved understanding of the perception of health professionals regarding the provision of information to parents of children with long-term disabilities. The aim was to generate new perspectives, inform debate, and to identify practical suggestions for health professionals. This study adopted a qualitative approach, guided by a phenomenological methodology. Seven health professionals, working within an Integrated Children and Young Person's Therapy Service of a single UK National Health Service (NHS) foundation trust, participated in semi-structured, in-depth interviews. The resultant data were analysed using a rigorous, systematic process of thematic content analysis. Two main themes were identified and discussed. Theme 1 was 'parent readiness for information'; with subthemes 1A 'assessing parent readiness' and 1B 'developing parent readiness'. Theme 2 was 'role as information manager'. (It is acknowledged that a further theme 'relationship with parents' was identified; which will be presented and discussed in another article). The following conclusions were drawn. The health professional's role, as a provider of information to parents of children with disabilities, is evolving and may now be more helpfully described as that of a parent educator. It is suggested that this may involve a shift in focus from content/timing of information provision to the development of parents as learners. It is also suggested that it would be useful for health professionals to explore opportunities for practice-based initiatives to support the development of the skills required for this role.

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The daily patterns of time use for parents of children with complex needs

Cited by 183 publications

References 54 publications

Assessing Functional Impairment in Siblings Living With Children With Disability

Assessing Functional Impairment in Siblings Living With Children With Disability

Quality of Life, Coping Styles, Stress Levels, and Time Use in Mothers of Children with Autism Spectrum Disorders: Comparing Single Versus Coupled Households

Paediatric Health Professionals as Parent Educators: A Developing Role?

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