A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults.
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SUBMITTER: Mason D
PROVIDER: S-EPMC6647496 | biostudies-literature | 2019 Aug
REPOSITORIES: biostudies-literature
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A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults.
Mason David D Ingham Barry B Urbanowicz Anna A Michael Cos C Birtles Heather H Woodbury-Smith Marc M Brown Toni T James Ian I Scarlett Clare C Nicolaidis Christina C Parr Jeremy R JR
Journal of autism and developmental disorders 20190801 8
Autistic people are more likely to: be diagnosed with a range of physical health conditions (i.e. cardio-vascular disease); experience premature mortality (for most disease categories); and experience barriers to effectively accessing healthcare. This systematic review sought to identify studies that report on barriers and facilitators to physical healthcare access for autistic people. A total of 3111 records were screened and six studies were included: two quantitative, two qualitative, and two ...[more]
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Project description:BackgroundPeople with autism spectrum disorder (ASD) have an increased susceptibility for many chronic health conditions compared with their peers. An increasing number of adolescents are transitioning from pediatric to adult healthcare services. Thus, being able to access appropriate healthcare services that can not only address specific needs of the person but enable them to better manage healthcare conditions and decrease the development of preventable disease is necessary. A systematic review was conducted to identify barriers and enablers of healthcare access for autistic adults.MethodsThe studies included in the review were quantitative and qualitative and were published between 2003 and 2019. The participants for the review are considered to be adults (over 18 years of age) with a primary diagnosis of ASD.ResultsIn total, 1290 studies were initially identified and 13 studies were included based on the inclusion and exclusion criteria outlined in a previous protocol paper. The analysis of these studies identified areas of concern to access appropriate healthcare, such as clinician knowledge, the environment, and life events.ConclusionIdentifying the barriers to healthcare, highlights ways healthcare services can regulate scope of practice, the physical environment, and the process of managing health conditions, thus, autistic adults can strive for optimal health. This review contributes to peer-reviewed evidence for future research and up-to-date information when developing and piloting health interventions for autistic adults.Ethics and disseminationThere are no human participants, data, or tissue being directly studied for the purposes of the review; therefore, ethics approval and consent to participate is not applicable.Registration and statusPROSPERO 2018 CRD42018116093.
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Project description:Lay abstractParents might have problems in getting support services for their autistic child due to certain barriers. However, there might also be things that can ease or facilitate parents' access to support services. In this study, New Zealand parents were asked about their experiences in getting support services for their autistic child. We also looked at differences in reported barriers and facilitators based on several demographic factors with a focus on family level of financial resourcing. A total of 173 parents completed a survey. The results suggested that parents experienced several barriers, particularly related to service pathways. Facilitators were also experienced, predominantly related to providers. Financial resourcing predicted the number of parent-reported barriers. Both lower level of family financial resourcing and having a non-binary child predicted parents' rating of the extent of barriers. Child age and level of speech were predictors for reports of experiencing a higher number of facilitators, with parents of younger children or of non-speaking autistic children reporting a greater number of facilitators. We discuss how these results may be useful to support service delivery and identify areas for future research.
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Project description:This integrative review explores the barriers to and facilitators of healthcare access in adults with intellectual and developmental disorders (IDD) and communication difficulties (CD) using Levesque et al.'s conceptual framework of access to health. IDDs are a group of disorders that occur early in childhood and often involve language dysfunction. CDs are prevalent in adults with IDD. Several themes emerged as barriers to access for adults with IDDs and CDs including health literacy, understanding health information, and screening; fear and negative patient expectations; impaired autonomy; time; accommodation needs; insurance coverage and financial hardship; communication; coordination and continuity of care; and supporter presence and inclusion. Communication between providers, patients, and supporters is a significant barrier for adults with IDD and CD.Supplementary informationThe online version contains supplementary material available at 10.1007/s40489-022-00324-8.
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Project description:ObjectivesPhysical activity involvement among autistic youth and youth with an intellectual disability is significantly lower than the general population. Few studies have included youth with comorbid diagnoses of ASD and intellectual disability. Fewer studies collect information from the youth themselves. This study examined barriers and facilitators to physical activity in autistic youth with mild intellectual disability using semi-structured interviews with youth and through caregiver reports.MethodsFourteen caregivers and their children ages 8 to 16 years old participated. Caregivers completed a questionnaire about their thoughts on their child's physical activity while their children completed the semi-structured interview. A descriptive phenomenological approach was followed.ResultsFour themes were inductively identified: intrapersonal barriers (factors that are within the person which impede physical activity involvement, such as exhibiting challenging behaviors that inhibit engagement), interpersonal barriers (factors external to the person, such as lack of community support), intrapersonal facilitators (factors within the person that enhance physical activity involvement, such as being intrinsically motivated to improve skills), and interpersonal facilitators (external factors such as supports from caregivers).ConclusionsInterviewing youth is important to capture a holistic picture of factors influencing physical activity. Future research may focus on implementing and assessing the efficacy of strategies to address the barriers facing youth diagnosed with ASD and intellectual disability.Supplementary informationThe online version contains supplementary material available at 10.1007/s41252-022-00310-5.
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Project description:IntroductionPrevious research has used proxy variables or a unique construct to quantify healthcare access. However, there is a need for a different model that can handle this multivariable problem. This study seeks to develop a way to measure access to the local healthcare system with higher local resolution.MethodsA new survey was developed based on communitarian claims, following a behavioural model and an ontological framework. The survey was used to identify local barriers to healthcare services and the local preferences for priority settings. The results were analysed using multiattribute utility functions and individual weights were assigned by a panel of experts. National and regional indexes of access to healthcare were developed.ResultsThe survey contained seven modules and 104 questions. It was conducted on 1885 participants at 42 rural and 231 urban locations in three regions of Chile. The total disutility of the identified barriers to healthcare access at the national level was low (0.1448; values ranged between 0 and 1, with 1 representing a higher barrier) and was higher in the northern region (0.1467). The barriers associated with the health-policy component showed the highest disutility value, and specific barriers for each community were identified.ConclusionsThese results have the potential to improve health decision-making in Chile and can be used to assess the impacts of new health policy reforms. Although this model was tested in Chile, it can be adapted for use in any other country.Patient or public contributionParticipants contributed to this study by completing a survey, participating in general talks and receiving brochures with the results obtained from this study.
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Project description:BackgroundLimited information exists on autistic service access and costs in Italy.ObjectivesThis study aims to investigate access to educational, healthcare, social, and related services for autistic individuals in Italy as part of the Autism Spectrum Disorder in the European Union (ASDEU) project.MethodsItalian carers of autistic individuals completed an online survey regarding services and costs in the 6 months before completion.ResultsThree hundred and three carers of autistic people participated in the survey. The majority of those receiving care were children, males, and lived at home with their parents. Autistic adults were often students (17%) or unemployed but willing to work (17%). Employed carers (49%) worked on average 32.23 ± 9.27 hours per week. A significant portion (82%) took work or school absences to care for autistic individuals, averaging 15.56 ± 14.70 days. On average, carers spent 58.84 ± 48.36 hours per week on caregiving duties. Fifty-five of the autistic individuals received some form of support, 5% utilized residential care, and 6% were hospitalized. Thirty-four percent received outpatient hospital care, and 20% underwent some form of autism-related psychopharmacological therapy. School support was primarily provided by support teachers (18.16 ± 7.02 hours/week). Educational psychologists (80.73%), psychomotor therapists/physiotherapists (53.85%), and speech therapists (50.91%) were frequently paid by carers who paid more per hour. Autistic children received support from educators (73.96 hours/week), group therapy (32.36 hours/week), and speech therapists (31.19 hours/week). Psychologists (76.00%) and counseling/individual therapists (89.13%) were often paid by carers. Carers reported high costs for psychiatrists and psychologists, with frequent use of psychiatric services (8 ± 8 times in 6 months).ConclusionsCarers' perspectives on the access and costs of services for autistic individuals in Italy can provide insights into areas for improvement in the delivery of autism services.
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