Short-term PsychoEducation for Carers To Reduce Over Medication of people with intellectual disabilities (SPECTROM): study protocol

Abstract

IntroductionPsychotropic medications that are primarily licenced for the treatment of psychiatric disorders are used widely (32%–85%) among people with intellectual disabilities (ID) often for the management of problem (challenging) behaviour in the absence of a psychiatric disorder. Care staff play a pivotal role in the prescribing process. Currently, no staff training programme exists to address the issue of overprescribing of psychotropic medication in people with ID, thus highlighting an urgent need for developing a psychoeducational programme (PEP) specifically designed to address this issue. We propose to develop a PEP for care staff using the methodology described in the UK Medical Research Council guide for complex interventions.Methods and analysisThe development of the PEP will involve (1) gathering information on available relevant training programmes, (2) running four focus groups with care staff and other professionals to establish the content and format of the PEP, and (3) organising a co-design event involving all relevant stakeholders to discuss the format of the PEP. A core project team will develop the PEP under guidance from the PEP Development Group which will consist of 10–12 relevant stakeholder representatives. Feedback from selected stakeholders on a draft PEP will allow us to refine the PEP before implementation. The PEP will have web-based modules supplemented by face to face training sessions. When the final draft is ready, we will field test the PEP on six to eight care staff from community care homes for people with ID. After completing the field test, we will run a focus group involving participants in the PEP to get feedback on the PEP.Ethics and disseminationEthics approval for this study was waived by the UK Health Regulatory Authority as the study does not collect any patient related information and only include care staff outside the UK NHS. This will be the first ever such universally freely available PEP supported by training manual and slides.

UK psychiatrists’ experience of withdrawal of antipsychotics prescribed for challenging behaviours in adults with intellectual disabilities and/or autism

“…This issue is addressed in a current project which is developing an online training programme for support staff and family carers (). 33 A family carers’ association, the Challenging Behaviour Foundation, has also developed online material for family carers ().…”

Comprehensive Assessment of Triggers for Behaviours of Concern Scale (CATS): Initial Development

“…Any disagreements on item categorisation were discussed and a final consensus was reached. The final draft of comprehensive checklist was then sent for feedback to 53 stakeholders involved in the SPECTROM project [19]. The stakeholders consisted of adults with ID and their families, researchers, direct support staff, and community learning disability team members including psychiatrists, speech and language therapists, a learning disability nurse, general practitioners and pharmacists, and representatives of service provider organisations.…”

“…All participants involved in the focus group interviews (n = 5) to evaluate SPEC-TROM [19] training found CATS, as a resource, useful and relevant to the trainees. One participant found it will be useful for agency workers who might not know the person with ID well enough to identify causes of challenging behaviour.…”

“…All participants involved in the focus group (n = 5) to evaluate SPECTROM [19] training found CATS, as a resource, useful and relevant to the trainees.…”

“…Therefore, we have developed the comprehensive assessment of triggers for behaviours of concern scale (CATS) for caregivers to use to detect triggers for challenging behaviour using a combined 'bottom up' (interview with caregivers) and 'top-down' (reviews of items in the existing scales) approach. This was done in the context of a larger project that developed a short-term psycho-education for carers to reduce over-medication of people with intellectual disabilities (SPECTROM) https://spectrom.wixsite.com/project (accessed on 12 September 2021) [19]. In this paper, we present the method used to develop CATS and its content, and compared its characteristics with other existing tools.…”