Literature DB >> 33737429

The importance and availability of adjustments to improve access for autistic adults who need mental and physical healthcare: findings from UK surveys.

Samuel Brice1, Jacqui Rodgers1, Barry Ingham1,2, David Mason1, Colin Wilson1, Mark Freeston3, Ann Le Couteur1, Jeremy R Parr4,2.   

Abstract

OBJECTIVES: To investigate autistic people's views on the importance and availability of adjustments to mental and physical healthcare provision. To explore whether specific categories of adjustments can be identified and to identify any differences in their importance and availability between mental and physical healthcare.
DESIGN: Data from two studies, both employing a cross-sectional survey design.
SETTING: UK-based autistic adults registered with the Adult Autism Spectrum Cohort-UK were contacted by post or online. In both studies, recruitment was staged over a 12-month period. Non-responders were sent a single reminder letter 2 weeks after initial contact. PARTICIPANTS: 537 autistic adults completed a survey about mental health services (51% response rate), 407 completed the physical health survey (49% response rate). Within these samples, 221 participants completed both surveys. PRIMARY OUTCOME MEASURES: Each study developed a bespoke survey to explore participants' views on mental and physical health services, respectively. Both included an identical list of adjustments that participants rated based on importance and availability.
RESULTS: Three factors of important adjustments were identified: sensory environment, clinical and service context, and clinician knowledge and communication. Adjustments across healthcare settings were widely rated as being important yet rarely available. One significant difference between the importance of adjustments available through mental and physical health services was identified. Participants reported that having access to a clinician who is willing to adapt their approach to suit the person's preferences was significantly more important for participants attending mental health settings (p=0.001).
CONCLUSIONS: Autistic people reported the limited availability of important adjustments in current healthcare provision. To address unmet need and tackle the health inequalities faced by autistic people attending physical and mental healthcare settings, healthcare providers should offer adjustments relating to the three identified factors. Future research should focus on identifying and addressing service provider barriers to implementation. © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.

Entities:  

Keywords:  mental health; organisational development; quality in health care

Mesh:

Year:  2021        PMID: 33737429      PMCID: PMC7978247          DOI: 10.1136/bmjopen-2020-043336

Source DB:  PubMed          Journal:  BMJ Open        ISSN: 2044-6055            Impact factor:   2.692


  16 in total

1.  Cross-sectional and longitudinal predictors of quality of life in autistic individuals from adolescence to adulthood: The role of mental health and sleep quality.

Authors:  Lauren P Lawson; Amanda L Richdale; Alexandra Haschek; Rebecca L Flower; Josh Vartuli; Samuel Rc Arnold; Julian N Trollor
Journal:  Autism       Date:  2020-03-13

2.  "Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum.

Authors:  Christina Nicolaidis; Dora M Raymaker; Elesia Ashkenazy; Katherine E McDonald; Sebastian Dern; Amelia Ev Baggs; Steven K Kapp; Michael Weiner; W Cody Boisclair
Journal:  Autism       Date:  2015-04-16

3.  Prevalence of Depressive Disorders in Individuals with Autism Spectrum Disorder: a Meta-Analysis.

Authors:  Chloe C Hudson; Layla Hall; Kate L Harkness
Journal:  J Abnorm Child Psychol       Date:  2019-01

4.  Prevalence and correlates of autism in a state psychiatric hospital.

Authors:  David S Mandell; Lindsay J Lawer; Kira Branch; Edward S Brodkin; Kristin Healey; Robert Witalec; Donielle N Johnson; Raquel E Gur
Journal:  Autism       Date:  2011-08-16

5.  The health status of adults on the autism spectrum.

Authors:  Lisa A Croen; Ousseny Zerbo; Yinge Qian; Maria L Massolo; Steve Rich; Stephen Sidney; Clarissa Kripke
Journal:  Autism       Date:  2015-04-24

6.  Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership.

Authors:  Christina Nicolaidis; Dora Raymaker; Katherine McDonald; Sebastian Dern; W Cody Boisclair; Elesia Ashkenazy; Amanda Baggs
Journal:  J Gen Intern Med       Date:  2012-11-21       Impact factor: 5.128

7.  'Something needs to change': Mental health experiences of young autistic adults in England.

Authors:  Laura Crane; Fern Adams; Georgia Harper; Jack Welch; Elizabeth Pellicano
Journal:  Autism       Date:  2018-02-07

8.  Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults.

Authors:  Brittany N Hand; Amber M Angell; Lauren Harris; Laura Arnstein Carpenter
Journal:  Autism       Date:  2019-11-27

9.  Prevalence of long-term health conditions in adults with autism: observational study of a whole country population.

Authors:  Ewelina Rydzewska; Laura Anne Hughes-McCormack; Christopher Gillberg; Angela Henderson; Cecilia MacIntyre; Julie Rintoul; Sally-Ann Cooper
Journal:  BMJ Open       Date:  2018-09-01       Impact factor: 2.692

10.  Treating anxiety in autistic adults: study protocol for the Personalised Anxiety Treatment-Autism (PAT-A©) pilot randomised controlled feasibility trial.

Authors:  Jeremy R Parr; Samuel Brice; Patrick Welsh; Barry Ingham; Ann Le Couteur; Gemma Evans; Alexander Monaco; Mark Freeston; Jacqui Rodgers
Journal:  Trials       Date:  2020-03-14       Impact factor: 2.279

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  3 in total

Review 1.  Barriers and Facilitators to Healthcare Access in Adults with Intellectual and Developmental Disorders and Communication Difficulties: an Integrative Review.

Authors:  Kathryn Shady; Shannon Phillips; Susan Newman
Journal:  Rev J Autism Dev Disord       Date:  2022-05-30

2.  Improving Cognitive Behaviour Therapy for Autistic Individuals: A Delphi Survey with Practitioners.

Authors:  Debbie Spain; Victoria Milner; David Mason; Hannah Iannelli; Chris Attoe; Ruwani Ampegama; Lorcan Kenny; Aleks Saunders; Francesca Happé; Karina Marshall-Tate
Journal:  J Ration Emot Cogn Behav Ther       Date:  2022-04-08

3.  "We couldn't think in the box if we tried. We can't even find the damn box": A qualitative study of the lived experiences of autistic adults and relatives of autistic adults.

Authors:  Tracy L Finch; Joan Mackintosh; Alex Petrou; Helen McConachie; Ann Le Couteur; Deborah Garland; Jeremy R Parr
Journal:  PLoS One       Date:  2022-03-14       Impact factor: 3.240

  3 in total

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