How Is Psychotropic Use for Challenging Behaviour in People With Intellectual Disability Understood by Stakeholders? A Concept Analysis Using Rodgers' Evolutionary Approach

ABSTRACT

Psychotropic use for challenging behaviours in people with intellectual disability persists despite initiatives and prescribing guidelines encouraging judicious use. The use of some medications, such as psychiatric medications, can be stigmatised or linked to certain social and cultural beliefs. Rodgers' (1989) evolutionary framework of concept analysis was employed, alongside qualitative data collection, to examine the extent to which people with intellectual disability, their family members and health professionals have similar beliefs about appropriate psychotropic use and shared decision making processes. This study found that the justification for psychotropic use ranges from maintaining mood and safety according to service users and service providers; however, only service providers spoke about the use of medication as a last resort or legacy use. We identified organisational and health system factors, as well as professional, cultural, and relational factors stemming from diverging perceptions of psychotropic risk and power imbalances that influence psychotropic use. This suggests that there are gaps in understanding how to support decision making among people with intellectual disability about their medications. The results clarify the need for further research on effective interventions to enhance the shared decision making process around medications.

Summary

The study considers the extent to which service users with mild or moderate intellectual disabilities and service providers share similar beliefs about the use of psychiatric medicines for challenging behaviours. Both service users and service providers were familiar with using psychiatric medicines for maintaining mood and safety, and valued positive behavioural supports. We identified divergences in views about medications that were linked to context, power dynamics and differing perceptions of the risks associated with medications. This suggests that there are gaps in understanding how to support decision making among people with intellectual disability about their psychiatric medications.

1. Introduction

The literature reports that approximately 15% of individuals with intellectual disabilities display behaviours that challenge, including aggressive, disruptive, destructive and self‐injurious behaviour [1, 2]. Challenging behaviour is a catch‐all term used to describe any behaviour that may threaten the physical safety of a person with ID or those around them, or that is likely to limit access to services and community facilities [3]. It is accepted that the behaviours arise when a person's needs are not met due to both environmental and individual factors [4]. Some common triggers for behaviours that challenge include communication difficulties, being in pain and/or discomfort, escaping or avoiding a task, sensory issues, lack of choice and control and emotional/psychological distress/trauma. These behaviours can be complex to manage, which poses obstacles to social integration and may lead to stress for carers, community placement breakdown, hospital admission and restrictive practices such as physical and chemical restraint without appropriate evidence [5].

Recently, there has been a proliferation of studies [6], service initiatives [7, 8] and prescribing guidelines [9] calling for judicious prescribing of psychotropic medication among people with intellectual disability. This is on foot of strong evidence of high rates of utilisation of psychotropics, with figures varying between 32% and 85%, which is higher than in the general population [10, 11]. The risks, side effects and potential ineffectiveness of psychotropic medications among the ID population for challenging behaviour have been well described in the literature [12]. Risks include movement (extra‐pyramidal) side effects, involuntary autonomic disturbances, and endocrine and metabolic disorders [13]. Some can cause apathy, and those with a high level of anti‐cholinergic activity might diminish attention and reasoning, especially when used with other anti‐cholinergic drugs [14].

Calls by patient advocates and healthcare providers for a reduction in off‐label prescribing of psychotropics for challenging behaviours is a key area for action, with psychotropics increasingly being labelled as a chemical restraint [15, 16]. Restrictive medication practices may include concealing medication during administration, compelling a person to take medication against their will, or using a sedative medication to curb behaviours where it is not licensed [17]. However, it is contested as to whether medication practices are indeed restrictive measures [18], with justification expressed as preventing potential harmful consequences of challenging behaviour for the person themselves and others. Given the concerns about the overmedication of people with intellectual disability and psychotropic medication having a questionable therapeutic value in addressing the underlying cause of challenging behaviour in people with intellectual disability [19], the justification for psychotropic use warrants further inquiry.

Despite guidelines, the use of psychotropic medications for challenging behaviour persists [20, 21]. Implementation in practice is complicated by varying socially constructed interpretations of challenging behaviour and potentially stigmatising connotations of ‘chemical restraint’, which may imply that medication is somehow different when taken by a person with a disability. The idea that medications have a social meaning in how they are experienced and understood is not new [22]. The literature around perceptions of psychotropic use emphasises how conceptual insights can shed meaning on how patients and staff develop experiential pharmacology knowledge as they gain experience with medications, and how perceptions of medications continually shift over time [23].

Weighing up the benefits and risks of prescribing or taking psychotropic medications requires shared decision making. The term shared decision refers to reaching a decision about a treatment plan taking into account all perspectives, including medical expertise and the lived experience of the person [24]. Many different understandings of what shared decision making looks like in practice have been written about, and professional, political and philosophical drivers have been identified [25]. Furthermore, the literature about shared decision making in relation to psychotropics in intellectual disability is underdeveloped. Two recent studies have identified barriers and facilitators to shared decision making about medications among people with intellectual disabilities [26, 27]. Opportunities to improve decision making about medications include providing accessible information, adapting communication styles, interpreting signs and preferences, ascribing agency to a person's actions or involving a trusted person [26, 28]. Given that shared decision making around medications for challenging behaviour has proven difficult to operationalise in practice, we believe this study may help broaden the understanding of how stakeholders perceive supportive conversations and practices when prescribing and taking psychotropic medications.

The paper aims to explore the views and experiences of people involved in the management of psychotropic medicines used to treat people with intellectual disabilities, who live with behaviours that challenge in Ireland. It includes service users, carers, and health and social care professionals. Application of concept analysis offers an original approach to investigate how shared decision making about psychotropics is perceived by stakeholders [29]. It is hoped that by examining the extent to which stakeholders have similar beliefs about appropriate psychotropic use and shared decision making processes, we may identify opportunities to improve medication management.

2. Methods

2.1. Study Design

A qualitative study utilising semistructured interviews and focus groups undertaken in the Republic of Ireland. Rodgers' evolutionary concept analysis [29] was employed to examine the concept of appropriate psychotropic use for challenging behaviour and shared decision making from the perspectives of the person and their care providers (Table 1) [11]. Concept analysis provides a foundation for developing theories about phenomena by defining complex real‐world attitudes and practices more clearly. Additionally, the social perception of intellectual disabilities is gradually changing; how psychotropics are perceived changes alongside this. The strength of this approach is that it allows for a comparison in how the understanding of a concept varies between contexts and health and social perspectives. The COREQ consolidated criteria for qualitative research reporting guided the activities and reporting in this study (Table S1) [30, 31]. The study was conducted in accordance with the Basic & Clinical Pharmacology & Toxicology policy for experimental and clinical studies [32].

TABLE 1.

Questions used in the analysis phase when mapping codes to Rodgers' themes.

Surrogate terms	What words are used to describe psychotropic medications (or to describe the reasons for psychotropic medication use)?
Attributes	What are the justifications that are commonly associated with psychotropic use
Antecedents	What are events/factors that generally exist when psychotropic use happens?
Consequences	What are the situations that follow initiation of psychotropic medications?

2.2. Consent and Ethics

Approval for this study was granted by both a Research Ethics Committee of a University (University of Limerick) and an intellectual disability service provider (RehabCare Group). Participation in the study was voluntary, and written informed consent was obtained. Participants' anonymity was safeguarded by using pseudonyms, and all data were kept private and confidential and stored in accordance with the Irish data protection laws (https://www.dataprotection).

2.3. Study Setting

This study was conducted in the mid‐west and west region of the Republic of Ireland, across 5 service sites in one care organisation, RehabCare Group. This organisation provides health and social care services in the community to over 12,800 adults and children, including people with disabilities or additional support needs.

2.4. Participant Recruitment

Both purposive and convenience sampling methods were used to recruit participants. Sampling was purposive in that we deliberately sampled from five service sites to ensure participants living in both group homes and in the community were included. We also recruited via professional networks and word of mouth. Professional staff, including doctors, behavioural analysts, psychologists, site service managers and senior regional managers, were recruited via a gatekeeper who is the senior manager of Rehab Group. An informative email was distributed to clinical areas offering staff an opportunity to contact the researcher to learn more about the study. Staff who expressed an interest in participating were provided with an information leaflet and consent form to consider their involvement.

Potential service user participants were identified by gatekeepers in five selected clinical services. People who were interested in taking part were invited to contact the lead researcher directly or ask for their contact details to be sent to the lead researcher. Potential participants met with a member of the study team in person at a time and place convenient to them to hear more about the study and decide whether they would like to take part. The inclusion criteria for service users were as follows: must be over 18 years of age, mild or moderate intellectual disability, English speaking and prescribed a psychotropic medication. People with severe intellectual disability were excluded. The presence of a history of challenging behaviour was assessed by the service providers identifying potential participants due to the unavailability of written indications for prescribed medications in records.

Participants were offered a choice of in person, phone or online interviews and an individual one‐to‐one interview or focus group with SM and/or DK. Study materials (information sheet, consent form) were created in plain English/easy read language with the support of an independent patient and public involvement (PPI) panel. To support service users to give consent, potential participants met with a member of the study team in person at a time and place convenient to them to hear more about the study and decide whether they would like to take part. A trusted person known to the service user was present during the initial meeting and consent discussion to support understanding, safety and rapport with the research team. The role of the support person varied depending on what worked best to enable the person with intellectual disabilities to participate in the interview. It ranged from being present for the initial introduction only to providing support during the interview itself, such as interpreting body language suggesting the interviewee needed a break or providing additional information or suggesting words to help the service provider respond to a question.

2.5. Data Collection

Data were collected by semistructured audio recorded interviews conducted between January and July 2022. The average duration of each interview was 30 min and focus group interviews was 52 min. The interview guide was developed by the researchers and a PPI advisory group based on the evidence from the literature, clinical practice expertise, and lived experiences and is included in the appendix. The interview guide covers the participant's knowledge and attitude towards psychotropic medications, any challenges experienced with taking/managing the medications, and suggestions to improve how the medications are used.

A pilot interview was conducted with a service user to test the interview guide and make any necessary adjustments. The pilot volunteer was aware that they were part of a pilot that was being used to develop an appropriate interview guide. The interview guide for professionals was reviewed by two of the study team (a prescriber and a lead behavioural analyst) and amended based on their feedback. Interviews were conducted face‐to‐face and focus groups were conducted with staff (n = 12) online via Teams. Eight service users were interviewed (one male and seven female) all of whom lived in community‐based accommodation. Five carers took part in the interviews, alongside service users. Two carers were family members, and three were paid carers. Twelve service providers participated in the focus groups (three male and nine female); three were service managers/team leaders, two senior managers, two prescribers, two psychologists and three behavioural therapists.

Data collection was stopped when data saturation occurred as it was found that no new information was emerging, and sufficient variance was observed in the data.

2.6. Data Analysis

One author transcribed all audio‐recorded interviews verbatim (SM). Initial data analysis consisted of manual, line by line, inductive open coding transcripts, using a descriptive code mechanism by 2 authors; new codes were added as the process continued (Table S2) [33]. The codes were then grouped according to Rodgers' themes (surrogate terms, attributes, antecedents, examples, consequences), and service user and service provider quotes which were iteratively reviewed and a consensus reached between 3 authors (SM, DK, OD) (Table S3) [29, 34]. Rodgers' themes and the core questions used in the analysis are presented in Tables 1 and 2. For carer data, when the carer was helping the person with intellectual disability articulate their ideas, the data were analysed as from the service user perspective. At times when carers were speaking about their own experiences of managing medications, this was coded a service provider perspective. The themes were then refined to gain greater clarity and understanding of the justifications for psychotropic use and related medication management practices (Table S4 and results).

TABLE 2.

Summary of the key themes identified grouped according to Rodgers' categories.

What ‘using psychotropics for challenging behaviour’ means	Attributes: Justifications for psychotropic use	Antecedents: Events/factors that generally exist when psychotropic use happens	Consequences: Situations that follow initiation of psychotropic medications
Services users: ‘anxiety’, ‘nerves’, ‘mood’, ‘epilepsy’ and ‘I am on them for all different things’ Service providers: ‘chemical restraint’	1. Maintain well‐being and/or mood 2. Maintain safety 3. Legacy prescribing 4. Used as a last resort	1. Level of resources 2. Mental health diagnoses 3. Personal histories 4. Physical environment 5. Staff training 6. Multidisciplinary collaboration	1. Shared written information about medicines 2. Consistency in delivery of care 3. Delegating to and having participation from a trusted carer/family member 4. Implementing adjustments to medications 5. Implementing behavioural treatment plans

Data were analysed by the researchers and shared and discussed with the PPI group for confirmation, understanding, interpretation and representativeness.

3. Results

3.1. Overview of Rodgers' Themes

Table 2 summarises the key themes identified grouped according to Rodgers' categories.

3.2. Evolving Understanding of How Psychotropics Are Used to Manage Challenging Behaviour

Service providers noted that psychotropics are used in persons with intellectual disability for psychiatric disorders and to manage challenging behaviour as defined in various diagnostic guides. Participants felt that their role in supporting a person with challenging behaviour has changed over time as non‐pharmacological behavioural supports have increased. All interviewees with intellectual disability had some understanding of what a psychotropic medication was, and their understanding was linked to the reason they were taking it. Service users used the following words ‘anxiety’, ‘nerves’, ‘mood’, ‘epilepsy’ and ‘I am on them for all different things’. The service providers frequently used the term ‘chemical restraint’ to describe psychotropic medication use.

Some carers expressed that their service users may not have understood how the medication worked, but they understood that psychotropic medication use was linked to their physical or mental health diagnosis.

She tells me she doesn't know why she's taking it, but she does recognize the term schizophrenia. She kind of has a sense that “that is something that applies to me”. (Behavioural therapist)

3.3. Attributes

Attributes are justifications that were commonly associated with psychotropic use. Four distinct justifications for psychotropic use were identified: (1) maintain well‐being and/or mood; (2) maintain safety; (3) legacy prescribing; (4) used as a last resort (Table 2).

3.3.1. Maintain Well‐Being and/or Mood

The most common reason reported to use psychotropics was to facilitate engagement in positive activities. Most participants reported being able to think of instances where the medications led to increased engagement with social activities and behavioural treatment plans.

Behaviour that affects the quality of life in terms of not being able to engage in activities that they might have once preferred or enjoyed. (Service provider)

Family members also perceived medications as important for engaging in behavioural treatment plans and ‘staying healthy’.

Maintaining a positive mood and facilitating activities that the person enjoys were the main outcomes participants linked to taking psychotropics. Service users reported ‘It makes me happy and steady’ and ‘I'm getting out of the house more’. The medicines were seen as helping them participate in activities they enjoy such as swimming, aqua aerobics and reading ‘they are good for focus’.

3.3.2. Maintain Safety

Participants agreed on the importance of psychotropics to decrease the physical harm an individual poses to themselves or others. Psychotropics were considered an essential treatment when a person ‘has self‐injurious behaviour that is eventually going to have significant impacts on her general well‐being’. Medication was also seen as important by service providers as to give staff a sense of safety, ‘the risk they might pose to themselves with might pose to other people they don't know’. It also increased job satisfaction for service providers by enabling them to build therapeutic rapport.

It's bringing her to a baseline that she's able to accept the interventions that we're trying to give to that person. (Service provider)

Some service users were also aware that their medicine was to help with feelings of self‐harm that they had expressed previously.

Sometimes I could say I'm going to kill myself but I wouldn't do that … it just comes into my head when I get really bad. (Service user)

3.3.3. Used as a Last Resort

Service providers and carers (not service users) described how psychotropics are sometimes used if all other approaches are not working. Some centres described the scenario where an individual will have a plan to manage challenging behaviours and in the event that the behaviour persists, in spite of non‐pharmacological interventions, then a psychotropic medication will be prescribed.

The other behavioural therapist would help the staff team put together a protocol. So if this behaviour escalates, … and we have tried de‐escalation or distraction or various non‐chemical techniques, then the last resort is the administration of psychotropic medication. (Service provider)

3.3.4. Legacy Prescribing

Service providers described situations where service users have been on psychotropics for a long time, ‘we've inherited polypharmacy over years’. The medication use persists as there is perceived hesitancy from any one of prescribers, care staff, family and individuals themselves.

That that exploration hasn't happened and it would cause huge disruption … for her to be weaned off that medication out or to look at alternative. (Service provider)

The environment has a major role to play in any decisions to change/taper medications, as it requires having access to robust patient histories from carers/family and support for such an intervention.

To come off the medication, you need medical supervision and that's a big expense as well. (Service provider)

It was noted by service providers, that often changes to medications are crisis led. Two service users described recent admissions to hospital that resulted in changes to medications as being stressful.

I was a bit frightened for me. The nurses used to come in and out to me because I was nervy on my own. (Service user)

3.4. Antecedents

Antecedents are events or phenomena that exist generally for the concept to occur [29]. These have a persistent influence on how psychotropics are managed: (1) level of resources, (2) mental health diagnoses, (3) personal histories, (4) physical environment, (5) staff training and (6) multidisciplinary collaboration (Table 2).

3.4.1. Level of Resources

Service providers described varying procedures to access psychiatry and supports, depending on geographic location and financing structures.

A behavioural therapist will cover number of geographical locations, so dependent on the location that the person you're supporting is there is varying and levels of support from psychiatric services, from community based mental health ID teams and from GP's. (Service provider)

Limited access to psychiatry was noted by several participants. Private financing was highlighted as essential to access of behavioural supports, ‘buying in private healthcare and multidisciplinary supports to work alongside the need for psychotropics’ (service provider).

3.4.2. Mental Health Diagnoses

Service providers also spoke about the time required to get to know a person well enough to understand their behaviours, and they highlighted the difficulty in distinguishing between behavioural versus mental health diagnosis. Some circumstances were reported where a mental health diagnosis was applied to a person to help access services based on eligibility criteria.

It isn't necessarily somebody who has bipolar, they may be something else, autism let's say, but in order for that person to have got a service back in 1995, they got diagnosed with bipolar to access services. (Service provider)

Service providers reported varying access to services depending on level of intellectual disabilities, and whether or not a formal mental health diagnosis was available.

We often have people with mild ID who won't be looked at by an ID, mental health team, and then we have the community based, maybe psychiatric services who won't look at them because they have a diagnosis of ID. (Service provider)

There were calls for improved transparency on care pathways, ‘if we had better information on the pathways to care. As in, how do I go from having identifying someone who might need psychiatric care to getting them that care through the public system’ (service provider).

3.4.3. Personal Histories

There was an acknowledgement that some service users have experienced high levels of trauma. Three service users alluded to traumatic events in their past that have affected their level of trust in service providers and caused them distress. These events included familial addiction, experiencing sexual violence, and having family members with poor health and family members passing away.

And then with the build‐up of everything, my depression went down. (Service user)

3.4.4. Physical Environment

Service providers noted the importance on the person's environment and the significance of adjustments to meet a person's needs. These details included ‘getting him a better day service’, meal times, day of the week, timing of family visits. Training around understanding and recognising behaviours within a disability and within mental health works and what level behaviours should be concerning was noted as very important.

There's a tendency to over pathologize behaviour where sometimes the behaviour itself is actually a symptom of the environment they're in. (Service provider)

Distress was expressed when there was a loss of familiarity with carers that impacts therapeutic rapport and/or the environment. Going to hospital was stressful for participants.

It was a bit frightening for me. The nurses used to come in and out to me because I was very nervy on my own. (Service user)

3.4.5. Staff Training

Care staff reported feeling more confident when administering medications due to training. Several service providers also spoke about the importance of preparing well in advance of accompanying someone to their appointment. It was noted that staff training and time to complete this are important.

We've really have got to make sure that the staff accompanying the clients are really savvy and up to the job. (Service provider)

3.4.6. Multidisciplinary Collaboration

Multidisciplinary collaboration is required during the psychotropic management process. Some service providers reported that communication between providers was not efficient, and it impacted their provision of care. For example, service providers may not be notified about an admission to hospital for an acute issue where medications are changed.

Some social care professionals felt their treatment goals were different to those of the health professionals, and there was a lack of understanding/alignment between both sides. One service provider spoke of an ideal world with a multidisciplinary meeting to review cases and treatment plans.

3.5. Consequences

Consequences describe the situations that follow the ‘occurrence’ of the concept, that is, use of psychotropics. Five outcomes were identified related to psychotropic management.

3.5.1. Shared Written Information on Medications

Both service users and their carers or service providers were able to describe local medication management policies and they used a shared language which demonstrated shared understanding of how the system worked. This reduced anxiety around knowing the medication regime and making sure it was followed correctly.

They have a sheet with all my medications on it and they tick them off. (Service user)

As psychotropic prescribing guidelines and policies in intellectual disability care have progressed over time in Ireland, participants spoke positively about their organisations effective implementation and continuous updating of local policies and procedures, as these were constantly evolving.

Some service users valued being able to access the written information staff kept on their medicines.

Something I could look at, write down in my diary. (Service user)

Maybe the staff would show me on the tag, how many times do I have to take them every day. That would help. Learning the labels. (Service user)

Written information during consultations such as easy read leaflets about medicines were also mentioned as useful tools to aid communication. One service user noted he found it hard to speak with his doctor about his as medicines as ‘he spoke a bit too hard and fast’ and ‘sometimes he used words that we didn't understand’.

3.5.2. Consistency in Delivery of Care

Service users reported that routine was very important to help compliance with taking medications.

I see them on the table every morning so I know I have to take them. (Service user)

Service providers reported getting consistency in care provision, particularly if trying a new intervention as a challenge.

Sensory OT diet … you need to be regimental. In the sense that, if the plan says that the intervention happens on the hour, every second hour, it needs to happen, that consistency needs to be across the board. (Service provider)

Consistency also refers to the need to be clear about medication dose and timing. The impractical nature of PRN medications was noted.

It's the amount of staff that you have to get on the same page to administer the PRN at the same point. It's a very hard thing to achieve. (Service provider)

3.5.3. Having Active Participation and Delegation to Family/Carers

All service users interviewed described some form of medication‐related work that was undertaken by either a paid carer or family member. These tasks included making appointments with health professionals, collecting prescriptions and/or medicines, organising their pill box or blister pack, providing reminders to take medicines, storing medicines safely and accompanying them to appointments to help. Persons demonstrated deep trust in their family members or teams that helped them.

Service providers saw advocating for the person as part of the job, very motivating and rewarding when they were able to successfully put helpful supports in place and frustrating when it was not possible.

There's one person in particular who I have spoken to several times and has consistently given her permission for me to attend those reviews with her. I've written to them and asked to be included … That hasn't happened. (Service provider)

Family members placed great value in being include in communications about the person with intellectual disability. Families and paid carers with experience of advocacy for the person with intellectual disability described mixed positive and negative experiences of articulating how a medication change was negatively affecting a person with intellectual disability. They used the words ‘strong’, ‘responsible’, ‘savvy’ and ‘armed’ when describing attending appointments.

Two caveats to family/carer involvement were noted. Two service providers noted how, when making treatment plans, they must consider inaccuracies or incomplete information in the personal histories that are shared with them. They described getting conflicting stories from family/carers about challenging behaviours and how it can take time to get to know the person to make a diagnosis. Furthermore, service providers described getting buy‐in from family for medication changes or monitoring difficult at times due to the family member's beliefs about what was best for the person with intellectual disability.

Some service users enjoyed living independently and knowing help was available when they wanted it. For example, one service user highly valued privacy.

I went for myself because I'm an adult. And you know doctors things are personal you know. (Service user)

3.5.4. Implementing Adjustments to Medications

Having clear evidence to support decision making was seen as important when getting buy‐in to make changes to medication by service providers. Making changes to medications with satisfactory outcomes was noted as a big help to overcome negative feelings about their medications.

When they put me up to higher doses, I seemed to sleep a lot … after a while, he changed some and now it's much better. (Service user)

Other times, there was an acknowledgement/identification of a concern by service providers about the high dose of a medicine and communication about their concern with the service user. This is useful information sharing, even though there was no clear path of action as to how to address the issue. There was a sense of solidarity and both sides were informed. ‘We are on a high dose of lyrica for anxiety. We're on that a few years … we were actually talking recently about maybe decreasing it. It's a lot.’ (paid carer).

One family member took a cautious approach to medication changes, and had a holistic view of well‐being. They described how a suicide attempt after a medication change ‘undone an awful lot of work. And her confidence was absolutely shattered’.

3.5.5. Implementing Behavioural Treatment Plans

Service providers described the related concept of behaviour therapy, noting its increased availability. Having an awareness of environmental triggers, such as time of year, day centre/activity preferences and cyclical nature of some challenging behaviours gave carers a sense of motivation and integrity in their work to improve daily activities for a service user.

We worked on his transitions, getting him a better day service. We were able to reduce all medication and psychotropics from his prescription for the first time ever. (Service provider)

Service providers were empowered when they were able to proactive observe and respond to service users changes in mood or behaviours as useful to reduce or prevent a medical intervention for difficult behaviours.

We agreed was that if we saw a change in his behaviour that was sustained beyond 14 days, that his funding would increase to help support his environment … that becomes a really strong motivator in terms of trying things and being creative with the support for the person you know. (Service provider)

4. Discussion

The concept analysis approach in this study highlights for the first time how the understanding of the use of psychotropics for challenging behaviour varies between service providers and service users, suggesting an opportunity to improve information sharing and shared decision making. Both service providers and service users similarly articulated the usefulness of medications for maintaining mood and safety; however, only service providers spoke about the use of medications as a last resort or legacy use. Legacy prescribing is viewed as being driven by historical organisational and political factors. Varying perceptions of risks of psychotropics and power imbalances arose within the themes of involving family members in medication management and adjusting medications, pointing to the importance of relational and cultural factors that influence psychotropic use. The divergence in terminologies suggests areas where awareness and education of these concepts vary between professionals and service users. We also saw common positive views between professionals and service users of the benefits of behavioural approaches to challenging behaviours and the importance of collaboration with behavioural therapists and people with ID and their carers. We will discuss how each of these findings helps our understanding of the use of psychotropics for challenging behaviour in intellectual disabilities.

First, we will explore the reasons for persistent psychotropic use in our study. Most participants were able to think of instances where psychotropics helped a person engage in social activities and/or behavioural treatment plans and cope with personal traumas, suggesting cautious use of psychotropics does have therapeutic value for some people in practice. Service users and service providers both highly valued positive behavioural therapy. The use of common language in relation to treatments by service providers and service users suggests some level of agreement between the professionals and families, which is important for shared decision making. However, it may also signal the possibility of ‘inherited’ and likely unrealistic expectations and beliefs among staff regarding the positive effects of psychotropics on the behaviour and quality of life [35]. In addition, some service providers also spoke about managing behaviours by adjusting activity times or types, rather than opting for a medication.

Our study found evidence of a reluctance to adjust medications, particularly where it has been prescribed for a long time (legacy prescribing) and there is a lack of access to psychiatric services and community supports. Addressing legacy psychotropic use appears to be recognised as a distinct issue by our study participants. It is implied that it is related to historical practices from organisations and cultures in the health system and somehow requires a different approach to implementing first‐line approaches to managing challenging behaviours. Currently, there is unclear evidence about how to address this, with some study participants suggesting it would be resource intensive. The discussions also point to the dynamic nature of recommendations and understanding of appropriate psychotropic use. Carers reported no clear next steps when they felt someone had been on a medication at a high dose for a long time. Service users did not address the duration of use of a psychotropic as a concern. This is likely driven by unclear evidence available, possible differences in awareness of the issue between participants, and suggests that information to service users about the duration of use of psychotropics was either unclear, not given or not retained.

Proactive adjustments to medications, rather than reactive, were highlighted by some in this study as evidence of appropriate use of psychotropics. A systematic review on deprescribing psychotropics highlights a mixture of positive and negative consequences, such as increases in episodes and intensity of behaviours that challenge, improvements in weight, prolactin and testosterone measurements, exacerbation of dyskinesias, represcribing, placement breakdown, hospital admission and increase in required carer support [36]. A recent article suggests that professionals are responsible for monitoring and reporting their peers' and shifting practices to using psychotropics as a last resort [37]. The lack of service user articulation of concepts related to last resort hints at tensions in shared decision making in the acute/crisis scenario. For example, service providers may feel genuine partnership is difficult to implement in a scenario where they have to prioritise safety and are constrained by resources. There was evidence in our study that when carers advocated on behalf of the person with intellectual disabilities about changes to a medication, there were varying perceptions of risk and power imbalances that convey the relational and cultural aspects to implementing shared decision making [38]. Our study suggests that given the organisational and cultural influences on prescribing, more needs to be done beyond organisational policies on safe prescribing to shift culture around relationship building and cultural factors in services.

The study findings around consistency in the delivery of care, staff training, understanding behaviours, implementing behavioural treatment plans and information sharing between professionals need to be understood within the Irish healthcare system. Electronic health records are not connected between services such as GP, hospital, psychiatry, psychology and behavioural therapy. Ireland's current programme for government outlines a health policy direction to enhance integration between services, to implement the eHealth Programme, and to move towards people with intellectual disability accessing healthcare in the same way as the general population [39]. A medication passport document could help share information [40, 41] and Doyle highlights the use of such in providing supportive care by a GP, hospitals and pharmacists for children with intellectual disability [42]. While medication passports serve a valid function in providing coordinated and appropriate care [43] there is little evidence of their use in practice [44]. Caution must also be taken in making generalisations within the intellectual disability population, as the spectrum from mild to profound can be vast, and often much of the research is collected from people with mild ID [45]. To support people with intellectual disability to have greater autonomy in medication decision‐making, research is needed to investigate the use of communication tools that would enhance knowledge and understanding of medications for all persons with intellectual disability [41] and support informed consent [26].

The importance of participation from a trusted carer/family member in medication management is well recognised in research and practice. For example, it is widely accepted to have a chaperone to medical consultations and examples of supports needed by family carers have been documented [46, 47]. One clear request from professional staff in this study was additional support on how to best represent a service user during a consultation and how to best prepare for the consultation. Some of this likely stems back to improving ways to work together interprofessionally, and the success of interdisciplinary team reviews has been well documented [48, 49, 50]. However, the literature also suggests that there is continued discrimination and unacceptable poor care in some health services, with the literature often covering the acute setting [51, 52, 53]. Demands for the provision of reasonable adjustments are growing, particularly from the United Kingdom. Advocacy by health professionals is often hampered by the challenges of navigating the healthcare system [54]. This highlights the need for progress in this area [55].

5. Strengths/Limitations

We believe this study allows for a critical appraisal of medication management practices. Two qualitative studies have been carried out in Australia [56] and England [57] exploring stakeholders perceptions of psychotropic medication use. This is the first qualitative study in Ireland.

However, we acknowledge that this study is confined to services of a single community‐based organisation and two regions in Ireland, which may limit the generalisability of findings to other settings, particularly institutional settings. Given that understanding concepts within their contexts is an essential aspect of Rodger's method, it is important to recognise that the variations in disciplinary norms between health and social care professionals, organisational policies and health systems will also limit the generalisability of the findings. Furthermore, we can expect understandings to evolve over time at different paces for different contexts and different people.

Although this study involved multiple stakeholders, the recruitment of participants was via self‐selection and this may have resulted in a greater representation of individuals with stronger pre‐existing attitudes towards medication use. It is also possible that participants may have answered the question about the benefits and risks of psychotropic use in a socially desirable way, reducing the reliability of our findings. Further, while we had multiple methods to include participants' with ID, the gap in participation of people with severe intellectual disability is recognised. In addition, a method to generate a homogenous sample of participants without a history of mental health diagnoses was not possible within the study, so a representative sample cannot be guaranteed. Nevertheless, we believe there is value in the conclusions. As research in this area develops further, it may be useful to carry out a concept analysis using a body of literature as input to overcome methodological challenges. Finally, there was limited cultural diversity across residents of participating facilities and further investigation of attitudes to psychotropics held by specific cultural groups and their health care providers is warranted.

6. Conclusion

Our study suggests that there is a range of justifications for the use of psychotropics for challenging behaviour in ID. Some are related to legacy prescribing and organisational and health system factors. Diverging perceptions of risk, professional accountability and power imbalances between service providers and service users also point to a set of professional, cultural and relational factors that influence medication management. This suggests that while guidelines and local policies go some way to raise awareness of appropriate management of challenging behaviours, there are gaps in understanding how to support decision making among people with intellectual disability about their medications. It suggests that looking beyond the single medication consultation to take a longer term view of shared decision making as a process with multiple stakeholders could improve communications to collate information for psychiatric diagnoses and treatment plans, as well as the implementation of conventional tasks such as providing behavioural therapy and medication reviews and monitoring.

Author Contributions

All authors developed the study concept and design via online meetings. D.O.R. facilitated recruitment of participants. D.K. and S.M. undertook the interviews and consent process. D.K. and S.M. analysed the interviews in discussion with all authors. The manuscript writing was done by D.K. and O.D., with subsequent review by all authors.

Ethics Statement

The study was given a favourable opinion from the University of Limerick Education and Health Sciences Ethics Committee and the Rehab Group Ethics Committees.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Appendix S1: Supporting Information.

Kelly D., Morrissey S., O'Regan D., Sharma D., and Doody O., “How Is Psychotropic Use for Challenging Behaviour in People With Intellectual Disability Understood by Stakeholders? A Concept Analysis Using Rodgers' Evolutionary Approach,” Basic & Clinical Pharmacology & Toxicology 137, no. 4 (2025): e70110, 10.1111/bcpt.70110.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.