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.

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.

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.

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.

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.

'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.

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.

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.

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.

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.

Meeting the health needs of older people with intellectual disabilities: exploring the experiences of residential social care staff.

Older people with intellectual disabilities often experience high levels of health needs and multiple morbidities but they may be supported by residential care staff with little or no previous experience of identifying and meeting health needs. Little is known regarding how they undertake this health-related role and this exploratory study seeks to address this gap. A purposive sample of 14 managers of supported living accommodation in Wales were interviewed in 2014 to determine their experiences of supporting tenants in relation to age-related health needs.