The aim of this paper is to inform and advise researchers on the practical issues associated with involving stroke patients and their carers in research.
The involvement of patients and carers in research is increasingly recognised as important, yet researchers are often unclear on how to do this in practice. This is particularly evident in the field of stroke care, where there is limited information available about how to involve stroke patients and their carers in research effectively, or about the difficulties associated with this.
Experience of developing a patient and carer advisory group.
This paper reflects on the process the authors undertook when developing a stroke patient and darer advisory group as part of a research study exploring the effect of interprofessional team working on the experiences and outcomes after stroke of patients and carers.
This paper discusses the challenges and the benefits of deveong a stroke patient and carer and advisory group, and offers advice to other researchers undertaking a similar process. It aims to provide some practical suggestions that may aid researchers wishing to involve stroke patients and carers in their research.
Stroke patients are likely to be older and have long-term physical disabilities or communication problems that may make their involvement in research more challenging to implement. However, with planning and consideration and the allocation of sufficient time and resources, stroke patients and their carers can be effectively involved, resulting in benefits to the research process and output, and to researchers, patients and carers. IMPLICATIONS FOR PRACTICE/RESEARCH: Pay attention to planning and the practical details of involving stroke patients and their carers in research, ensuring that meetings are arranged in an accessible venue. Use straightforward language in all forms of communication. Listen carefully to their views and perspectives and be prepared to make changes to the study and revise methods if appropriate.
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[Show abstract][Hide abstract] ABSTRACT: This paper explores how a group of people with renal or other vascular conditions collaborated with renal practitioners in undertaking a quality improvement project, the aim of which was to reduce variation in care for people with Stages 3-4 chronic kidney disease.
The patient advisory group supporting the project took a decisive and leading role in the creation of self-management materials and subsequent training for healthcare professionals and patients. The role of the patient advisory group was evaluated informally throughout the project. Confidence amongst the patient advisory group members grew as the project developed.
Clinicians are often unclear on how to involve patients and carers in quality improvement projects, yet it is increasingly recognised as important. In practice, patients with experience of long-term conditions can co-lead quality improvement projects. It is recommended that further evaluation of the role of advisory groups is warranted.
Full-text · Article · Sep 2013 · Journal of Renal Care
[Show abstract][Hide abstract] ABSTRACT: Interprofessional teamwork is seen in healthcare policy and practice as a key strategy for providing safe, efficient and holistic healthcare and is an accepted part of evidence-based stroke care. The impact of interprofessional teamwork on patient and carer experience(s) of care is unknown, although some research suggests a relationship might exist. This study aimed to explore patient and carer perceptions of good and poor teamwork and its impact on experiences of care. Critical incident interviews were conducted with 50 patients and 33 carers in acute, inpatient rehabilitation and community phases of care within two UK stroke care pathways. An analytical framework, derived from a realist synthesis of 13 ‘mechanisms’ (processes) of interprofessional teamwork, was used to identify positive and negative ‘indicators’ of teamwork. Participants identified several mechanisms of teamwork, but it was not a subject most talked about readily. This suggests that interprofessional teamwork is not a concept that is particularly important to stroke patients and carers; they do not readily perceive any impacts of teamwork on their experiences. These findings are a salient reminder that what might be expected by healthcare professionals to be important influences on experience may not be perceived to be so by patients and carers.
No preview · Article · Aug 2014 · Journal of Interprofessional Care