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Cited by 72Mental Health and Patient InvolvementCommunity Health and DevelopmentHealth Policy Implementation Science

Combining PPI with qualitative research to engage ‘harder-to-reach’ populations: service user groups as co-applicants on a platform study for a trial

Open access
on behalf of the ‘BIBS’ study team, Morgan, Heather, Thomson, Gill, Crossland, Nicola, Dykes, Fiona, Hoddinott, Pat·2016·Research Involvement and Engagement
DOI 10.1186/s40900-016-0023-1PMC PMC5611582
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Abstract

PLAIN ENGLISH SUMMARY: It is recommended that research studies are carried out with or by patients and the public through their involvement from the beginning and in as many stages as possible (known as PPI). Some studies formally invite patients and the public to participate in interviews and focused group discussions to collect views about topics (known as qualitative research). In our study on financial incentives for giving up smoking in pregnancy and breastfeeding, we combined both PPI and qualitative research to include the views of women with a range of experiences of smoking and breastfeeding. We involved two mother and baby groups in disadvantaged areas of North East Scotland and North West England as research partners on our team. First, we asked members to comment on our research plans and documents, which is standard PPI. Second, we asked members to participate in voice recorded discussions, contributing to qualitative research data. These discussions revealed different views from those that we heard through research interviews. They allowed us to develop more relevant research tools and resources. Members also helped us to identify people outside the groups who we could interview. Combining involvement and participation helped us to include the views of a wide range of women from 'harder-to-reach' groups who don't usually take part in research. This was important because the research was intended for women who could benefit from incentives to stop smoking in pregnancy and breastfeed, often present in such groups. Positive continuing relationships and trust improved on involvement or participation alone. ABSTRACT: ᅟ. 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.

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  • Evidence consistently shows that PPIE relies on contributors who could be considered the 'usual suspects': individuals who are well-educated, typically older, and from non-minority ethnic groups.

    “However, evidence consistently shows that PPIE relies on contributors who could be considered the “usual suspects”: individuals who are well-educated, typically older, and from non-minority ethnic groups [25–27].”

    From Layering perspectives: a structured approach to meaningful patient and public involvement and engagement in the RETURN dental trial (2026) · cites this paper as [27]

    The Background (page unavailable) says that people with low socioeconomic status, low literacy, or minority ethnic backgrounds can be harder to engage in PPI, and that volunteer recruitment may not attract typical members of a target population. This supports a concern about unrepresentative contributors, but the paper does not establish that PPIE contributors are typically older, well-educated, and non-minority, or that evidence consistently shows this profile. (LLM, conf=0.84)

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Research works printed but not linked: 1

  1. [30]INVOLVE and NRES. Patient and public involvement in research and research ethics committee review. [ONLINE] [document on the Internet]. Available from URL: http://www.invo.org.uk/wp-content/uploads/2011/12/INVOLVENRESfinalStatement310309.pdf. 2009. Accessed date 18 Feb 2016.

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Authors
on behalf of the ‘BIBS’ study team, Morgan, H., Thomson, G., Crossland, N., Dykes, F., & Hoddinott, P.
Affiliations
  • University of Aberdeen (GB)
  • University of Lancashire (GB)
  • University of Stirling (GB)
Corresponding author
Morgan, Heather
ORCID
Venue
Research Involvement and Engagement
Publisher
Springer Science and Business Media LLC
Published
2016-03-24
Volume
2
Issue
1
Pages
7-7
ISSN
2056-7529 (ISSN-L)
DOI
10.1186/s40900-016-0023-1
PMC
PMC5611582
OpenAlex
W2296601113
Cited by
71
References
36
Citations by year
2026: 5 · 2025: 6 · 2024: 6 · 2023: 6 · 2022: 8 · 2021: 12 · 2020: 5 · 2019: 5 · 2018: 8 · 2017: 6 · 2016: 2 · 2014: 1
FWCI
13.04
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • Research Involvement and Engagement (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • CLOK (University of Central Lancashire) (acceptedVersion)
  • Aberdeen University Research Archive (Aberdeen University) (submittedVersion, cc-by)
  • Stirling Online Research Repository (University of Stirling) (submittedVersion, cc-by)
Funders
  • National Institute for Health and Care Research (10/31/02)
  • University of Aberdeen
  • Medical Research Council
Topics
  • Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
  • Health Sciences › Health Professions › General Health Professions › Community Health and Development
  • Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
Keywords
patient and public involvement, qualitative research, research collaboration, smoking cessation during pregnancy, breastfeeding, financial incentives, disadvantaged women, trial design, trust and relationships, women's health research, participatory research design, qualitative-quantitative integration, north-east Scotland, North West England

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