Learning Disabled Adults Research Articles

Adapting the EQ-5D-3L for adults with mild to moderate learning disabilities

BackgroundApproximately 1.5 million adults in the UK have a learning disability. The difference between age at death for this group and the general population is 26 years for females and 22 years for males. The NHS Long Term Plan (January 2019) recognises learning disabilities as a clinical priority area. People with a learning disability are often excluded from research by design or lack of reasonable adjustments, and self-reported health status/health-related quality of life questionnaires such as the EQ-5D are often not appropriate for this population. Here, we systematically examine the EQ-5D-3L (its wording, content, and format) using qualitative methods to inform the adaption of the measure for use with adults with mild to moderate learning disabilities.MethodsThink-aloud interviews with carers/advocates of learning-disabled adults were undertaken to explore the difficulties with completing the EQ-5D-3L. Alternative wording, language, structure, and images were developed using focus groups, stakeholder reference groups, and an expert panel. Data analysis followed a framework method.ResultsThe dimensions and levels within the EQ-5D-3L were deemed appropriate for adults with mild to moderate learning disabilities. Consensus on wording, structure, and images was reached through an iterative process, and an adapted version of the EQ-5D-3L was finalised.ConclusionThe EQ-5D-3L adapted for adults with mild to moderate intellectual/learning disabilities can facilitate measurement of self-reported health status. Research is underway to assess the potential use of the adaptation for economic evaluation.

Evaluating the nutrition and body mass index clinical link pathway in mental health and learning disability services: A mixed-methods study.

This research involved an evaluation of the Nutrition and Body Mass Index Clinical Link Pathway (NBMI CLiP) implemented in practice across Severe Mental Illness and/or learning disabilities ward in Tees, Esk and Wear Valleys NHS Foundation Trust (TEWV), to understand how the NBMI CLiP is used, inpatient staff feedback on the CLiP for supporting service users to manage their weight, and whether using the NBMI CLiP impacted on staffs' own weight management. To account for the uneven distribution of the secondary data, descriptive statistics such as medians and the inter-quartile range were conducted to assess anychanges in recording of Body Mass Index, nutrition screening (SANSI) and intervention planss. Staff survey data investigated barriers and facilitators to using the NBMI CLiP in practice and the impact on their own weight management. Secondary data analysis found most wards improved recording of BMI, SANSI and Intervention Planning. Forensic Learning Disabilities, Adult Learning Disabilities, mixed gender wards and North Yorkshire and York Operational Directorate indicated the greatest improvement. Survey results (n = 55) found three times as many participants (n = 12, 75%) found the NBMI CLiP easy or very easy to use; most fully understood it (n = 13, 81.20%) and were confident or very confident to carry out a SANSI Screen (n = 14, 87.50%) or a recovery focused intervention plan (n = 9, 56.20%). Open-text responses, analysed using content analysis, indicated a need for further training of staff on the NBMI CLiP. It is recommended that to support weight management across these wards, that a nudge or choice architecture approach to weight management is adopted, supported by training delivered by a dietitian.

Scales and size-quality outcomes in adult learning disability residential care: evidence from the UK.

Residential care services are under increasing pressure to lower service provision costs while maintaining quality of care. Using a translog cost function, this paper examines the relationship between cost, quality and output in England's learning disability (LD) residential care sector. It finds genuine but diminishing economies of scale in LD residential care services vis-à-vis output (i.e., care weeks). However, some variation exists: higher-quality LD residential care homes appear to have larger economies of scale than lower-quality ones. Supplementary regression analysis, examining quality-size, further finds quality (a) is negatively associated with LD care homes of six or fewer beds; (b) shows no association with homes of more than six beds. These findings enhance residential care literature and raise the possibility that, by promoting the establishment of larger high-quality care homes, cost savings may be achieved without sacrificing quality.

Exploring the perspectives of parents on their child’s transition into adult learning disability services

Transition from child to adult services can be a particularly challenging time for people with learning disabilities and their parents. This article details a literature review that was undertaken to identify, critically appraise and thematically synthesise findings of UK qualitative studies exploring parents’ perspectives of their child’s transition into adult learning disability services. Findings from eight articles suggested that the transition process is emotional and challenging, with parents often reporting that they felt vulnerable and judged by adult service professionals. However, partnership working and enabling parents to offer their expertise as carers for their child can support improved transition outcomes.

Impact of COVID‐19 on rate of admissions in the Humber Teaching NHS Foundation Trust in Yorkshire

Impact of <scp>COVID</scp>‐19 on rate of admissions in the Humber Teaching <scp>NHS</scp> Foundation Trust in Yorkshire

The feasibility of a emotional regulation group conducted with virtual adaptations within an adult community learning disability service

Group-based interventions may be helpful for reducing psychological distress for adults with learning disabilities. The aim was to evaluate the group in terms of its feasibility and online adaptations from a service user and group facilitator perspective. A six-session group intervention was undertaken on three occasions. Thematic analysis of participant’s qualitative feedback identified two themes, ‘Enjoying attending the group’ and ‘Skills development’. Facilitators identified several positive aspects of the group. A paired-samples t-test identified no significant difference at post-intervention. The group demonstrated success in the overall feasibility of delivering a therapy group remotely.

Expressive touch in health and social care: A review of touch guidance to explore the extent to which social and communication needs of adults with learning disabilities are considered

AbstractBackgroundPeople with a learning disability can present with complex physical and social needs, and sometimes rely on touch for communication. Historically, touch‐related staff guidance has been described as risk‐averse, lacking an evidence base, control‐orientated and potentially harmful. This project reviews local touch‐related guidance from adult learning disability services, exploring the extent to which they consider the social and communication needs of service users.MethodsFive touch‐related guidance documents were analysed using a summative content analysis. Counts of relevant search terms were analysed quantitatively. Extracts containing the search terms were then analysed qualitatively, to explore their context.FindingsConsiderable variation was noted between the guidance documents. All the documents discuss communication within the context of touch, although to varying extents. The analysis highlighted a focus on safety and risk within most documents, however, some documents also demonstrated encouragement of positive risk management and the safe use of touch.ConclusionsWhile this study has identified several positive aspects of the guidance documents, these helpful recommendations and arguments appear inconsistently within individual documents. Services should work towards developing guidance that consistently considers practical steps to reduce risk and facilitate the safe and effective use of expressive touch cross‐service. Further research into current practice relating to expressive touch is indicated.

Improving access to Hackney Integrated Learning Disability Service

AimsImproving access to Hackney Integrated Learning Disability Service (ILDS) using quality improvement (QI) methodology by reducing the time taken to complete eligibility assessment by 50% by April 2021, while improving...

Developing a positive behaviour support pathway within an adult community learning disability service

Developing a positive behaviour support pathway within an adult community learning disability service

A Quality Improvement Project (QIP) Within the Bolton Learning Disability (LD) Team (Greater Manchester Mental Health Trust) Aiming to Enhance Communication Among Multi-Disciplinary Team (MDT) Professionals and Wider Stakeholders, for the Purposes of Enhanced Care Delivery and Improved Patient Outcomes During COVID-19 pandemic. Project Lead: Dr Syeda Hasan

AimsThis QIP aims to improve communication and information sharing between the community LD team, administration team, service providers and wider stakeholders, to ensure patient safety. The primary objective is to evaluate local initiatives to improve communication between MDT professionals and wider stakeholders. The secondary objective is to improve patient safety and staff satisfaction.MethodsThe COVID-19 pandemic created unprecedented communication challenges within the workforce and highlighted areas requiring review; this included information sharing among internal and external teams, collaborative teamworking, support in absence of senior clinical leadership and transition pathways from Child and Adolescent Mental Health Services to adult LD services. The QIP was initiated in March 2021.The discovery process included an initial consultation exploring practitioners’ experiences, areas for development and to share ideas for good practice.We used QI methodology, following ‘plan-do-study-action’ cycles, to analyse change. Change ideas included a single point of contact for internal and external queries, regular complex case management meetings, development of a referral process and clinical review for complex cases along with teaching sessions.Qualitative feedback from the team pre- and post-intervention, at baseline and regular follow-up intervals, in the form of monthly team meetings, emails, focus-groups and semi-structured interviews.ResultsA full thematic map was created after initial consultation; themes included communication improvement between teams and external agencies, timely support for complex case management, improving transition processes and development of robust clinical review processes.Qualitative feedback has been collated, analysed and final recommendations to be shared with the MDT professionalsConclusionPreliminary results have shown improvements in communication among the MDT, stakeholders, and external agencies.The consultation process highlighted that there is a substantial need for standardisation and consistency within communicative practices to promote enhanced care delivery and improved patient outcomes.

Adapted\xa0remote\xa0cognitive behavioural therapy for comfort eating with a woman with intellectual disabilities: Case report

BackgroundDiagnostic overshadowing can prevent the treatment of comfort eating in people with intellectual disabilities, and the published literature contains few therapeutic examples. This case study reports a relatively novel, promising, and accessible, remote cognitive behavioural intervention.Case presentationThis case study documents a therapeutic intervention for comfort eating with a client, Sarah, in a National Health Service adult Community Learning Disabilities Service. Sarah is a white, British woman in her late thirties, with a diagnosis of Down syndrome who experienced significant problems with comfort eating and subsequent weight management. Despite dieting and exercising, Sarah was clinically obese and experienced weight related pain and psychological distress. Systemic intervention between Sarah, her mother, and the therapist formulated Sarah’s eating difficulties using a cognitive behavioural framework. This hypothesised how comfort-eating met her emotional needs and maintained her health difficulties. Remote cognitive behavioural therapy interventions included collaborative behavioural experiments, coping strategies, and homework tasks.ConclusionsThe Maslow Assessment of Needs Scale-Learning Disabilities, Glasgow Depression Scale for people with a Learning Disability, Glasgow Anxiety Scale for people with an Intellectual Disability, qualitative feedback from family, as well as frequency data showed significant improvement. Additionally, the case considers the evidence base, assessment, formulation and intervention, before reflecting on its various strengths and limitations. It reflects on the intersectionality of sexuality and intellectual disabilities, and the desire for romantic attachment, which was additionally complicated by the context of coronavirus and social isolation. The environmental influences on comfort eating regarding this case, and in general, the experiences of people with intellectual disabilities are also considered. The potential clinical impact of this case study includes exemplifying an effective comfort eating therapeutic intervention in an often overlooked client group.

An exploration of the Personal Relationship Advisory Group in a community learning disability service: A service development project

Accessible summary The project aimed to explore discussions from the Personal Relationship Advisory Group (PRAG) meetings in a community adult learning disability team to influence the development of new relationship resources. All meeting minutes within a 12‐month period were analysed to find themes. The themes suggest the importance of the service looking at the whole person, such as their physical, emotional and social well‐being, when there are relationship concerns. New resources that focus on personal sexuality, different types of relationships and Internet safety may be of benefit to the service. Resources for carers may also be useful, such as helping carers to support people with learning disabilities to safely access relationships online. AbstractBackgroundAdults with learning disabilities often face barriers when accessing relationships and can require additional support. The Personal Relationship Advisory Group (PRAG) is a provision in a community learning disability service in North England, which offers multidisciplinary advice regarding relationship concerns. The current project aimed to identify common themes within PRAG to influence the development of new resources in the service.Materials and MethodsAll meeting minutes within a 12‐month period were analysed using thematic analysis. There were a total of 16 minutes, which discussed 11 people with learning disabilities. This included six females and five males with a mean age of 30 (SD = 14.97).ResultsIndividuals often had limited opportunity to develop relationships. There was a lack of understanding of sex and of how to behave appropriately in different types of relationships, with a need for individualised, accessible education. The Internet was commonly used to seek relationships, with many concerns regarding safety from carers or family. There were some unhelpful responses from others, such as the implementing of restrictions. Factors that may have an impact on the person's overall well‐being, such as their health, social issues and trauma, were often discussed.ConclusionsThe identified themes suggest the need for the service to take a holistic, biopsychosocial and individualised approach when supporting individuals with any relationship concerns. A multidisciplinary approach and collaboration with the individual and family/carers is key. It may be useful for the service to develop resources on topics such as personal sexuality, different types of relationships and Internet safety. Carer‐specific resources would also be beneficial, such as advice on how to safely support individuals to seek relationships on the Internet.

The ‘Amber Consultation Service’: An audit of a systemic consultation service in a Community Learning Disability Team

This article describes an audit of ‘The Amber Consultation Service’; a systemic consultation service developed by the Psychology and Behaviour Support team in the Manchester Community Adult Learning Disability Service. We consider the feasibility and effectiveness of this service.

Factors predicting staff interest in conducting research in learning disability teams

Research in learning disability teams is crucial to ensure effective and high-quality care. This article details a service evaluation that aimed to assess the relationship between staff interest and staff involvement in research. It also aimed to investigate whether staff interest can be predicted by three other factors that affect engagement in research – support, confidence and time. A ten-item survey about research attitudes was distributed to 154 staff members in five adult learning disability teams based in the community in one NHS trust, and 80 of these staff members responded. An exploratory groupwise t-test found that staff interest in conducting research is significantly related to staff involvement in research, with those involved reporting more interest. Regression modelling found that confidence was the sole predictor of interest in research; therefore, future studies could examine the role of staff confidence in developing interest in research. Further studies are required to understand how to increase research activity in learning disability services.

The monitoring and use of Pro re nata (PRN) psychotropic medication for people with learning disabilities on an inpatient ward

AimsThis project was designed to evaluate the use of PRN medication and PRN monitoring charts on an adult learning disability ward. These charts had been designed by the trust to provide us with a way of monitoring the use of psychotropic PRN medication to ensure monitoring of treatment response, physical health and side effects.MethodThe data were collected from PRN monitoring charts, electronic case notes and electronic prescribing chart records for all patients on an adult learning disability inpatient unit. The sample consisted of 7 patients who had been prescribed and/or received PRN psychotropic medication over a five week period. Quantitative data were derived by simple calculation for the total amount of PRN medication used and number of PRN monitoring charts completed. Qualitative data were collected of prescription charts and PRN protocols which is supposed to guide treatment.ResultOut of all the incidences where PRN medication was administered, only 64% of monitoring charts were completed. Out of the 7 patients on the ward, 6 had PRN protocol charts and for only 5 patients these were followed.ConclusionClinical practice must be improved. The results were presented to ward staff and doctors to discuss the implications for patient care and ways to improve clinical practice by ensuring full monitoring of the use of PRN medication to help reduce the overmedication of people with learning disability by improving the use of the PRN charts. NICE guidelines and The Royal College of Psychiatrists have published guidelines on the prescription of psychotropic drugs for people with learning disabilities. NHS England have also published an article to discourage over-medication of people with learning disabilities. There is a risk that doctors are prescribing medication to treat behaviour that is an expression of distress or a mode of communication rather than a mental disorder. Doctors have a responsibility to ensure they have fully assessed the person's potential to benefit from medication before they prescribe. The audit would serve to provide a baseline for this team prior to any audits in the future.

Transfer and transition referrals of patients with intellectual disability from children's services to adult community learning disability teams

AimsThe audit aimed to assess if patients under the care of children's services in Wessex were transferred at the appropriate age and whether transition referrals to Community Learning Disability teams (CTLD) occurred timely. It also aimed to look at how many patients underwent transitions in a three month period, and if their transition support plan (TSP) was completed. A transition support plan should include chronological information on psychopharmacology, psychotherapy, and social support measures. Patients should be referred between the ages of 17–19 but require a justification after 18 years of age.MethodThe BI team was contacted to provide all IDs for patients referred within a three month period between the ages of 17–19. The BI team provided 42 patients with their ID. Patients discharged from services within a short time span were excluded for the following reason: inappropriate referral (9pts), discharged after 1st assessment (6pts), internal discussion (6pts), only referred to Autism team (4pts), moved out of area (1pts). From the initial 42 patients, 16 patients were analysed using the collection tool.Result4/16 had a TSP, and only two had a complete TSP and transitioned in another trust and were inter-team referrals.CAMHS services referred 1/16 patients.Psychotropic medication was prescribed to 12/16 prior to or on time of referral, but only two patients had a complete psychotropic medication history.8/16 patients' referral was commenced prior to their 18th birthday, and no information was provided for delay in transfer.Health records did mention psychotherapy, but apart from 2/16 TSP records, no additional information was available on the modality.ConclusionPatients with Intellectual Disability face challenges when transferring from children to adult services. Insufficient referral information may have a detrimental impact on patients wellbeing and long-term care.Access to a patient's chronological journey through the different children's services allows Adult CTLD health professionals to provide effective care. Historical psycho-social and pharmacological interventions provide a reference point for future interventions.Concerns included: limited information on most TSP regarding psycho-social and psychotropic treatments, lack of access to CAMHS/CHYPS paperwork and ineffective inter-trust communication for transition patients.This project highlighted the average number of transition cases in 3 months. It led to changes to the transition pathway, as awareness was raised in trust and CCG meetings to improve patient outcome. CTLD created the new role of transition facilitators to support children's services. They sit in meetings before patients transition referrals.

Expanding: a case study exploring online work and relationship in one-to-one sessions in an adult learning disability service

ABSTRACT The Covid-19 pandemic has introduced changes to how clinical services are offered in some settings. dance movement psychotherapists have had to contend with their embodied modality being translated through a screen. This case study explores the shifts that working online allowed in the DMP process for a client with learning disabilities. Where working together in a shared physical space might have previously included the use of props to aid movement exploration and relationship building, online therapy offered the challenge of working together without props, and a new way of moving in relationship for the client.

Undergraduate nursing and midwifery student's attitudes to mental illness.

AimTo explore levels of stigma in students of all fields of nursing and midwifery at different years and examine the impact of exposure to people with mental illness.DesignA cross‐sectional survey was used.MethodsThe Community Attitudes to Mental Illness questionnaire was administered to all branches of student nurses (adult health, mental health, child health and learning disability) and midwives in all three years in one Higher Education Institution (HEI) in Scotland.ResultsMental health nursing students scored significantly better on all stigma subscales. Stigma worsened with a little professional exposure to people with mental illness but then improved with increasing exposure. Both personal exposure and professional exposure to people with mental illness change perceptions. The professional results follow a J‐curve. Current plans for cross‐field experience involving short or virtual placements during student nurse training are likely to worsen stigma rather than improve it.

Can sensory integration have a role in multi‐element behavioural intervention? An evaluation of factors associated with the management of challenging behaviour in community adult learning disability services

Accessible summary Sensory integration is about how our brain receives and processes information so we can make sense of our everyday life. Behavioural interventions is a term used to describe how to teach people to increase useful behaviours or decrease behaviours that are challenging. Some people with severe learning disabilities can have behaviour that challenges and this can be difficult to manage. To manage behaviours that challenge restrictive interventions have been used such as people being given medication, or being held by others against their will. Instead of using these restrictive interventions we can use sensory strategies and a low stimulus environment which have been found to be successful in managing behaviours that challenge. AbstractIntroductionAdults with complex needs and severe learning disability present as a serious management problem within the community. Restrictive interventions are often used to manage adults with these issues, even though best practice recommends the use of positive behaviour support. Positive behaviour support involves functional analysis, but it does not specifically focus on sensory integration difficulties as a contributing factor to challenging behaviour.MethodsA systematic search of the literature was completed using a range of electronic databases, an electronic search, hand search and review of reference lists. Seven relevant studies were identified. These studies were critically appraised and analysed. However, the extent of research was limited and the procedural quality variable, some distinct themes, arose.ResultsOut of the seven intervention studies included in this review, two studies used sensory integration therapy, three employed multi‐element behavioural intervention, one utilised environmental stimulation within a multifactor behavioural intervention approach and one used sensory strategies within a structured behavioural intervention programme. The participants across the final seven papers reviewed consisted mainly of males with a high incidence of participants presenting with ASD. A range of assessment tools and outcome measures were used.ConclusionsThe use of restrictive intervention is still an issue in practice. Nearly all the studies reviewed stressed the issue of placing individuals with severe challenging behaviour in the community. Behavioural studies have successfully utilised sensory integration strategies within a structured behavioural format to manage challenging behaviour in a community setting for adults with a learning disability.

Adult learning disabilities

People with a learning disability (LD) find it harder to learn certain life skills. The problems experienced vary from person to person, but may include learning new things, communication, managing money, reading, writing and personal care. Evidence indicates that people with LDs have poorer health than people without a LD, and have differences in health status that are, to an extent, avoidable. The health inequalities faced by people with LDs in the UK usually start early in life, and often result from barriers to access of timely, appropriate and effective healthcare. It is, therefore, essential at annual checks to opportunistically screen and holistically manage health inequalities. LD is a priority in the National Health Service’s Long Term Plan. Although a LD (depending upon severity) generally becomes apparent in early childhood, this article focuses on LDs in adults. LD and ‘intellectual disability’ are terms used interchangeably and recognised by the Mental Health Foundation.