Daniel Sutherland

Background: People with intellectual disabilities (referred to as learning disabilities in the UK) face considerable health inequalities. One attempt to address these in England has been through incentivising general practices to complete annual health checks with people with a learning disability aged ≥14 years. Aim: To examine recent trends in learning disability registers and the uptake of learning disability annual health checks in England. Design and setting: Secondary analysis of publicly available general practice data. Method: NHS England data relating to the learning disabilities annual health check scheme from January 2022 to November 2025 were compiled and analysed. Results: The number of 14–17-year-olds and adults on learning disability registers increased during this period by 30.49% and 14.53%, respectively. The most recent estimates indicate that around 0.588% ( n = 374 763/63 766 671) of patients are on learning disability registers, with approximately 0.526% ( n = 335 102/63 654 156) aged ≥14 years and eligible for annual health checks. The uptake of annual health checks increased slightly from 68.08% ( n = 15 940/23 414) to 71.58% ( n = 19 217/26 846) among 14–17-year-olds, and from 79.07% ( n = 226 701/286 714) to 80.71% ( n = 248 449/307 827) among adults. Uptake was lowest in the South West and East of England, and highest in London, but was similar across deciles of patient deprivation and practice size. Conclusion: Ascertainment of people with a learning disability by primary care services appears to be improving but remains between one-quarter and one-third of prevalence estimates. The uptake of annual health checks among 14–17-year-olds continues to lag behind that of adults.

Background Families of children with intellectual disabilities often experience increased adversity. Despite this, parent-reported data suggest that these families experience significant barriers in accessing appropriate supports. Less research has characterised what service providers offer to families. Understanding usual support for these families is important when considering comparators in evaluation research. This study aimed to describe support as usual, in terms of parenting, family, and sibling intervention support, for families of children with intellectual disabilities as reported by professionals and service providers to inform the design of future research trialling new parenting and sibling interventions, respectively. Methods Data on supports available to parents, siblings, and young carers, were extracted from the Local Offer websites of 100 randomly selected English Local Authorities. Survey data were also collected from 66 professionals, either working in UK Local Authority services and/or services commissioned by Local Authorities, about what programmes or interventions are currently offered to parents of children with intellectual disabilities. Data were analysed using content analysis and descriptive statistics. Results A wide range of support programmes or interventions were described as being available to parents of children with intellectual disabilities, with most primarily designed for parents of non-disabled children or parents of children generally with special educational needs and disabilities. Data extracted from Local Offer websites led to the identification of six broad categories of programmes for parents; relatively few Local Authorities provided supports for siblings or young carers. Conclusion Our findings offer researchers and professionals insights into usual support offered by Local Authorities to families of children with intellectual disabilities. Future research may draw upon these findings when designing evaluations of health and social care interventions in the UK. Additional research is needed to examine the relationship between what might be on offer for families in theory and what they are able to access.

Background Families of children with intellectual disabilities often experience increased adversity. Despite this, parent-reported data suggest that these families experience significant barriers in accessing appropriate supports. Less research has characterised what service providers offer to families. Understanding usual support for these families is important when considering comparators in evaluation research. This study aimed to describe support as usual, in terms of parenting, family, and sibling intervention support, for families of children with intellectual disabilities as reported by professionals and service providers to inform the design of future research trialling new parenting and sibling interventions, respectively. Methods Data on supports available to parents, siblings, and young carers, were extracted from the Local Offer websites of 100 randomly selected English Local Authorities. Survey data were also collected from 66 professionals, either working in UK Local Authority services and/or services commissioned by Local Authorities, about what programmes or interventions are currently offered to parents of children with intellectual disabilities. Data were analysed using content analysis and descriptive statistics. Results A wide range of support programmes or interventions were described as being available to parents of children with intellectual disabilities, with most primarily designed for parents of non-disabled children or parents of children generally with special educational needs and disabilities. Data extracted from Local Offer websites led to the identification of six broad categories of programmes for parents; relatively few Local Authorities provided supports for siblings or young carers. Conclusion Our findings offer researchers and professionals insights into usual support offered by Local Authorities to families of children with intellectual disabilities. Future research may draw upon these findings when designing evaluations of health and social care interventions in the UK. Additional research is needed to examine the relationship between what might be on offer for families in theory and what they are able to access.

Background Families of children with intellectual disabilities often experience increased adversity and inequalities. Despite this, parent-reported data suggest that these families experience significant barriers in accessing appropriate supports. Less research has characterised what service providers offer to families. Understanding usual support for these families is important when considering comparators in evaluation research. The purpose of the current study was to describe support as usual for families of children with intellectual disabilities as reported by professionals and service providers. Methods Data on supports available to parents, siblings, and young carers, were extracted from the Local Offer websites of 100 randomly selected Local Authorities in England. Survey data were also collected from 66 professionals, either working in UK Local Authority services and/or services commissioned by Local Authorities, about what programmes and/or interventions are currently offered to parents of children with intellectual disabilities. Data were analysed and summarised using content analysis and descriptive statistics. Results A wide range of support programmes and/or interventions were described as being available to parents of children with intellectual disabilities. Most supports available were primarily designed for parents of non-disabled children or parents of children generally with special educational needs and disabilities. Data extracted from Local Offer websites led to the identification of six broad categories of programmes for parents; relatively few Local Authorities provided supports available for siblings or young carers. Conclusion Our findings offer researchers and professionals (e.g., practitioners, commissioners) insights into usual support offered by Local Authorities to families of children with intellectual disabilities. Future research may draw upon these findings when designing evaluations of health and social care interventions in the UK. Additional research is also needed in terms of the relationship between what might be on offer for families in theory and what they are actually able to access.

Mothers of children with intellectual disabilities are more likely to show elevated psychological distress, with child behavioural and emotional problems being a significant risk factor. Family Resilience Theory suggests that family relationships are crucial in influencing adaptation to stressors. We investigated whether family functioning mediates or moderates the relationship between child behavioural and emotional problems and subsequent maternal psychological distress. We conducted mediation and moderation analyses on data from 324 mothers of children with intellectual disabilities in a United Kingdom (UK) prospective longitudinal cohort study. Family functioning had a small mediating effect on the relationship between child behavioural and emotional problems and subsequent maternal psychological distress. Family functioning did not moderate the relationship between child behavioural and emotional problems and later maternal psychological distress. The mechanism of the effect of child behavioural and emotional problems on maternal mental health may at least partially involve changes in family functioning.

Background: This review aimed to synthesise the literature about interventions for parents of adolescents with intellectual disability, including parental experience of receiving interventions and intervention effectiveness.Methods: Eligible interventions aimed to improve parenting skills and/or parent–adolescent relationships, adolescent behavioural/emotional problems and/or parent well‐being. ASSIA, EMBASE, Medline, PsycINFO and Web of Science were last searched on 11 July 2024. The TIDieR checklist and the MMAT were used for quality appraisal. A narrative synthesis was conducted. (Pre‐registration: PROSPERO CRD42022384409).Results: Twelve studies with 1041 families were included. Intervention descriptions were detailed; however, study quality was mixed. Nearly all studies reported the intervention was associated with positive effects on parenting, parent–adolescent relationships, adolescent behaviour/emotional problems or parent well‐being. Three randomised controlled trials (RCTs) offer the strongest evidence but are limited in quality. All studies investigating parent experiences reported positive responses.Conclusions: High‐quality studies (e.g., RCTs) are needed to enable conclusions about efficacy and effectiveness.

Background: Family members of children with developmental disabilities on average report poorer family functioning and mental health. Positive Family Connections is a co‐produced, positively‐oriented, family‐systems support programme for families of children with developmental disabilities aged 8–13. We investigated experiences of Positive Family Connections, and the processes involved in change.Method: We conducted semi‐structured interviews with eight family carers who took part in Positive Family Connections and nine facilitators. Data were analysed using framework analysis.Results: Programme recipients' and facilitators generally reported positive experiences of Positive Family Connections and described beneficial effects on wellbeing and family relationships. We developed a model showing how the lived experience of facilitators and positive approach led to reductions in isolation and perceived changes in mindset that were described as improving family carers' wellbeing and family relationships.Conclusions: Positive Family Connections appears to be an acceptable programme which programme recipients and facilitators perceive to be beneficial.

Introduction: Preterm birth (+0/7 –36 ^+6/7 gestational weeks) comprising over 80% of all preterm births. Despite the frequency, MLPT births represent only a small fraction of prematurity research, with research exploring the parental experiences of having a child born MLPT particularly neglected. It is vital this perspective is considered to provide appropriate grounding for future research and service provision. Methods: Six mothers from the UK of infants (aged between 18 and 36 months) born MLPT were invited to take part in a semistructured qualitative interview study. Reflexive thematic analysis was employed to explore the data and codes were then conceptualised through a process of inductive reasoning to identify patterns of meaning. Results: Five themes are presented that are conceptualised from the data: (1) the moderate or later preterm ‘label—does it matter?, (2) vulnerability within a new role, (3) coming home and wanting to start ‘normal’ life, (4) comparisons to provide a reference to experiences and (5) experience of professionals throughout the pregnancy, newborn and early years journey. Conclusions: Findings offer in-depth evidence surrounding mothers’ experiences of healthcare throughout pregnancy and immediately after birth, perceptions of the ‘preterm’ label and thoughts on how mothers reflect on their experiences. Future research should show an awareness of the broader family context when interpreting findings and providing suggestions for future research avenues or service provision.

Positive Family Connections is a coproduced, positively oriented, family-systems program for families of children with a developmental disability aged 8-13 years. The study was a feasibility cluster randomized-controlled trial which was registered prospectively (International Standard Randomised Controlled Trial Number 14809884). Families (clusters) were randomized 1:1 to take part in Positive Family Connections immediately or to a waitlist condition and were followed up 4 months and 9 months after randomization. Feasibility outcomes included participant and facilitator recruitment rates, retention, intervention adherence, and fidelity. The proposed primary outcome measure was the family APGAR, a measure of family functioning. Quantitative data were analyzed using multilevel modeling. Sixty families (60 primary parental carers and 13 second carers) were randomized. 73.33% of primary parental carers and 71.43% of second carers in the intervention group attended ≥ 4 intervention sessions, and fidelity of delivery was high (M = 94.02% intervention components delivered). Retention for the proposed primary outcome was 97.26% at 4-month follow-up and 98.63% at 9-month follow-up. Intervention condition was not associated with family APGAR scores at 9-month follow-up (estimate = 0.06, 95% CI [-0.49, 0.61], p = .86, Hedges' g = 0.03, 95% CI [-0.43, 0.49]). However, meaningful improvements were observed for other secondary outcomes related to parental well-being and family relationships. A definitive randomized-controlled trial of Positive Family Connections is feasible. Preliminary evaluation of outcomes shows that Positive Family Connections may be beneficial for parental psychological well-being and family relationships. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Background: Family‐systems interventions have been proposed as one way of supporting families of people with an intellectual disability (ID) or who are autistic. This systematic review aimed to summarise what family‐systems interventions have been studied with this population, what evidence there is for their effectiveness and families' experiences of the interventions.Methods: The review was preregistered on PROSPERO (CRD42022297516). We searched five electronic databases, identified 6908 records and screened 72 full texts. Study quality was evaluated using the Mixed Methods Appraisal Tool, and a narrative synthesis was used.Results: We identified 13 eligible articles with 292 participating families. Most studies reported positive effects of the interventions on wellbeing and family relationships, and families reported positive experiences. However, research quality was poor and there are no any sufficiently powered randomised controlled trials demonstrating family‐systems interventions' effectiveness for this population.Conclusions: There is a need for higher‐quality research to establish whether family‐systems interventions are beneficial for families of people who have an ID or who are autistic.