Experiences of psychotropic medication use and decision-making for adults with intellectual disability: a multistakeholder qualitative study in the UK

ObjectivesUnderstanding patient and carer perspectives is essential to improving the quality of medication prescribing. This study aimed to explore experiences of psychotropic medication use among people with intellectual disability (ID) and their carers, with a focus on how medication decisions are...

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Bibliographic Details
Published in:BMJ open Vol. 9; no. 11; p. e032861
Main Authors: Sheehan, Rory, Hassiotis, Angela, Strydom, André, Morant, Nicola
Format: Journal Article
Language:English
Published: England British Medical Journal Publishing Group 27.11.2019
BMJ Publishing Group LTD
BMJ Publishing Group
Subjects:
Adult
Aged
Caregivers
Caregivers - psychology
Community support
Consent
Decision making
Decision Making, Shared
England
Family - psychology
Female
Health care
Health Knowledge, Attitudes, Practice
Humans
Intellectual disabilities
intellectual disability
Intellectual Disability - drug therapy
Learning disabilities
Male
Medical personnel
Medication Adherence
Mental disorders
Mental Health
Middle Aged
Patient Acceptance of Health Care
Patient Participation
Patient satisfaction
Professional Role
Psychiatry
Psychotropic drugs
Psychotropic Drugs - therapeutic use
psychotropic medication
Qualitative Research
Shared decision making
England
United Kingdom > UK
qualitative research
psychotropic medication
intellectual disability
shared decision-making
ISSN:2044-6055, 2044-6055
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Summary:ObjectivesUnderstanding patient and carer perspectives is essential to improving the quality of medication prescribing. This study aimed to explore experiences of psychotropic medication use among people with intellectual disability (ID) and their carers, with a focus on how medication decisions are made.DesignThematic analysis of data collected in individual semistructured interviews.Participants and settingFourteen adults with ID, 12 family carers and 12 paid carers were recruited from specialist psychiatry services, community groups, care providers and training organisations in the UK.ResultsPeople with ID reported being highly compliant with psychotropic medication, based on a largely unquestioned view of medication as important and necessary, and belief in the authority of the psychiatrist. Though they sometimes experienced medication negatively, they were generally not aware of their right to be involved in medication decisions. Paid and family carers reported undertaking a number of medication-related activities. Their ‘front-line’ status and longevity of relationships meant that carers felt they possessed important forms of knowledge relevant to medication decisions. Both groups of carers valued decision-making in which they felt they had a voice and a genuine role. While some in each group described making joint decisions about medication with psychiatrists, lack of involvement was often described. This took three forms in participants’ accounts: being uninformed of important facts, insufficiently included in discussions and lacking influence to shape decisions. Participants described efforts to democratise the decision-making process by gathering information, acting to disrupt perceived power asymmetries and attempting to prove their credibility as valid decision-making partners.ConclusionsStakeholder involvement is a key element of medication optimisation that is not always experienced in decisions about psychotropic medication for people with ID. Forms of shared decision-making could be developed to promote collaboration and offer people with ID and their carers greater involvement in medication decisions.
Bibliography:Original research
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ISSN:2044-6055
2044-6055
DOI:10.1136/bmjopen-2019-032861