Clinical letters to patients with intellectual disabilities after psychiatric review: A quality improvement project.

AIM: This Quality Improvement Project sought to improve communication between patients with intellectual disabilities and their psychiatrists by sharing medical information using an easy read letter format following psychiatric review. BACKGROUND: Writing directly to patients is in keeping with good medical practice. Previous studies have shown patients with intellectual disabilities prefer letters tailored to meet their needs. METHOD: An easy read letter was used by nine psychiatrists who handed them to 100 consecutive patients after review. Feedback of acceptability to patients was obtained using a three-item facial rating scale and the use of free text. Feedback of acceptability was obtained from participating psychiatrists. RESULTS: Patients found the easy read letter helpful and felt it should be used routinely. Psychiatrists felt this approach was beneficial as well as aiding patient understanding of review. CONCLUSIONS: The easy read letter was reported to improve communication following psychiatric review. Limitations are acknowledged but it is concluded that an easy read letter should be adopted as routine practice following psychiatric review, for people with intellectual disabilities.

Past, Present and Future: Perspectives on an Oral History of Intellectual Disability Nursing.

Thirty-one participants engaged in this oral history research study aimed at exploring the lived experience of intellectual disability nurses and healthcare assistants' knowledge of the trajectory of intellectual disability nursing over the last 30 years in the Republic of Ireland and England. This paper documents some of these experiences offering perspectives on intellectual disability nursing and what is important for the future. Findings from Ireland consider the nature of intellectual disability services and the registered nurse in intellectual disability. Findings from England focus on opportunities and restrictions in intellectual disability nursing, shared visions, the changing context within which work took place and also the internal and external supports that impacted their roles. It is evident that intellectual disability nurses must be responsive to the changing landscape of service provision and also the requirements for contemporary new roles to meet the changing needs of people with intellectual disabilities.

Giving voice to adults with intellectual disabilities and experience of mental ill-health: validity of a psychosocial approach.

BACKGROUND: Mental ill-health is more prevalent among adults with intellectual disabilities (ID) than in the wider population. An interest in the mental health needs of people with ID has developed in recent decades, which corresponds with implementation of the health and social policy of deinstitutionalisation. Much clinical and research activity has focused on how such mental health needs may be addressed. The literature indicates that the views of people with ID concerning their mental health care have received limited attention. AIM: To describe the adaption of a psychosocial research approach ( Hollway and Jefferson 2000 , 2013 ), and discuss the methodological challenges encountered in enabling adults with intellectual disabilities (ID) to express their views and be actively involved in producing knowledge about their experiences of care and support as service users with diagnosed mental health needs. DISCUSSION: A considerable advantage of the interview format of this psychosocial approach was the opportunities it afforded participants to recount their personal stories. This is contrary to the question-and-answer technique of interviewing, which can suppress the stories of interviewees. In such structured approaches, the interviewer establishes the boundaries and usually maintains control over the production of data. CONCLUSION: Undertaking two research interviews with participants, analysis of the entire material regarding individual participants, and undertaking comparative analysis of data relating to all participants provided a system for checking consistency. This approach therefore provides a valid method for enabling the participation of people with ID. IMPLICATIONS FOR PRACTICE: The approach used is congruent with the requirement for the subjectivities of researchers - and those being researched - to be acknowledged, which is central to disability research. It is also compatible with person-centred planning and coproduction, which are central to contemporary ID nursing practice.

Community intellectual disability nurses' public health roles in the United Kingdom: An exploratory documentary analysis.

The aim of this study was to explore how public health policy in the United Kingdom was reflected in community intellectual disability nurses' (CIDNs)' job descriptions and person's specifications. The role of CIDNs has evolved due to policy changes. As these roles evolve, job descriptions and person specifications are important in highlighting employer's expectations staff, priorities, and professional values of their employees. This study involved an exploratory documentary analysis of n = 203 CIDNs' job descriptions and person specifications in the context of role theory. The CIDNs' public health roles identified in this study are health education, health protection, health prevention, health surveillance, and health promotion. Key policies themes were intellectual disability health access, public health strategies, policy evaluation/redesign, and public health policy. There is a lack of public health role clarity and inconsistency in role expectations across organizational boundaries in the United Kingdom.

"Sometimes, it just stops me from doing anything": A qualitative exploration of epilepsy management in people with intellectual disabilities and their carers.

PURPOSE: Epilepsy affects 1 in 5 people with an intellectual disability (ID), but little is known about their experiences of living with epilepsy. A qualitative study was conducted to investigate the impact and management of epilepsy in people with ID. MATERIALS AND METHODS: People with epilepsy and ID and their carers were invited to take part in semi-structured interviews. Eleven participants with ID and their carers were interviewed together, one participant with ID and their carer were interviewed separately, two interviews took place with the participant with ID only, and one interview took place with the carer only. The interviews were transcribed verbatim, coded, and analyzed thematically (dual independent coding for 30% of the transcripts). RESULTS: Three themes emerged (participant characteristics, living with epilepsy, epilepsy management and information needs) which indicated the following: 1) diversity regarding health profiles, communication abilities, severity of epilepsy, perceived control of epilepsy, and support needs; 2) a reduction in severity and frequency of seizures for a sizeable proportion of participants through antiepileptic drugs; 3) the lifelong impact of epilepsy and related seizures on participants' activities and quality of life; 4) the perceived burden of epilepsy and difficulty managing the condition for a large proportion of participants; 5) high levels of satisfaction with epilepsy-related services and care; and 6) an overall lack of written accessible information about epilepsy. CONCLUSIONS: This study has highlighted a significant impact of epilepsy and related seizures on the daily lives and quality of life of people with ID. Although a sizeable proportion of participants and their carers considered their epilepsy to be well controlled, the majority reported difficulties managing epilepsy and minimizing its impact on their wellbeing. Excluding care staff and the support provided by epilepsy clinics, the participants had not accessed any adapted self-management or information resources about epilepsy.

Sequential multiple methods as a contemporary method in learning disability nursing practice research.

This paper explores and advocates the use of sequential multiple methods as a contemporary strategy for undertaking research. Sequential multiple methods involve the use of results obtained through one data collection method to determine the direction and implementation of subsequent stages of a research project (Morse, 1991; Morgan, 1998). This paper will also explore the significance of how triangulating research at the epistemological, theoretical and methodological levels could enhance research. Finally the paper evaluates the significance of sequential multiple method in learning disability nursing research practice.

The Valued People Project: users' views on learning disability nursing.

A well-educated and trained workforce is undoubtedly crucial to the development of quality care for people with learning disabilities. Notwithstanding this, and unsure as to the need to continue to commission educational programmes for one part of this workforce-pre-registration learning disability nursing-South Central Strategic Health Authority commissioned the Valued People Project to undertake a detailed strategic review of educational commissioning, along with a review of the specialist learning disability health workforce more generally. This project has recently been completed, and provides a unique evidence-based expert evaluation of the future strategic direction of education commissioning and leadership for workforce issues in specialist learning disability services, as well as the wider NHS workforce. This is the first in a series of articles that reports on one aspect of the project: the focus group work undertaken with parents and relatives of people with learning disabilities, and people with learning disabilities themselves, as to the need and type of health workforce needed to support them in the future. The article concludes by identifying the key messages of importance from parents and people with learning disabilities concerning the future specialist and wider NHS workforce.

Self-management interventions for epilepsy in people with intellectual disabilities: A scoping review.

PURPOSE: People with intellectual disabilities (ID) experience higher incidences of chronic health conditions, poorer health outcomes, and increased risk of premature death. Epilepsy is 20 times more common in people with ID than in the general population. It tends to be more difficult to diagnose, more severe, and more difficult to treat. Improving epilepsy self-management in this group is advocated in guidelines for best practice. However, few self-management interventions exist, and a robust examination of their effectiveness is missing. Our aim was to identify existing self-management interventions for epilepsy in people with ID and to analyze their impact. METHODS: A scoping review using Arksey and O'Malley's framework was conducted. Medline, EMBASE, CINAHL, PsycInfo, OpenSIGLE, the Cochrane Database of Systematic Reviews, and Web of Science were searched from inception until June 2015. Using a piloted charting tool, selected articles were thematically analyzed. RESULTS: An initial search identified 570 articles, of which five met the inclusion criteria. Pilot and randomized controlled feasibility study findings suggest that self-management interventions targeted at people with ID are acceptable to this population, improve epilepsy-related knowledge, improve seizure frequency, and show potential to improve quality of life. A randomised controlled trial of a self-management intervention is currently underway. CONCLUSION: Studies evaluating self-management interventions for people with epilepsy and ID are sparse. Our findings demonstrate the potential for self-management interventions to improve outcomes in this population. Controlled studies with comparable measures and longer follow-ups are needed to rigorously assess the impact of self-management interventions on this patient population.

Wordless intervention for people with epilepsy and learning disabilities (WIELD): a randomised controlled feasibility trial.

OBJECTIVE: To investigate the feasibility of a full-scale randomised controlled trial of a picture booklet to improve quality of life for people with epilepsy and learning disabilities. TRIAL DESIGN: A randomised controlled feasibility trial. Randomisation was not blinded and was conducted using a centralised secure database and a blocked 1:1 allocation ratio. SETTING: Epilepsy clinics in 1 English National Health Service (NHS) Trust. PARTICIPANTS: Patients with learning disabilities and epilepsy who had: a seizure within the past 12 months, meaningful communication and a carer with sufficient proficiency in English. INTERVENTION: Participants in the intervention group used a picture booklet with a trained researcher, and a carer present. These participants kept the booklet, and were asked to use it at least twice more over 20 weeks. The control group received treatment as usual, and were provided with a booklet at the end of the study. OUTCOME MEASURES: 7 feasibility criteria were used relating to recruitment, data collection, attrition, potential effect on epilepsy-related quality of life (Epilepsy and Learning Disabilities Quality of Life Scale, ELDQOL) at 4-week, 12-week and 20-week follow-ups, feasibility of methodology, acceptability of the intervention and potential to calculate cost-effectiveness. OUTCOME: The recruitment rate of eligible patients was 34% and the target of 40 participants was reached. There was minimal missing data and attrition. An intention-to-treat analysis was performed; data from the outcome measures suggest a benefit from the intervention on the ELDQOL behaviour and mood subscales at 4 and 20 weeks follow-up. The booklet and study methods were positively received, and no adverse events were reported. There was a positive indication of the potential for a cost-effectiveness analysis. CONCLUSIONS: All feasibility criteria were fully or partially met, therefore confirming feasibility of a definitive trial. TRIAL REGISTRATION NUMBER: ISRCTN80067039.

Spirituality and learning disabilities: a qualitative study.

This article describes a unique empirical study where critical incidents were obtained from learning disability nurses to understand how they attempt to meet the spiritual needs of the people for whom they care. Following analysis, the nurses' approaches to meeting spiritual needs were categorized as 'personal' and 'procedural', and each of these is described in turn. There then follows a discussion on the effects of these nurses' interventions on both clients and their families, and nurses themselves. The findings of the study illuminate how these learning disability nurses attempted to meet the spiritual needs of people with learning disabilities in their care. The findings may help nurses ensure that spiritual needs are identified in the construction of the personal care plans of people with learning disabilities.

Wordless intervention for epilepsy in learning disabilities (WIELD): study protocol for a randomized controlled feasibility trial.

BACKGROUND: Epilepsy is the most common neurological problem that affects people with learning disabilities. The high seizure frequency, resistance to treatments, associated skills deficit and co-morbidities make the management of epilepsy particularly challenging for people with learning disabilities. The Books Beyond Words booklet for epilepsy uses images to help people with learning disabilities manage their condition and improve quality of life. Our aim is to conduct a randomized controlled feasibility trial exploring key methodological, design and acceptability issues, in order to subsequently undertake a large-scale randomized controlled trial of the Books Beyond Words booklet for epilepsy. METHODS/DESIGN: We will use a two-arm, single-centre randomized controlled feasibility design, over a 20-month period, across five epilepsy clinics in Hertfordshire, United Kingdom. We will recruit 40 eligible adults with learning disabilities and a confirmed diagnosis of epilepsy and will randomize them to use either the Books Beyond Words booklet plus usual care (intervention group) or to receive routine information and services (control group). We will collect quantitative data about the number of eligible participants, number of recruited participants, demographic data, discontinuation rates, variability of the primary outcome measure (quality of life: Epilepsy and Learning Disabilities Quality of Life scale), seizure severity, seizure control, intervention's patterns of use, use of other epilepsy-related information, resource use and the EQ-5D-5L health questionnaire. We will also gather qualitative data about the feasibility and acceptability of the study procedures and the Books Beyond Words booklet. Ethical approval for this study was granted on 28 April 2014, by the Wales Research Ethics Committee 5. Recruitment began on 1 July 2014. DISCUSSION: The outcomes of this feasibility study will be used to inform the design and methodology of a definitive study, adequately powered to determine the impact of the Books Beyond Words intervention to improve the management of epilepsy in people with learning disabilities. TRIAL REGISTRATION: http://ISRCTN80067039 (Date of ISRCTN assignation: 23 April 2014).

Lecturers and students as stakeholders for education commissioning for learning disability nursing: focus group findings from a multiple method study.

BACKGROUND: In England, the numbers of learning disability nurses are declining; a need for urgent attention to workforce planning issues has been advocated. This paper considers views of lecturers, students and potential students as legitimate stakeholders for future education commissioning for this field of nursing. OBJECTIVES: This project aimed to undertake a strategic review of learning disability nursing educational commissioning, to provide an 'evidence based' evaluation to inform future strategic commissioning of learning disability nursing for one Health Authority, UK. DESIGN: The project adopted a structured multiple methods approach to generate evidence from a number of data sources, this paper reports on the findings from one method [focus groups] used for two groups of stakeholders. INFORMANTS: Informants comprised 10 learning disability nursing students studying at a Higher Education Institution, 25 health and social care students studying at a Further Education College, and 6 academic staff from 5 universities; all informants were from the south of England. METHODS: The method reported on in this paper is focus group methodology. Once completed, transcripts made were read in full, and subjected to content analysis. RESULTS: The process of content analysis led to the development of 11 theoretical categories that describe the multiplicity of views of informants, as to issues of importance for this element of the health workforce. CONCLUSION: The paper concludes by identifying key messages from these informants. It is suggested that both method and findings have national and international resonance, as stakeholder engagement is a universal issue in health care education commissioning.

Annie's story: the use of oral history to explore the lived experience of a learning disability nurse in the 20th century.

In the field of learning disabilities, oral history has exclusively focussed on the lives of people who were detained in large institutions and hospitals for the mentally deficient or handicapped. Such work has been invaluable in providing unique and authentic insights into the lives of people with learning disabilities during the last century. It has also helped us better understand the impact of social policy and legislative change, such as the introduction to the Mental Deficiency Act 1913. However, little is known about what life was like as a nurse working the field of learning disabilities in the last century. The chief aim of this paper is to present analysed data obtained by using the oral history approach to support and/or challenge our current knowledge of learning disability during this time. As such, it presents a unique contribution to our knowledge of the history of learning disability nursing in the UK.