Dataset Information

Short-term PsychoEducation for Carers To Reduce Over Medication of people with intellectual disabilities (SPECTROM): study protocol.

ABSTRACT: INTRODUCTION:Psychotropic medications that are primarily licenced for the treatment of psychiatric disorders are used widely (32%-85%) among people with intellectual disabilities (ID) often for the management of problem (challenging) behaviour in the absence of a psychiatric disorder. Care staff play a pivotal role in the prescribing process. Currently, no staff training programme exists to address the issue of overprescribing of psychotropic medication in people with ID, thus highlighting an urgent need for developing a psychoeducational programme (PEP) specifically designed to address this issue. We propose to develop a PEP for care staff using the methodology described in the UK Medical Research Council guide for complex interventions. METHODS AND ANALYSIS:The development of the PEP will involve (1) gathering information on available relevant training programmes, (2) running four focus groups with care staff and other professionals to establish the content and format of the PEP, and (3) organising a co-design event involving all relevant stakeholders to discuss the format of the PEP. A core project team will develop the PEP under guidance from the PEP Development Group which will consist of 10-12 relevant stakeholder representatives. Feedback from selected stakeholders on a draft PEP will allow us to refine the PEP before implementation. The PEP will have web-based modules supplemented by face to face training sessions. When the final draft is ready, we will field test the PEP on six to eight care staff from community care homes for people with ID. After completing the field test, we will run a focus group involving participants in the PEP to get feedback on the PEP. ETHICS AND DISSEMINATION:Ethics approval for this study was waived by the UK Health Regulatory Authority as the study does not collect any patient related information and only include care staff outside the UK NHS. This will be the first ever such universally freely available PEP supported by training manual and slides.

SUBMITTER: Deb S

PROVIDER: S-EPMC7245413 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

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Short-term PsychoEducation for Carers To Reduce Over Medication of people with intellectual disabilities (SPECTROM): study protocol.

Deb Shoumitro S Limbu Bharati B Crawford Mike M Weaver Tim T

BMJ open 20200408 4

<h4>Introduction</h4>Psychotropic medications that are primarily licenced for the treatment of psychiatric disorders are used widely (32%-85%) among people with intellectual disabilities (ID) often for the management of problem (challenging) behaviour in the absence of a psychiatric disorder. Care staff play a pivotal role in the prescribing process. Currently, no staff training programme exists to address the issue of overprescribing of psychotropic medication in people with ID, thus highlighti ...[more]

PMID: 32273322

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Project description:BackgroundFamily carers play a crucial role in supporting the health and well-being of people with intellectual disabilities. Given their role and responsibilities, many family carers experience significant and ongoing stress and mental health difficulties. Programmes and interventions which provide training and support to family carers have been shown to have a positive impact on levels of stress and quality of life. However, these are often face to face which can create barriers to full participation. Online interventions have been shown to offer flexibility in delivery compared with traditional face-to-face approaches. The primary objective of this study is to determine the feasibility of delivering the Carers-ID online intervention, while the secondary outcome is improved mental health in family carers of people with intellectual disabilities.MethodsFamily carers (n = 120) will be randomised to receive the intervention (n = 60) or assigned to a wait-list control (n = 60) group. The intervention ( www.Carers-ID.com ) consists of 14 modules which cover topics including the following: promoting resilience, providing peer support, reducing anxiety, managing stress, accessing local supports and managing family conflict and information for siblings who are carers. The intervention has been co-produced with voluntary sector organisations and family carers and tested for acceptability. Primary outcomes for this study include acceptability and feasibility of the outcome measures, recruitment, participation and retention rates and effect sizes. Secondary outcomes will be completed at three time points (baseline, following intervention completion and 3 months after completion). These include the following: the Depression, Anxiety and Stress Scale, the Warwick-Edinburgh Mental Well-being Scale, the Resilience Scale and the Social Connectedness Scale Revised. Participants (n = 12) who have taken part in the intervention arm of the research will be invited to participate in semi-structured interviews as part of the process evaluation.DiscussionThe Carers-ID intervention provides an online resource for family carers to support their mental health and well-being and promote their resilience. It represents an affordable and accessible means of delivering such support. Testing the feasibility of the intervention and related trial procedures is required to determine whether a full-scale randomised controlled trial to evaluate the intervention's effectiveness is warranted.Trial registrationClinicalTrials.gov : NCT05737823.

Project description:ObjectivesTo investigate psychotropic prescribing in the intellectual disabilities population over 10 years, and associated mental ill health diagnoses.DesignComparison of cross-sectional data in 2002-2004 (T1) and 2014 (T2). Longitudinal cohort study with detailed health assessments at T1 and record linkage to T2 prescribing data.SettingGeneral community.Participants1190 adults with intellectual disabilities in T1 compared with 3906 adults with intellectual disabilities in T2. 545/1190 adults with intellectual disabilities in T1 were alive and their records linked to T2 prescribing data.Main outcome measuresEncashed regular and as-required psychotropic prescriptions.Results50.7% (603/1190) of adults in T1 and 48.2% (1881/3906) in T2 were prescribed at least one psychotropic; antipsychotics: 24.5% (292/1190) in T1 and 16.7% (653/3906) in T2; antidepressants: 11.2% (133/1190) in T1 and 19.1% (746/3906) in T2. 21.2% (62/292) prescribed antipsychotics in T1 had psychosis or bipolar disorder, 33.2% (97/292) had no mental ill health or problem behaviours, 20.6% (60/292) had problem behaviours but no psychosis or bipolar disorder. Psychotropics increased from 47.0% (256/545) in T1 to 57.8% (315/545) in T2 (p<0.001): antipsychotics did not change (OR 1.18; 95% CI 0.87 to 1.60; p=0.280), there was an increase for antidepressants (OR 2.80; 95% CI 1.96 to 4.00; p<0.001), hypnotics/anxiolytics (OR 2.19; 95% CI 1.34 to 3.61; p=0.002), and antiepileptics (OR 1.40; 95% CI 1.06 to 1.84; p=0.017). Antipsychotic prescribing increased for people with problem behaviours in T1 (OR 6.45; 95% CI 4.41 to 9.45; p<0.001), more so than for people with other mental ill health in T1 (OR 4.11; 95% CI 2.76 to 6.11; p<0.001).ConclusionsDespite concerns about antipsychotic prescribing and guidelines recommending their withdrawal, it appears that while fewer antipsychotic prescriptions were initiated by T2 than in T1, people were not withdrawn from them once commenced. People with problem behaviours had increased prescribing. There was also a striking increase in antidepressant prescriptions. Adults with intellectual disabilities need frequent and careful medication reviews.

Project description:Epilepsy affects 1 in 5 people with an intellectual disability (ID), but little is known about their experiences of living with epilepsy. A qualitative study was conducted to investigate the impact and management of epilepsy in people with ID.People with epilepsy and ID and their carers were invited to take part in semi-structured interviews. Eleven participants with ID and their carers were interviewed together, one participant with ID and their carer were interviewed separately, two interviews took place with the participant with ID only, and one interview took place with the carer only. The interviews were transcribed verbatim, coded, and analyzed thematically (dual independent coding for 30% of the transcripts).Three themes emerged (participant characteristics, living with epilepsy, epilepsy management and information needs) which indicated the following: 1) diversity regarding health profiles, communication abilities, severity of epilepsy, perceived control of epilepsy, and support needs; 2) a reduction in severity and frequency of seizures for a sizeable proportion of participants through antiepileptic drugs; 3) the lifelong impact of epilepsy and related seizures on participants' activities and quality of life; 4) the perceived burden of epilepsy and difficulty managing the condition for a large proportion of participants; 5) high levels of satisfaction with epilepsy-related services and care; and 6) an overall lack of written accessible information about epilepsy.This study has highlighted a significant impact of epilepsy and related seizures on the daily lives and quality of life of people with ID. Although a sizeable proportion of participants and their carers considered their epilepsy to be well controlled, the majority reported difficulties managing epilepsy and minimizing its impact on their wellbeing. Excluding care staff and the support provided by epilepsy clinics, the participants had not accessed any adapted self-management or information resources about epilepsy.

Project description:BackgroundPeople with intellectual disabilities (PWID) are at six times higher risk of death due to COVID-19. To mitigate harm, as a high-risk group, significant social changes were imposed on PWID in the UK. Alongside these changes, the uncertainty of the pandemic influence, caused PWID and their carers to encounter significant stress. The evidence of the pandemic's psycho-social impact on PWID originates mainly from cross-sectional surveys conducted with professionals and carers. There is little research on the longitudinal psycho-social impact of the pandemic from PWID themselves.AimsTo examine the long-term psycho-social impact of the pandemic on PWID.MethodsA cross-sectional survey, following STROBE guidance, of 17 Likert scale statements (12 to PWID and 5 to their carers) to ascertain the pandemic's psychosocial impact was conducted. Every other PWID open to a specialist Intellectual Disability service serving half a UK County (pop:500,000) was selected. The same survey was re-run with the same cohort a year later. Descriptive statistics, Mann-Whitney, Chi-square and unpaired-t tests were used to compare responses. Significance is taken at p < .05. Comments were analysed using Clarke and Braun's approach.ResultsOf 250 PWID contacted, 100 (40%) responded in 2020 and 127 (51%) in 2021. 69% (2020) and 58% (2021) reported seeking medical support. Carers, (88%, 2020 and 90%, 2021) noticed emotional changes in PWID they cared for. 13% (2020) and 20% (2021) of PWID had their regular psychotropics increased. 21% (2020) and 24% (2021) had their pro re nata (PRN) medication adjusted. PWID or carers demonstrated no statistically significant variation in responses between themselves from 2020 to 2021. PWID were more likely to report being upset/distressed compared to their carers' perceptions of them in both years (p < .001). Four themes were identified.ConclusionThis longitudinal study highlights the diverse psycho-social impact of the pandemic on PWID in the UK. The Pandemic's psycho-social impact has been significantly underestimated.

Dataset Information

Short-term PsychoEducation for Carers To Reduce Over Medication of people with intellectual disabilities (SPECTROM): study protocol.

Publications

Short-term PsychoEducation for Carers To Reduce Over Medication of people with intellectual disabilities (SPECTROM): study protocol.

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