scholarly journals Combining qualitative research with PPI: reflections on using the person-based approach for developing behavioural interventions

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Ingrid Muller ◽  
Miriam Santer ◽  
Leanne Morrison ◽  
Kate Morton ◽  
Amanda Roberts ◽  
...  
Keyword(s):  
Qualitative Research ◽  
Behaviour Change ◽  
Public Involvement ◽  
Behavioural Change ◽  
Target Population ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Health Interventions ◽  
Qualitative Approaches ◽  
Wide Range

Abstract Background The value and importance of qualitative research and Patient and Public Involvement (PPI) for developing complex health interventions is widely recognised. However, there is often confusion between the two, with researchers relying on just one of these approaches, rather than using the two alongside one another. Methods The Person-Based Approach (PBA) to developing health-related behaviour change interventions adapts and integrates methods from user-centred design and qualitative research. The PBA involves qualitative research at multiple stages of interventions to ensure they are acceptable, feasible, meaningful, and optimally engaging to the people who will use them. The qualitative research is carried out with research participants from a target population, who have no prior or continuing involvement in the wider research process and see the intervention from a fresh perspective. This enables in-depth understanding of the views and experiences of a wide range of target users and the contexts within which they engage with behavioural change. PPI in research is carried out with or by members of the public and is a key part of the research process. PPI contributors are involved at all stages of research design and interpretation. PPI provides input into interventions as members of the research team alongside other stakeholders, such as health professionals and behaviour change experts. Results We advocate using qualitative research alongside PPI at all stages of intervention planning, development, and evaluation. We illustrate this with examples from recent projects developing complex health interventions, highlighting examples where PPI and PBA have pulled in different directions and how we have approached this, how PPI have helped optimise interventions based on PBA feedback, and how we have engaged PPI in community settings. Conclusions PPI provides a valuable alternative to the traditional researcher-led approaches, which can be poorly matched to the needs of target users. Combining PPI with the PBA can help to create optimally engaging interventions by incorporating a greater diversity of feedback than would have been possible to achieve through PPI or qualitative approaches alone.

scholarly journals Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Renske Visser ◽  
Alyce-Ellen Barber ◽  
Anthony X ◽  
Sue Wheatcroft ◽  
Philip Mullen ◽  
...  
Keyword(s):  
Lived Experience ◽  
Cancer Care ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Third Party ◽  
Working Relationships ◽  
Care Needs ◽  
Academic Researchers ◽  
No Harm Principle

Abstract Background Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.

scholarly journals Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review (Preprint)

2021 ◽  
Author(s):  
Ursula Ellis ◽  
Vanessa Kitchin ◽  
Mathew Vis-Dunbar
Keyword(s):  
Public Involvement ◽  
Geographic Location ◽  
Patient And Public Involvement ◽  
Advisory Council ◽  
Rapid Review ◽  
Medline Search ◽  
Ovid Medline ◽  
Cochrane Database ◽  
Wide Range ◽  
Scoping Reviews

BACKGROUND Patient and public involvement (PPI) in health research is an area of growing interest. Several studies have examined the use and impact of PPI in knowledge syntheses (systematic, scoping, and related reviews); however, few studies have focused specifically on the patient or public coauthorship of such reviews. OBJECTIVE This study seeks to identify published systematic and scoping reviews coauthored by patient or public partners and examine the characteristics of these coauthored reviews, such as which journals publish them, geographic location of research teams, and terms used to describe patient or public partner authors in affiliations, abstracts, or article text. METHODS We searched CAB Direct, CINAHL, Cochrane Database of Systematic Reviews (Ovid), Embase (Ovid), MEDLINE (Ovid), and PsycInfo from 2011 to May 2019, with a supplementary search of several PPI-focused databases. We refined the Ovid MEDLINE search by examining frequently used words and phrases in relevant search results and searched Ovid MEDLINE using the modified search strategy in June 2020. RESULTS We screened 13,998 results and found 37 studies that met our inclusion criteria. In line with other PPI research, we found that a wide range of terms were used for patient and public authors in author affiliations. In some cases, partners were easy to identify with titles such as patient, caregiver or consumer representative, patient partner, expert by experience, citizen researcher, or public contributor. In 11% (n=4) of studies, they were identified as members of a panel or advisory council. In 27% (n=10) of articles, it was either impossible or difficult to tell whether an author was a partner solely from the affiliation, and confirmation was found elsewhere in the article. We also investigated where in the reviews the partner coauthors’ roles were described, and when possible, what their specific roles were. Often, there was little or no information about which review tasks the partner coauthors contributed to. Furthermore, only 14% (5/37) of reviews mentioned patient or public involvement as authors in the abstract; involvement was often only indicated in the author affiliation field or in the review text (most often in the methods or contributions section). CONCLUSIONS Our findings add to the evidence that searching for coproduced research is difficult because of the diversity of terms used to describe patient and public partners, and the lack of consistent, detailed reporting about PPI. For better discoverability, we recommend ensuring that patient and public authorships are indicated in commonly searched database fields. When patient and public-authored research is easier to find, its impact will be easier to measure.

Qualitative, Quantitative, and Mixed Methods Research Sampling Strategies

Education ◽  
2020 ◽  
Author(s):  
Timothy C. Guetterman
Keyword(s):  
Qualitative Research ◽  
Mixed Methods ◽  
Mixed Methods Research ◽  
Quantitative Research ◽  
Target Population ◽  
Research Process ◽  
Sampling Strategies ◽  
Quantitative And Qualitative Research ◽  
Purposeful Sampling ◽  
Relationship Of

Sampling is a critical, often overlooked aspect of the research process. The importance of sampling extends to the ability to draw accurate inferences, and it is an integral part of qualitative guidelines across research methods. Sampling considerations are important in quantitative and qualitative research when considering a target population and when drawing a sample that will either allow us to generalize (i.e., quantitatively) or go into sufficient depth (i.e., qualitatively). While quantitative research is generally concerned with probability-based approaches, qualitative research typically uses nonprobability purposeful sampling approaches. Scholars generally focus on two major sampling topics: sampling strategies and sample sizes. Or simply, researchers should think about who to include and how many; both of these concerns are key. Mixed methods studies have both qualitative and quantitative sampling considerations. However, mixed methods studies also have unique considerations based on the relationship of quantitative and qualitative research within the study.

scholarly journals Patient and Public Involvement in Sexual and Reproductive Health: Time to Properly Integrate Citizen’s Input into Science

2020 ◽  
Vol 17 (21) ◽  
pp. 8048
Author(s):  
Miguel García-Martín ◽  
Carmen Amezcua-Prieto ◽  
Bassel H Al Wattar ◽  
Jan Stener Jørgensen ◽  
Aurora Bueno-Cavanillas ◽  
...  
Keyword(s):  
Reproductive Health ◽  
Health Research ◽  
Sexual And Reproductive Health ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Research Subjects ◽  
Societal Benefits ◽  
Participation Of Women ◽  
Quality Tools

Evidence-based sexual and reproductive health is a global endeavor without borders. Inter-sectorial collaboration is essential for identifying and addressing gaps in evidence. Health research funders and regulators are promoting patient and public involvement in research, but there is a lack of quality tools for involving patients. Partnerships with patients are necessary to produce and promote robust, relevant and timely research. Without the active participation of women as stakeholders, not just as research subjects, the societal benefits of research cannot be realized. Creating and developing platforms and opportunities for public involvement in sexual and reproductive health research should be a key international objective. Cooperation between healthcare professionals, academic institutions and the community is essential to promote quality research and significant developments in women’s health. This cooperation will be improved when involvement of citizens in the research process becomes standard.

scholarly journals How to engage patient partners in health service research: a scoping review protocol

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Sarah Cecilie Tscherning ◽  
Hilary Louise Bekker ◽  
Tina Wang Vedelø ◽  
Jeanette Finderup ◽  
Lotte Ørneborg Rodkjær
Keyword(s):  
Health Service ◽  
Narrative Analysis ◽  
Scoping Review ◽  
Health Service Research ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Service Research ◽  
Review Protocol ◽  
The Impact

Abstract Background The patients’ and the carers’ roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out with or by patient partners is an increasingly accepted component of health service research in many countries, but how researchers can best approach engaging patient partners in the research process is still not clear. There is a need for guidance to support researchers when engaging patient partners and assess how such engagement impacts on research outputs. The aim of this paper is to present a protocol for a scoping review of published literature on how to engage patient partners effectively in the research process. Investigating this aim implies examining: a) how to engage patient partners in the research process; and b) what impact such engagement has on research outputs. This scoping review protocol is the first to examine how to engage patient partners effectively across different diseases and research areas. Methods A scoping review using a systematic process informed by Arksey and O’Malley’s framework will be carried out across six electronic databases using the terms ‘patient participation’, ‘community participation’, ‘research personnel’, ‘patient and public involvement’ and ‘patient partner’. We will include published reviews concerning engagement of patient partners in the research process in healthcare settings, and exclude studies assessing engagement in treatment and healthcare. Two reviewers will screen the titles and abstracts of articles independently for inclusion, and extract data from articles that meet the inclusion criteria. Where there is disagreement, a third reviewer will be consulted to facilitate consensus. The data elicited will include: author and study characteristics; research aims and findings; description of patient engagement in the research process; and assessment impact. Descriptive data and narrative analysis will synthesize findings. Discussion To understand how to engage patient partners effectively in the research process, the impact of such engagement must be taken into consideration to give a qualified suggestion for future guidance. We hope this review will raise awareness of which common elements constitute effective engagement of patient partners in the research process.

scholarly journals Moving Toward Third-Space: Reflections on the Tensions with/in Qualitative Research / Vers le troisième espace : réflexions sur les tensions en recherche qualitative

2019 ◽  
Vol 46 (1) ◽  
pp. 72-84
Author(s):  
Sheri R. Klein
Keyword(s):  
Qualitative Research ◽  
Third Space ◽  
Research Process ◽  
Dialectical Tensions ◽  
Recherche Qualitative ◽  
Compte Rendu ◽  
Art Educators ◽  
Wide Range ◽  
Paradox Theory ◽  
Reflective Essay

Abstract: This reflective essay examines some of the dialectical tensions that can emerge within qualitative research and that can result in internal and external conflicts and a wide range of emotions and feelings for researchers. It is important to notice and examine these tensions as many art educators use qualitative research methods. Subsequently, more attention is needed to recognizing research as an emotional, and conflicted journey. The Japanese aesthetic of wabi-sabi and paradox theory offers applicable insights into the qualitative research process. Approaches to ‘qualitative thinking’ and artistic and contemplative methods are explored with the aim of reflexivity and disrupting dialectical thinking in qualitative research.Keywords: Qualitative research; Dialectical tensions; Third Space; Rhizomatic thinking. Résumé : Ce compte rendu réflexif se penche sur certaines des tensions dialectiques susceptibles d’apparaître en recherche qualitative, de mener à des conflits internes et externes et de susciter chez le chercheur une vaste gamme d’émotions et de sentiments. Il importe de prendre note de ces tensions et de s’y attarder car de nombreux éducateurs emploient concepts et méthodes de recherche qualitative. Il faut par conséquent se préoccuper davantage de la recherche qualitative en tant que processus émotionnel et souvent conflictuel. Cette enquête se base sur les travaux de chercheurs multidisciplinaires selon lesquels le concept « d’entre-deux » et de « troisième espace » perturbe fondamentalement la pensée binaire. D’autres stratégies sont par ailleurs introduites pour appuyer la pensée rationnelle dans le domaine de la recherche qualitative et la création de cultures de recherche rhizomatiques.Mots-clés : recherche qualitative, tensions dialectiques, troisième espace, pensée rhizomatique. 

scholarly journals Optimising an intervention to support home-living older adults at risk of malnutrition: a qualitative study

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Liz Payne ◽  
Daniela Ghio ◽  
Elisabeth Grey ◽  
Joanna Slodkowska-Barabasz ◽  
Philine Harris ◽  
...  
Keyword(s):  
Older Adults ◽  
At Risk ◽  
Public Involvement ◽  
Target Population ◽  
High Energy ◽  
Patient And Public Involvement ◽  
Community Dwelling ◽  
Good Nutrition ◽  
Intervention Content ◽  
The Uk

Abstract Background In the UK, about 14% of community-dwelling adults aged 65 and over are estimated to be at risk of malnutrition. Screening older adults in primary care and treating those at risk may help to reduce malnutrition risk, reduce the resulting need for healthcare use and improve quality of life. Interventions are needed to raise older adults’ risk awareness, offer relevant and meaningful strategies to address risk and support general practices to deliver treatment and support. Methods Using the Person-based Approach and input from Patient and Public Involvement representatives, we developed the ‘Eat well, feel well, stay well’ intervention. The intervention was optimised using qualitative data from think aloud and semi-structured process evaluation interviews with 23 and 18 older adults respectively. Positive and negative comments were extracted to inform rapid iterative modifications to support engagement with the intervention. Data were then analysed thematically and final adjustments made, to optimise the meaningfulness of the intervention for the target population. Results Participants’ comments were generally positive. This paper focuses predominantly on participants’ negative reactions, to illustrate the changes needed to ensure that intervention materials were optimally relevant and meaningful to older adults. Key factors that undermined engagement included: resistance to the recommended nutritional intake among those with reduced appetite or eating difficulties, particularly frequent eating and high energy options; reluctance to gain weight; and a perception that advice did not align with participants’ specific personal preferences and eating difficulties. We addressed these issues by adjusting the communication of eating goals to be more closely aligned with older adults’ beliefs about good nutrition, and acceptable and feasible eating patterns. We also adjusted the suggested tips and strategies to fit better with older adults’ everyday activities, values and beliefs. Conclusions Using iterative qualitative methods facilitated the identification of key behavioural and contextual elements that supported engagement, and issues that undermined older adults’ engagement with intervention content. This informed crucial revisions to the intervention content that enabled us to maximise the meaningfulness, relevance and feasibility of the key messages and suggested strategies to address malnutrition risk, and therefore optimise engagement with the intervention and the behavioural advice it provided.

scholarly journals Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study

BMJ Open ◽  
2018 ◽  
Vol 8 (3) ◽  
pp. e020452 ◽  
Author(s):  
Amy Price ◽  
Sara Schroter ◽  
Rosamund Snow ◽  
Melissa Hicks ◽  
Rebecca Harmston ◽  
...  
Keyword(s):  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Research Papers ◽  
The Public ◽  
Reporting Requirements ◽  
Grant Applications ◽  
Before And After ◽  
Low Levels ◽  
Optional Extra

ObjectivesWhile documented plans for patient and public involvement (PPI) in research are required in many grant applications, little is known about how frequently PPI occurs in practice. Low levels of reported PPI may mask actual activity due to limited PPI reporting requirements. This research analysed the frequency and types of reported PPI in the presence and absence of a journal requirement to include this information.Design and settingA before and after comparison of PPI reported in research papers published inThe BMJbefore and 1 year after the introduction of a journal policy requiring authors to report if and how they involved patients and the public within their papers.ResultsBetween 1 June 2013 and 31 May 2014,The BMJpublished 189 research papers and 1 (0.5%) reported PPI activity. From 1 June 2015 to 31 May 2016, following the introduction of the policy,The BMJpublished 152 research papers of which 16 (11%) reported PPI activity. Patients contributed to grant applications in addition to designing studies through to coauthorship and participation in study dissemination. Patient contributors were often not fully acknowledged; 6 of 17 (35%) papers acknowledged their contributions and 2 (12%) included them as coauthors.ConclusionsInfrequent reporting of PPI activity does not appear to be purely due to a failure of documentation. Reporting of PPI activity increased after the introduction ofThe BMJ’s policy, but activity both before and after was low and reporting was inconsistent in quality. Journals, funders and research institutions should collaborate to move us from the current situation where PPI is an optional extra to one where PPI is fully embedded in practice throughout the research process.

scholarly journals Patient and public involvement (PPI) in prisons: the involvement of people living in prison in the research process – a systematic scoping review

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Samantha Treacy ◽  
Steven Martin ◽  
Nelum Samarutilake ◽  
Tine Van Bortel
Keyword(s):  
Systematic Review ◽  
Scoping Review ◽  
Public Involvement ◽  
Social Care ◽  
Positive Impact ◽  
Research Process ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care

Abstract Background Patient and Public Involvement (PPI) in health and social care research is increasingly prevalent and is promoted in policy as a means of improving the validity of research. This also applies to people living in prison and using social care services. Whilst evidence for the effectiveness of PPI was limited and reviews of its application in prisons were not found, the infancy of the evidence base and moral and ethical reasons for involvement mean that PPI continues to be advocated in the community and in prisons. Objectives To conduct a review of the literature regarding the involvement of people or persons living in prison (PLiP) in health and social care research focused on: (i) aims; (ii) types of involvement; (iii) evaluations and findings; (iv) barriers and solutions; and (v) feasibility of undertaking a systematic review. Methods A systematic scoping review was undertaken following Arksey and O’Malley’s (International Journal of Social Research Methodology 8: 19-32, 2005) five-stage framework. A comprehensive search was conducted involving ten electronic databases up until December 2020 using patient involvement and context related search terms. A review-specific spreadsheet was created following the PICO formula, and a narrative synthesis approach was taken to answer the research questions. PRISMA guidelines were followed in reporting. Results 39 papers were selected for inclusion in the review. The majority of these took a ‘participatory’ approach to prisoner involvement, which occurred at most stages during the research process except for more ‘higher’ level research operations (funding applications and project management), and only one study was led by PLiPs. Few studies involved an evaluation of the involvement of PLiP, and this was mostly PLiP or researcher reflections without formal or independent analysis, and largely reported a positive impact. Barriers to the involvement of PLiP coalesced around power differences and prison bureaucracy. Conclusion Given the very high risk of bias arising from the available ‘evaluations’, it was not possible to derive firm conclusions about the effectiveness of PLiP involvement in the research process. In addition, given the state of the evidence base, it was felt that a systematic review would not be feasible until more evaluations were undertaken using a range of methodologies to develop the field further.

scholarly journals ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

2015 ◽  
Vol 3 (38) ◽  
pp. 1-176 ◽  
Author(s):  
Patricia Wilson ◽  
Elspeth Mathie ◽  
Julia Keenan ◽  
Elaine McNeilly ◽  
Claire Goodman ◽  
...  
Keyword(s):  
Case Studies ◽  
Study Design ◽  
Research Team ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Realist Evaluation ◽  
Research Network ◽  
Normalisation Process Theory ◽  
The Impact

BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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