Co-design and development of a multi-component anxiety management programme for people with an intellectual disability
| DOI | https://doi.org/10.1108/AMHID-04-2022-0017 |
| Published date | 13 January 2023 |
| Date | 13 January 2023 |
| Pages | 26-36 |
| Subject Matter | Health & social care,Learning & intellectual disabilities |
| Author | Daniel James Acton,Robert Waites,Sujeet Jaydeokar,Steven Jones |
Co-design and development of a
multi-component anxiety management
programme for people with an
intellectual disability
Daniel James Acton, Robert Waites, Sujeet Jaydeokar and Steven Jones
Abstract
Purpose –This paper aims to understand the lived experience of people with intellectual disability of
their anxiety and of being co-design partners in developing a multi-component approach to the
managementof anxiety.
Design/methodology/approach –The developmentof an anxiety manual and programme waspart of a
service developmentwhich allowed existing and established psychologicaltherapies to be adapted for
people with intellectual disability. A qualitative approach was used to better understand the views of
people who experienced anxiety on a daily basis. The feedback generated was used to make
modificationsto the manuals and the anxiety managementprogramme.
Findings –The study hasdemonstrated the value of involvingpeople with intellectual disability inthe co-
production of an anxietymanagement programme. Additional findings identifiedthe real-life challenges
and experiencesof the impact anxiety has on people’s lives.
Originality/value –To our knowledge,this is the first study to involve people with intellectualdisability in
developing an anxiety management programme as co-production partners. This paper underlines the
value of understanding and involving people as co-production partners in developing clinical
interventions.
Keywords Collaboration, Psychological therapy, Lived experience, Mental health, Co-production,
Learning disability
Paper type Research paper
It is estimated that there are 1.2 million people with an intellectual disability in England,
with approximately 30–50% suffering frommental health problems. Among this cohort,
anxiety-related difficulties range from 7% to 40% (Reid et al.,2011;Smiley, 2005).
However, this figure is thought to be higher with underreporting and lack of effective
diagnosis impacting on prevalence rates (Cooray and Bakala, 2005). A comparative study
identified higher rates of mental illness in people with intellectual disability than the general
population (Cooper et al., 2007), with (Deb and Bright, 2001) identifying higher rates of
anxiety in older adults. Experience of anxiety-related difficulties is found to have increased
over the life course of a person with an intellectual disability, with exposure to negative life
events being a predictive factor for psychological trauma and resultant anxiety disorders
(Tsakanikos et al., 2007;Wighamet al., 2014).
Anxiety-related conditionsare increasingly prevalentamong people with intellectual disability
(Bowring et al., 2019; Cooper et al., 2015). However, there is evidence to suggest a greater
prevalence of anxiety in people with autism and intellectual disability (Bakken et al., 2010).
(Informationabout the
authorscan be found at the
end of this article.)
Received 13 April 2022
Revised 28 September 2022
Accepted 20 December 2022
Ethical Information: The study
was approved through the
Trust’s research ethics
approval process. The data
was extracted and
anonymised from the standard
electronic patient record
system used in routine clinical
care. According to the Health
Research Authority algorithm
(see http://www.
hra-decisiontools.org.uk/
research/), this study was not
defined as research and
therefore did not require
submission to the Integrated
Research Application System.
The authors thank the
co-production partners for their
valuable feedback in
developing the programme.
Additionally, the authors thank
Clinical Psychologists Drs Ceri
Woodrow and Jonathan
Williams for their support in the
adaptation process.
PAGE 26 jADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES jVOL. 17 NO. 1 2023, pp. 26-36, ©Emerald Publishing Limited, ISSN 2044-1282 DOI 10.1108/AMHID-04-2022-0017
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