Abstract
Objectives
Research suggests that there is a longstanding overreliance on psychotropic medication for managing behaviours that challenge (BtC) in people with intellectual disabilities (PWID).
Despite national initiatives (NHS England, 2017a) aimed at reducing the overmedication of PWID, evidence suggests that psychotropic drugs are still frequently overprescribed, used as a first-line intervention, and associated with significant adverse side effects.
Additionally, PWID are often reported to have limited understanding of these medications, experience adverse side effects and are frequently excluded from decision- making processes. The effectiveness of psychotropic medication also remains unclear and is widely debated.
In response to these concerns, this review aimed to synthesise existing research on the experiences of PWID and their family carers (FCs) regarding the use of psychotropic medication for BtC.
Method
A systematic search of Medline, PsycINFO, Scopus, CINAHL and citation searches found 10 relevant studies that met the inclusion criteria to explore the experiences of PWID and their FCs of psychotropic medication.
Results
Thematic synthesis was utilised, and three superordinate themes emerged: ‘The Battle of Approaches’, ‘Perceived Efficacy and Effects’ and ‘The Power to Decide’.
Conclusion
This review explored the experiences of PWID and their FCs regarding psychotropic medication. While some felt medication was necessary, many raised concerns about its overuse and the lack of psychosocial alternatives. FCs often acted as advocates but reported feeling excluded from decisions and were emotionally impacted from their advocate role. PWID commonly lacked understanding of their medication, with compliance often driven by trust in professionals rather than informed choice. These findings highlight the need for better communication, accessible information, greater involvement of PWID and FCs in medication decisions and a need for clearer considerations of alternatives to medication, such as psychosocial assessments and interventions.
Abstract
Objectives
It is reported that people with intellectual disabilities (PWID) are being over medicated with psychotropic medication to manage behaviours that challenge (BtC; NHS England, 2017). Pro Re Nata (PRN) “as needed” psychotropic medication contributes towards this over medication, yet very little is known about how direct care staff make PRN decisions for the people they care for. Therefore, this study aimed to generate a better understanding of direct care staff’s PRN decision making experiences for PWID, in the hope that stakeholders, including clinical psychologists, are better informed to support them.
Design and Method
Purposeful sampling was utilised to identify direct care staff in private intellectual disability services who make decisions about PRN. Six direct care staff took part in semi- structured interviews, which were analysed using Interpretative Phenomenological Analysis. Results
Five group experiential themes emerged from the data: “Journeys to the Best Decision”, “Closeness is Preventative”, “Being Mindful of Difference and Variability”, “The Weight of Responsibility” and “Feeling Judged” with an overarching theme of “Impossible Dilemmas”. The findings are presented in a conceptual map and illustrated with verbatim quotes.
Conclusion
This study found that PRN decision making among direct care staff supporting PWID is complex, relational, and often emotionally challenging. Staff navigate "impossible dilemmas" influenced by risk, self-doubt, individual differences, trust, and knowledge of service users.
While PRN offers a safety net for risk management, decisions are rarely straightforward and often involve emotional burden. Enhancing emotion-focused coping, such as reflective practice and multidisciplinary support, may help reduce psychological burden and PRN use and promote more person-centered care.
