Beth Hardy

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.

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.

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.

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.

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

BackgroundPatient 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.MethodsA 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.ResultsThe 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.ConclusionsThe 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.