Healthcare Providers’ Experiences with Autism: A Scoping Review

Morris, Rae; Greenblatt, Andrea; Saini, Michael

doi:10.1007/s10803-019-03912-6

Cited by 85 publications

(79 citation statements)

References 66 publications

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“…Other studies highlight the need for GPs to have access to autismspecialist services for advice and input and, where required, on which to refer. 44 However, regardless of whether annual health checks are rolled out, GPs will be the first port of call for any health concern given their position in primary care. This study's findings provide important evidence for GPs on differences in the presentation and communication of mental health difficulties in autistic young adults without LD (and their families), and how those may relate to help-seeking behaviours and engagement with healthcare services.…”

Section: Implications For Research and Practicementioning

confidence: 99%

Improving mental health in autistic young adults: a qualitative study exploring help-seeking barriers in UK primary care

2020

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BackgroundAutistic people are at increased risk of developing mental health problems. To reduce the negative impact of living with autism in a non-autistic world, efforts to improve take-up and access to care, and support in early years, which will typically start with a GP appointment, must be grounded in the accounts of autistic young adults.AimTo explore how autistic young adults understand and manage mental health problems; and to consider help seeking as a focus.Design and settingA cross-sectional, qualitative study. Autistic participants were purposively selected to represent a range of mental health conditions including anxiety and depression. A subsample were recruited from a population cohort screened for autism in childhood. The study concerns access to primary care.MethodNineteen autistic young adults without learning disabilities, aged 23 or 24 years, were recruited. In-depth, semi-structured interviews explored how they understood and managed mental health problems. Data were analysed thematically.ResultsYoung adults preferred self-management strategies. Multiple factors contributed to a focus on self-management, including: beliefs about the aetiology of mental health difficulties and increased vulnerability with the context of a diagnosis of autism, knowledge of self-management, and a view that formal support was unavailable or inadequate. Families had limited awareness of professional support.ConclusionYoung autistic adults without learning disabilities, and their families, may hold erroneous beliefs about autism and mental health. This may affect help seeking and contribute to an exacerbation of symptoms. GPs need to be alert to the fact that autistic young adults in their care may be experiencing mental health difficulties but may not recognise them as such.

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Section: Implications For Research and Practicementioning

confidence: 99%

Improving mental health in autistic young adults: a qualitative study exploring help-seeking barriers in UK primary care

2020

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“…The findings of the scoping review showed that parents expressed some unmet needs, barriers in navigating the system, and challenges in working with professionals. It seems that these are systemic difficulties because a recent scoping review (Morris et al 2019) about the experiences of health care providers working with individuals with autism revealed that health care professionals face complexities, which are beyond their professional role and also require access to additional services and resources. In addition, health care providers reported that they experience challenges in communication with autistic people and collaboration with parents and other service providers and that they have limited autism specific knowledge and resources as well as limited autism specific training and prior experience of working with autistic people.…”

Section: Knowledge About the Needs Of Cld Families Within The Servicementioning

confidence: 99%

“…In addition, health care providers reported that they experience challenges in communication with autistic people and collaboration with parents and other service providers and that they have limited autism specific knowledge and resources as well as limited autism specific training and prior experience of working with autistic people. These providers also expressed the need for information and training in autism as well as the need for care coordination services and systemic changes so that their working environment becomes autism friendly (Morris et al 2019). It appears that the need for continuous professional development is paramount as the racial and ethnic disparities in the recognition of autism might be related to the heterogeneity of the presentation of autism and professionals need to be aware of the profile of the children with autism so they can interpret children's behaviour accurately (Mandell et al 2009) including the subtle cultural differences in the expression of autism in CLD groups.…”

Section: Knowledge About the Needs Of Cld Families Within The Servicementioning

confidence: 99%

Perceptions, Experiences, and Needs of Parents of Culturally and Linguistically Diverse Children with Autism: a Scoping Review

Papoudi

Jørgensen

Guldberg

et al. 2020

Rev J Autism Dev Disord

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A scoping review of studies carried out in the UK and the USA was conducted to explore the perceptions, experiences, and needs of culturally and linguistically diverse families of children with autism. Overall, 32 articles met the inclusion criteria, 25 studies were conducted in the USA and 7 studies in the UK. Four themes emerged including (a) knowledge and beliefs about autism and their impact on the family; (b) autism and family life; (c) family experiences of accessing services and support, and parents' needs; and (d) multilanguage. Findings highlighted that family perceptions of autism are influenced by an often-reported lack of knowledge; experiences include social stigma as well as difficulties in having access to services. Needs indicate the development of culturally sensitive interventions, information in multiple languages, and parent-professional collaboration. Implications for research, policy, and practice are included.

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“…Concerning discovery and diagnosis, the family has difficulty understanding the atypical behaviors presented by the children, early recognition of illness, accessing health care services, accepting the diagnosis. Also, it is being permeated by the constant search of doctors for other opinions and by feelings such as frustration and mourning, due to the loss of the ideal child and rearrangement of the family as a whole (7)(8) .…”

Section: Introductionmentioning

confidence: 99%

“…Care is still based on a child-centered model and disability and condition, mainly by specialist health professionals. The care provided to families is focused, especially, on guidance on the disorder and the new demands of child care, not receiving assistance in their needs as a family unit (5)(6)(7)(8)(9)(10)(11)(12) .…”

Section: Introductionmentioning

confidence: 99%

Family experiences in discovering Autism Spectrum Disorder: implications for family nursing

et al. 2020

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Objectives: to describe the family’s experience in the process of discovering the diagnosis and initiation of treatment of children with Autism Spectrum Disorder. Methods: this qualitative and descriptive study interviewed nine relatives of eight children on autism spectrum. They were inserted in health services, public education, and Association of Parents and Friends of The Exceptional of cities in the countryside of the Center-West. Data were collected through open interviews from July to September 2017. Data was submitted to thematic analysis. Results: at the beginning, the family was difficult to perceive the first atypical signs presented by the children. Families experience situations of vulnerability, since support networks are insufficient. The school played a significant role in recognizing unexpected behaviors. Final Considerations: support, offered by nurses, health professionals, school and social support devices, is important to family and children in this trajectory.

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Healthcare Providers’ Experiences with Autism: A Scoping Review

Cited by 85 publications

References 66 publications

Improving mental health in autistic young adults: a qualitative study exploring help-seeking barriers in UK primary care

Improving mental health in autistic young adults: a qualitative study exploring help-seeking barriers in UK primary care

Perceptions, Experiences, and Needs of Parents of Culturally and Linguistically Diverse Children with Autism: a Scoping Review

Family experiences in discovering Autism Spectrum Disorder: implications for family nursing

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