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

Research to have on your radar: February

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This article summarises some key pieces of research in the learning disability and autism field over recent months. This includes studies on experiences in long-stay hospital settings, obtaining Education, Health and Care Plans, staff communication interventions and healthcare inequalities.

Widespread frustration among staff and patients in long-stay hospital settings

People with learning disabilities and/or autistic people in long-stay hospital settings face multiple barriers to leaving hospital and feel that hospital environments are not conducive to getting/staying well, according to a new study.

The study aimed to better understand the experiences of people in hospital and is one of the first to engage directly with people in hospital, their families and frontline staff.

It included 27 people in hospital, their families, health and social care staff and commissioners. The researchers conducted a literature review and interviewed the participants. They also held focus groups with hospital staff, social workers, advocates and care providers, and looked at information from case files and observed multidisciplinary meetings.

The study found that patients and their families reported widespread frustration and struggled to overcome the inertia built into our current systems and processes.

Frontline staff were equally frustrated about the ‘complex and dysfunctional system’ which they find almost impossible to navigate. They reported difficulty in discharging people into community services, while community services felt there was a lack of knowledge about what is possible to achieve in the community.

Participants reported that hospital staff from different professional backgrounds do not have a shared sense of how many people really need to be in hospital or how many people could be cared for in different settings. This suggests that different definitions, world views and professional judgements might be at play, according to the researchers.

The researchers have used this knowledge to create practice guides and training materials to support new understandings and ways of working. This includes 10 ‘top tips’ for helping people come out of long-stay hospitals. These take the key themes from this research, but they have been turned into direct, tangible statements and pointers for future practice.

The ‘top tips’ will be sent to every health and social care leader in England. The researchers will also provide other formats including an easy-read version, an accessible video, and a free training video for care staff who might struggle to access training budgets.

two people walking down hospital corridor towards exit

Struggles to obtain ECH Plans leave mothers feeling ‘isolated, anxious and hopeless’

Mothers of autistic children find the process of obtaining an Education, Health and Care Plan (EHCP) ‘intimidating’ and ‘overwhelmingly difficult’, according to new research.

Research on this subject is limited, so the researchers set out to interview people with lived experience of obtaining an EHCP and the barriers they faced.

Six mothers (aged between 31 and 44) of autistic children (aged between 6 and 15) were interviewed about their EHCP experiences.

A reflexive thematic analysis resulted in the following themes:

  • Barriers for accessing educational support: All the participants said their child’s school struggled to support their child. This resulted in heightened distress for the child, compounded by masking their autism at school. Mothers believed teachers blamed or judged them for their child’s needs.
  • The process of obtaining an EHCP: All mothers faced many barriers during the EHCP process, which ultimately necessitated gaining knowledge of SEN and EHCP processes from external sources.
  • Impact on mothers: Mothers repeatedly reported how stressful accessing an EHCP for their child was. The fight for support drained all available resources implicating a sense of unshakeable battle fatigue and ‘insurmountable’ defeat. There was a sense of isolation and loneliness and concern for their child’s future.
  • Trying to find glimmers of hope: Some mothers identified ‘glimmers of hope’, such as pockets of dedication and support from teachers. They also felt hopeful that an ECHP might enable their child to better manage mainstream education. One mother said her life was ‘much easier’ since they got the plan.

Ultimately, struggles trying to obtain and navigate the ECHP process left mothers feeling isolated, anxious and hopeless, alongside a sense that the systems set up to help were found to work against them.

The authors of the study say a streamlined national and regional service could more effectively manage, educate and allocate provision for SEN within mainstream settings.

Stakeholders should include parents, SEN teachers, medical specialists with expertise in complex medical conditions associated with autism, local support groups, policy makers, and supportive organizations specialising in SEN law.

They concluded: “Ultimately, we need the humanity and collective action to manage autism more effectively in mainstream settings, to enable children to live and flourish with their condition and vicariously support parental wellbeing.”

“For autistic children to access the benefits of mainstream education, wider systemic changes are urgently needed. This would also vicariously support parental wellbeing,” they added.

Stressed woman working at computer

Do staff training interventions improve communication skills in people with PMLD?

A study looking at staff training interventions to improve communication skills in people with Profound and Multiple Learning Disabilities (PMLD) has found “tentative support” that these interventions are effective.

The researchers conducted a systematic literature review to identify the extent to which staff training interventions are successful in enhancing the development of communication skills in people with PMLD.

While they found some improvements in communication skills across the study, the researchers say there is still “insufficient evidence” that changes in staff behaviour as a result of staff training are linked to positive changes in the communication and/or social interaction of people with PMLD.

The review included 13 studies published between 1991 and 2018 which met the inclusion and exclusion criteria. The studies were conducted in the UK, Australia, USA, Sweden, the Netherlands and Belgium.

The studies were conducted at settings including mainstream and special schools, day services, residential services (including supported community group homes), medium and large residential settings and parental homes.

Objectives of the studies varied: 10 aimed to facilitate change in both staff and people with profound intellectual and multiple disabilities, one focused solely on change in staff and two focused primarily on people with profound intellectual and multiple disabilities. Staff participants in the studies reviewed included teachers, school support assistants, direct care staff and staff in health-related professions.

A positive impact of the training on staff was reported in all but two of the papers, neither of which reported information on the impact on staff. In only six cases, however, were any of the changes in staff behaviour statistically significant.

For people with PMLD, positive impact was found in all but three of the studies (one did not report outcomes and two found inconsistent changes). Positive changes included:

  • Improved alertness
  • Improved communicative interaction
  • Improved engagement
  • More time spent awake
  • Increased happiness scores
  • Increased social behaviour
  • Decreases in periods of no interactive behaviour.

Some studies, however, showed no statistically significant improvements. The authors of the study say it is difficult to measure outcomes of changes in communication and interaction in people with profound intellectual and multiple disabilities. This is because change is often small, difficult to detect or measure and slow to occur.

For this reason, they conclude that, alongside more sensitive measurement tools, there is a need for future longitudinal research to identify meaningful change over time for this population and those who support them.

“We recommend that funding should be available for well-designed quasi-experimental studies in order to identify those staff-training programmes which result in long-term ongoing change for both staff and people with profound intellectual and multiple disabilities,” they said.

Supporting people with learning disabilities

Large gaps in HIV care for people with learning disabilities and autism

Researchers are urging health leaders to ensure people with learning disabilities are receiving proper care when it comes to HIV testing, treatment and education.

This comes after an American study found that people with learning disabilities and co-occurring autism are far less likely than the general population to receive treatment for HIV.

Researchers at the University of Michigan Health conducted one of the largest epidemiological studies of individuals with intellectual and developmental disabilities to closely examine where the gaps in HIV care lie.

People with a learning disability and co-occurring autism as well as Black people with intellectual and developmental disabilities received worse care outcomes across the board. The researchers say this is because they are not tested as often for HIV and do not always receive HIV-related treatment.

Tyler G. James, PhD, an assistant professor of family medicine at U-M Medical School and lead author on the study said this is because there is a “large misunderstanding” that patients with learning disabilities are “asexual and therefore do not require HIV testing or education.”

“This is not true, and not providing proper treatment for this population leads to increases in patients with HIV and the spread of HIV,” he said.

The study found that people with intellectual disabilities were more likely to receive a HIV diagnosis but less likely to receive antiretroviral therapy if they had co-occurring serious mental illness or a substance use disorder.

Furthermore, only 54% of autistic adults with co-occurring intellectual disabilities and HIV received antiretroviral therapy, well below the national goal of 95%.

Mr James and his team say they want to use this research to spark a ‘national conversation’ about how to ensure patients with intellectual disabilities and other populations that are underserved are receiving proper care when it comes to HIV testing, treatment and education.

“The more we can expose how ableism works itself into our healthcare, the better we can change to improve healthcare for all patients,” he said.

“For people with intellectual disabilities, we want you to know that your experiences are seen, and it is important to continue to advocate for yourself and your sexual health. We are advocating with you.”

Doctor with a stethoscope in the hands on hospital background

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