Meeting the healthcare needs of adults on the autism spectrum

Barber, Christopher

doi:10.12968/bjon.2017.26.7.420

Cited by 16 publications

(16 citation statements)

References 4 publications

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“…The experience of hospital admission can be extremely traumatic for the individual with ASDs and can have a further traumatic effect on their mental health (Maloret and Scott, 2018). Barber (2017) suggested that it is essential for any nurse who works with people on the autism spectrum understand what autism is, and how it is likely to affect the individual, by providing in-service training in understanding ASDs.…”

Section: Self-identified Clinical Training Need: the Environment And Behavioural Managementmentioning

confidence: 99%

Training needs analysis of nurses caring for individuals an intellectual disability and or autism spectrum disorder in a forensic service

Burke

Cocoman

2020

JIDOB

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Purpose Examining the education and training needs of forensic nurses is paramount as services move from the older institutions to new care settings. The purpose of this study was to identify Irish Forensic nurses perceived deficits in their knowledge and skills to assist them to provide effective seamless care for individuals with an intellectual disability within their forensic mental health service, so that appropriate training could be provided. Design/methodology/approach Training needs analysis (TNA) procedures are used as a way of establishing the continuing processional development of staff, as they seek to identify the gaps between the knowledge and skills of an individual and the need for further training. A training needs tool developed by Hicks and Hennessy (2011) was used and completed by nurses working in an Irish forensic mental health service. A total of 140 surveys were circulated and 74 were completed (51 per cent response). Findings The top priority training needs identified were for additional training in research and audit and in the use of technology. Other self-identified training needs included additional training in behavioural management for challenging behaviour, understanding mental health and intellectual disability and dual diagnosis, training in enhancing communication skills and how to work with patients who have an intellectual disability patients specific training on autistic spectrum disorders and a guide and template for advance individual care planning and for caring for the physical health needs and promoting the physical health needs of these patients. Originality/value Despite there being a vast range of training issues identified, the majority of nurses appear to have a clear idea of their training needs to ensure the provision of seamless care for individuals with an intellectual disability within a forensic mental health setting. This TNA has identified the specific needs of nursing staff working at different positions across the interface of intellectual disability and forensic mental health care.

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Section: Self-identified Clinical Training Need: the Environment And Behavioural Managementmentioning

confidence: 99%

Training needs analysis of nurses caring for individuals an intellectual disability and or autism spectrum disorder in a forensic service

Burke

Cocoman

2020

JIDOB

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“…While true for all autistic adults, this is particularly pertinent for those without intellectual disabilities. This group lack a clear healthcare pathway (National Institute for Health and Care Excellence (NICE) 2012) and are at risk of falling ‘between the cracks’ of existing, yet inaccessible, services (Barber 2017: 420, National Autistic Society (NAS) 2009). It is essential that we better understand how to support this group transition to, and thrive in, adulthood (Turcotte et al .…”

Section: Introductionmentioning

confidence: 99%

“…2015, 2019). This is critically important as autistic adults with varying communicative skills, needs and preferences must be involved in the what, how, when and where of potential service provision (Barber 2017), particularly regarding services relating to communication.…”

Section: Introductionmentioning

confidence: 99%

Autistic adults’ views of their communication skills and needs

Cummins

Pellicano

Crane

2020

Intl J Lang & Comm Disor

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Background Autistic people require varying levels of support at different stages of their lives. Yet, the healthcare needs of autistic adults are largely unmet. Speech and language therapy (SLT) is one healthcare service that has an important role in supporting autistic people: both with initial diagnosis, and with the ongoing support needed to navigate different communicative challenges across the lifespan. Despite recommendations for such support, currently there is no clear SLT pathway for autistic adults, and a lack of established approaches to support autistic adults’ speech, language and communication needs. Aims To seek autistic adults’ views on (1) their communication skills and support needs; (2) the type of support SLT could offer; and (3) how such support could be provided. Methods & Procedures A total of 18 autistic adults were interviewed in their preferred mode of communication (e.g., face to face, phone call, text messaging, e‐mail), expressing their views on their communication skills and needs. Interview data were analysed using thematic analysis. Outcomes & Results Autistic adults presented complex views on communication, identifying the benefits of communication, while also emphasizing the significant negative impact that communication difficulties can have on their everyday lives. Identifying a range of internal (e.g., personal feelings) and external (e.g., the communication partner) factors, they highlighted the need for support at both individual levels (for specific life situations) and broader societal levels (to increase awareness and acceptance of communication difficulties). Conclusions & Implications Considering the negative impact that communication difficulties can have for autistic adults, a need for support was emphasized. Despite recognition of this need within current legislation (in the UK) and positive steps toward providing support, more needs to be done. As experts in supporting individuals with communication difficulties, speech and language therapists could play a pivotal role in providing support at an individual level, as well as increasing awareness of communication differences more widely.

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“…As such, there have been many calls for interventions to improve the health and healthcare of autistic adults (Barber, 2017;Hall, Kriz, Duvall, Nguyen-Driver, & Duffield, 2015;Liu, Pearl, Kong, Leslie, & Murray, 2017;Nicolaidis, Kripke, & Raymaker, 2014;. However, this field is still in its infancy, with few evidence-based interventions to improve care (Mason et al, 2019).…”

Section: Instruments To Assess Healthcare Interventionsmentioning

confidence: 99%

Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults

Nicolaidis

Zhen

Lee

et al. 2020

Autism

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There is a growing recognition of the need for interventions to improve the healthcare of autistic adults. However, there is a dearth of validated measures to evaluate such interventions. Our objectives were to use a community-based participatory research approach to create an accessible set of patient- and proxy-reported instruments to measure healthcare outcomes and potential intervention targets in autistic adults and to assess the instruments’ psychometric characteristics, including content validity, construct validity, and internal consistency reliability. We administered a survey to 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (194 participating directly and 50 participating via a proxy reporter). Community partners ensured items were easy to understand and captured the intended construct. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Visit Preparedness Scale, Healthcare Accommodations Scale, and Patient–Provider Communication Scale were each found to have a single factor. The AASPIRE Health and Healthcare Self-Efficacy Scale had two factors: Individual Healthcare Self-Efficacy and Relationship-Dependent Healthcare Self-Efficacy. Both patient- and proxy-reported versions of all scales had good to excellent internal consistency reliability, with alphas ranging from 0.81 to 0.96. The scales were associated with the Barriers to Healthcare Checklist and the Unmet Healthcare Needs Checklist in the hypothesized directions. Lay Abstract Interventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits; (2) how confident they feel in managing their health and healthcare; and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient–provider communication; (5) reduced barriers to care; and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this sample. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults.

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Meeting the healthcare needs of adults on the autism spectrum

Cited by 16 publications

References 4 publications

Training needs analysis of nurses caring for individuals an intellectual disability and or autism spectrum disorder in a forensic service

Training needs analysis of nurses caring for individuals an intellectual disability and or autism spectrum disorder in a forensic service

Autistic adults’ views of their communication skills and needs

Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults

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