364 research outputs found
Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective
PurposeActive patient engagement is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout the research process. However, guidance for patient engagement (PE) in HRQoL research does not exist, the evidence-base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. This is the first study to explore the values that should underpin PE in contemporary HRQoL research to help inform future good practice guidance. MethodsA modified ‘World Café’ was hosted as a collaborative activity between patient partners, clinicians and researchers: self-nominated conference delegates participated in group discussions to explore values associated with the conduct and consequences of PE. Values were captured via post-it notes and by nominated note-takers. Data were thematically analysed: emergent themes were coded and agreement checked. Association between emergent themes, values and the Public Involvement Impact Assessment Framework were explored. ResultsEighty participants, including 12 patient partners, participated in the 90-min event. Three core values were defined: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants valued the importance of building genuine, collaborative and deliberative relationships—underpinned by honesty, respect, co-learning and equity—and the impact of effective PE on research quality and relevance. Conclusions An explicit statement of values seeks to align all stakeholders on the purpose, practice and credibility of PE activities. An innovative, flexible and transparent research environment was valued as essential to developing a trustworthy evidence-base with which to underpin future guidance for good PE practice.Peer reviewe
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Women's views of continuity of information provided during and after pregnancy: A qualitative interview study
Straightforward transfer of care from pregnancy to the postpartum period is associated with health benefits and is desired by women worldwide. Underpinning this transfer of care is the sharing of information between healthcare professionals and the provision of consistent information to women. In this qualitative study, two aspects of continuity of information were examined; first the information passed on from midwife to health visitor regarding a woman and her baby before the health visitor meets the woman postnatally and second, the consistency of information received by women from these two healthcare professionals (the main healthcare providers during and after pregnancy in England). To be eligible for the study, women had to have had a baby in England within 12 months prior to the interview. Participants also needed to be able to read and speak English and be over 18 years old. Recruitment of participants was via word of mouth and social media. Twenty-nine mothers were interviewed of whom 19 were first time mothers. The interviews took place in the summer and autumn of 2016 and were transcribed verbatim and analysed using Framework Analysis. Two overarching themes were identified: not feeling listened to and information inconsistencies. Women reported little experience of midwives and health visitors sharing information about their care, forcing women to repeat information. This made women feel not listened to and participants recommended that healthcare professionals share information; prioritising information about labour, mental health, and chronic conditions. Women had mixed experiences regarding receiving information from midwives and health visitors, with examples of both consistent and inconsistent information received. To avoid inconsistent information, joint appointments were recommended. Findings from this study clearly suggest that better communication pathways need to be developed and effectively implemented for midwives and health visitors to improve the care that they provide to women
Stat3 is required to maintain the full differentiation potential of mammary stem cells and the proliferative potential of mammary luminal progenitors.
Stat3 has a defined role in mammary gland where it is a critical mediator of cell death during post-lactational regression. On the other hand, Stat3 is required for the self-renewal of embryonic stem cells and is sufficient for the induction of a naïve pluripotent state in epiblast stem cells. Mammary stem cells (MaSCs) have a high capacity for self-renewal and can grow robustly in transplantation experiments in vivo. However, a role for Stat3 in MaSCs has not been investigated. Here we show that depletion of Stat3 from basal cells results in reduced primary transplantation efficiency and diminishes the potential to generate ductal, but not alveolar, outgrowths. In addition, Stat3 is required for maximal proliferation of luminal progenitors
Low intensity shockwave treatment modulates macrophage functions beneficial to healing chronic wounds
Acknowledgments: We acknowledge the University of Aberdeen Microscopy and Histology Facility and the qPCR facility for use of facilities and advice. We acknowledge Ehab Husain for scoring the patient wound biopsies. Funding: This research was funded by NHS Grampian Endowments, grant number 17/004 and by personal funding from JSH.Peer reviewedPublisher PD
Attributes of Successful Graduate Students: Facilitating Self-Efficacy and Persistence
Colleges and universities struggle with declining program completion rates among graduate students. While the attrition rate of graduate students declined over the last five years in the United States, the issue of graduate student persistence continues to be challenging. This study identifies and explores reported characteristics: expectations, motivation, self-discipline, emotional intelligence, and passion for learning. Graduate students studying educational leadership conducted a qualitative inquiry to approach theoretical comprehension of the intrinsic motivations, expectations, and major attributes of successful graduate students. Examining these areas provides a deeper understanding of success achieved by graduate students
Learning to work together - lessons from a reflective analysis of a research project on public involvement
Abstract
Background Patient and public involvement (PPI) is now an expectation of research
funders, in the UK, but there is relatively little published literature on what this means in
practice – nor is there much evaluative research about implementation and outputs.
Policy literature endorses the need to include PPI representation at all stages of
planning, performing and research dissemination, and recommends resource allocation
to these roles; but details of how to make such inputs effective in practice are less
common. While literature on power and participation informs the debate, there are
relatively few published case studies of how this can play out through the lived experience of PPI in research; early findings highlight key issues around access to
knowledge, resources, and interpersonal respect. This article describes the findings of a
case study of PPI within a study about PPI in research.
Methods The aim of the study was to look at how the PPI representatives’ inputs had
developed over time, key challenges and changes, and lessons learned. We used realist
evaluation and normalisation process theory to frame and analyse the data, which was
drawn from project documentation, minutes of meetings and workshops, field notes
and observations made by PPI representatives and researchers; documented feedback
after meetings and activities; and the structured feedback from two formal reflective
meetings.
Findings Key findings included the need for named contacts who support, integrate
and work with PPI contributors and researchers, to ensure partnership working is
encouraged and supported to be as effective as possible. A structure for partnership
working enabled this to be enacted systematically across all settings. Some individual
tensions were nonetheless identified around different roles, with possible implications
for clarifying expectations and deepening understandings of the different types of PPI
contribution and of their importance. Even in a team with research expertise in PPI, the
data showed that there were different phases and challenges to ‘normalising’ the PPI
input to the project. Mutual commitment and flexibility, embedded through
relationships across the team, led to inclusion and collaboration.
Conclusion Work on developing relationships and teambuilding are as important for
enabling partnership between PPI representatives and researchers as more practical
components such as funding and information sharing. Early explicit exploration of the
different roles and their contributions may assist effective participation and satisfaction
Reflections and Experiences of a Co-Researcher involved in a Renal Research Study
Background Patient and Public Involvement (PPI) is seen as a prerequisite for health research. However, current Patient and public involvement literature has noted a paucity of recording of patient and public involvement within research studies. There have been calls for more recordings and reflections, specifically on impact. Renal medicine has also had similar criticisms and any reflections on patient and public involvement has usually been from the viewpoint of the researcher. Roles of patient and public involvement can vary greatly from sitting on an Advisory Group to analysing data. Different PPI roles have been described within studies; one being a co-researcher. However, the role of the co-researcher is largely undefined and appears to vary from study to study. Methods The aims of this paper are to share one first time co-researcher's reflections on the impact of PPI within a mixed methods (non-clinical trial) renal research study. A retrospective, reflective approach was taken using data available to the co-researcher as part of the day-to-day research activity. Electronic correspondence and documents such as meeting notes, minutes, interview thematic analysis and comments on documents were re-examined. The co-researcher led on writing this paper. Results This paper offers a broad definition of the role of the co-researcher. The co-researcher reflects on undertaking and leading on the thematic analysis of interview transcripts, something she had not previously done before. The co-researcher identified a number of key themes; the differences in time and responsibility between being a coresearcher and an Advisory Group member; how the role evolved and involvement activities could match the co-researchers strengths (and the need for flexibility); the need for training and support and lastly, the time commitment. It was also noted that it is preferable that a co-researcher needs to be involved from the very beginning of the grant application. Conclusions The reflections, voices and views of those undertaking PPI has been largely underrepresented in the literature. The role of co-researcher was seen to be rewarding but demanding, requiring a large time commitment. It is hoped that the learning from sharing this experience will encourage others to undertake this role, and encourage researchers to reflect on the needs of those involved.Peer reviewedFinal Published versio
A SHARED study the benefits and costs of setting up a health research study involving lay coresearchers and how we overcame the challenges
YesBackground:
Involving patients and the public in all stages of research has been the focus of the SHARED study. Patient and public involvement (PPI) is an important strategic priority
for the Department of Health and funders such as the National Institute for Health Research. The aim of this paper is to describe the benefits, challenges and costs
involved in setting up the research study with lay members as part of the research team. The study focused on developing service user-led
recommendations for people
with memory loss and their carers, on discharge from acute hospital to the community.
Methods:
This began with a discussion of an initial research idea with a lay group of carers and people living with dementia. Once funded, approval was sought from the Research
Ethics Committee and NHS Trusts to conduct the research including the active involvement of lay co-researchers.
Finally, to recruit, train and pay lay co-researchers
in
their role.
Results:
The benefits of PPI have included developing ideas which are important to people living with memory loss; support for PPI received from the funders and research ethics
committee, high levels of interest from volunteer groups, and lasting enthusiasm from many of the co-researchers.
Organisational challenges were met in the
requirement for research passports and with payment methods for the co-researchers.
Training was beneficial but incurred extra costs for repeated training days.
Discussion:
Overall the benefits outweighed the challenges which were overcome to varying degrees. The lay co-researchers
gained membership of a study group and a beneficial
partnership developed with the third sector. The biggest challenge was in overcoming the differences in approach to lay co-researchers
between NHS Trusts.
Organisational culture has been slow to incorporate PPI and this has not yet been fully addressed. It has the potential to delay the start of projects, affect recruitment
time, incur extra research costs and disadvantage PPI
Involving people with diabetes and the wider community in diabetes research: a realist review protocol.
BACKGROUND: Patient and public involvement in diabetes research is now actively encouraged in different countries because it is believed that involving people with experience of the condition will improve the quality and relevance of the research. However, reviews of patient involvement have noted that inadequate resources, patients' and communities' lack of research knowledge, and researchers' lack of skills to involve patients and communities in research may present significant contextual barriers. Little is known about the extent of patient/community involvement in designing or delivering interventions for people with diabetes. A realist review of involvement will contribute to assessing when, how and why involvement works, or does not work, to produce better diabetes interventions. METHODS/DESIGN: This protocol outlines the process for conducting a realist review to map how patients and the public have been involved in diabetes research to date. The review questions ask the following: How have people with diabetes and the wider community been involved in diabetes research? What are the characteristics of the process that appear to explain the relative success or failure of involvement? How has involvement (or lack of involvement) in diabetes research influenced the development and conduct of diabetes research? The degree of support in the surrounding context will be assessed alongside the ways in which people interact in different settings to identify patterns of interaction between context, mechanisms and outcomes in different research projects. The level and extent of the involvement will be described for each stage of the research project. The descriptions will be critically reviewed by the people with diabetes on our review team. In addition, researchers and patients in diabetes research will be asked to comment. Information from researcher-patient experiences and documents will be compared to theories of involvement across a range of disciplines to create a mid-range theory describing how involvement (or lack of involvement) in diabetes research influences the development and conduct of diabetes research
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