Withdrawing Antipsychotics for Challenging Behaviours in Adults with Intellectual Disabilities: Experiences and Views of Experts by Experience

Abstract

People with intellectual disabilities (PwID) are frequently prescribed long-term antipsychotics for behaviours that challenge (BtC) despite the lack of proven effectiveness and the increased risks for side effects of these medications in this population. National and international good clinical practice guidelines recommend deprescribing antipsychotics for BtC, which is often not successful due to environmental and other factors. The involvement of all stakeholders, including PwID, is crucial for deprescribing. However, studies showed that PwID and/or their families are often not involved in decision-making regarding the (de)prescribing of antipsychotics despite their desire to get involved. Moreover, studies on the views of PwID regarding their experiences of withdrawing from antipsychotics are lacking. The aim of this study was to gain insight into the views of PwID by investigating their experiences of discontinuation of long-term prescribed antipsychotics for BtC. A qualitative study was set up. Seven experts by experience with mild intellectual disabilities were interviewed. After six interviews, data saturation was achieved. Interviews were transcribed verbatim. Using phenomenological analysis, themes on lived experiences were extracted. Each consecutive interview was analysed. The four main themes extracted from the interviews were the quality of treatment, knowledge and information about psychotropics and the process of withdrawal, support from the participants’ environment and the coping style of the interviewees themselves.

The UK psychiatrists' experience of rationalising antipsychotics in adults with intellectual disabilities: A qualitative data analysis of free‐text questionnaire responses

“…Some participants highlighted the issue of STOMP training for support staff and families. Caregivers play a pivotal role in influencing the prescribing process (Christian et al, 1999;de Kuijper et al, 2022;Deb, Limbu, et al, 2022;Donley et al, 2012;Kleijwegt et al, 2019;Lalor & Poulson, 2013), which some participants in our study have highlighted. To address the issue of caregiver training, we have recently developed an online training resource backed up by face-toface workshops (SPECTROM; https://spectrom.wixsite.com/project) to help rationalise antipsychotics and other psychotropic medications (Deb et al, 2020).…”

Stakeholder experiences of deprescribing psychotropic medicines for challenging behaviour in people with intellectual disabilities

“…Due to the low number of studies included in this review, the impact of our findings is limited, and therefore it is important to exercise caution in interpreting these findings. The quality appraisal process identified potential bias associated with sampling and recruitment methods across studies, such as direct approaches (de Kuijper et al, 2022b;Deb et al, 2023Deb et al, , 2020, convenience sampling (Kleijwegt et al, 2019) and recruitment by physicians (de Kuijper et al, 2022a).…”

“…In addition to the small number of included studies and despite there being no restriction on country, three out of the five studies were carried out in the Netherlands (de Kuijper et al, 2022a(de Kuijper et al, , 2022bKleijwegt et al, 2019), and two studies were carried out in the UK (Wrein, 2019;Deb et al, 2020). This may limit the external validity and transferability of the overall systematic review when considering settings in other countries where there may be differences in health policy, practices and access to health care.…”

Withdrawing Antipsychotics for Challenging Behaviours in Adults with Intellectual Disabilities: Experiences and Views of Prescribers

“…Previous studies of interviews of adults with ID have just touched on the issue of psychotropic medication use [ 50 , 51 ]. To address this knowledge gap, in another study, we also gathered information on the experience of adults with a mild ID who have gone through the experience of psychotropic withdrawal [ 52 ]. An important finding was their statement that their own coping style, next to a supportive environment and a good relationship with their doctor, was a key factor for successful discontinuation.…”