Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID. A comparison

Martorell, Almudena; Gutiérrez-Recacha, Pedro; Irazábal, Marcia; Marsà, Ferrán; García, M.a Dolores Gutiérrez

doi:10.1016/j.ridd.2011.05.021

Cited by 25 publications

(13 citation statements)

References 29 publications

(24 reference statements)

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“…Our findings are consistent with those of Martorell et al (2011), who showed that the interaction of ID and co-occurring mental health problems resulted in a higher degree of burden on families than when just one of these conditions was present. Our findings are also consistent with a previous study that documented substantially higher overall health care costs for children with diagnoses of both ASD and ID than for children with diagnoses of ASD only or ID only (Peacock, Amendah, Ouyang, & Grosse, 2012).…”

Section: Discussionsupporting

confidence: 92%

“…To fully address the consequences of a condition, it is important to know the functional difficulties that exist, beyond receiving a clinical diagnosis (Lollar, Hartzell, & Evans, 2012). Parents caring for persons with ID consider the psychiatric or behavioral problems of their child to be an extra burden (Irazabal et al, 2012; Maes, Broekman, Dosen, & Nauts, 2003; Martorell, Gutierrez-Recacha, Irazabal, Marsa, & Garcia, 2011). The numbers of co-occurring conditions and problem behaviors such as irritability have been shown to be major contributors of family impact of FXS (Bailey et al, 2012; Ouyang et al, 2010).…”

Section: Introductionmentioning

confidence: 99%

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A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability

Ouyang

Grosse

Riley

et al. 2014

Research in Developmental Disabilities

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This study compares the family financial and employment impacts of having a child with fragile X syndrome (FXS), autism spectrum disorder (ASD), or intellectual disabilities (ID). Data from a 2011 national survey of families of children with FXS were matched with data from the National Survey of Children with Special Health Care Needs 2009–2010 to form four analytic groups: children with FXS (n = 189), children with special health care needs with ASD only (n = 185), ID only (n = 177), or both ASD and ID (n = 178). Comparable percentages of parents of children with FXS (60%) and parents of children with both ASD and ID (52%) reported that their families experienced a financial burden as a result of the condition, both of which were higher than the percentages of parents of children with ASD only (39%) or ID only (29%). Comparable percentages of parents of children with FXS (40%) and parents of children with both ASD and ID (46%) reported quitting employment because of the condition, both of which were higher than the percentages of parents of children with ID only (25%) or ASD only (25%). In multivariate analyses controlling for cooccurring conditions and functional difficulties and stratified by age, adjusted odds ratios for the FXS group aged 12–17 years were significantly elevated for financial burden (2.73, 95% CI 1.29–5.77), quitting employment (2.58, 95% CI 1.18–5.65) and reduced hours of work (4.34, 95% CI 2.08–9.06) relative to children with ASD only. Among children aged 5–11 years, the adjusted odds ratios for the FXS group were elevated but statistically insignificant for financial burden (1.63, 95% CI 0.85–3.14) and reducing hours of work (1.34, 95% CI 0.68–2.63) relative to children with ASD only. Regardless of condition, cooccurring anxiety or seizures, limits in thinking, reasoning, or learning ability, and more irritability were significantly associated with more caregiver financial and employment impacts. Proper management of anxiety or seizures and functional difficulties of children with FXS or other developmental disabilities may be important in alleviating adverse family caregiver impacts.

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Section: Discussionsupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability

Ouyang

Grosse

Riley

et al. 2014

Research in Developmental Disabilities

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“…Our group recently evaluated family burden in three groups of support service users (ID, ID-MD and schizophrenia), demonstrating the highest level of burden in ID-MD users (Martorell, Gutié rrez-Recacha, Irazá bal, Marsà , & García, 2011).…”

Section: Q3mentioning

confidence: 99%

Family burden related to clinical and functional variables of people with intellectual disability with and without a mental disorder

Irazábal

Marsà

García

et al. 2012

Research in Developmental Disabilities

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“…Adolescent issues faced in the typically developing population – puberty, emerging sexuality, risk‐taking behaviours, developing identity and vocation – are also experienced by youth with ID, and the burden on their families is further compounded if there is a co‐existing MH disorder . During this same timeframe, there are also several significant transitions from familiar paediatric services to adult services, which have often not had training in ID.…”

mentioning

confidence: 99%

“…5 Adolescent issues faced in the typically developing populationpuberty, emerging sexuality, risk-taking behaviours, developing identity and vocationare also experienced by youth with ID, and the burden on their families is further compounded if there is a co-existing MH disorder. 6 During this same timeframe, there are also several significant transitions from familiar paediatric services to adult services, which have often not had training in ID. Youth with ID and their families and/or carers often need input from several agencies to meet their complex physical, MH and social needs; however, achieving the collaboration necessary to ensure smooth transition from school to adulthood increases in complexity.…”

mentioning

confidence: 99%

Pass the parcel: Service provider views on bridging gaps for youth with dual diagnosis of intellectual disability and mental health disorders in regional areas

Son¹,

Debono

Leitner³

et al. 2018

J Paediatrics Child Health

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Aim Youth with both intellectual disability (ID) and mental health (MH) disorders (dual diagnosis) have complex physical and MH needs that can make providing integrated care for this complex group challenging. We conducted a mixed methods needs assessment to identify gaps and challenges in care delivery, identify bridges for these and identify what works well in existing services. Methods Our research team recruited service providers (n = 126) caring for youth aged 14–24 years with a dual diagnosis in the Illawarra Shoalhaven region of New South Wales, Australia, to participate in focus group interviews. Data were transcribed and analysed thematically. Results We identified six themes related to caring for youth with dual diagnosis in regional areas: access to services and information about services, communication between service providers and with clients and carers, the divide between MH and ID, early intervention and health promotion, capacity building of service providers and capacity building of clients and carers. Across these themes, service providers highlighted the transition from child to adult services as a particularly challenging time for clients, families and carers. Conclusions Our data suggest several approaches to break down silos and to facilitate collaboration between current services for youth with a dual diagnosis, including increasing specialised ID/MH services and building the capacity of current disability and MH service providers. Our results provide important information to provide quality and integrated care for youth with complex health needs.

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Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID. A comparison

Cited by 25 publications

References 29 publications

A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability

A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability

Family burden related to clinical and functional variables of people with intellectual disability with and without a mental disorder

Pass the parcel: Service provider views on bridging gaps for youth with dual diagnosis of intellectual disability and mental health disorders in regional areas

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