Annual health checks for people with intellectual disabilities: An exploration of experiences, follow-up and self-management of health conditions.

BACKGROUND: Little is known about how health issues identified at the annual health check (AHC) are followed up and addressed, how participants self-manage their health in between AHCs, and what support they receive. This research aimed to explore this. METHODS: People with intellectual disabilities (n = 12), and/or their supporters residing in Wales, were interviewed following their AHC and again at 6 and 11 months. A recurrent cross-sectional thematic analysis was undertaken. RESULTS: Five main themes emerged from interview one: going for a health check, issues identified, and actions taken, supporting the self-management of health, the personal context, and addressing health inequities. Four main themes emerged from follow-up interviews: follow-up, supporting the self-management of health, the need for reasonably adjusted health services, and going for another health check. CONCLUSION: A broader system of support around the AHC is required if people are to achieve or maintain the best possible health.

The Global Intellectual Disability Nursing Research Collaboratory: Forming an international transformational nursing network.

AIM: This paper explains how we created the Global Intellectual Disability Nurse Research Collaboratory (GIDNRC), a transformative network. The GIDNRC aims to make improvements in the understanding, research, policy, clinical care, and support provided to people with an intellectual disability. BACKGROUND: In 2022, the World Health Organization (WHO) called upon healthcare leaders internationally to take actions to promote more equal healthcare for disabled persons. This paper promotes the GIDNRC as a way for professionals to work together to make more equal healthcare throughout the world for people with intellectual disabilities. SOURCES OF EVIDENCE: We created this paper by reviewing peer-reviewed literature and research, international policies, and nursing networking initiatives. DISCUSSION: This paper explores current policy, research, and practice issues that formed the basis of beginning the GIDNRC, including how the COVID-19 pandemic changed care. CONCLUSION: Nurses are over 50% of the world's health workforce. Therefore, they have the potential to make a large impact in making care for people with intellectual disability much more equal than currently exists throughout the world. However, barriers exist. Forming the GIDNRC, as well as using the World Wide Web, offers an opportunity to address barriers to this goal. IMPLICATIONS FOR NURSING PRACTICE: Nurses can address the needs of people with intellectual disability in their daily nursing practice. The GIDNRC aims to strengthen these clinical skills, understand how care may vary throughout the world, and share knowledge, good practices, and new ways to approach care for people with an intellectual disability worldwide. IMPLICATIONS FOR NURSING POLICY: International nursing policy should actively focus on the needs of people with intellectual disabilities and the role nurses play in addressing these health needs. The GIDNRC may provide an important way to achieve developments in this policy.

'People with intellectual disabilities living in the communities is bad enough let alone having sex': Exploring societal influence on social care workers' attitudes, beliefs and behaviours towards support for personal and sexual relationship needs.

BACKGROUND: Services have a duty to uphold the personal and sexual relationship (P&SR) rights of adults with intellectual disability. However, little is known about how social care workers' (SCWs) perceptions of public views of intellectual disability and sexuality might affect their attitudes, believes and behaviours towards supporting P&SR needs. This exploratory study addresses this gap in knowledge. MATERIALS AND METHODS: Qualitative interviews using critical incident technique were conducted with 18 SCWs. Data were transcribed and thematically analysed. RESULTS: Four dominant themes were identified; socio-cultural, practice-policy gaps, fear and safety needs. These highlights how perceptions of public attitudes impact on SCWs' attitudes towards supporting development of P&SR both directly and through perceptions of organisational policies. This leads to prioritisation of safety needs over support for P&SR. CONCLUSIONS: Public expectations strongly influenced SCWs' interpretation of organisational policy, emphasising a need for practice-based support to manage public expectations and reduce fear.

Exploring professional decision making in relation to safeguarding: A grounded theory study of social workers and community nurses in community learning (intellectual) disability teams in wales.

BACKGROUND: People with intellectual disabilities are at increased risk of abuse which may not always be responded to appropriately. This study therefore sought to explore how nurses and social workers make decisions when safeguarding adults with intellectual disabilities. METHOD: A situational analysis grounded theory study. Semi-structured interviews were undertaken with social workers (n = 16) and community nurses (n = 9) working in Community Learning (Intellectual) Disability Teams in Wales. Data were transcribed and analysed thematically and cartographically in keeping with situational analysis. RESULTS: Four key themes emerged: The official line; Expectation and perception; Non-vulnerable adult process options; Confidence and competence. Sites of silence were also identified: not making a decision, not asking further questions, preserving family relationships and the individual with intellectual disabilities. CONCLUSION: Decision making in relation to safeguarding adults with intellectual disabilities is a complex process, influenced by many factors and in which discretion is exercised by professionals.

An exploratory study of Behavioural Specialist experiences of involving service users in the development of their positive behavioural support plans.

METHODS: The study included semi-structured interviews comprised of nine Behavioural Specialists in three focus groups across two health boards. A descriptive thematic analysis study. FINDINGS: Three major themes and 11 minor themes were identified illustrating how people with learning disabilities and behaviours that challenge were involved in developing their PBS plan. Significantly, the themes illustrated the complexity of truly involving service users in the process. CONCLUSION: Inclusion of people with a learning disability and behaviours that challenge in their PBS plan poses significant challenges. Person-centred care struggles to be truly embedded in the PBS model.

Hospital passports, patient safety and person-centred care: A review of documents currently used for people with intellectual disabilities in the UK.

AIMS AND OBJECTIVES: To review hospital passports currently in use for people with intellectual disabilities in the UK and to make recommendations for practice. BACKGROUND: Hospital passports have been introduced internationally to address communication barriers that may limit access to appropriate health care for people with intellectual disabilities. They are viewed as promoting patient safety and person-centred care but their format may vary, they are not always used appropriately, and hence, their effectiveness may be limited. DESIGN: Qualitative content analysis. METHODS: Sixty hospital passports in use in the UK were reviewed against a coding frame by two members of the research team. Areas of interest included key patient and primary care information, support network details, consent and capacity, support required in relation to activities of daily living, length of the document and completion details. Results were entered into Excel. RESULTS: Considerable variation was found between documents in terms of terminology, length and format. Most included information regarding communication and support needs although some omitted important information such as allergies, risk assessment and need for reasonable adjustments. CONCLUSIONS: Considerable variation exists between current hospital passports, which may limit their effectiveness: key information required may not be included and/or it may not be easy to locate. Greater standardisation of documents is required, but this process should include input from all key stakeholders. RELEVANCE TO CLINICAL PRACTICE: Internationally nurses provide care for people with intellectual disabilities and others with communication difficulties. Hospital passports are one way of enhancing safety and person-centred care, need to be accessed and used as a basis for care planning. However, variation in format may limit this effectiveness and nurses should work with others to develop a more standardised approach, which better meets the needs of all stakeholders.

Training of Residential Social Care Staff to Meet the Needs of Older People with Intellectual Disabilities who Develop Age-Related Health Problems: An Exploratory Study.

BACKGROUND: Despite awareness of the age related health needs of people with intellectual disabilities little is known regarding how residential social care staff are prepared to meet such needs. METHODS: Data were gathered via semi-structured interviews from 14 managers of supported living settings. Transcripts were thematically analysed. FINDINGS: Staff may work in supported living settings with no prior experience of care work, and previous knowledge/experience of supporting people in relation to their health is not required. Whilst health related training is provided there is a lack of specific training regarding healthy ageing, and training seems to be reactive to changing needs of tenants meaning that proactive monitoring for changes in health status may not occur. CONCLUSIONS: Whilst some training is provided for residential social care staff in relation to health and ageing a more proactive approach is required which should include a focus on healthy ageing.

Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation.

AIMS AND OBJECTIVES: The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. BACKGROUND: Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. METHODS: Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. CONCLUSIONS: This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. RELEVANCE TO CLINICAL PRACTICE: The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care.

Planning for research impact.

BACKGROUND: Several drivers are currently leading to greater emphasis of the importance of ensuring research has impact. Nursing research aims to improve patient care, safety and well-being, so it might be assumed results with the potential to effect such changes would automatically have an impact on clinical practice. However, experience suggests this is not the case and careful attention is needed for there to be an impact. AIM: To present the example of a project commissioned to develop a health communication tool to support people with learning disabilities in accessing healthcare. DISCUSSION: The authors explore the importance of a planned approach to impact by referencing existing frameworks and providing examples of strategies used in the project. They also discuss the importance of framing the question using a range of approaches to actively engage stakeholders and of using diverse strategies to embed the development in practice. CONCLUSION: A planned approach is required to maximise impact from research. Planning and associated actions need to start at the very beginning of the research project and continue beyond the point of delivering the project report. IMPLICATIONS FOR PRACTICE: This paper relates to a specific context and patient group but the principles discussed are transferable to other clinical settings and patient groups.

How do people with intellectual disabilities view abuse and abusers?

People with intellectual disabilities have a higher risk of being abused than other people, but to date research has not explored their views regarding abuse. This article reports the findings relating to one question within a participatory research study concerning the abuse of people with intellectual disabilities. This question asked what people with intellectual disabilities' views are concerning abuse. Data were gathered via individual interviews (n = 14) and focus groups (7 groups involving 47 people in total), which were then analysed via a process of sorting statements into themes followed by group discussion and analysis of these themes. Participants expressed a range of views regarding abuse, some of which revealed strong emotions: a number of participants indicated that abuse could make people feel as though their lives are not worth living. People with intellectual disabilities can discuss their feelings around abuse and recognise the impact this has on their lives. There is, however, a need for improved responses to disclosures of abuse and the provision of ongoing support to address psychological issues.