Learning Disability Today
Supporting professionals working in learning disability and autism services

Research to have on your radar: March

This article summarises some key pieces of research in the learning disability and autism field over recent months. This includes studies on cancer screening, frailty tools, menstruation advice and renting a house.

New interventions needed to manage frailty in people with a learning disability

People with intellectual disabilities may experience frailty earlier than the general population, according to new research.

The review published in Journal of Applied Research in Intellectual Disabilities (JARID)  aimed to investigate how frailty is defined, assessed, and managed in adults with an intellectual disability; factors associated with frailty; and the potential impact of Covid-19 on frailty identification and management.

Databases were searched from January 2016 to July 2023 for studies that investigated frailty in individuals with intellectual disabilities. Twenty studies met the inclusion criteria. Frailty prevalence varied between 9% and 84%. Greater severity of intellectual disability, presence of Down syndrome, older age, polypharmacy, and group home living were associated with frailty. Multiagency working, trusted relationships and provision of evidence-based information may all be beneficial in frailty management.

The review concluded that frailty is common for people with intellectual disabilities and is best identified with measures specifically designed for this population. Future research should evaluate interventions to manage frailty and improve lives.

Reasonable adjustments needed to help women with a learning disability get a timely cancer diagnosis

Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population, according to a new study.

Published in the British Journal of Learning Disabilities, the research found that 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. Therefore, support and training is needed to 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.

The study used the Social Ecological Model (SEM) to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England, UK.

This research 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.


More research needed on menstruation and learning disability

New research shows that there are multiple gaps in research and practice to support girls and women with learning disabilities about menstruation and there is need for improved access to peer support, resources and training that take a life course approach.

The study published in British Journal of Learning Disabilities was a two-part scoping exercise to explore what is known about this topic from a life course perspective, beginning pre-menarche and extending to post-menopause support. This combined a rapid scoping review of the literature since 1980 with a stakeholder consultation where people with learning disabilities, family carers, advocacy groups and staff working across education, health and social care were invited to share their experiences of menstruation support.

It found that more research is needed, especially for women with profound and multiple learning disabilities and women from minority ethnic communities.


Martina Gomez

Renting and people with a learning disability

A new research paper points to the possible benefits of a greater focus on renting for people with learning disabilities.

This article, published in British Journal of Learning Disabilities, reviews the findings from a major research study looking at the rented housing sector for people with learning disabilities. The study comprised of a review of local authority learning disability strategies; a ‘national conversation’ with key stakeholders; and thirty‐five, qualitative interviews with people with learning disabilities who rent their own homes.

It found that local learning disability strategies are lacking in information on rented housing for people. A national consultation identified a range of challenges in accessing rented housing for people wishing to do so.

Interviews with people with learning disabilities renting their own place confirmed some of these problems but also, crucially, highlighted the success for most who rented their own home. People liked renting and were managing their tenancies well with relatively modest support.

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