Moving beyond the first response phenomenon

Malm, Camilla; Andersson, Stefan; Jönson, Håkan; Magnusson, Lennart; Hanson, Elizabeth

doi:10.1108/ijssp-05-2019-0091

Cited by 11 publications

(11 citation statements)

References 34 publications

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“…This finding is particularly relevant for parents and carers, as research indicates that carers lack peer support groups and face difficulties accessing services for the person they care for, as well as for themselves (Rand and Malley, 2014). Malm et al (2019) explore carers' views and experiences of involvement in research, finding that their involvement provided a 'sense of community', and that spending time with other carers with similar experiences provided a sense of relief and a therapeutic element.…”

Section: Discussionmentioning

confidence: 99%

The benefits of continuing patient and public involvement as part of a randomised controlled trial during the Covid-19 global pandemic

et al. 2023

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Patient and public involvement (PPI) in clinical research strengthens the quality and relevance of research, and has been crucial to ensure that researchers continue to investigate relevant and important topics during the global Covid-19 pandemic. The MICE (Mental Health Intervention for Children with Epilepsy) randomised controlled trial relies upon PPI to steer the direction and delivery of the trial, and the PPI Research Advisory Group (RAG) adapted to remote online meetings during the pandemic. This article first describes how the PPI RAG supported the research trial during the course of the pandemic, particularly with key trial stages of recruitment, retention and follow-up. It considers how the PPI tasks were adapted to ensure that they remained meaningful throughout this period, particularly for children and young people. Second, the article explores the acceptability of PPI in research using teleconferencing methods, via a co-produced survey of the PPI group members. Survey results indicated that, while participants valued face-to-face meetings, having remote PPI meetings was preferable to having nothing. There was some suggestion that teleconferencing platforms make it challenging for reserved members of the group, and for children, to contribute. Our findings emphasise the importance of continuing PPI even when circumstances are sub-optimal. We hope that our findings will contribute to the wider conversation about what makes PPI effective, particularly in a digital world.

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Section: Discussionmentioning

confidence: 99%

The benefits of continuing patient and public involvement as part of a randomised controlled trial during the Covid-19 global pandemic

et al. 2023

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“…However, health systems are complex and consist of several different professionals interacting with each other and the older people and their relatives. Hence, it is important to also investigate the involvement of professionals from different levels, such as micro-, meso-, exo-, and macro-levels [15], and also to investigate the possibility of involving older people [56] as well as carers [57] in research. Furthermore, "systems thinking" illustrates the complexity of diffusion, dissemination, and exchange of knowledge [58] and stresses the importance of collaboration between researchers and professionals, of having multidisciplinary teams, and of involving people from outside academia in research [59].…”

Section: Challenges For Professionalsmentioning

confidence: 99%

Involvement of professionals in research: knowledge integration, development of practice, and challenges: a group concept mapping study

Laustsen

Petersson

Westergren

et al. 2021

Health Res Policy Sys

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Background Research and practice are often considered as two different worlds with different values, which causes a gap between them. Involving professionals such as practitioners, managers, decision-makers, and policy-makers in research on ageing and health might address the gap between research and practice, strengthen the healthcare system, and increase older people’s possibilities for healthy ageing. The aim of this study was to conceptualize professionals’ involvement in research on ageing and health from the perspective of the professionals themselves. Methods A mixed method called group concept mapping was used. Professionals with experience being involved in research on ageing and health participated in qualitative data collection through brainstorming sessions (n = 29) and by sorting statements (n = 29). Afterwards, they participated in a quantitative data collection by rating statements according to how much each statement strengthened practice (n = 30) and strengthened research (n = 28). Multidimensional scaling analysis and hierarchical cluster analysis were used to conduct quantitative analysis. Latent qualitative analysis was also conducted. Results Analysis resulted in eight clusters which illustrated conceptual areas of professionals’ involvement in research projects. The qualitative latent construct of the cluster map resulted in the themes: challenges for professionals; prerequisites and professionals’ learning can contribute to development of practice; and integrated knowledge benefits older people. There was a strong correlation between what strengthens practice and research (r = 0.92). Conclusions This study illustrates conceptual areas of professionals’ own perspectives on what their involvement in research can lead to. Their involvement may lead to knowledge being integrated, and the professionals may learn through their involvement, which can contribute to the development of practice. However, there can also be challenges that need to be handled when professionals are involved in research. The study can be useful for improving the understanding of and actual involvement of professionals in research, and for optimizing the involvement of professionals.

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“…From the first author's work in the area of carer involvement in research thus far [33,34] it can be argued that involvement of carers in research brings an added richness and diversity of knowledge and experiences to health and social care research. Exploring and reporting about researchers' positions and views towards carer involvement in research could help to gain a more indepth understanding of carer involvement in health and social care research.…”

Section: Introductionmentioning

confidence: 99%

A balance between putting on the researcher’s hat and being a fellow human being: a researcher perspective on informal carer involvement in health and social care research

Malm

Jönson

Andersson

et al. 2022

Health Res Policy Sys

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Background Public involvement in health and social care research is increasingly prioritized by policy-makers and research funders. Often, the impact of the involvement is described in terms of how it has contributed to the research outcomes and how it has affected the involved members of the public. There is a dearth of studies reporting from the perspective of researchers themselves of having involved members of the public in their research. Nevertheless, there is a general expectation for researchers to accept and embrace public involvement in research. This study aims to explore researchers’ views of involving informal carers in health and social care research. Methods Eleven individual in-depth interviews with researchers in the fields of social work, caring science, health science and medical science constituted the dataset of this qualitative study, inspired by discourse psychology. Results The qualitative data analysis resulted in two interpretative repertoires describing researchers’ views of involving informal carers in research, “Philosophy of Science” and “Personal relationships and growth”. Both repertoires need to be recognized; however, as of today, the Philosophy of Science repertoire is more acknowledged, while the second repertoire describing empathy, relationships and emotions may be viewed as the researcher being “unprofessional”. Further, the findings highlighted the dual perspective of being a researcher and a carer as creating opportunities for growth on the part of the researcher, on both a professional and a personal level. Conclusions Researchers and their research work would benefit from acknowledging, discussing and reporting both interpretative repertoires in their publications, as well as recognizing the benefit of dialectal positions, for example, having a dual perspective as both a researcher and an informal carer.

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Moving beyond the first response phenomenon

Cited by 11 publications

References 34 publications

The benefits of continuing patient and public involvement as part of a randomised controlled trial during the Covid-19 global pandemic

The benefits of continuing patient and public involvement as part of a randomised controlled trial during the Covid-19 global pandemic

Involvement of professionals in research: knowledge integration, development of practice, and challenges: a group concept mapping study

A balance between putting on the researcher’s hat and being a fellow human being: a researcher perspective on informal carer involvement in health and social care research

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