Grief experiences of nurses in Ireland who have cared for children with an intellectual disability who have died.

BACKGROUND: The personal grief experience of nurses who have cared for children with an intellectual disability who have died is little understood. METHOD: This descriptive qualitative study was initiated to ascertain nurses' knowledge and personal experience of grief and how this is managed. Semi-structured interview was the method used to collect data from eight nurses who had cared for a child with an intellectual disability who had died. A pragmatic approach to qualitative data analysis was adopted. RESULTS: Of the eight main themes identified, the four most prevalent are discussed in detail: grief, relationship with the child, end of life, and support. The findings demonstrate that nurses have a good understanding of grief, but the way they experience and manage it varies. CONCLUSION: The study suggests that nurses who have cared for children with an intellectual disability who have died may experience disenfranchised grief. Nurses seek support from a variety of sources. Organisational support is important for nurses following the death of a child for whom they have provided care.

An update of the reported effects of the COVID-19 pandemic on person with intellectual disability and their carers: a scoping review.

BACKGROUND: The effects of the COVID-19 pandemic has been felt by all groups in society and people with intellectual disability are especially vulnerable due to underlying conditions/health problems, multi-morbidity, limitations in understanding, frailty and social circumstances. This places people with intellectual disability, their families and carers at increased risk of stress and in need of support. OBJECTIVE: To update and chart the evidence of the effects of the COVID-19 pandemic on people with intellectual disability, their families and carers reported within the research in 2021. METHODS: A scoping review of research published in 2021 across 7 databases. RESULTS: 84 studies met the inclusion criteria, and the findings highlight people with intellectual disability are at a greater risk to COVID-19 health outcomes due to underlying health concerns and access issues. The effects of COVID-19 can be seen from a personal, social and health perspective for people with intellectual disability, their carers and families. However, COVID-19 did have some unanticipated benefits such as: less demand on time, greater opportunity to engage with people of value and building resilience. CONCLUSIONS: COVID-19 presents many challenges but for people with intellectual disability compounding existing obstacles encountered in access issues, service provision and supports available. There is a need to identify and describe the experiences of people with intellectual disability, their families and carers in the medium-long term during COVID-19. Greater supports and evidence of effective interventions to promote health, deliver services and support individual with intellectual disability is needed as there is little evidence of clinical care for people with intellectual disability during COVID-19.

During pandemics the perspectives of people with intellectual disability, their carers and service providers are central to addressing systemic health care inequalities and poor-quality person-centred care.Greater collaboration is needed to learn from pandemics in terms of health and social care policy improvements.There remains a need for large scale studies that are representative of the broad spectrum of the intellectual disability population and examine Long-COVID in this group of people.