We chose to respond to this paper because bad things are happening in health care for people with intellectual disabilities. We met with Chris Hatton, one of the authors of the article. There were things we liked about the article, things we liked about the study that were not in the article and things we asked Chris about. We enjoyed talking to Chris about the study and writing our response.
Inclusive research is widely accepted as an essential part of the process to democratise knowledge creation and dissemination. However, while peer review is an important part of academic publishing, the potential to include people with learning disabilities in this element of the research process has not previously been explored using a deliberative approach.
Accessibility adaptations were made to the citizens' jury approach enabling people with learning disabilities to participate. Sixteen adults with mild to moderate learning disabilities were recruited to participate in the adapted citizens' jury. Jury members took part in capacity-building workshops to develop their knowledge of research and research processes. Six expert witnesses presented evidence to the citizens' jury and were questioned on aspects of inclusive research, representation, peer review and academic publishing processes. Facilitators supported citizens' jury members to reflect on the evidence presented and to develop recommendations for inclusive peer review.
The citizens' jury was an effective inclusive research approach in this case. Jurors made recommendations related to the question of inclusive peer review: inclusive reviews should be done by groups rather than individuals; the research under review must be in accessible formats and on relevant topics; reviewers need sufficient time to conduct reviews; and diverse groups of people with learning disabilities should be involved.
People with learning disabilities appreciate the importance of peer review but do not necessarily want to participate in it. This jury suggested creative approaches to disseminating, reviewing and engaging with research, including building more opportunities for dialogue between researchers and self-advocates. The adapted citizens' jury was a novel and effective method of supporting deliberation on this topic but other approaches to including the views and experiences of those with more severe learning disabilities should be explored.
Coproduction is a fast-developing approach to patient involvement. It entails health and social care services users working as equals in partnership with providers and other public institutions to produce novel research and information, usually aimed at the improvement of service planning and delivery.
This paper presents two real-life examples of attempted coproduction with a group of men with learning disabilities in England. The first case study concerns the piloting and assessment of a ‘user-friendly’ version of a local authority's ‘vision statement’. The second explores an attempt to secure funding to develop and evaluate a community intervention with and for people with learning disabilities.
Together, these portraits capture two important and intertwined problems that afflict the field of coproduction: namely, the drive to create fast results and the challenges of time and resource allocation that service users and professionals face whenever they attempt to coproduce work in a meaningful way.
The paper concludes with some suggestions for how policy and practice might seek to address these issues in the future.
People with intellectual disabilities living in group homes often have complex health needs, are high health service users and need support from their service provider to access health services. In Australia, little is known about the types and amounts of these supports.
A case study was conducted on a large Western Australian disability provider of group homes to 160 people with intellectual disability. Over an 18-month period, including during the COVID-19 pandemic, the study quantified health service use in hospital- and community-based settings, ways by which the person was supported to access health care and the impact on other people supported by the provider. Economic costs of supporting access to health services were estimated.
Overall, the disability provider supported 160 people in accessing health services an average of 23 times each (n = 3617, median = 20, interquartile range = 10–33) over the 18 months. Support included staff attending with the person (96%), following up with guardian/decision-maker (50%), additional resourcing via overtime or staff backfills (6%) and transport (94%). The average cost of supporting one health visit was estimated at $78.51 AUD (2021). Impact on the person's household included loss of opportunity for housemates (30%), reduced supervision within the home (79%) and longer timeframes to complete care needs (32%). The impact of COVID-19 restrictions saw a reduction in allied and mental health service use that did not return to prepandemic levels following the cessation of restrictions. Primary care, specialist, outpatient, pathology and emergency service use was also lower in the postrestriction period compared to the prepandemic period.
For people living in group homes, the disability provider plays an essential role in supporting health service access, primarily through the provision of support staff and transport. The change in health service utilisation following the COVID-19 restriction period indicates that altered health system priorities can potentially exacerbate access inequality for people with intellectual disability.
Mothers with learning disabilities are at higher risk of child removal and mental health difficulties and may face more barriers to developing attachment relationships with their children. Mothers with learning disabilities' voices are still underrepresented in research, with less known about those who are actively parenting their children. This study aimed to explore mothers' perceptions of developing emotional relationships with their children.
Mothers with learning disabilities who were actively parenting were recruited via advocacy groups across the United Kingdom. Semi-structured interviews with 10 mothers who self-identified as having learning disabilities were analysed using thematic analysis.
Three key themes were generated: (1) Understanding and Facilitating Attachment Relationships, (2) Barriers to the Attachment Relationship and (3) Bidirectional Nature of Relationships: Child Needs Mother, Mother Needs Child. Overarching experiences of powerlessness, autonomy and resilience were prominent across mothers' experiences.
Mothers acknowledged the importance of close emotional relationships with their children. Subthemes highlighted that mothers recognised the importance of behaviours that mirrored attachment theory, including reciprocity and proximity seeking. Mother–child relationships faced varying challenges including separation and conflict between the mother's and the child's needs. Findings indicate the need to support mothers through a trauma-informed attachment perspective, especially in the context of maternal mental health needs and where children may also have additional needs.
People with intellectual disability often present atypically for various health conditions, making it challenging to identify concerns, particularly when communication challenges are also considered. Additionally, they may face barriers to healthcare access, resulting in many conditions going unnoticed. Health screening inequities are also evident in this population, and osteoporosis, a silent condition often only diagnosed postfracture, requires screening; however, if this does not happen, it may result in unnecessary fracture. Therefore the aim of this study is to identify predictors of osteoporosis in older adults with intellectual disability and examine potential inequity in the diagnosis of the condition.
The study used data from the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA). Bone quality was measured using quantitative ultrasound (QUS). Logistic regression was performed to identify significant predictors of poor bone quality, including chronic health conditions, dietary intake, medication use and activity levels.
Out of 575 participants who completed QUS, osteoporosis prevalence was objectively measured at 41%, with a further 33.2% measured within the osteopenic range, but less than 2 in 10 had a doctor's diagnosis of osteoporosis. Reported Dual-Energy X-ray Absorptiometry screening uptake was low at 18.2%. Three major predictor variables of osteoporosis and osteopenia were found significant: difficulty walking 100 yards, taking antiepileptic drugs medicines and taking proton pump inhibitors. The model achieved an overall classification accuracy of 70.8% for osteopenia and 72.5% for identifying osteoporosis.
The study highlights the different risk factors in people with intellectual disability, the potential for missed diagnoses and the likelihood there is inadequate screening. There is an urgent need for robust risk assessment and reasonable adjustments to ensure equitable screening and targeted preventive strategies. Clinicians must consider specific concerns for this population to avoid missed diagnoses and reduce the adverse effects of osteoporosis/osteopenia, such as an increased risk of fragility fractures.
People with severe learning disabilities and complex needs are more likely to experience delayed discharge from hospital; however, there is little research into their experience in hospital and as they move out as part of the Transforming Care Programme.
Six family members of people with complex needs who had moved out of hospital took part in four focus groups co-facilitated with an expert-by-experience consultant. Participants' relatives had hospital admissions that ranged from 6 weeks to 11 years. Transcripts were analysed using reflexive thematic analysis. Additional reflections are included from an expert-by-experience consultant to capture their unique perspective.
Family members reported stories of abuse in hospital and parallel experiences of institutionalisation and trauma, resulting in long-lasting impacts on themselves and their relative. Family members felt let down and undervalued by professionals. They described relief when their relatives moved out of hospital, but there were on-going difficulties accessing the right support in the community and so stability felt fragile.
Key recommendations to support community living include respecting family members' expertise, improving partnership working and offering psychological support for family members and people with complex needs post-discharge.
Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. The Social Ecological Model (SEM) was used to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England, UK.
The findings from a qualitative systematic review and a Q methodology study were triangulated. Framework analysis, in line with the SEM, was used to develop an integrated set of findings.
Women with learning disabilities may lack knowledge of cancer symptoms, and cancer screening, as well as being scared about the process and getting the results. The attitudes of family and paid carers towards screening may influence women with learning disabilities' decisions as to whether screening is seen as favourable; support and training may ensure unbiased perspectives. Barriers were also associated with how cancer screening programmes are designed, such as postal invitations which assumes an ability to read. In addition, screening staff need to be aware of the general needs of people with learning disabilities, such as the benefits of easy-to-read documents. Lastly, multidisciplinary working is required so reasonable adjustments can be embedded into cancer screening pathways.
This article highlights multiple methods to reduce the inequalities faced by women with learning disabilities, which can be achieved through reasonable adjustments. Embedding reasonable adjustments can support women with learning disabilities in making an informed decision and accessing screening if they choose to. This may result in women with learning disabilities getting a timely cancer diagnosis.
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