Factors Affecting the Health of Caregivers of Children Who Have an Intellectual/Developmental Disability

Marquis, Sandra; Hayes, Michael; McGrail, Kimberlyn

doi:10.1111/jppi.12283

Cited by 38 publications

(28 citation statements)

References 164 publications

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“…Inconsistent differences between mothers and fathers of children with developmental disabilities have been identified in relation to their health (Davis & Carter, 2008;Marquis, Hayes, & McGrail, 2019), parental roles (Glidden & Natcher, 2009;Hartley, Barker, Seltzer, Greenberg, & Floyd, 2011), perceptions and attitudes (Simmerman, Blacher, & Baker, 2001), and markers of chronic stress (Foody, James, & Leader, 2015). Mothers have been shown to have poorer mental health (Davis & Carter, 2008;Emerson & Llewellyn, 2008;Foody et al, 2015) and lower levels of well-being (Olsson & Hwang, 2008) than fathers.…”

Section: Background and Significancementioning

confidence: 99%

“…Fathers were also found to have higher stress (Rivard, Terroux, Parent-Boursier, & Mercier, 2014) and more negative indicators of physiological health (increased heart rate variability and higher blood pressure) than mothers (Foody et al, 2015). Few studies have compared health, stress, or parenting among fathers and mothers of children with ID within the AYA developmental period (Marquis et al, 2019;Patton et al, 2018).…”

Section: Background and Significancementioning

confidence: 99%

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Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents

Franklin

Beyer

Brotkin

et al. 2019

Journal of Pediatric Nursing

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This study explored the health care transition (HCT) experiences of parents of adolescents and young adults (AYAs) with intellectual disability (ID), 18-33 years of age, including barriers and facilitators to the AYA's transition to adulthood within and between the medical, educational, community, and vocational systems. Design and methods: A qualitative descriptive design with semi-structured individual interviews with 16 parent participants was used. Purposive sampling of parents was utilized with variation on race/ethnicity and AYA age, stage in transition, and condition. This study was conducted through a major medical center in the southeast United States. Content analysis was utilized. Results: Three overarching themes represented the factors and essence of supporting AYAs with ID transition to adulthood. Inefficient and siloed systems illuminated barriers families are commonly experiencing within and between the medical, educational, community, and vocational systems. 'Left out here floundering' in adulthood, described the continued inadequacy of resources within each of these systems and parent's having to find available resources themselves. Hope despite uncertainty, included the perceived costs and benefits of their AYA's disability and the value of parent peer support in providing key knowledge of resources, strategies, and perspectives. Conclusions: Our findings illuminate the need for improved infrastructure to provide effective HCT and partnerships to help integrate HCT support within other life course systems. Results support the rationale for noncategorical HCT-focused approach. Practice implications: A parent peer coach-facilitated intervention offers promise for bridging the gap between systems and meeting family needs.

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Section: Background and Significancementioning

confidence: 99%

Section: Background and Significancementioning

confidence: 99%

Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents

Franklin

Beyer

Brotkin

et al. 2019

Journal of Pediatric Nursing

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“…There is a considerable amount of literature regarding the effects of having a child with a developmental disability (DD) on the mental health of parents (see Marquis et al for a review1). Studies have found both an increase in mental health problems among these parents2–4 and no difference in mental health between parents of children with a DD and parents of children without a DD 5 6.…”

Section: Introductionmentioning

confidence: 99%

Mental health of parents of children with a developmental disability in British Columbia, Canada

Marquis

McGrail

Hayes

2019

J Epidemiol Community Health

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BackgroundThere is evidence in the literature that parents of children who have a developmental disability experience an increased risk of mental health problems.MethodsThis study used population-level administrative data from the Ministry of Health, British Columbia, Canada, to assess the mental health of parents of children who have a developmental disability compared with the mental health of parents of children who do not have a developmental disability. Population-level and individual explanatory variables available in the data were included in the models.ResultsAt a population level, the study found strong evidence that parents of children who have a developmental disability experience higher odds of depression or other mental health diagnoses compared with parents of children who do not have a developmental disability. Age of the parent at birth of the child, income and location of healthcare services were all associated with outcomes.ConclusionParents of children who have a developmental disability may be in need of programmes and services that support their mental health.

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“…Theoretical frameworks such as family systems theory recognise that fathers are an integral part of the family unit (Seligman and Darling, ). The birth and care of a child with an intellectual disability (ID) is understood to affect every member of the family, including fathers, yet few studies have explored fathers' well‐being (Braunstein et al, ; Macdonald and Hastings, ; Marquis et al, ; Taylor et al . ).…”

Section: Introductionmentioning

confidence: 99%

“…Other more distal environmental factors may also put fathers at risk of poorer outcomes, with one of the most significant being income poverty (Marquis et al, ). The developmental systems model postulates that living in poverty and low levels of parental education are factors associated with ‘non‐optimal' levels of child development (Guralnick, ).…”

Section: Introductionmentioning

confidence: 99%

Psychological well‐being of fathers with and without a child with intellectual disability: a population‐based study.

Langley

Totsika

Hastings

2019

J intellect Disabil Res

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Background Few studies have explored the wellbeing of fathers of children with intellectual disability (ID), despite the significant role that they play in their children's lives. The current study compared fathers of children with and without a child with ID on measures of psychological well-being (life satisfaction, work-family balance and general health) and dimensions of parenting (parenting self-efficacy and parent-child closeness) and then examined whether the presence of a child with ID in the family was a significant predictor of paternal well-being when controlling for a number of father (age, education, employment and residency), child (ID status, gender, behavioural and emotional problems) and family (income poverty and number of children in the household) variables. Methods Data were drawn from the third wave of the Millennium Cohort Study, a UK population-representative and cohort study, where the cohort child was 5 years of age; 256 fathers were identified as having a child with ID, with data available for 10 187 fathers without a child with ID. Fathers were compared on the four well-being and parenting outcomes and then multiple regression models were conducted to explore associations between these outcomes and variables identified as potential correlates of well-being. Results Initial group comparisons showed that there were differences in the well-being of fathers, with fathers of children with ID reporting poorer life satisfaction and general health. However, these differences were small. Regression analyses showed that child behavioural and emotional problems, living in income poverty and paternal employment were more important than disability status in predicting fathers' well-being. Conclusions These works add to the limited amount of research on fathers using population-representative data. The current findings are consistent with rejecting a general simplistic and negative narrative that raising a child with ID puts fathers at risk of poorer outcomes. However, some fathers, such as those with children with behavioural problems and living in poverty, may require greater support. Future longitudinal research that explores the impact of paternal well-being on the long-term outcomes of children with and without ID is warranted. • Psychological well-being of fathers ID, intellectual disability; SD, standard deviation; SE, standard error *P < 0.05.

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Factors Affecting the Health of Caregivers of Children Who Have an Intellectual/Developmental Disability

Cited by 38 publications

References 164 publications

Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents

Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents

Mental health of parents of children with a developmental disability in British Columbia, Canada

Psychological well‐being of fathers with and without a child with intellectual disability: a population‐based study.

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