Patient reported outcome measures for measuring dignity in palliative and end of life care: a scoping review.

BACKGROUND: Patient reported outcome measures are frequently used standard questionnaires or tools designed to collect information from patients regarding their health status and care. Their use enables accurate and relevant insight into changes in health, quality of life, and symptom severity to be acquired. The purpose of this scoping review was to identify PROMs that had been subject to rigorous development and were suitable for use in palliative and end of life care for clinical practice and/or research purposes. The review had a specific focus on measures which could be used to assess perceptions of dignity in these contexts. METHODS: A scoping review of English-language papers published between 2005 and 2015. Searches were devised in conjunction with an information science specialist and were undertaken in Medline; PsycINFO; EMBASE; CINAHL; Social Science Citation Index; ASSIA; CENTRAL; CDSR; DARE; HTA; Oxford PROM Bibliography; PROQOLID, using dignity related terms such as personhood; dignity or dignified; patient-centred care; which were linked (via the Boolean operator "AND") to care-related terms such as terminal care; hospice care; palliative care; end of life. Papers were assessed against inclusion criteria and appraised for quality. RESULTS: The search strategy produced an initial 7845 articles. After three rounds of eligibility assessment, eight articles discussing eight patients reported outcome measures were found to meet the inclusion criteria and were included in the final review. These underwent a thorough critical appraisal process. All seven studies were empirical research focused on the development and testing of a PROM. CONCLUSIONS: The eight patient reported outcome measures had all undergone some psychometric testing, and covered dignity aspects suggesting that they could be considered for use for research purposes to assess dignity. There were also indications that some could be implemented into a clinical setting. However, each measure had limitations and scope for further development.

Unmet care needs in people living with advanced cancer: a systematic review.

PURPOSE: The support needs of cancer patients vary according to the phase of their cancer journey. Recent developments in healthcare are such that the advanced cancer phase is increasingly experienced as a chronic illness phase, with consequent changes in patient support needs. Understanding these needs, and identifying areas of unmet need, can enable us to develop services that are more adequate to the task of supporting this population. METHODS: We conducted a systematic search of four electronic databases to identify studies examining the unmet needs of people living with advanced cancer. Relevant data were extracted and synthesised; meta-analyses were conducted to obtain pooled estimates for prevalence of needs. RESULTS: We identified 23 studies (4 qualitative) for inclusion. Unmet needs were identified across a broad range of domains, with greatest prevalence in informational (30-55 %), psychological (18-42 %), physical (17-48 %), and functional (17-37 %) domains. There was considerable heterogeneity amongst studies in terms of methods of assessment, coding and reporting of needs, respondent characteristics, and appraised study quality. CONCLUSIONS: Heterogeneity made it difficult to compare across studies and inflated confidence intervals for pooled estimates of prevalence-we need standardised and comprehensive approaches to assessment and reporting of unmet needs to further our understanding. Nonetheless, the review identified prominent needs across a range of (interacting) experiential domains. Moreover, by focussing on unmet needs for support, we were able to extrapolate potential implications for service development.

Exploring the barriers to and facilitators of implementing research into practice.

District and community nursing roles have changed rapidly in recent years. Community nurses are increasingly being tasked with carrying out multiple roles, which require them to put research into practice and use evidence-based tools and interventions. The implementation of interventions and tools needs to be developed from empirical research, requiring evidence, to be translated into practice. However, this process may be compromised or enhanced by a number of factors. This exploratory, descriptive qualitative study sought to identify barriers and facilitators to community nurses implementing research into practice. Four focus groups were conducted with registered community nurses and district nurses (n=22). Analysis identified four main themes: keeping up to date with evidence; using a clinical tool; education/training and implementation. Findings suggest that there are barriers at a personal, professional and organisational level. Strategies are suggested to overcome these obstacles.

The experiences of patients and carers in the daily management of care at the end of life.

BACKGROUND: Home is the preferred location for most people with an advanced disease and at the end of life. A variety of care professionals work in community settings to provide support to this population. Patients and their spouses, who also care for them (spouse-carers), are rarely accompanied by these sources of support at all times, and have to manage independently between their contact with care professionals. AIM: To explore how patients and spouse-carers manage their involvement with care professionals in the community setting. METHOD Interpretive phenomenology informs the design of the research, whereby 16 interviews were conducted with the patients and spouse-carers. Interviews were recorded and transcribed verbatim. Data were analysed using phenomenological techniques including template analysis. FINDINGS: Patients and spouse-carers were interdependent and both parties played a role in co-ordinating care and managing relationships with professional care providers. The patients and spouse-carers actively made choices about how to manage their situation, and develop and modify managing strategies based on their experiences. CONCLUSIONS: When daily management is effective and care professionals acknowledge the dyadic nature of the patient and spouse-carer relationship, people have confidence in living with advanced disease.

Community palliative care clinical nurse specialists: a descriptive study of nurse-patient interactions.

BACKGROUND: With an ageing population and changes to the UK process of commissioning health-care services, it is important that the role of the community palliative care clinical nurse specialist (CPC-CNS) is better understood. AIM: This study aimed to describe CPC-CNS activities during interactions with patients. METHODS: Four CPC-CNSs were observed and audio-recorded during interactions with 34 patients. The data was assessed qualitatively using thematic analysis. RESULTS: An enormous breadth of activities were observed, within a framework of assessment, planning, intervention, and evaluation. Cross-cutting themes were real-time decision making, leadership, ability to respond to and coordinate complex and varied situations, and communication techniques. Data saturation was not achieved. CONCLUSION: CPC-CNSs provide multifaceted care, requiring wide-ranging knowledge to enable them to act as liaison points in a complex health service, respond independently to the fluctuating needs of patients, and provide effective advance care planning, particularly to those with advanced disease, multi-morbidity, and frailty.

The Pictor technique: a method for exploring the experience of collaborative working.

Collaborative working is a crucial part of contemporary health and social care. Researching the experiences of those involved--as professionals, patients, or carers--is challenging, given the complexity of many cases and the taken-for-granted nature of roles and identities in relation to it. In this article we introduce the Pictor technique for exploring experiences of collaborative working. This is a visual technique in which participants construct a representation of roles and relationships in a particular case using arrow-shaped adhesive notes or cards. The chart so produced helps the participant tell the story of his or her experience and serves as a focus for further exploration with the researcher. We describe the background to Pictor and illustrate its use with professionals, patients, and carers, drawing on recent and current research. We examine how Pictor relates to other visual methods, and conclude by considering how the technique might be developed in the future.

Applying the Pictor technique to research interviews with people affected by advanced disease.

AIM: To outline some of the challenges facing people affected by advanced disease who want to participate in research interviews, and to present Pictor, a method that can help manage some of these challenges. BACKGROUND: Patients and lay-carers may have many issues that affect their ability to participate in qualitative research interviews. These issues can include the physical effects of disease, its treatments and emotional distress. DATA SOURCE: An ongoing study exploring experiences of advanced disease when multiple agencies are involved. REVIEW METHODS: The Pictor technique involves the creation of a chart that supports the exploration of the participant's experience of roles and relationships. The technique has previously been used with health professionals and this paper reports on its use with lay-participants. DISCUSSION: The technique accommodates some disease-related difficulties which helped people with advanced disease to reflect on their experiences of primary care service provision. Participants then communicated these experiences with the researcher. CONCLUSION: Pictor is a tool that can help manage some of the difficulties experienced by people with advanced disease who are participating in research interviews. This has benefits for researchers and participants.

Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers.

BACKGROUND: Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers. OBJECTIVES: To produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers. PROCESS OF DEVELOPMENT: Participatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers. FINAL TRAINING PROGRAMME: The outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers.The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator's notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable. CONCLUSION: The programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.

Meeting the needs of carers of people at the end of life.

Carers have a vital role in end of life care in all settings. They are essential in enabling people to live at home at the end of their lives. Carers give and receive care, and have a range of support needs related to this complex role. This article explores the context of caring at the end of life and considers the experience of carers, in particular those who have a non-professional and unpaid relationship with someone who is at the end of life, and the support they require.