In 2015, Public Health England estimated that between 30,000 and 35,000 adults with a learning disability (LD) were prescribed psychotropic medication (either antipsychotics or antidepressants). Thus, it’s probably not surprising that individuals with LD are one of the most medicated populations (Raghavan & Patel, 2010). Psychotropic medication use can be controversial due to motor control and coordination side effects (Jenkins, 2000). This generally prompts the use of medication, such as anticholinergics, to alleviate side effects, even though these drugs come with their own adverse effects (Mahan, Holloway, Bamberg, Hess, Fodstad, & Matson, 2010).
Individuals with LD can have difficulties in understanding and retaining information about a treatment option, which can impact their capacity to make an informed decision (Raghavan & Patel, 2010). Therefore, medical information needs to be accessible for individuals with LD so that they can think through the likely effects, risks, and alternatives (Arscott, Stenfert Kroese, & Dagnan, 2000). Only 50% of individuals with LD can correctly answer questions about the logistics of taking a medication, however, the majority could not answer questions about side effects of alternative treatment (Arscott, Stenfert Kroese, & Dagnan, 2000). For person-centred care, an individual with LD should be involved in the decision-making process for their treatment, superseding a reliance on family members for additional support (Raghavan & Patel, 2010; see also the Mental Health Act 1983, 2008).
Sheehan, Hassiotis, Strydom and Morant (2019) aimed to understand the experiences that individuals with LD and their carers have in relation to the use of psychotropic medication and also the decision-making process leading to this prescription through the first multi-stakeholder study (patient, family carer, paid carer).
The researchers included individuals who were over the age of 18, with a diagnosis of learning disability, who were prescribed psychotropic medication under the care of a psychiatry specialist (N=14), family carers (N=12) and paid carers who have worked with individuals with learning disabilities who were prescribed psychotropic medication (N=12). Purposeful sampling was used to select participants so that a range of age, gender, ethnic group, and severity of learning disability were included.
Semi-structured interviews were used, the broad structure of topics included:
- Experience of using psychotropic medication
- Discussions of medication use that individuals with LD, family carers, and paid carers had with professionals
- How decisions about medications have been made in the past
The collected data were analysed using thematic analysis.
Three themes derived from the data; medication beliefs and experience, carer roles (carer identity/activities), and decisional processes relating to psychotropic medication.
Individuals with LD were found to have limited understanding of medication, they tended to focus on tangible aspects of the medication (taste/colour/size) and routine of taking it, rather than the reasons behind their prescription. Reasons for taking the medication were spoken about in generic terms – ‘keeps me steady’ (p. 4), and most believed there would be negative consequences for not taking the medication (e.g. being out-of-control). Individuals with LD had faith in the medication and prescribing doctor, and perceived the doctor as the expert. Understandably, they felt little autonomy over decisions and so did not question its use.
Family and paid carers tended to be ambivalent about psychotropic medication use and were hesitant in offering their opinions. Carers recalled medication being prescribed during a period of psychological distress and that their opinions changed after seeing beneficial effects. However, some carers thought the medication caused a dulling of cognitive faculty and believed the medication was used in relation to resource constraints for psychosocial intervention.
Carers considered themselves advocates and translators of medical information for the individual with LD. They valued their intimate knowledge of the individual and thought this would be integral to the collaboration with doctors, especially in monitoring their health after taking the medication. If this was not valued by doctors, feelings of a battle to get their voice heard and a subsequent emotional toll was described by carers.
- People with learning disabilities, their family and paid carers must be informed of important facts about treatment options and included in the decision-making process
- There is clearly value in the information family and paid carers can bring to this process from their close relationship with the individual
- This involvement needs to be encouraged, whilst ensuring individuals with LD have information that is accessible to them.
Strengths and limitations
An open-ended semi-structured interview allowed for individuals with LD to explain their feelings about medication decision-making in a deep and valued way. The inclusion of diverse groups of participants added a real-world dimension to this research. The language used in excerpts gives an interesting insight into carers viewpoints, for example, when a paid carer described feeling ‘ill-equipped and dangerously exposed’ as a result of being ill-informed provides an level of emotion you would not achieve from a closed question style interview or questionnaire.
Individuals with LD described consciously ceding to the healthcare professionals or feeling that they have a lack of knowledge and should not be involved. Therefore, it would have been interesting to interview individuals who have previously been on psychotropic medication, rather than just those currently being prescribed it. Researchers would be able to ask about individual’s perceptions pre- and post-medication use, but also how individuals and those caring for them felt about the decision to cease the medication. It would have also been necessary to explore how hesitant family carers about the beneficial effects of medication felt about the tapering off it. Did this result in underlying fears of another crisis situation? Were they relieved?
Though difficult for an open-ended interview, it would be valuable to include individuals who are minimally verbal in such studies. This could be achieved through the use of an Alternative and Augmentative Communication (AAC) system, such as PECS (Picture Exchange Communication System). A power dynamic as described in the paper between the individuals and psychiatrist, may have been present between the interviewers and the interviewees. This power dynamic could lead to social desirability bias for the individual with LD. Social desirability bias could cause an individual to augment their answers to questions in an attempt to present more favourably to the interviewer (Langdon, Clare, & Murphy, 2010). The result of which would be inaccurate results and conclusions drawn from these answers.
Implications for practice
Prescribing medication should be individualised and reviewed regularly, regardless of having a diagnosis of LD. The most appropriate way to communication information about a treatment option should be identified for each individual with an LD; this could be achieved with the support of a speech and language therapist or clinical psychologist. Someone who had a close relationship with the individual with LD, such as a key worker, carer, or family member, could be consulted when trying to find the most appropriate way to communicate medical information. These people would have valuable information, such as if aids would be helpful, if the individual has any sensory difficulties that would need to be accounted for, or processing delays, which could be accommodated by allowing extra time for appointments. The individual should have access to easy-read leaflets or social stories with information on the type of medication, its purpose, dosage (and titrations), as well as the potential benefits and side effects (Deb, Clarke, & Unwin, 2006).
This study has provided new evidence behind the experiences of psychotropic medication from individuals with LD and their carers. There is growing support for reducing the level of medication used in the treatment of behaviours of concern and increasing the use of positive or proactive behavioural approaches (Jenkins, 2000). A national project has been also set up to stop the overuse of these medications, STOMP; stopping over-medication of people with a learning disability, autism, or both. STOMP is a project aimed at reducing inappropriate prescribing of psychotropic medication to manage behaviours of concern. Behaviours of concern should be managed by non-pharmacological methods such as positive behaviour support (PBS) (NICE, 2015). PBS is a framework to support the understanding of the function of a person’s behaviour, and focuses on collaborative working with the individual and those around them (Gerrard, Rhodes, Lee, & Ling, 2019). PBS has been highlighted as a non-pharmacological alternative to psychotropic medication. These aspects of PBS seem to negate the themes of the paper, not being informed, included, or having influence, and therefore should be an alternative given to individuals and their carers when deciding whether to use psychotropic medication.
Statement of interests
Sheehan, R., Hassiotis, A., Strydom, A., & Morant, N. (2019). Experiences of psychotropic medication use and decision-making for adults with intellectual disability: a multistakeholder qualitative study in the UK. BMJ open, 9(11), e032861.
Arscott, K., Stenfert Kroese, B., & Dagnan, D. (2000). A study of the knowledge that people with intellectual disabilities have of their prescribed medication. Journal of Applied Research in Intellectual Disabilities, 13(2), 90-99.
Deb, S., Clarke, D., & Unwin, G. (2006). Using medication to manage behaviour problems among adults with a learning disability. Quick reference guide. Birmingham: University of Birmingham, Royal College of Psychiatrists and Mencap.
Gerrard, D, Leadbitter, A, Lee, R, Rhodes, J & Ling, J. (2019). Does positive behavioural support (PBS) help or hinder a STOMP medication challenge? Advances in Mental Health and Intellectual Disabilities, 13,https://doi.org/10.1108/AMHID-12-2018-0051.
Jenkins, R. (2000). Use of psychotropic medication in people with a learning disability. British Journal of Nursing, 9(13), 844-850, 10.12968/bjon.2000.9.13.5512.
Langdon, P. E., Clare, I. C., & Murphy, G. H. (2010). Measuring social desirability amongst men with intellectual disabilities: The psychometric properties of the Self-and Other-Deception Questionnaire—Intellectual Disabilities. Research in Developmental Disabilities, 31(6), 1601-1608, 10.1016/j.ridd.2010.05.001.
Mahan, S., Holloway, J., Bamburg, J. W., Hess, J. A., Fodstad, J. C., & Matson, J. L. (2010). An examination of psychotropic medication side effects: Does taking a greater number of psychotropic medications from different classes affect presentation of side effects in adults with ID?. Research in developmental disabilities, 31(6), 1561-1569, https://doi.org/10.1016/j.ridd.2010.05.006.
Mental Health Act 1983 (as amended by Mental Health Act 2007).
National Institute for Health and Care Excellence (2015), “Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges” (NICE Guideline 11), available at: https://www.nice.org.uk/guidance/ng11
NHS England Stopping over-medication of people with a learning disability (STOMPLD) (2016), available at: www.england.nhs.uk/wpcontent/uploads/2016/06/stopping-over-medication.pdf
Public Health England (2015), “Prescribing of psychotropic drugs to people with learning disabilities and/or autism by general practitioners in England”, Available at: http://clok.uclan.ac.uk/17970/1/Psychotropic%20medication%20and%20people%20 with%20learning%20disabilities%20or%20autism.pdf
Raghavan, R., & Patel, P. (2010). Ethical issues of psychotropic medication for people with intellectual disabilities. Advances in Mental Health and Intellectual Disabilities, 4(3), 34-38, 10.5042/amhid.2010.0541.