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A recent public health strategy published by the Department of Health, Social Services & Public Safety entitled ‘Fit and Well – Changing Lives (2012-2022)’ has shown that people with a learning disability represent one of the most vulnerable and disadvantaged groups in Northern Ireland (NI).
In fact evidence shows that those with a learning disability across the UK are more likely to experience major illnesses, to develop them earlier, and die of them sooner than the population as a whole. Furthermore, even with such a worrying health profile, the learning disability population is less likely to get some of the evidence-based annual health checks and treatments they need, and continue to face real barriers in accessing services.
Most alarming however is the apparent invisibility of this population. Evidence suggests that such inequity often exists and persists among this population because they remain unseen.
A multi-disciplinary team comprising SDAI funded academic researchers from Ulster University, world leading learning disability researchers form University of Bristol, and the Learning Disabilities Observatory Team, Public Health England and senior representatives from the Public Health Agencg, the Health and Social Care Trusts, the voluntary sector (ARC, Positive Futures) and a learning disability service user group (COMPASS) aim to exploit, link and maximise the use of existing NI administrative data to:
(i) begin to expose, exploit and explore learning disability records wherever they reside in existing Northern Irish administrative datasets;
(ii) begin to consider best practice in, and strategize for, the future recording and identification of in learning disability NI;
(iii) formulate guidelines to tailor, target and implement support for individuals with learning disability across NI; and
(iv) establish an administrative data evidence base upon which to build future research, facilitate future data sharing and enable ongoing action to reduce the health inequalities faced by the learning disability population in NI.
ESRC, £153,000. 2017 – 2019. PI Dr J Murphy, Ulster University, Co-PIs Dr L Taggart & Dr Lisa Hanna-Trainor, Ulster University.
Approximately 17% of adults with intellectual disabilities (constitute approximately 1% of the population) living in the community present with serious challenging behaviour. As many as 100,000 are estimated to be at risk of admission due to challenging behaviour and failure of community services to manage them.
There are ongoing concerns that these individuals are subject to increased rates of hospitalisation, unnecessary long term use of psychotropic medication, poorer health, abuse and exclusion. Intensive Support Teams (IST) have been recommended as a way of providing high quality responsive care aiming at avoiding unnecessary admissions or reducing inpatient length of stay.
However, there is little information to recommend a preferred IST model and there has not been any comprehensive attempt to describe IST outcomes. Commissioners require clear information about what works in order to fund appropriate services.
NG11 (NICE, 2016) reports the state of evidence thus: It is widely recognised that locally accessible care settings could be beneficial and could reduce costs but there is no strong empirical evidence to support this.
1. To create a typology of IST currently operating in England;
2. To generate evidence on the effectiveness of different IST models which best support improved outcomes for adults with challenging behaviour;
3. To estimate the costs of different IST models and investigate cost effectiveness;
4. To understand how the IST impact on the lives of adults with intellectual disabilities and challenging behaviour, their families and the local services; 5. To generate evidence to inform and support decision making on commissioning IST for adults with intellectual disabilities and challenging behaviour.
The proposed study has two phases:
Phase 1 includes a national survey in England of ISTs which leads to the typology of IST models. Service managers of community intellectual disability teams will be approached to first identify whether they have such a service locally and then a piloted and refined survey will be carried out. Outputs include mapping and distribution of ISTs in England; description of ISTs' organisation and service delivery; and a typology of IST service models.
Phase 2 includes a mixed methods evaluation of up to 4 IST models. We will collect both patient level outcomes at 3 assessment points (baseline and 9 months) and service level outcomes over 9 months. Statistical analysis will compare outcomes across ISTs and identify which are most associated with positive outcomes (e.g. reduced challenging behaviour). The costs of delivering the different models will be calculated and compared across all models. We will collect qualitative data to understand the impact of the different models, and the experiences and views of key stakeholders.
NIHR HTA, £780,000. 2017 – 2020. PI Prof A Hassiotis, University College London, Co-PI Dr L Taggart, Ulster University
As people with intellectual disabilities are living longer they are therefore more likely to develop age-related health conditions, this includes T2D. Further, this group of individuals are also more likely to develop T2D as they have a higher incidence of obesity.
Prevalence figures for diabetes in this population are estimated to be some 2-3 times higher than the general population.
The aim of this research was to evaluate strategies that can facilitate the self-management of T2D through the development and testing of DESMOND for adults with intellectual disabilities.
This programme of research was conducted in three stages:
(1) adaptation of a widely used DESMOND education programme to enhance its suitability for those with intellectual disabilities and their carers;
(2) examining the psychosocial (i.e. quality of life, beliefs about diabetes, impact of diabetes) and self-management strategies (i.e. diet, activity, smoking) and their adaptation to those with intellectual disabilities; and
(3) conducting an exploratory trial to test the feasibility of using an adapted DESMOND programme among people with intellectual disabilities and their carers. Parallel information from a key carer will also be obtained in order to evaluate the carer’s knowledge, perceived self-efficacy and responsibility in supporting the person with intellectual disabilities in her/his diabetes care.
Diabetes UK, £291,678. 2012 – 2016. PI Dr L Taggart. RA Dr M Truesdale.
The aim of the study was to determine the most appropriate support services (notably day activity/leisure, respite, domiciliary care) for an older intellectual disabilities population, and their family carers, to facilitate the transition into old age.
This was a four stage study.
Stage 1 comprised a series of focus groups with older people with intellectual disabilities asking them how they would like to spend their day and leisure time. Similar groups were conducted with family carers.
Stage 2 involved a series of 1-1 structured interviews with care managers and social workers from both intellectual disabilities and older persons care programmes regarding current and future provision.
Stage 3 involved gathering data on a quota sample of older people with intellectual disabilities and family carers as to their current service usage and likely future needs/preferences.
Stage 4 used a consensus building process to bring together various stakeholders who had participated in the previous three stages of the project to develop service specifications designed to meet the identified needs of older persons with intellectual disabilities and their ageing family carers.
RDO Bamford Award, £297,756. PI Dr L Taggart, 2013-2017. RA Dr L Hanna-Trainor.
The proposed research question was: “What are the key factors in residential facilities that prevent hospital admission for people with intellectual disabilities and challenging behaviours/mental health problems, in comparison to similar facilities from which people are admitted to hospital? Past research suggests that staffing issues are a major influence.
The proposed research had two stages. Stage one was a natural experiment that compared residential staff for people admitted to hospital because of their challenging behaviours/mental health problems (control group) with the intervention group being matched by staff who support clients in their residences without the need for hospital admission. Stage two involved qualitative interviews with 40-45 service users, staff and family members from all HSC Trusts in NI along with 15 participants drawn from effective residential settings in Camden and Islington Foundation Trust, London.
The aim was to gain deeper insights on what staff and service users experience as effective supports for people with challenging behaviours/mental health problems and to check convergent validity with stage one results.
RDO Bamford Award, £330,000. PI Prof O. Barr, 2013-2017. RA Dr E Gallagher.
People with intellectual disabilities may be at a greater risk for exposure to traumatic events and consequently develop Post-traumatic Stress Disorder (PTSD). However, this population is greatly under-serviced by intervention research. Although Eye Movement Desensitisation and Reprocessing (EMDR) is an established treatment for PTSD in the general population, research in this area for people with intellectual disabilities is limited.
This study examined how people with intellectual disabilities experience trauma; how psychological trauma presents itself in the intellectual disability population; profile the service provision for people with intellectual disabilities affected by trauma; and investigate the feasibility of delivering EMDR as a therapy to this population and use this evidence to design a model of service delivery.
RDO, £47,500. PI Dr L Taggart, 2015-2016. RF Dr Maria Truesdale. The study is part of a larger Scottish study undertaken by Edinburgh Napier University, Scotland.
The Better Futures Project focused on the needs of the families where the carer(s) are over the age of 60. The Project sought to improve the families coping and resiliency skills to enable them to meet the current demands of caring. It specifically focuses on equipping the family with the knowledge, information and advice to facilitate the creation of plans to meet the needs of their loved ones in emergency situations and for the future when the carers are unable to care. The Better Futures Project has partnered with statutory, voluntary, community and university bodies which will form part of the governance arrangements for the Project. The Project was evaluated over three years by the Ulster University.
Big Lottery, Dr L Taggart. 2012-2016
This award supported a NI future planning programme to be adapted and delivered by frontline staff for older family carers.
The programme focused on six-key areas identified from previous NI research and consistent with the existing future planning programmes: clarifying your vision, relationship circles, housing, legal and financial advice, supported decision making and making a will.
The knowledge transfer team adapted the existing training manuals and resource materials as identified above to ensure a NI perspective was offered. The team provided a series of free educational and practical two-day workshops across the five H&SCT’s for professionals and mainstream older people services (i.e. team leaders, community nurses, social workers, etc.) and voluntary agencies who work with this population (i.e. ARC, Positive Futures, Mencap, Age NI and carers groups). These staff members were then able to work on a 1-1 basis or group format with the ageing family carers.
RDO Transfer Knowledge Scheme, £98,132. PI Dr L Taggart, 2013-2015. RA A Thompson
This study is a multi-phase mixed method study, designed using the MRC guidelines on developing complex interventions. Planning for this pilot study began with a systematic review of community-based exercise interventions, undertaken to bridge the gaps in current knowledge.
A qualitative study was also undertaken with adults with intellectual disabilities, fitness instructors who work with adults with intellectual disabilities, prospective gym buddies and fitness instructors with no experience working with the intellectual disability population.
This qualitative study helped to inform the design of a gym program utilising a gym buddy system, and highlighted the training needs of prospective gym buddies and fitness instructors.
This preparatory work influenced the development of the Gym Buds program, a 12-week community gym program for adults with intellectual disabilities and undergraduate student buddies from the Ulster University.
This cluster-randomised pilot study is investigating the effects of a peer-guided gym program when compared with a waiting list control group. Outcomes which are being measured include cardiovascular risk factors (blood glucose, triglycerides, cholesterol levels, BMI, waist circumference) as well as physical activity levels, physical fitness, social inclusion, life satisfaction and self-efficacy. A process evaluation of the pilot study will also be undertaken at its conclusion.
PhD student: Teresa Greene (f/t), DEL studentship, 2014-2017.
Randomised Controlled Trials (RCTs) are widely recognised as being the ‘Gold Standard’ source of evidence in healthcare provision. In spite of this, RCTs account for a very small percentage of research publications in the field of intellectual disabilities. Those RCTs that are conducted and reported in the literature are fraught with methodological challenges and shortcomings.
This situation contributes to a lack of a robust evidence base for many of the treatments and interventions provided to people with intellectual disabilities. If healthcare funders and commissioners are to provide effective interventions which address the substantial health inequalities faced by people with intellectual disabilities, then improvements to the evidence base in this field are urgently needed.
By combining evidence from the existing literature, interviews and a survey of international trials researchers, this project seeks to develop a toolkit of resources for prospective RCT researchers in the field of Intellectual Disabilities. The toolkit will map out the RCT pathway from design to completion, highlight potential methodological barriers and provide options for potential strategies to overcome the barriers.
PhD student:lhal (f/t), DEL studentship, 2015-18.
Over 80% of children with intellectual disabilities engage in levels of physical activity below the minimum recommended level of 60 minutes moderate to vigorous physical activity per day. Although the numerous health benefits of physical activity for children with intellectual disabilities are irrefutable, there remains a lack of accessible opportunities for this population to engage in. To date there have been no studies that explore the feasibility and effectiveness of a walking intervention in young people with intellectual disabilities. The purpose of this study is to develop and test a peer-led special school-based walking intervention for young people with intellectual disabilities.
A mixed methods study comprising 4 phases.
Phase 1 was a systematic review of the effectiveness of interventions in increasing objectively measured physical activity in young people with intellectual disabilities.
Phase 2 was a qualitative exploration of enablers, motivators and barriers to participating in a school-based walking intervention from the perspective of young people with intellectual disabilities, teachers, classroom assistants and principals. The themes identified from focus groups and interviews in phase 2 aided in the development of the intervention.
Phase 3 was a series of workshops with the same participants from phase 2. The aim of workshops was to further develop the walking intervention.
Phase 4 was a pilot feasibility study of a 16-week school-based walking intervention with pre and post measurement.
PhD student: nstone (f/t), DEL studentship, 2014-17.
Policy in Northern Ireland emphasises the need for services to tackle underachievement through early intervention and integrated care. Teams of healthcare professionals (speech and language therapists, occupational therapists, physiotherapists and behaviour specialists) work with mainstream schools to address barriers to learning.
Working memory (WM) is the ability to hold information in our minds. It is associated with attention, language, sensory and motor skills. Most WM research has focused on computerised training packages. The findings have been mixed and there are questions about whether consequent improvements in WM actually impact on children’s ability to pay attention in the classroom, or on their language and academic skills. There is a need to research non- computerised approaches where tasks are embedded within everyday educational activities.
The aim of this study is to develop a novel, school-based programme to support year one children with WM, attention and language skills. It will be unique as it will integrate many of the skills which are associated with WM and attention (language, sensory, motor and cognitive tasks).
A mixed methods, multi-phase study composed of 4 stages, based upon phases 1 and 2 of the MRC guidance. Stage 1: A systematic review of non-computerised WM interventions. Stage 2: Focus groups with health professionals, teachers and parents to explore the content and delivery methods of the programme in a preliminary form. Stage 3: Interactive workshops with a group of health professionals, teachers and parents to develop the programme. Stage 4: A pilot clustered randomised feasibility trial to assess the suitability of the programme for use in a large scale randomised controlled trial.
PhD student: rron (f/t), PHA RDD PhD Fellowship, 2016–19.
This project aims to create and test the face validity of an evidence-based online resource to support speech and language therapists’ (SLTs’) implementation of evidence-based practice in the clinical management of children with phonological speech sound disorders (SSD). The project is a mixed methods study with five stages:
PhD student: Hegarty, (f/t), DEL studentship, 2014-17.
This is a feasibility study that aims to assess the effectiveness of a heart rate variability biofeedback intervention in reducing mental health symptoms as indicated by anxiety, depression, attention problems, and behaviour problems in young people with autism aged 11-18.
PhD student:ulter (p/t), PHA RDD PhD Fellowship, 2013–18.
This study will assess the effects of a NI-based Train the Trainers Future Planning Programme on family carers of people with intellectual disabilities, in terms of a number of psychological measures, and will compare these with carers in a Scottish programme using a peer support model of future planning. The study will also explore how people with intellectual disabilities are involved in the decision making process about the development of their future plan as well as the views and experiences of the NI family carers, siblings and staff in relation to future planning.
PhD student: e Fitzpatrick (f/t), DEL studentship, 2013–17
This project focused on the physical and psychological benefits of physical activity in adolescents who have an intellectual disability. Baseline levels of physical activity, physical fitness, self-efficacy, self-esteem and self-determination will be measured in adolescents both with and without an intellectual disability. Then, measuring these outcomes in a longitudinal designed study, a group of adolescents without an intellectual disability who are taking part in the Duke of Edinburgh award scheme will be compared to a Duke of Edinburgh participating group of non-disabled adolescents and a control group of age matched peers with an intellectual disability who are not participating in the programme. Physical activity and fitness data were collected through the use of a purposefully designed study protocol that has been pilot tested as part of this project. This research investigated if the Duke of Edinburgh scheme facilitates enhancement in the areas of physical and psychological wellbeing.
Dr Ben Fitzpatrick (f/t), DEL studentship, 2012-2016
Gobally, government strategy recognises that parents of children with complex health needs experience additional demands and require support to maintain their wellbeing. Enhancing resilience provides a pathway to influence wellbeing. Currently there are no theoretically driven interventions targeting resilience in these parents. This study addresses this gap.
The aim of this study was to develop and validate an intervention to enhance resilience in parents of children with complex health needs.
A four stage study guided by the Medical Research Council’s (2008) framework.
Stage 1): a systematic review of current evidence relating to resilience theory and group interventions targeting resilience in this population;
stage 2): a qualitative study to inform the intervention’s design;
stage 3) development of the intervention;
stage 4) a qualitative study to face validate the intervention.
Nineteen parents and 22 healthcare professionals recruited from 2 Health and Social Care Trusts and one voluntary organisation in Northern Ireland participated in stages 2 and 4. Thematic content analysis was applied to data collected through interviews, focus groups and workshops.
Parent narratives aligned with resilience theories reflecting the demands experienced and the strategies used to offset demands.
Key themes included
Resilience theory provides a relevant framework to develop interventions to promote wellbeing. Assisting parents to navigate their world is a critical resilience enhancing process. Core professionals are well placed to assist families but require additional training.
Developing practitioner skills through the programme and integrating resilience enhancing activities into practice holds promise as a means of enhancing resilience capacity in these parents.
Dr Sharon McCloskey (f/t), PHA RDD Fellowship, 2013–2017
This study used a Heideggerian hermeneutic phenomenological method to investigate the experiences of people with intellectual disabilities.
The aims of the research were to explore the lived experiences and investigate the meaning(s) that people with intellectual disabilities construct of their experience in post-secondary and higher education in Ireland. Heideggerian hermeneutic phenomenology is not commonly used with this group of people and its application in this study has provided an opportunity to promote inclusion through the methodology and provide evidence of the current impact of inclusion from the perspectives of people with intellectual disabilities.
Dr Deirdre Corby, (p/t), self-funding, 2011-2016