Jill Bradshaw

Background: Pica, the persistent ingestion of non‐nutritive substances, poses significant health risks for individuals with intellectual disabilities yet remains under‐recognised, particularly in home settings. Method: This qualitative study explored the lived experiences of family members supporting a person with intellectual disabilities who engages in pica. Using Interpretative Phenomenological Analysis, four in‐depth, semi‐structured interviews were conducted with primary caregivers. Results: Five superordinate themes were identified: Living on High Alert , Systemic Failures in Care , Emotional Erosion , Resourceful Parenting , and The Silence Around Pica . Caregivers described constant vigilance, emotional exhaustion, and the strain of managing life‐threatening behaviours with little professional input. They also demonstrated creativity and resilience while fulfilling multiple roles as carers, advocates, and problem‐solvers. Conclusions: Findings highlight a profound gap between the severity of pica and the adequacy of professional responses, underscoring the need for increased awareness, training, and specialist support.

Background: Children with intellectual disabilities can display behaviours that challenge, often associated with poor outcomes. Despite national policy commitment to co‐production, little evidence is available on how such services deliver co‐produced activity. Methods: Qualitative data were collected from three services that reported co‐producing Positive Behaviour Support introductory workshops. Participants' experiences and perceptions of these workshops were described through individual semi‐structured interviews conducted with staff and family carers ( n = 24) and analysed using a Framework approach. Results: Two main themes were represented in the initial framework. Positives of Co‐production included the advantages of obtaining and combining theoretical and practical knowledge, including personal and professional development for those delivering the intervention. Challenges to Implementation included the time and effort required to build a collaborative way of working, barriers to organisational support and family carers' history with services. Conclusions: Support, funding and resources need to be made available and protected to make co‐production activities meaningful

Background Children with intellectual disabilities and behaviours that challenge (BtC) and their families require complex, multi-agency support. Despite policy commitments to strengthen community-based provision, including those arising from Transforming Care and the forthcoming Mental Health Bill (2025), there remains limited evidence on how these services are configured or what they cost to deliver. The National Institute for Health and Care Excellence (NICE, 2018) identified major evidence gaps in optimal service design, integration, and cost-effectiveness. Objective This research explores the structure and associated costs of community-based services in England that support children with intellectual disabilities and BtC. It aims to describe the configuration of local “service models”, identify cost drivers, and clarify data requirements for commissioning and evaluation. Methods Within the NIHR-funded MELD (Mapping and Evaluating Services for Children with Learning Disabilities and Behaviours that Challenge) programme, 278 services were identified across England. Using survey data (n=161), Latent Class Analysis and descriptive synthesis produced a typology of five community service models. Nineteen representative sites participated in a detailed costing study using a bespoke data collection instrument aligned with national unit-cost frameworks. Quantitative and narrative data on staffing, pathways, and overheads were analysed descriptively and thematically, with input from a Parent Advisory Group. Results Five distinct service models were identified: generic CAMHS, ID-CAMHS, Children and Young People’s Disability, Specialist BtC Support, and All-Age services. Costs were primarily driven by staffing mix, intensity of BtC support, and organisational structure. Considerable heterogeneity was observed in funding flows, eligibility, and waiting times. Conclusions This study provides the first national overview of community service configurations for children with intellectual disabilities and BtC. The findings highlight significant variation in organisation and cost, informing future economic evaluation and service-model optimisation in line with ongoing policy reform.

Background: People with intellectual disabilities frequently communicate through Key Word Signs (KWS). Although various methods have trained practitioners to sign, they have not led to increased use. This study evaluated whether Precision Teaching would lead to improved outcomes. Method: Practitioners were divided into experimental ( n = 4) and control conditions ( n = 5) using a multiple baseline across participants design. Experimental participants received Precision Teaching for 60 signs three times a week for 14 weeks. Control participants had completed a one‐day training event via Makaton at least 1 year before. Naturalistic observations were conducted for all participants to measure signing while supporting service users. Results: Experimental participants demonstrated fluency, emergent application, and maintenance of improvements. They also signed more than control participants when supporting clients. Conclusion: Precision Teaching can lead to increased usage of KWS under naturalistic conditions. However, training in isolation might be inadequate. Additional elements, such as practice leadership, are required.

Introduction: Outcomes for people with intellectual and developmental disabilities, particularly those with more severe and complex needs, depend on the quality of support they receive from staff. This paper explores staff perspectives on skilled support and relationships with training and experience. Methods: Questionnaires were received from 93 staff working in 28 supported accommodation services in which observations of the quality of support had also been conducted. Staff were asked about experience, training and views on skilled support. Content analysis was used to code written responses. Statistical analysis explored relationships between staff responses, and the quality of support was observed. Results: Staff perceived improving the quality of life of people they supported as key. All staff considered themselves as being at least partially skilled, with the majority associating being skilled with length of experience and attendance at training. Specific training was rarely mentioned, and receipt of training was not associated with the provision of better quality of support. Practice leadership was rarely mentioned. Conclusions: In most cases, staff showed awareness of the principles set out in policy, but their reflections did not match observed practice.

Background: Research concerning the impact of the COVID‐19 pandemic on the mental health and well‐being of adults with intellectual disabilities has been cross‐sectional and small scale. We examined the trajectory of mental health and well‐being across the pandemic period across the UK and the factors which predicted different mental health trajectories. Method: Adults with intellectual disabilities participated in co‐designed structured interviews. Four waves of data were collected between December 2020 and late 2022. At Wave 1, 621 adults with intellectual disabilities participated, with 355 at Wave 4. Well‐being, pandemic anxiety, depression, anxiety, anger and loneliness outcomes were measured. Latent class mixed modelling was used to identify subgroups and within‐group trajectories. Results: Well‐being and pandemic anxiety remained relatively stable across time, but levels of anger, depression, anxiety and loneliness reduced gradually over time. Overall patterns masked trajectory subgroups, with differences in intercept and steepness of decline or increase in mental health problems. Different factors were generally influential for trajectory class membership and overall change across time for outcomes. Leaving the house for exercise or green spaces reported increasing well‐being and reduced loneliness. Similarly, those working, volunteering or in education at Wave 1 were found to have increasing well‐being and reduced loneliness, sadness and worry, and increasing wellbeing and reducing anger if they were working pre‐pandemic. Conclusions: Social connection and engagement in purposeful activity were vital to maintaining the mental health and well‐being of people with intellectual disabilities. Factors that were found to reduce mental well‐being during the pandemic should be considered in planning for future major public health challenges and in promoting better mental well‐being for people with intellectual disabilities in everyday life.

Background: Overmedication of adults with intellectual (learning) disabilities, particularly the off‐licence use of psychotropic medicines for behaviours that challenge in the absence of a psychiatric disorder, is a major public health concern and an example of health inequalities. In the United Kingdom, we coproduced online training resources backed up by face‐to‐face training for support staff (direct care workers) called SPECTROM involving all stakeholders, including adults with intellectual disabilities and their families, to help reduce the overmedication and implement NHS England's STOMP initiative.Method: In a feasibility cluster randomised controlled trial, we trained service managers and support staff using two core modules of SPECTROM, namely, (a) Medicine/STOMP and (b) Alternatives to Medicine (ATM) using an online platform. These two core modules introduced 12 other modules and other online resources. We assessed trainees' knowledge of psychotropic medicines using the Psychotropic Knowledge Questionnaire‐Revised (PKQ‐R) and their attitude to behaviours that challenge using the Management of Aggression and Violence Attitude Scale‐Revised‐Intellectual Disabilities (MAVAS‐R‐ID) using a pre–post training design.Results: The research team delivered SPECTROM training to 18 service managers and 122 support staff. Of the 140 trainees, 126 completed PKQ‐R at baseline before and within 4 weeks after the training. There was a post‐training improvement in PKQ‐R scores in 42 of the 43 questions (97.7%), 22 of which were statistically significant differences (p < 0.001). The MAVAS‐R‐ID was completed at baseline and within 4 weeks of training by 125 trainees. The MAVAS‐R‐ID total score showed statistically significant post‐training improvements (p < 0.01). Individual domain score analysis showed a statistically significant improvement in one of the five domains related to attitude regarding the use of medicine for behaviours that challenge.Conclusions: The SPECTROM training seems to improve staff knowledge of psychotropic medicine, at least in the short‐term, and attitude towards behaviours that challenge, particularly concerning the use of psychotropic medicine.