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.

Objective To explore the challenges experienced by people with intellectual disability, their carers and health and social care professionals when using and managing medication.Design A synthesis of qualitative research using meta-ethnography.Data source We searched seven databases: MEDLINE, Embase, CINAHL, Science, Social Science and Conference Proceedings Citation Indices (Web of Science), Cochrane Library, PsycINFO and Proquest Dissertations and Theses from inception to September 2022 (updated in July 2023).Eligibility criteria for selecting studies We included studies exploring the challenges and perceptions of people with intellectual disability, their carers and health and social care professionals regarding medication management and use.Results We reviewed 7593 abstracts and 475 full texts, resulting in 45 included papers. Four major themes were identified: (1) Medication-related issues, (2) navigating autonomy and relationships, (3) knowledge and training needs and (4) inequalities in the healthcare system. We formulated a conceptual framework centred around people with intellectual disability and described the interconnectedness between them, their carers and health and social care professionals in the process of managing and using medication. We identified challenges that could be associated with the person, the medication and/or the context, along with a lack of understanding of these challenges and a lack of capability or resources to tackle them. We developed an overarching concept of ‘collective collaboration’ as a potential solution to prevent or mitigate problems related to medication use in people with intellectual disability.Conclusions The effective management of medication for people with intellectual disability requires a collaborative and holistic approach. By fostering person-centred care and shared decision-making, providing educational and practical support, and nurturing strong relationships between all partners involved to form a collective collaboration surrounding people with intellectual disability, improved medication adherence and optimised therapeutic outcomes can be achieved.PROSPERO registration number CRD42022362903.

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.

BackgroundMothers 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.MethodWe conducted mediation and moderation analyses on data from 324 mothers of children with intellectual disabilities in a United Kingdom (UK) prospective longitudinal cohort study.ResultsFamily 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.ConclusionsThe mechanism of the effect of child behavioural and emotional problems on maternal mental health may at least partially involve changes in family functioning.

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 (<37 gestational weeks) accounts for an increasing proportion of global births each year, with moderately or late preterm birth (MLPT) (32(+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.

Reading is an essential life skill that can lead to independence. However, many individuals with autism and/or intellectual disabilities find this skill difficult to acquire. Computer-assisted instruction (CAI) is one approach that combines recommended reading elements (e.g., phonics, fluency, and comprehension) with evidence-based teaching strategies to support the development of reading skills. The first aim of this systematic review (PROSPERO: CRD42021253686) was to identify CAI reading programs and their effectiveness for individuals with autism and/or intellectual disability. A second aim was to evaluate the views and experiences of those with autism and/or intellectual disability, their teachers, and other stakeholders about CAI reading programs. Electronic searches of 7 databases identified a total of 3539 records for review, with 262 full-text articles evaluated, and 47 papers included in the review for data extraction and quality appraisal. The review identified both single-component and multicomponent CAI reading programs that were commercially available interventions (e.g., Headsprout©, ABRACADABRA) and bespoke interventions (e.g., personalized e-books). Thirty-four of the 47 studies reported positive outcomes in terms of effectiveness. However, the quality of these studies was often poor, and the description of the interventions was often limited (e.g., rationale for the intervention, who delivered it and how), leading to concerns about the rigor of the evidence base. Stakeholders’ views and experiences were reported in half of the evaluated studies. CAI reading programs were reported as enjoyable and easy to use. They were considered effective by the stakeholders. Further research is needed to develop and explore the effectiveness of CAI reading interventions using rigorous study designs, so that individuals with autism and/or intellectual disability can be provided with access to a wider range of evidence-based reading programs.

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.

Purpose This paper aims to outline the process of developing a new co-produced virtual group support programme called Positive Family Connections (PFC) aimed at family carers of children with a learning disability, or who are autistic, aged between 8 and 13 years. Design/methodology/approach Development process: family carers were recruited to develop PFC prior to a feasibility randomised controlled trial being conducted (not reported in this paper). The programme was positively oriented and family systems-focused. PFC was developed by family carers, along with the research team, and designed to be delivered by family carer facilitators. The development process included several meetings to design the format and content of the programme. An initial pilot was then delivered and further amendments made to the programme in response to the pilot participants’ feedback. Findings The programme: the co-produced PFC programme involved attending six weekly sessions on Zoom; each 2-h session focused on different themes (e.g. communication and activities). Research limitations/implications Reflections on the co-production process: key ingredients of co-production included ensuring clarity on roles, positive communication and understanding of the family carers’ situation and utilising the varied skills family carers can bring to research and practise. Originality/value This is the first family systems-focused programme that the authors know of, that has been co-produced with family carers and solely delivered virtually by trained family carer facilitators from the outset.

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.

Background Sleep disorders are common in people with intellectual disability (ID) and autism, with growing evidence of diverse sleep profiles across ID associated genetic syndromes. Documenting the prevalence and profile of specific sleep disorders in syndromes will quantify syndrome-driven ‘risk’, inform prognosis and enhance understanding of aetiology of sleep disorders. Method Following PRISMA guidelines for meta-analysis, we searched Ovid PsycINFO, Ovid MEDLINE, Ovid Embase, Web of Science and PubMed Central with use of syndrome-specific keywords and 60 sleep-related search terms. We screened and extracted papers that reported sleep disorder prevalence data for five or more individuals within a genetic syndrome, and applied quality criteria to produce a quality-effects prevalence model of six types of sleep disorder across nineteen syndromes. Relative risk estimates were calculated for the prevalence of each sleep disorder in each syndrome. Results Two hundred and seventy three papers were identified, generating 463 prevalence estimates for Angelman, CHARGE, Cornelia de Lange, Down, fragile X, Prader–Willi, Rett, Smith–Magenis and Williams syndromes, mucopolysaccharidoses (MPS disorders), neurofibromatosis and tuberous sclerosis complex. Prevalence estimates were higher in genetic syndromes than published equivalents for typically developing individuals, with few exceptions. Between-syndrome differences for some disorders were evident; sleep-disordered breathing was most prevalent in MPS disorders (72–77%), while excessive daytime sleepiness was highest in Smith–Magenis syndrome (60%). Conversely, insomnia, which was reported at a higher rate than TD estimates in all syndromes except fragile X, was not associated with specific genetic risk. This suggests insomnia could emerge because of the individual’s environment or associated developmental delay, rather than any specific genetic syndromes. Limitations Due to the broad scope of the meta-analysis, only syndromes previously identified as reporting preliminary sleep research were included. Other syndromes may also experience elevated prevalence rates of specific types of sleep disorder. Only English language papers were included. Conclusions Differing prevalence rates between types of sleep disorder suggest differing causal mechanisms, such as cranio-facial morphology in Down and Prader–Willi syndromes and the build-up of mucopolysaccharides in MPS disorders. Priorities for clinical assessment and intervention for sleep disorders are discussed.

Introduction Preterm birth (<37 weeks) adversely affects development in behavioural, cognitive and mental health domains. Heightened rates of autism are identified in preterm populations, indicating that prematurity may confer an increased likelihood of adverse neurodevelopmental outcomes. The present meta-analysis aims to synthesise existing literature and calculate pooled prevalence estimates for rates of autism characteristics in preterm populations. Methods Search terms were generated from inspection of relevant high-impact papers and a recent meta-analysis. Five databases were searched from database creation until December 2020 with PRISMA guidelines followed throughout. Results 10,900 papers were retrieved, with 52 papers included in the final analyses, further classified by assessment method (screening tools N =30, diagnostic assessment N =29). Pooled prevalence estimates for autism in preterm samples was 20% when using screening tools and 6% when using diagnostic assessments. The odds of an autism diagnosis were 3.3 times higher in individuals born preterm than in the general population. Conclusions The pooled prevalence estimate of autism characteristics in individuals born preterm is considerably higher than in the general population. Findings highlight the clinical need to provide further monitoring and support for individuals born preterm.