Samantha Flynn

Objectives: Qualitative data about the experiences of family carers of people with intellectual and developmental disabilities participating in online mindfulness-based interventions are limited. We aimed to understand the perceived impacts of an online mindfulness programme for family carers of people with intellectual and developmental disabilities. Methods: Twenty-seven family carers (16 mothers, four fathers, five adult sisters, two adult brothers) of children and adults with intellectual and developmental disabilities were interviewed about their participation in an online mindfulness programme delivered with/without peer mentor telephone support. Interviews were recorded, transcribed verbatim, and data were analysed using reflexive thematic analysis. Results: Family carers were not always able to embed mindfulness practices in their lives, but adapted their learning to their needs, using mindfulness as a flexible tool. Perceived direct benefits included improved wellbeing and greater acceptance. Perceived indirect benefits to family and improved relationships were also described. A valued outcome for siblings was the acceptance of their caring role, whereas parents were more focussed on strategies to improve everyday lives. Conclusions: Differences in the way that mindfulness is approached may exist between sibling and parent carers, indicating that sibling experiences should be considered independently of other family carers in future research. These findings directly inform the planning of mindfulness support for families in practice.

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: The closeness of the parent–child relationship may be a crucial factor in the development of all children, including those with intellectual disabilities. Previous research has suggested that there may be subgroup trajectories of mother–child closeness in families of children with intellectual disabilities during childhood. Our aim was to examine whether potential subgroup trajectories of mother–child closeness in families of children with intellectual disabilities exist and what factors influence identified trajectories. Methods: Data from 353 maternal primary caregivers who took part in three waves of the 1000 Families Study, over the course of 8 years, were analysed using growth mixture modelling. Mother–child closeness was measured using the Child Parent Relationship Scale at all three waves. Time‐varying (maternal psychological distress, child behaviour and emotional problems, child prosocial behaviour) and time‐invariant (child's level of communication skills, autism diagnosis) correlates of class membership and within‐class trajectories were included in the analysis. Results: The findings suggested a single trajectory of mother–child closeness, with observed heterogeneity accounted for by the covariates. Mother–child closeness on average remained consistent over time. Maternal psychological distress and an autism diagnosis were generally associated with reduced levels of mother–child closeness. The child's level of communication skills and child prosocial behaviour were associated with increased levels of closeness over time. Child behaviour and emotional problems were not associated with mother–child closeness. Conclusion: Further research using larger longitudinal population datasets is needed to explore whether there may be distinct trajectories of mother–child closeness in families of children with intellectual disabilities. The current findings suggest that supports for mother–child relationships might be targeted in families of children with lower levels of communication or prosocial behaviour skills, an additional autism diagnosis and when mothers are experiencing higher levels of psychological distress.

Background: Children with intellectual disabilities display fewer prosocial behaviours and increased behavioural and emotional problems compared to children without intellectual disabilities. Mother–child closeness may be an important factor in improving behavioural and emotional outcomes in children with intellectual disabilities over time. We aimed to examine the covarying relationship between mother–child closeness and child externalising and internalising behaviour problems, and child prosocial behaviour, respectively, over time. Methods: Parallel process growth modelling was conducted using data from 353 maternal primary caregivers who took part in three waves of the 1000 Families Study. Mother–child closeness was measured at each wave using the Child–Parent Relationship Scale. Child behavioural and emotional outcomes were measured using the Strengths and Difficulties Questionnaire. We controlled for time‐varying and time‐invariant covariates including the child's level of communication skills, autism diagnosis, maternal psychological distress and family economic adversity. Results: The trajectory of mother–child closeness remained relatively stable across the three waves. After controlling for covariates, the trajectories of mother–child closeness and child prosocial behaviour significantly covaried. However, the trajectory of mother–child closeness did not significantly covary with the trajectory of either child internalising or externalising behaviour problems. Conclusion: Interventions aiming to improve child prosocial behaviour and/or mother–child closeness in families of children with intellectual disabilities may benefit from considering the relationship between mother–child closeness and child prosocial behaviour. Findings highlight the need for additional research to understand the relationship between these factors and further examine underlying individual differences in these families.

Background: Parental experiences of prenatal testing and receiving a Down syndrome diagnosis for their child are impacted by the quality of information and support available. We explored the care experiences of mothers living in Great Britain who received a prenatal or postnatal Down syndrome diagnosis. Method: Mothers ( N = 280) of children with Down syndrome born between 2019 and 2022 completed an online survey about being offered prenatal diagnostic testing and receiving a prenatal or postnatal diagnosis. Results: Qualitative findings underscored the impact of sensitive, supportive care and communication on participants' sense of autonomy and emotional adjustment. However, many participants felt information about Down syndrome was imbalanced, outdated, or insufficient. Some also reported feeling pressured to undergo diagnostic testing or pregnancy termination. Conclusions: The findings highlight the importance of communication that prioritises individual needs, and of ensuring healthcare professionals are equipped to support parents as they begin their parenting journey.

Background: There is promising evidence for the adaptation of online mindfulness interventions for parent carers of individuals with intellectual and developmental disabilities by including supplementary peer support sessions. However, there remain questions about wider implementation beyond the research setting and the inclusion of more diverse populations of family caregivers, including adult siblings and family carers who less typically receive support and are often under‐represented in research. Method: One hundred and one family carers ( n = 58 parents, n = 43 adult siblings) were provided with access to Be Mindful (an online mindfulness intervention) with additional telephone peer mentor support. Participants were asked to complete baseline and follow‐up questionnaires before and after the intervention in a pre‐post pre‐experimental design, and engagement with the intervention and peer support was examined. Results: Recruitment was successful in targeting more diverse groups, including adult siblings. Intervention completion was low overall ( n = 37). Parent and sibling carers made differing levels of progress with the intervention and peer support calls, although 81.8% of those who completed the intervention before the end of the project had also received all three support calls. Preliminary follow‐up data, though with low retention, indicated improvements in psychological wellbeing for family carers over time. Conclusions: The intervention and additional telephone‐guided support were received well by family carers of people with intellectual and developmental disabilities, although further work is needed to determine the feasibility of future implementation.

Children with intellectual disabilities often find acquiring age‐appropriate reading skills difficult. We evaluated the impact of a structured online reading intervention on the reading skills of children aged 5–11 years in special educational needs (SEN) schools in England. A two‐armed cluster randomised controlled trial (cRCT) compared Headsprout Early Reading® (HER®) with education as usual (EAU). Children completed the Dynamic Indicators of Basic Early Literacy Skills® measure online before randomisation and 1 year later. Fifty‐five SEN schools (382 children) were randomised to HER® or EAU. Children in HER® schools made no additional progress in reading, on average, compared to children in EAU schools (Hedges' g = −0.01, 95% CI [−0.28, 0.26]). HER® seemed to have a positive impact on oral reading fluency (IRR = 0.77, 95% CI [0.60, 0.98] SE = 0.1), but these data were only available for 55% of children. Intervention compliance was low, with only ten children completing ≥40% of HER®. HER® was not implemented as planned and attrition was relatively high in the intervention group, compared with EAU. It is therefore difficult to draw firm conclusions. We successfully recruited SEN schools and children, suggesting large‐scale RCTs in SEN schools may be feasible; however, challenges must first be overcome to ensure acceptable implementation. ISRCTN 46208295.

Prenatal screening for Down syndrome (DS) is offered to expectant parents receiving antenatal care in many countries, with an emphasis on providing parents with the opportunity to make informed choices about their pregnancy. We examined experiences of prenatal screening among mothers of children with DS living in England, Scotland, or Wales. Mothers ( N = 317) of a child with DS born between 2019 and 2022 responded to an online survey and answered closed and open‐ended questions about their experiences of being offered initial screening and non‐invasive prenatal testing, and of receiving screening results. The findings from quantitative and qualitative analyses indicated that while most mothers understood screening was optional, many accepted initial screening with little consideration and most perceived it as routine. Many mothers reported receiving insufficient information about DS and limited support to help them make sense of screening results. Many mothers reported that screening results were not presented neutrally, and some highlighted how communication which reflected negative attitudes or assumptions about DS was highly memorable and impactful. The importance of personalized discussion to support mothers' understanding of screening, and to legitimize the option of declining screening tests, is discussed. The findings highlight the importance of a neutral approach to the delivery of both higher and lower chance screening results and of welcoming a diversity of choices.

Background: This review explored (1) what digital psychological wellbeing interventions for family carers of people with intellectual and developmental disabilities were reported in the literature, (2) evidence about their effectiveness, (3) factors affecting their implementation and (4) experiences of family carers who attend them.Methods: Seven databases were searched using search terms related to intellectual and developmental disabilities, carer role, wellbeing and digital delivery formats. Data from 23 studies were synthesised narratively.Results: Identified interventions were categorised in five broad groups: mind–body, relaxation, mindfulness and acceptance; psychoeducation and support groups; positive thinking and self‐compassion; spiritual; and expressive writing. Only 43% of included studies met seven (100%) or six (85%) quality indicators based on the Mixed Methods Appraisal Tool.Conclusions: There is a developing literature on digital interventions for family carers of people with intellectual and developmental disabilities. Digital supports will likely become more important with continuing technological advances and increasing need.