Sandra Varey

How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries:

Background: Patients with advanced diseases often experience deficient continuity of care. Although integrated palliative care promotes continuity of care, it is not clear how it can be optimized to improve continuity of care experiences. Aim: To examine how relational, informational and management continuity of care are experienced by patients with advanced diseases and their family caregivers receiving care from several integrated palliative care initiatives in five European countries. Design: We adopted a longitudinal qualitative study design including two interviews (interval 3 months) with patients and family caregivers focusing on how health care professionals responded to their needs. Interviews were audio-recorded and transcribed verbatim. Analysis involved a two-step qualitative content approach. Setting/participants: A total of 22 integrated palliative care initiatives (established local palliative care collaborations) were selected in Belgium, Germany, Hungary, the Netherlands and the United Kingdom. We recruited 152 patients (63% cancer, 24% chronic obstructive pulmonary disease, 13% heart failure; life expectancy <1 year; mean age 68 years, 56% female) and 92 family caregivers (mean age 61 years, 66% female). Results: Trusted relationships with a small number of key health care professionals to receive tailored care and easily access help were essential. Relational continuity was often deficient, especially with general practitioners. Although informational and management continuity was often lacking in care provision, collaborative integrated palliative care initiatives were related to consistent and coherent care. Conclusion: Patients and family caregivers most likely experience continuity of care by having a small number of trusted health care professionals who are available, provide multidisciplinary care and regularly transfer information to all health care professionals involved. Optimizing continuity of care requires further integration of integrated palliative care initiatives with other health care professionals involved in the patients’ care networks.

How effective and cost-effective are innovative combinatorial technologies and practices for supporting older people with long-term conditions to remain well in the community? An evaluation protocol for an NHS Test Bed in North West England

Introduction The Lancashire and Cumbria Innovation Alliance (LCIA) Test Bed is a partnership between the National Health Service in England, industry (led by Philips) and Lancaster University. Through the implementation of a combination of innovative health technologies and practices, it aims to determine the most effective and cost-effective ways of supporting frail older people with long-term conditions to remain well in the community. Among the Test Bed’s objectives are to improve patient activation and the ability of older people to self-care at home, reduce healthcare system utilisation, and deliver increased workforce productivity. Methods and analysis Patients aged 55 years and over are recruited to four cohorts defined by their risk of hospital admission, with long-term conditions including chronic obstructive pulmonary disease, dementia, diabetes and heart failure. The programme is determined on an individual basis, with a range of technologies available. The evaluation is adopting a two-phase approach: phase 1 includes a bespoke patient survey and a mass matched control analysis; and phase 2 is using observational interviews with patients, and weekly diaries, action learning meetings and focus groups with members of staff and other key stakeholders. Phase 1 data analysis consists of a statistical evaluation of the effectiveness of the programme. A health economic analysis of its costs and associated cost changes will be undertaken. Phase 2 data will be analysed thematically with the aid of Atlas.ti qualitative software. The evaluation is located within a logic model framework, to consider the processes, management and participation that may have implications for the Test Bed’s success. Ethics and dissemination The LCIA Test Bed evaluation has received ethical approval from the Health Research Authority and Lancaster University’s Faculty of Health and Medicine Research Ethics Committee. A range of dissemination methods are adopted, including deliberative panels to validate findings and develop outcomes for policy and practice.

‘We Call it Jail Craft’: The Erosion of the Protective Discourses Drawn on by Prison Officers Dealing with Ageing and Dying Prisoners in the Neoliberal, Carceral System:

The UK prison population has doubled in the last decade, with the greatest increases among prisoners over the age of 60 years, many of whom are sex offenders imprisoned late in life for ‘historical’ offences. Occurring in a context of ‘austerity’ and the wider neoliberal project, an under-researched consequence of this increase has been the rising numbers of ‘anticipated’ prison deaths; that is, deaths that are foreseeable and that require end of life care. We focus here on ‘jail craft’; a nostalgic, multi-layered, narrative or discourse, and set of tacit practices which are drawn on by officers to manage the affective and practical challenges of working with the demands of this changed prison environment. Utilising findings from an empirical study of end of life care in prisons, we propose that the erosion of jail craft depletes protective resources and sharpens the practical consequences of neoliberal penal policies.

Involving prisoners in action research to improve palliative care: findings from the ‘both sides of the fence’ study

Introduction With more than 12,000 older prisoners in the UK, deaths in custody are increasing ,1 as is the need for palliative care. The ‘Both sides of the fence’ study used action research methodology in one prison with a high population of older offenders. Interviews with staff and prisoners in Phase 1 provided the foundation for action cycles that took place in Phase 2; this paper reports action cycles directly involving older prisoners. Aim(s) and method(s) The aim was to engage with prisoners in making meaningful improvements to palliative care. First, an Older Prisoners Group (OPG) was established and facilitated by prison staff and researchers. The OPG met bi-monthly, with smaller groups of prisoners working on tasks between meetings. OPG members created an information leaflet on planning for the end of life in prison. They were also involved in the development of an Older Prisoners Unit (OPU) to reduce intimidation of vulnerable older prisoners by younger offenders. Results One thousand copies of the leaflet were produced for use by prisoners in the research site and other prisons. The OPU is a protected environment for prisoners over 50, with medication lockers in each room; prisoners in the OPU have reported feeling safer and less stressed. They also reported increased self-esteem through their involvement in the research. Conclusion(s) Involving prisoners in action research can have positive benefits for both prisoners and staff. Sustainability of these benefits will be achieved by the continuation of the OPG after the end of the study. Reference Prison Reform Trust.Bromley Briefings Prison Factfile, Autumn 2015. London: Prison Reform Trust; 2015.