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.

Young People and Mental Health, Policy and Research Review

This brief focuses on issues relating to young people’s mental health. It draws on published research evidence and discussion at a Roundtable event organised by YouthAction Northern Ireland (YANI) and ARK and held in December 2012. Roundtable participants included officials from a number of government departments, Health Trusts, representatives from a range of NGOs, academics, and young people from YouthAction Northern Ireland’s Right Here Fermanagh
project and Young Men Talking Project who opened the debate with a contribution on what they think is important for young people’s mental health. The event was conducted under the anonymity of reporting allowed under the Chatham House Rule to encourage open debate.

'"These schemes will win for themselves the confidence of the people": Irish independence, poor law reform and hospital provision'

This article examines hospital provision in Ireland during the early twentieth century. It examines attempts by the newly independent Irish Free State to reform and de-stigmatise medical relief in former workhouse infirmaries. Such reforms were designed to move away from nineteenth century welfare regimes which were underpinned by principles of deterrence. The reform initiated in independent Ireland - the first attempted break-up of the New Poor Law in Great Britain or Ireland - was partly successful. Many of the newly named County and District Hospitals provided solely for medical cases and managed to dissociate such health care provision from the relief of poverty. However, some hospitals continued to act as multifunctional institutions and provided for various categories including the sick, the aged and infirm, 'unmarried mothers' and 'harmless lunatics'. Such institutions often remained associated with the relief of poverty. This article also examines patient fee-payment and outlines how fresh terms of entitlement and means-testing were established. Such developments were even more pronounced in voluntary hospitals where the majority of patients made a financial contribution to their treatment. The article argues that the ability to pay at times determined the type of provision, either voluntary or rate-aided, available to the sick. However, it concludes that the clinical condition of patients often determined whether they entered a more prestigious voluntary hospital or the former workhouse. Although this article concentrates on two Irish case studies, County Kerry and Cork City; it is conceptualised within wider developments with particular reference to the British context.

Provision for young people who have displayed harmful sexual behaviour

Over the past few decades, children and young people who have sexually harmed others have attracted increasing attention from researchers and policy makers. Although it is known that they form a small, but significant group, there are difficulties in gaining a clear indication of incidence since much of the existing research has involved small and heterogeneous samples, many of which were not UK-based and lack of control groups for comparison. Furthermore, many incidents of sexual abuse are likely to go unreported. The nature, extent and significant negative consequences of harmful sexual behaviour for the victims and perpetrators, make this an important issue for policy development and research investigation. Overall, research and knowledge in this important area are still accumulating and much remains to be confirmed. Although recent decades have seen a movement towards greater understanding of the issue of harmful sex behaviour, a gap remains. The purpose of the project was to help address this gap in knowledge.

Power, Pedagogy and Participation: ethics and pragmatics in research with young people

This article addresses issues of methodology and ethical reflexivity when attempting to investigate the opinions of young people. Drawing specifically on three studies of young people's understandings of citizenship and their views on topical issues, two from England and one from Lebanon, the authors present ways in which the ethical and practical challenges of such research can be met. While acknowledging the power relationship between researchers and informants, they suggest that what they call ‘pedagogical research approaches’ built on a participative methodology can open up a space where both parties benefit. They argue that, when working in schools, teacher educators can take advantage of this status to present themselves simultaneously as insiders and outsiders. The authors have devised what are intended to be non-exploitative research instruments that permit the gathering of useful qualitative data during a short encounter. They illustrate their approach with examples of classroom activities they have developed to provide simultaneously a valid learning experience and usable data.

The legal needs of children and young people in Northern Ireland: the views of young people and adult stakeholders

This research was conducted on behalf of the Department of Justice to explore the following issues: the nature and extent of the legal needs of children and young people; the extent to which these legal needs are being met; barriers to children and young people accessing legal advice, information and representation; potential solutions to these barriers; and potential future mechanisms for meeting identified legal needs of children and young people.