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.

Falls prevention and support:: translating research, integrating services and promoting the contribution of service users for quality and innovative programmes of care

Falls are a significant threat to the safety, health and independence of older citizens. Despite the substantial evidence that is available around effective falls prevention programmes and interventions, their translation into falls reduction programmes and policies has yet to be fully realised. While hip fracture rates are decreasing, the number and incidence of fall-related hospital admissions among older people continue to rise. Given the demographic trends that highlight increasing numbers of older people in the UK, which is broadly reflected internationally, there is a financial and social imperative to minimise the rate of falls and associated injuries. Falling is closely aligned to growing older (Slips, Trips and Falls Update: From Acute and Community Hospitals and Mental Health Units in England and Wales, Department of Health, HMSO, London, 2010). According to the World Health Organization, around 30% of older people aged over 65 and 50% of those over 80 will fall each year (Falls Fact Sheet Number 344, WHO, Geneva, 2010). Falls happen as a result of many reasons and can have harmful consequences, including loss of mobility and independence, confidence and in many cases even death (Cochrane Database Syst Rev 15, 2009, 146; Slips, Trips and Falls Update: From Acute and Community Hospitals and Mental Health Units in England and Wales, Department of Health, HMSO, London, 2010; Falling Standards, Broken Promises: Report of the National
Audit of Falls and Bone Health in Older People 2010, Health Care Quality
Improvement Partnership, London, 2011). What is neither fair nor correct is the
common belief by old and young alike that falls are just another inconvenience to put up with. The available evidence justifiably supports the view that well-organised services, based upon national standards and expert guidance, can prevent future falls among older people and reduce death and disability from fractures. This paper will draw from the UK, as an exemplar for policy and practice, to discuss the strategic direction of falls prevention programmes for older people and the partnerships that need to exist between researchers, service providers and users of services to translate evidence to the clinical setting. Second, it will propose some mechanisms for disseminating evidence to healthcare professionals and other stakeholders, to improve the quality and capacity of the clinical workforce.

Fit for Purpose?:Challenges for Irish Public Administration and Priorities for Public Service Reform

The depth of the current economic and fiscal crisis has raised concerns about the Irish political and administrative system, and prompted calls for fundamental reform of our structures of public governance. Both the state and its financial system are reliant on international support. This crisis requires a coherent response from our public administration. There is recognition that this change cannot simply be a repeat or extension of the public service reform programmes of the past. It will need to be more radical than this. Over the coming years, the numbers employed in the public service will continue to fall and expenditure will need to be restrained, targeted and prioritised. The Public Service Agreement 2010-2014 (the Croke Park Agreement) sets out a framework for change. But there is a need to look beyond the agreement to consider more fundamentally the future role of public administration in the context of the new economic and social dispensation in Ireland. Our public services need to adapt to this new environment if they are to continue to be fit for purpose.

In this paper we set out the main challenges facing public administration and where we see reform as vital. We note what changes have taken place to date, including experience with previous reform efforts, and outline what should happen next. Where appropriate, we draw on national and international practice to provide exemplars of change.

Financial reintegration assistance for veterans of the Irish revolution (1916-23): post-conflict policy in an historical setting

In the aftermath of the Irish revolution and Civil War the governments of independent Ireland introduced various compensation schemes to provide financial reintegration assistance to revolutionary veterans. This would be recognised today as part of a programme for DDR. This paper will examine various service and disability pensions paid to veterans in the context of literature on post-conflict reintegration. It will examine various challenges to reintegration in an effort to analyse the success of revolutionary compensation as a post-conflict reintegration mechanism in independent Ireland after 1922.

Extending Customer Relationship Management into a Social Context

Informed by the resource-based view, this study draws on customer relationship management (CRM) and value co-creation literature to develop a framework examining the impact of social networking sites on processes to manage customer relationships. Facilitating the depth and networked interactions necessary to truly engage customers, social networking sites act as a means of enhancing customer relationships through the co-creation of value, moving CRM into a social context. Tested and validated on a data set of hotels, the main contribution of the study to service research lies in the extension of CRM processes, termed relational information processes, to include value co-creation processes due to the social capabilities afforded by social networking sites. Information technology competency and social media orientation act as critical antecedents to these processes, which have a positive impact on both financial and non-financial aspects of firm performance. The theoretical and managerial implications of these findings are discussed accordingly.

‘Making it real’: evaluating the impact of service user and carer involvement in social work education

Service user and carer involvement (SUCI) in social work education in England is required by the profession’s regulator, the Health and Care Professions Council. However, a recent study of 83 HEIs in England reported that despite considerable progress in SUCI, there is no evidence that the learning derived from it is being transferred to social work practice. In this article we describe a study that examines the question: ‘What impact does SUCI have on the skills, knowledge and values of student social workers at the point of qualification and beyond?’ Students at universities in England and Northern Ireland completed online questionnaires and participated in focus groups, spanning a period immediately pre-qualification and between six to nine months post-qualification. From our findings, we identify four categories that influence the impact of service user involvement on students’ learning: student factors; service user and carer factors; programme factors; and practice factors; each comprises of a number of sub-categories. We propose that the model developed can be used by social work educators, service user and carer contributors and practitioners to maximise the impact of SUCI. We argue that our findings also have implications for employment-based learning routes and post-qualifying education.

Acceleration-as-a-Service: Exploiting Virtualised GPUs for a Financial Application

How can GPU acceleration be obtained as a service in a cluster? This question has become increasingly significant due to the inefficiency of installing GPUs on all nodes of a cluster. The research reported in this paper is motivated to address the above question by employing rCUDA (remote CUDA), a framework that facilitates Acceleration-as-a-Service (AaaS), such that the nodes of a cluster can request the acceleration of a set of remote GPUs on demand. The rCUDA framework exploits virtualisation and ensures that multiple nodes can share the same GPU. In this paper we test the feasibility of the rCUDA framework on a real-world application employed in the financial risk industry that can benefit from AaaS in the production setting. The results confirm the feasibility of rCUDA and highlight that rCUDA achieves similar performance compared to CUDA, provides consistent results, and more importantly, allows for a single application to benefit from all the GPUs available in the cluster without loosing efficiency.

How has the Personalisation of Social Care Impacted on Service Users with Dementia?

The personalisation agenda is a government initiative aimed at transforming adult social care through giving service users choice and control over the care they receive. A key part of this agenda is the provision of direct payments; cash payments made to individuals eligible for social care services which allow them to manage their own care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However very few people with dementia currently access direct payments. The objective of this research was to explore the social care experiences of people with dementia in relation to their access to and use of direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers, and focus groups held with two community social work teams. It was found that direct payments tended to be seen as a fall-back option, for example as the only alternative to residential care, or as a solution to problems with traditional services. Direct payments appeared to afford particular benefits to people with dementia in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments. The second (ongoing) phase of this research comprises the design and pilot testing of an intervention aimed at improving access to direct payments by people with dementia.

Social impact bond feasibility study: Children and youth at risk: the Projecto Família program

Social impact bonds are an increasingly popular method of unlocking typical social investment barriers and fuelling social innovation. This feasibility study aims to understand whether a social impact bond is a suitable tool for decreasing unnecessary foster care placements in Portugal, which have been proven to cause significant social and financial damage to societies. This research question is answered through a financial model which combines the costs of this social problem with Projecto Família’s intervention model, a leading intensive family preservation service. Main findings suggest using SIB funding for a 5-year project with the goal of generating the proper impact measurement metrics lacking in the field.

Shared lives social impact bond feasibility study

Loneliness and isolation among the elderly is an enormous problem in Portugal. Interventions to tackle loneliness worldwide have had limited success, and new approaches are needed. Shared Lives is an adult foster placement service in the UK that shows significant promise in tackling both loneliness, isolation and other societal challenges linked with ageing. This feasibility study suggests that replicating a Shared Lives service in Portugal, using a Social Impact Bond (SIB), is viable and likely to create both social and financial value for all stakeholders involved. This study provides recommendations for how a Shared Lives SIB could be designed and implemented.

Le processus de positionnement éthique du travailleur social dans la détermination de l’inaptitude d’une personne âgée, dans le cadre des régimes de protection du majeur

L’importance accordée à la reconnaissance des droits fondamentaux des personnes en matière d’intégrité physique et de consentement aux soins dans notre société fait que le travailleur social appelé à participer à l’ouverture de régimes de protection du majeur doit développer une expertise multidimensionnelle. De plus, le travailleur social se retrouve à confronté à différentes logiques d’action (juridique et procédurale, médicale, psychosociale, pragmatique) dont il doit tenir compte dans le processus d’évaluation. Ceci nous amène à aborder la position difficile dans laquelle se trouve généralement le travailleur social qui oscille entre la possibilité de favoriser l’autonomie de la personne et la volonté de protéger celle-ci. L’objectif de ce mémoire est donc d’accroître notre compréhension du processus de prise de décision du travailleur social dans la détermination de l’inaptitude d’une personne âgée, dans le cadre des régimes de protection du majeur. D’une manière plus spécifique, cette étude consiste à retracer et à théoriser, par l’analyse de sa logique d’action, le processus à travers lequel le travailleur social se positionne lorsqu’il se retrouve confronté à des dilemmes éthiques par rapport à la détermination de l’inaptitude d’une personne âgée. L’analyse de l’expérience du travailleur social a été réalisée à travers le paradigme de l’individualisme méthodologique tel que définit par Raymond Boudon. Les données furent recueillies lors d’entrevues semi-dirigées réalisées auprès de sept intervenants. Les témoignages recueillis par le biais de cette recherche exploratoire montrent à quel point il peut être difficile et éprouvant pour le travailleur social de devoir se positionner dans la détermination de l’inaptitude d’une personne âgée, dans le cadre des régimes de protection du majeur et comment ces interventions s’inscrivent dans un jeu infiniment complexe d’interactions multiples entre acteurs et actants. Les principaux obstacles à la prise de décision éthique dont ont fait part les travailleurs sociaux interrogés sont liés au contexte de pratique. Il s’agit du manque de ressources financières et humaines disponibles ainsi que le fait que les décisions ne soient pas toujours prises en équipe interdisciplinaire et dans un climat qui soit non menaçant. La reconnaissance de l’expertise des travailleurs sociaux en matière d’ouverture de régimes protection est d’ailleurs ressortie comme un enjeu important.

Le blues et le jazz au service de la révolution? : les positions des communistes américains blancs à l’égard de la musique noire et son utilisation à des fins d’agit-prop durant l’entre-deux-guerres (1919-1941)

En 1936, l’American Music League publiait le recueil de chansons afro-américaines Negro Songs of Protest collectées par le folkloriste communiste Lawrence Gellert. Puis en 1938 et 1939, grâce au financement du mouvement communiste américain, le producteur John Hammond présentait deux concerts intitulés From Spirituals to Swing au Carnegie Hall de New York. En plus de rendre hommage à l’histoire de la musique noire américaine, ces deux concerts défiaient la ségrégation raciale, permettant au Noirs et aux Blancs d’être rassemblés sur une même scène et de s’asseoir ensemble dans l’assistance. Au même moment, la chanteuse jazz Billie Holiday faisait fureur au Café Society, premier club « intégré » de New York et lieu de rassemblement de la gauche radicale, en interprétant soir après soir la chanson ‘’Strange Fruit’’ qui dénonçait l’horreur du lynchage toujours en vigueur dans le Sud des États-Unis. C’était l’époque du Front Populaire, la plus importante période d’influence du mouvement communiste aux États-Unis et, de surcroît, le moment de l’histoire américaine durant lequel la gauche organisée détenait un pouvoir sans précédent sur la culture de masse. Partant d’une discussion sur le potentiel révolutionnaire de la musique noire américaine et cherchant à comprendre le positionnement des mouvements sociaux vis-à-vis la culture, ce mémoire met en lumière le point de vue des communistes américains blancs face à l’émergence et à la popularité grandissante du blues et du jazz noirs aux États-Unis. En fonction des trois principales phases politiques du Parti Communiste américain (CPUSA) – la phase du colorblind class (1919-1928); la phase du nationalisme noir (1928-1935); le Front Populaire (1935-1940) – ce mémoire retrace les changements d’attitude de la vieille gauche envers la culture populaire et suggère que le mouvement communiste américain a tenté d’utiliser le blues et le jazz à des fins d’agit-prop.