Expanding capacity in mental health research in intellectual disabilities

Hassiotis, Angela; Langdon, Peter E.; Courtenay, Ken; Hall, Ian; Lloyd‐Evans, Brynmor; Romeo, Renée; Kouroupa, Athanasia; Crossey, Vicky; Taggart, Laurence

doi:10.1192/bjb.2020.117

Cited by 3 publications

(3 citation statements)

References 11 publications

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“…voluntary sector) and inviting more befriending services to take part in the study. Recruitment approaches could involve service users with ID being employed as researchers and recruiting participants (Hassiotis et al 2020) by explaining the study to their peers and describing personal experiences of befriending and the impact it has had on them.…”

Section: Discussionmentioning

confidence: 99%

A pilot randomised controlled trial of befriending by volunteers in people with intellectual disability and depressive symptoms

Ali

Mckenzie

Hassiotis

et al. 2021

J intellect Disabil Res

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Background People with intellectual disability (ID) are more likely to experience chronic depression compared with the general population, which may be compounded by loneliness and lower levels of social support. Befriending aims to provide social support and promote engagement in community activities. No randomised controlled trials have examined whether befriending improves symptoms of depression and social outcomes in people with ID. The aim of this pilot trial was to assess the feasibility and acceptability of a future larger trial of one-to-one befriending by volunteers in people with ID and depressive symptoms.Methods Participants were adults with mild or moderate ID with a score of 5 or more on the Glasgow Depression Scale for People with Learning Disabilities (GDS-LD). They were randomised to the intervention arm (matched to a volunteer befriender for 6 months) or the control arm (usual care). Volunteers received training and supervision provided by two community befriending schemes.

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Section: Discussionmentioning

confidence: 99%

A pilot randomised controlled trial of befriending by volunteers in people with intellectual disability and depressive symptoms

Ali

Mckenzie

Hassiotis

et al. 2021

J intellect Disabil Res

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“…Our related paper on how to enhance participation of people with intellectual disabilities in research has been published elsewhere. 87…”

Section: Covid-19's Impact and Adaptationsmentioning

confidence: 99%

Intensive support teams for adults with intellectual disabilities displaying challenging behaviour: the IST-ID mixed-methods study

Hassiotis

Kouroupa

Hamza

et al. 2022

Health Soc Care Deliv Res

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Background National policy recommends intensive support teams for all areas of England for adults with intellectual disabilities who display challenging behaviour. However, to the best of our knowledge, there has not been a systematic evaluation of intensive support teams to date. Objectives Our objectives were to identify and describe the geographical distribution and characteristics of intensive support teams in England; to create a typology of intensive support teams; to investigate clinical and cost outcomes of intensive support team models and factors associated with those outcomes; and to explore professionals’, service users’ and carers’ experiences and describe the wider system context in which they operate. Design This was a two-phase mixed-methods study. In phase 1, a national survey examined the intensive support team models in operation in England. In phase 2, an observational study of adults with intellectual disabilities investigated the clinical effectiveness and cost-effectiveness of the two intensive support team models. Semistructured interviews with intensive support team managers and professionals, carers, and adults with intellectual disabilities explored their experiences of intensive support team care. In parallel, we examined service-level outcomes related to the function of intensive support teams. Setting Phase 1 included 80 intensive support teams serving 242 community intellectual disability services in England. Phase 2 included 21 intensive support teams, half of which were in the enhanced intensive support teams model and half of which were in the independent model. Participants In phase 1, a total of 73 intensive support team managers provided data. In phase 2, a total of 226 participants with intellectual disabilities from 21 intensive support teams (enhanced: teams, n = 11; participants, n = 115; independent: teams, n = 10; participants, n = 111) were enrolled in the study. A total of 42 stakeholders were interviewed. Main outcome measure The main outcome measure was the Aberrant Behaviour Checklist-Community, version 2, total score. Additional data sources were the carer and self-reported questionnaires, qualitative interviews and focus groups. Results Two intensive support team models were identified in England – enhanced and independent. Challenging behaviour at 9 months was reduced in both intensive support team models (β 3.08, 95% confidence interval –7.32 to 13.48; p = 0.561), but the observed Aberrant Behaviour Checklist-Community, version 2, score reduction appeared larger in the independent model than in the enhanced model (21% vs. 13%, respectively). No statistically significant differences were found in the secondary outcomes [Psychiatric Assessment Schedule for Adults with Developmental Disabilities Clinical Interview organic condition (odds ratio 1.09, 95% confidence interval 0.39 to 3.02), affective or neurotic disorder (odds ratio 0.91, 95% confidence interval 0.32 to 2.59), or psychotic disorder score (odds ratio 1.08, 95% confidence interval 0.21 to 5.50); risk score (β 1.12, 95% confidence interval –0.44 to 2.68); or quality of life questionnaire score (β –2.63, 95% confidence interval –5.65 to 0.40)]. Similarly, no differences were observed between models in relation to cost-effectiveness (health and social care costs mean difference £3409.95, 95% confidence interval –£9957.92 to £4039.89; societal costs mean difference –£4712.30, 95% confidence interval –£11,124.85 to £2106.36). The experiences of stakeholders did not differ between the intensive support team models, with carers and adults with intellectual disabilities valuing service accessibility, person-centred care and engagement. All stakeholders reported a range of barriers to intensive support team care. Service-level data and the operational policies from intensive support teams showed variation in organisational function and the roles of intensive support teams. The most commonly delivered intervention was positive behaviour support. Conclusions The study describes the operation of intensive support teams in England and identified two distinct models. We did not find advantages or disadvantages associated with clinical outcomes between models, nor did we find cost differences. On this basis, we recommend that local services decide which model best suits their circumstances. Limitations This was not a randomised controlled trial. It is possible that confounding factors have not been controlled for as there was no matching between intensive support teams. Last, there was no comparison with usual care. Future work There is need to develop model fidelity and investigate clinical effectiveness and cost-effectiveness in a randomised controlled evaluation of intensive support teams against treatment as usual. Study registration This study is registered as ClinicalTrials.gov NCT03586375, Integrated Research Application System (IRAS) 239820 and National Institute for Health and Care Research (NIHR) Central Portfolio Management System (CPMS) 38554. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 33. See the NIHR Journals Library website for further project information.

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“…In this paper we present findings from the first stage of a national investigation of intensive support teams (IST-ID study). 19 Our aims were: (a) to examine the geographical distribution and characteristics of ISTs in England; (b) to develop a typology of IST service models and (c) to describe the IST model profiles and contextual characteristics.…”

Section: Specialist Supportmentioning

confidence: 99%

Intensive support for adults with intellectual disability and behaviours that challenge: a survey of provision and service typologies in England

et al. 2020

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BackgroundApproximately 18% of adults with intellectual disabilities living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy in-patient stays. AimsTo identify and describe the geographical distribution and characteristics of ISTs, and to develop a typology of IST service models in England. MethodWe undertook a national cross-sectional survey of 73 ISTs. A hierarchical cluster analysis was performed based on six prespecified grouping factors (mode of referrals, size of case-load, use of outcome measures, staff composition, hours of operation and setting of service). A simplified form of thematic analysis was used to explore free-text responses. ResultsCluster analysis identified two models of IST provision: (a) independent and (b) enhanced provision based around a community intellectual disability service. ISTs aspire to adopt person-centred care, mostly use the framework of positive behaviour support for behaviour that challenges, and report concerns about organisational and wider context issues. ConclusionsThis is the first study to examine the delivery of intensive support to people with intellectual disability and behaviour that challenges. A two-cluster model of ISTs was found to have statistical validity and clinical utility. The clinical heterogeneity indicates that further evaluation of these service models is needed to establish their clinical and cost-effectiveness. Declaration of interestNone.

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Expanding capacity in mental health research in intellectual disabilities

Cited by 3 publications

References 11 publications

A pilot randomised controlled trial of befriending by volunteers in people with intellectual disability and depressive symptoms

A pilot randomised controlled trial of befriending by volunteers in people with intellectual disability and depressive symptoms

Intensive support teams for adults with intellectual disabilities displaying challenging behaviour: the IST-ID mixed-methods study

Intensive support for adults with intellectual disability and behaviours that challenge: a survey of provision and service typologies in England

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