Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives
Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods
A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results
Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions
This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

The participation of disabled children, young people and their parents in health and social care. Implications for policy and practice

No abstract available

An evaluation of palliative care services for cancer patients in the Southern Health and Social Services Board of Northern Ireland.

An interview study of 55 lay carers of people who died from cancer in the Southern Board of Northern Ireland was undertaken using a combination of closed-format and open-ended questions. The aim of the study was to evaluate palliative care services delivered in the last six months of their lives to cancer patients who died either at home or in hospital. Two-thirds of the deaths (36) occurred in the domestic home, 45 of the deceased were admitted as hospital inpatients, and the great majority were in receipt of community nursing (53) and general practitioner (54) services. Open-ended questions were used to allow respondents to give their views about services in some detail and their views about good and bad aspects of services were sought. While they were generally satisfied with services specific areas of difficulty were identified in each aspect of care addressed by the study. The most favourable assessments were made of community nursing with the greatest number of negative comments being made about inpatient hospital care. Differing interests between some of those who were dying and their lay carers were found in two areas: the receipt of help from nonfamily members and the information that the deceased received about their terminal status.

Health and Social Care Workers Perceptions of Novel Psychoactive substances in Northern Ireland

Background: The EU Early Warning System currently monitors more than 450 new psychoactive substances (EMCDDA, 2015), far outweighing the total number of illicit drugs under international control (UNODC, 2013). Due to the recent emergence of NPS and rapidly changing nature of the market, evidence about the way in which the emerging drugs are managed in health and social care settings is limited. Methods: The study adopted a mixed methods design, utilising a cross sectional survey and follow up telephone interviews to capture data from staff working in drug and alcohol related services in statutory and voluntary sectors, across the five Health and Social Care (HSC) Trust areas in Northern Ireland. 196 staff participated in the survey and 13 took part in follow up telephone interviews. Results: Study respondents reported that addressing NPS related issues with service users was a key aspect of their daily role and function. Levels of injecting behaviours were also viewed as relatively high by the study participants. Almost all workers used harm reduction as their primary approach when working with service users and the majority of respondents called for additional practical training in relation to addressing drug interactions and intervening with NPS related issues.

Personal and Public Involvement and its impact - Monitoring, measuring and evaluating the impact of Personal and Public Involvement (PPI) in Health and Social Care in Northern Ireland.

Introduction
This report details the findings from research conducted across Northern Ireland’s Health and Social Care Trusts during 2015 which examines the current state of Personal and Public Involvement (PPI). This is about how service users, carers and patients engage with staff, management and directors of statutory health and social care organisations. Most statutory health and social care organisations must, under legislation, meet the requirements of PPI. PPI has been part of health and social care policy in Northern Ireland since 2007 and became law two years later with the introduction of the Health and Social Care Reform Act (2009). It is, therefore, timely that PPI is now assessed in this systematic way in order to both examine the aspects which are working well and to highlight those areas where improvements need to be made. As far as possible, this Summary Report is written in an accessible way, avoiding jargon and explaining key research terms, so as to ensure it is widely understood. This is in keeping with established good practice in service user involvement research. This summary, therefore, gives a picture of PPI in Northern Ireland currently. There is also a fuller report which gives a lot more details about the research and findings. Information on this is available from the Public Health Agency and/or the Patient and Client Council.

Progress and the Lack of Progress in Addressing Infant Health and Infant Health Inequalities in Ireland during the 20th Century

There is a growing literature which documents the importance of early life environment for outcomes across the life cycle. Research, including studies based on Irish data, demonstrates that those who experience better childhood conditions go on to be wealthier and healthier adults. Therefore, inequalities at birth and in childhood shape inequality in wellbeing in later life, and the historical evolution of the mortality and morbidity of children born in Ireland is important for understanding the current status of the Irish population. In this paper, I describe these patterns by reviewing the existing literature on infant health in Ireland over the course of the 20th century. Up to the 1950s, infant mortality in Ireland (both North and South) was substantially higher than in other developed countries, with a large penalty for those born in urban areas. The subsequent reduction in this penalty, and the sustained decline in infant death rates, occurred later than would be expected from the experience in other contexts. Using records from the Rotunda Lying-in Hospital in Dublin, I discuss sources of disparities in stillbirth in the early 1900s. Despite impressive improvements in death rates since that time, a comparison with those born at the end of the century reveals that Irish children continue to be born unequal. Evidence from studies which track people across the life course, for example research on the returns to birthweight, suggests that the economic cost of this early life inequality is substantial.

Hidden Gems: systematically searching electronic databases for research publications for social work and social care.

Context: Electronic bibliographic databases are a key source for professional publications about social work and community care more generally. This article describes and evaluates a method of identifying relevant articles as part of a systematic review of research evidence. Decision making about institutional and home care services for older people is used as an example. Method: Four databases (Social Science Citation Index, Medline, CINAHL, and Caredata) that abstract publications relevant to health and social services were searched systematically to identify relevant research studies. The items retrieved were appraised independently using a standard form developed for the purpose. The searches were compared in terms of sensitivity, precision, overlap between databases, and inter-rater reliability. Results: The search retrieved 525 articles, of which 276 were relevant. The four databases retrieved 55%, 41%, 19%, and 1% of the relevant articles respectively, achieving these sensitivities with precision levels of 54%, 48%, 84% and 94%. The databases retrieved 116, 73, 24 and 15 unique relevant articles respectively, showing the need to use a range of databases. Discussion: A general approach to creating a search to retrieve relevant research has been developed. The development of an international, indexed database dedicated to literature relevant to social services is a priority to enable progress in evidence-based policy and practice in social work. Editors and researchers should consider using structured abstracts in order to improve the retrieval and dissemination of research.

Journeys into the unknown: shared schooling and social change in Quebec and Northern Ireland

This article compares experiences of shared schooling in societies with 2 distinctive traits: first, a history of intercommunity conflict and isolation; and second, a segregated school system. Drawing on Parekh’s (2006) reconceptualisation of multiculturalism, this article analyses issues arising from experiences of intercommunity contact in shared schools in Quebec and Northern Ireland—in one case, bringing Anglophones and Francophones together and, in the other, Protestants and Catholics. Research data from both contexts is drawn upon to reflect on how this experience is lived. The metaphor of a journey is used to capture what it represents for those involved. A need to clarify, recognize, and exploit the potential of shared schooling for the transformation of divided societies is identified.