Service satisfaction and helpfulness ratings, mental health literacy and help seeking barriers of carers of individuals with dual disabilities

Man, Joyce; Kangas, Maria

doi:10.1111/jar.12520

Cited by 10 publications

(9 citation statements)

References 24 publications

(54 reference statements)

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“…A total of 1755 results were screened, resulting in nine studies being included (11,22,23,24,25,26,27,28,29); see the PRISMA flowchart in supplementary figure 1, including reasons for exclusions.…”

Section: Resultsmentioning

confidence: 99%

“…Children's age ranged from 2-67 years, with one study not specifying age range. Of the nine included studies, five were qualitative (11,22,23,24,27), three quantitative (25,26,28) and one mixed method (29). All included studies focused on the experiences or perspectives of parents utilising general practice on behalf of their child with intellectual disability with none of the studies reporting on general practice use for parents' own health concerns.…”

Section: Resultsmentioning

confidence: 99%

“…Seven of the studies were rated high quality (11,22,23,24,27,26,28), and two were rated low quality as three out of five of the study design criteria was not met according to the MMAT guide (25 and 29). Quality assessment ratings for each included study can be found in Supplementary Table 3.…”

Section: Quality Assessmentmentioning

confidence: 99%

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General practice experiences for parents of children with intellectual disability: a systematic review

et al. 2023

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BackgroundParents of children diagnosed with intellectual disability are at increased risk of mentaland physical health difficulties compared to other parents. They are likely to regularly seek medical treatment for their health concerns from general practice as well as on behalf of their child with intellectual disability, yet there is limited evaluation of the role general practice plays for this patient group.AimTo explore parents’ experiences of general practice support when caring for a child with intellectual disability.Design and settingSystematic review of studies reporting experiences of general practice as described by parents who care for children with intellectual disabilityMethodsDatabases were searched using a pre-defined search strategy. Studies were included based on detailed inclusion criteria, title, abstract and full-text screening. Quality assessment was conducted using the Mixed Methods Appraisal Tool (MMAT). A narrative synthesis was conducted.ResultsA total of nine studies were identified. There was a clear absence of data on parents own health experience and consultation in general practice. Findings relate to navigating general practice on behalf of their child’s health including accessibility of general practice and positive and negative experiences of general practitioners (GP).ConclusionFindings from this review highlight priority areas for research and the importance of continuity of care for this patient group. This review also considers implications for clinical services.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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General practice experiences for parents of children with intellectual disability: a systematic review

et al. 2023

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“…Studies of health care quality in individuals with ID and no ASD have indicated that the quality of care is of concern. Caregivers of youth with ID often report dissatisfaction with the health care their children and adolescents have received (Iacono et al, 2014; Man & Kangas, 2019; Weiss & Lunsky, 2010). Man and Kangas (2019) found that half of surveyed caregivers rated health services as unsatisfactory.…”

mentioning

confidence: 99%

“…Caregivers of youth with ID often report dissatisfaction with the health care their children and adolescents have received (Iacono et al, 2014; Man & Kangas, 2019; Weiss & Lunsky, 2010). Man and Kangas (2019) found that half of surveyed caregivers rated health services as unsatisfactory. Iacono and colleagues (2014) determined that caregivers of individuals with ID had significant concerns about doctors’ and nurses’ lack of knowledge of ID and the negative attitudes by hospital staff toward people with ID.…”

mentioning

confidence: 99%

Unmet health care needs and health care quality in youth with autism spectrum disorder with and without intellectual disability

Menezes

Robinson

Harkins

et al. 2021

Autism

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Research indicates that youth with autism spectrum disorder often experience unmet health care needs and receive poorer quality of care. Intellectual disability commonly co-occurs with autism spectrum disorder; however, the nature of unmet health care needs and health care quality in youth with autism spectrum disorder and intellectual disability have not been investigated. As such, this study sought to examine associations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in youth with autism spectrum disorder. Data from this study were acquired from the 2016–2018 National Survey of Children’s Health, a nationally distributed caregiver-report questionnaire. Results found that the frequency of unmet mental health care need was significantly higher among children with autism spectrum disorder with co-occurring intellectual disability than those without intellectual disability. Using a structural equation modeling approach, it was found that the total effect of co-occurring intellectual disability on composite health care quality was significant. Investigation of indirect effects indicated that unmet mental health care need mediated the relationship between co-occurring intellectual disability and health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs, and that their unmet mental health care needs may negatively impact their health care quality. Lay abstract The increase in the prevalence of autism spectrum disorder has placed greater demands on the health care system. Children and adolescents with autism spectrum disorder often experience challenges accessing high-quality physical and mental health care due to characteristic social-communication deficits and behavioral difficulties, as well as high rates of complex medical and psychiatric comorbidities. Intellectual disability commonly co-occurs with autism spectrum disorder and individuals affected by this co-occurrence may have additional impairments that compound challenges accessing health care. This study investigated the relations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in a large, nationally distributed sample of youth with autism spectrum disorder using structural equation modeling techniques. Co-occurring intellectual disability was significantly associated with unmet mental health care needs in children with autism. In addition, unmet mental health care needs mediated the relationship between co-occurring intellectual disability and health care quality; youth with autism spectrum disorder and co-occurring intellectual disability who had a past-year unmet mental health need had significantly poorer caregiver-reported health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs and receive poorer quality of care than the broader autism spectrum disorder population.

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Carer experiences of services for adults with intellectual disabilities and Co-morbid mental ill health or challenging behaviour

Man

Kangas

2019

Advances in Mental Health

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Service satisfaction and helpfulness ratings, mental health literacy and help seeking barriers of carers of individuals with dual disabilities

Abstract: Parents are capable of recognizing the need to seek professional help for their offspring. Implications for service coordination, provision and carer involvement are discussed.

Cited by 10 publications

References 24 publications

General practice experiences for parents of children with intellectual disability: a systematic review

General practice experiences for parents of children with intellectual disability: a systematic review

Unmet health care needs and health care quality in youth with autism spectrum disorder with and without intellectual disability

Carer experiences of services for adults with intellectual disabilities and Co-morbid mental ill health or challenging behaviour

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