Jo Hockley

Family perceptions of care at the end of life in UK nursing care homes

Background Over a fifth of the population of developed countries die in care homes. While studies are emerging on the outcomes of care in the last few weeks of life, few report on the experience as perceived by the family members. Methods As part of a wider study to improve the delivery of end-of-life care, bereaved relatives of residents who had died in a care home/hospital were sent the Family Perception of Care Scale questionnaire to evaluate their experience of care provision for their relative in the last month of life. The Family Perception of Care Scale questionnaire was posted to bereaved relatives, from 37 nursing care homes in south-east England, 3–6 months following the resident’s death. The questionnaires were posted over a 14-month period from 1 October 2009 to 31 November 2010. Results A total of 869 questionnaires were posted, with a 42% response rate. A global question within the Family Perception of Care Scale looking at the overall satisfaction with the quality of end-of-life care (Q24) indicated that bereaved relatives were satisfied with the care provided. Qualitative responses from family members highlighted some excellent care, although issues in relation to medical input, professional teamwork, last days of life and spiritual care remain problematic. Results provide an important insight into care provision at the end of life within these care homes. Conclusion While some issues can be addressed through education, relationships and value-based issues are likely to be more difficult to address in light of increasing pressure of healthcare support for UK care homes.

27 Implementing and sustaining the delivery of quality end-of-life care in care homes: the importance of paying attention to three layers of learning

Background Implementation of organisational change is recognised to be challenging. This is particularly true in a care home where organisational, financial and care barriers are known to exist. Early research demonstrated that education in palliative care alone did not achieve organisational change. Recently, ‘high facilitation’ of end-of-life care programmes, alongside a multi-layered approach to learning, has been identified as a research-based model to support organisational change in this setting. With growing numbers of people dying in care homes providing care to meet this need is now essential. Methods A Care Home Project Team (CHPT) was commissioned to deliver an end-of-life care programme within nursing care homes (NCHs) in 2008. The CHPT provides ‘face to face’ high facilitation to NCHs to implement and then sustain the programme in practice. Both implementation and sustainability is based on facilitating individual learning (a single person), organisational learning (the NCH staff and external professionals) and appreciative learning systems (learning across NCHs). Results All 74 NCHs and all commissioners have remained engaged with the programme. Currently 27 NCHs are implementing and 45 sustaining an end-of-life care programme (the remaining two NCHs have closed). Monthly audit data show clear improvement with 75% residents dying in the 74 NCHs in 2015/2016 compared to 57% in the 19 NCHs at the outset in 2007/8. Over time the delivery of this initiative has varied; from a practice development model, to one incorporating clinical care: vocational qualifications and more recently piloting the use of information technology. What has remained core within the sustainability initiative is the multi-layered approach to learning regardless of its format. Conclusion Within a NCH the on-going provision of multi-layered learning offers the potential to develop and sustain the delivery of high quality end-of-life care that is now required within this care setting.

The EAPC Taskforce on palliative care in long-term care settings for older people: Mapping good practice

Aims: Pain and other physical symptoms remain prevalent inthe palliative care population, and outcomes are not alwaysoptimal. Assessment, monitoring, medicines management,evaluation and collaboration are key nursing roles that mayhave a positive impact. Whether and how nurses enact theseroles is not well understood. This study aimed to investigatethe role of the community nurse in palliative care provision,with a particular focus on observational exploration of theirrole and practice in providing patient care.Methods: A longitudinal qualitative ethnographic design,comprising observation of community nurse/palliative carepatient/carer encounters over time, and post observationinterviews with patients, carers and nurses. Patients weresampled from 12 community team caseloads across threeprimary care organisations. Observations and interviewswere audio-recorded and transcribed. Iterative data analysiscomprised familiarisation, coding and categorisation usingtechniques of constant comparison to generate typologiesof concepts. The study received all necessary ethics andgovernance approvals.Results: 17 nurse/patient encounters were observed (n=11 patients, 8 nurses) with 23 post observation interviews(11 nurse, 12 patient/carer). The discussion of physicalsymptoms, especially pain, formed the core of eachobserved encounter. Nurses primarily focused on medicinesmanagement (dose, frequency, suitability), other approachesto symptom management were infrequent. Nurses wereskilled at using informal conversational assessment styles,but the non-use of formal assessment tools could narrowthe range of issues assessed. Nurses discussed the complexinterplay between physical, psychological and socialsymptoms, but this was not always reflected in care.Conclusion: Symptom management is integral tocommunity nurses work, but there is scope to improve theway this is conducted which could have a positive impacton patient outcomes.Aims: Mixed method research is valuable for complexintervention development and evaluation in palliative andend of life care (P&EoLC) yet we lack guidance on addressingthe challenges of using it in this field. Thus we soughtto identify agreed best practice.Methods: We used the MORECare Transparent ExpertConsultation approach in a workshop with literatureidentifiedexperts in mixed methods and P&EoLC research.Delegates (n=33) heard overviews of challenges in mixedmethods and P&EoLC research. Following discussion,nominal group techniques produced candidate recommendationswhich were de-duplicated and synthesised into 9draft recommendations. These were rated online by workshopdelegates and MORECare advisory group. Descriptivestatistics analysed agreement ratings. Narrative commentswere collected.Results: Highest agreement was with the need to considerrespondent burden given the population in P&EoLC. Mixedmethod research was recommended as useful givenP&EoLC?s outcome measurement challenges. It was recommendedthat trial registers include qualitative componentfields and that implementation studies be encouraged.Further, multi-disciplinary research teams were recommendedand qualitative exploration of respondent participationexperience given the relative infancy of P&EoLCresearch. The need for researcher skill-sets addressing bothmixed method needs and P&EoLC sensitivities wasacknowledged. Awareness of potential therapeutic effects(contamination) from research interviews in interventiontrials was important, as was consideration of theoreticalperspectives from the outset.Conclusions: This is the first attempt to produce guidanceon mixed methods that addresses challenges P&EoLCresearch can present. When designing studies researchersshould consider the expert recommendations. Publicationof these recommendations may encourage uptake andadvance appropriate use of mixed methods in the field.

Book review and educational resource: Death and Dying: A Sociological Introduction, by Glennys Howarth. Cambridge: Polity Press, 2007, pp. 300. ISBN 0—7456—2534—7, £16.99 (pbk)

Research’ – with 18 chapters in total. The book, as the title makes clear, is about wandering as a problematic behaviour. Thus, it’s not going to be a comfortable read for those who subscribe to person-centred approaches and models of care. Many of the interventions set out in the chapters in sections 2–5 are behavioural in approach. Having said this, there is still substantive content that can be applied into a person-centred framework. A significant amount of research and scholarship underpins much of the content of this book. This makes it a book to be studied and not a light read. What the book successfully achieves is to provide a detailed chronicle on the state of research on wandering to date, much of it led by the editors of the book. The suggested priorities for future research are also helpful for anyone considering research in this field. Some people might feel the fact that this book has a very Americanized focus and is health and nursing focused as the major limitations of the book. However, this can be overcome by the approach of the reader. To my mind, the major limitation of the book is that the perspective of the person with dementia is absent, as is much consideration about how practitioners can adapt the frameworks presented in the book. Whilst there were seven chapters in this book on interventions, it was disappointing to find that there are no fully developed protocols for use in practice in a format I felt was readily usable by practitioners. The title of the book suggests it is going to be heavy on protocols and in that sense it is a bit misleading. However, many of the later chapters do offer clinical tips; I feel this is a little lightweight. The book will be essential to those, especially in nursing, concerned with researching or otherwise exploring wandering in any depth, even if not in complete agreement with the behavioural agenda underpinning the content. It seems to me to be an essential book for the gerontological library.