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.

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.

Self-Assessment of Health Professionals' Cultural Competence: Knowledge, Skills, and Mental Health Concepts for Optimal Health Care.

Current research often refers to cultural competence to improve health care delivery. In addition, it focuses on the cultural uniqueness of each health service user for optimal personalized care. This study aimed to collect self-assessment data from health professionals regarding their cultural competence and to identify their development needs. A mixed methods design was adopted using the Cultural Competence Self-assessment Checklist of the Central Vancouver Island Multicultural Society. This was translated into Greek, validated, and then shared with health professionals in Cyprus. Subsequently, a semi-structured interview guide was designed and utilized. This was structured in exactly the same question categories as the questionnaire. Data collection took place between October 2021 and May 2022, and convenience sampling was used to recruit 499 health scientists in Cyprus. The sample comprised doctors, nurses, psychologists, midwives, social workers, and physiotherapists. Subsequently, 62 interviews were conducted with participants from the same specialties. The results showed that (compared to other health professionals) nurses and psychologists are more sensitive to issues of cultural competence. It would appear that the more socially oriented sciences had better-prepared healthcare staff to manage diversity in context. However, there is a gap between knowledge and skills when comparing doctors to nurses; they seem to be more skilled and willing to intervene actively in cases of racist behavior or problem-solving. In conclusion, participants identified the importance of their cultural competence; they also realized the importance of optimal planning of personalized health care. There is a significant need for continuous and specialized cultural competence training for all health professions.

Ethics framework and recommendations to support capabilities of people with intellectual and developmental disabilities during pandemics.

A growing body of knowledge highlights the negative impact of the COVID-19 pandemic on the health and well-being of many people with intellectual and developmental disabilities (IDDs) and their caregivers. The underlying reasons are not only due to biomedical factors but also ethical issues. They stem from longstanding and pervasive structural injustices and negative social attitudes that continue to devalue people with IDD and that underlie certain clinical decisions and frameworks for public-health policies during this pandemic. Unless these fundamental ethical shortcomings are addressed, pandemic responses will continue to undermine the human rights and well-being of people with IDD. This paper proposes an ethics framing for policy and practices regarding clinical care and public health based on Martha Nussbaum's approach to Capability Theory. Such a framework can reorient healthcare professionals and healthcare systems to support the capabilities of people with IDD to protect, recover, and promote health and well-being. It could be applied during this pandemic and in planning for future pandemics. The paper presents some practical recommendations that follow from applying this framework.

COVID-19: Evolving challenges and opportunities for residential and vocational intellectual disability service providers.

The sustainability of service provision continues to be a challenge in the field of intellectual disability due to changes in delivery as part of intermittent or ongoing lockdown requirements during the COVID-19 global pandemic. There are many facets to this that may have temporary or permanent impacts not only on the sector, but ultimately for service access and outcomes for people with intellectual disability themselves. This narrative literature review identifies both opportunities for, and impacts on, service providers across jurisdictions. These are explored in terms of the effects that suspension, adaptation, continuity or the cessation of service delivery have had, and those that are projected. Such impacts include, but are not limited to, changes in service access and delivery, employment roles and responsibilities, financial sustainability and the need to diversify the services and supports provided and how they are delivered. The relevance of these impacts for family carers and people with intellectual disability is also discussed. Nonetheless, there have also been opportunities which inform the shape of service delivery and pandemic planning into the future.

'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.

Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability.

BACKGROUND: People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. AIMS: This paper thus seeks to answer the question 'How and when are nurses involved in providing care at end of life for people with intellectual disability?' METHODS: A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. RESULTS: Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. CONCLUSIONS: Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.

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.

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.

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.