Abstract
Background
Patient and public involvement (PPI) in all research studies is recommended from the earliest point and in as many stages as possible. Qualitative research is also recommended in the early stages of designing complex intervention trials. Combining both together might enable inclusion of ‘harder-to-reach’ perspectives from the target population(s), particularly when the research is intended for their benefit. However, the interface between PPI and qualitative research has received little attention.
In a multi-disciplinary, mixed methods study to inform the design of incentive trials for smoking cessation in pregnancy and breastfeeding, we combined PPI and qualitative research, with some overlap. Mother and baby groups from two geographically separate disadvantaged areas, with diverse experiences of the smoking and breastfeeding, but no training or previous involvement in research, were recruited as PPI research grant co-applicants. An iterative partnership approach facilitated involvement in research conduct and design across all project phases. Group PPI members were also invited to contribute to more formal qualitative data collection, as and when indicated by the research questions, and emerging analysis.
Results
We engaged with ‘harder-to-reach’ women in mother and baby group settings, rather than in academic or home environments. These settings were relaxed and informal, which facilitated rapport-building, disclosures of unexpected information and maintained trust. Twenty-one women participated in standard PPI activities: feedback on study protocols and documents; piloting questionnaires and interview schedules. PPI members voiced some different perspectives from those captured within the qualitative dataset. Nineteen participated in focused qualitative research. Novel aspects were audio recorded PPI discussions, which contributed qualitative data; first, to interpret systematic review findings and construct intervention vignettes for use in the qualitative research; second, to assist with recruitment to improve sample diversity in the formal qualitative dataset; and third, to translate theory and findings presented in a researcher generated logic model into a lay tool. This had face validity for potential trial participants and used the metaphor of a ladder.
Conclusions
Combining and overlapping PPI and qualitative research added ‘harder-to-reach’ contributions, sample diversity, trust and engagement in creative approaches beyond what could be achieved through PPI or qualitative research alone.
Patient and public involvement (PPI) in all research studies is recommended from the earliest point and in as many stages as possible. Qualitative research is also recommended in the early stages of designing complex intervention trials. Combining both together might enable inclusion of ‘harder-to-reach’ perspectives from the target population(s), particularly when the research is intended for their benefit. However, the interface between PPI and qualitative research has received little attention.
In a multi-disciplinary, mixed methods study to inform the design of incentive trials for smoking cessation in pregnancy and breastfeeding, we combined PPI and qualitative research, with some overlap. Mother and baby groups from two geographically separate disadvantaged areas, with diverse experiences of the smoking and breastfeeding, but no training or previous involvement in research, were recruited as PPI research grant co-applicants. An iterative partnership approach facilitated involvement in research conduct and design across all project phases. Group PPI members were also invited to contribute to more formal qualitative data collection, as and when indicated by the research questions, and emerging analysis.
Results
We engaged with ‘harder-to-reach’ women in mother and baby group settings, rather than in academic or home environments. These settings were relaxed and informal, which facilitated rapport-building, disclosures of unexpected information and maintained trust. Twenty-one women participated in standard PPI activities: feedback on study protocols and documents; piloting questionnaires and interview schedules. PPI members voiced some different perspectives from those captured within the qualitative dataset. Nineteen participated in focused qualitative research. Novel aspects were audio recorded PPI discussions, which contributed qualitative data; first, to interpret systematic review findings and construct intervention vignettes for use in the qualitative research; second, to assist with recruitment to improve sample diversity in the formal qualitative dataset; and third, to translate theory and findings presented in a researcher generated logic model into a lay tool. This had face validity for potential trial participants and used the metaphor of a ladder.
Conclusions
Combining and overlapping PPI and qualitative research added ‘harder-to-reach’ contributions, sample diversity, trust and engagement in creative approaches beyond what could be achieved through PPI or qualitative research alone.
| Original language | English |
|---|---|
| Article number | 7 |
| Pages (from-to) | 1-26 |
| Number of pages | 26 |
| Journal | Research Involvement and Engagement |
| Volume | 2 |
| DOIs | |
| Publication status | Published - 24 Mar 2016 |
Bibliographical note
AcknowledgementsWe would like to thank all members of the research team, especially our co-applicant collaborators: Mastrick Café Crèche, Aberdeen and Wendy Ratcliffe (Health Visitor); and St Cuthbert’s and Palatine Children’s Centre, Blackpool and Helen Cook (Manager). Extra and special thanks to Donna McPhee, Mastrick Café Crèche, who read and provided invaluable feedback on the final draft of this paper and with whom we continue to work to disseminate the findings of our collaboration and research. We would also like to thank our grant co-applicants: Professor Linda Bauld, Professor David Tappin, Professor Anne Ludbrook, Dr Shelley Farrar, Professor Falko Sniehotta, Graeme MacLennan and Professor Marion Campbell for their collaboration and input into the study design. Additional thanks to colleagues at the University of Aberdeen: Dr Sharon McCann, for helpful discussions around service user involvement in research, Kieran Rothnie and Fiona Stewart for their contributions to team discussions about service user involvement, Fiona Stewart and Cynthia Fraser for providing guidance with literature searching and reference management; and Lara Kemp for providing secretarial support.
Source of Funding
This project was funded by the NIHR Health Technology Assessment Programme (10/31/02) and is published in full in Health Technology Assessment: Morgan H, Hoddinott P, Thomson G, Crossland N, Farrar S, Yi D, et al. Benefits of Incentives for Breastfeeding and Smoking cessation in pregnancy (BIBS): a mixed-methods study to inform trial design. Health Technol Assess 2015;19(30). See here:
http://www.nets.nihr.ac.uk/projects/hta/103102
Keywords
- public involvement
- qualitative research
- complex interventions
- ‘harder-to-reach’ perspectives
- feasibility studies
- trial design
- service user collaboration
- participatory methods
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Heather Morgan, LLB (Hons), CertHE, MRes, FHEA, PhD, FRSA
- School of Medicine, Medical Sciences & Nutrition, Applied Health Sciences - Senior Lecturer
Person: Academic Related - Scholarship