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Table 5 Standard PPI

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

Designing and editing study materials Protocol and study information materials When the study started (February 2012) and before we received ethical approval, service users assisted in developing the protocol and study information materials through third party feedback to their group’s representatives. Most notably, they helped us to rephrase several sections of the information sheet for both readability and acceptability (Fig. 4).
Revisions took account of target population participants’ style preferences, language and social and cultural contexts. In particular, they drew our attention to their unfamiliarity with the term ‘cessation’ and the predominance of formula feeding, either from their own personal experience or in their immediate family and social networks. ‘Help women to stop smoking’ and ‘try breastfeeding’ were more appropriate phrases because women pointed out that ‘smoking cessation’ is too technical, and ‘encourage’ is persuasive, while the word ‘breastfeeding’ alone implies an assumption or certainty. The last of these was a very important change as we noted that a mother in one of the groups disclosed that she was providing exclusive breast milk to her infant on her characteristics form. However, at meetings, she allowed others group members to believe that she was formula feeding, using bottles of expressed breast milk, but talking about preparing formula feeds. As breastfeeding was not a social norm in the group, perhaps she anticipated that it could be considered unacceptable by some and preferred to ‘hide’ her choice to ensure her involvement and acceptance within the group.
Piloting study tools Interview schedules We piloted draft interview topic guides in three focus groups with service user mother and baby groups (Groups 1& 2) and with individual women (Group 2) prior to recruiting participants to the formal qualitative research. In Group 1, this involved trying a structured topic guide, the integration of study vignettes (described below) within the schedule and language/format revisions. The final, preferred version was unstructured with prompts for use if and when appropriate. For example, opening with questions around what incentives were/meant for women – so using women’s conceptions of incentives to guide the interview.
  DCE This was piloted with four mothers with a history of smoking in Group 2 using online simulation. When reading and answering each of the questions (using Survey Monkey’s online format (, the mothers were asked to use the ‘think aloud’ cognitive interviewing technique [50] whereby they expressed their feelings and discussed any issues around the questions/process. This session was facilitated by the researcher (GT) who audio recorded and transcribed key points for team discussion. All participants in this session took the questionnaire seriously and engaged with the choices. Descriptions and explanations in the DCE were revised for better understanding and readability based on their comments. There were pros and cons of piloting the survey with an established group, particularly when a more diverse sample, representative of the general public, is sought. However, in this instance, all women were current or previous smokers (the sample population who would complete the DCE), and so it was important to pilot with these members of the group.
Study outputs Lay summary Mothers in Group 1 read the first draft of the lay summary and commented. Two sentences were reworded according to their feedback and ‘promising’ was replaced with ‘potential’ as it was felt that the meaning of the former could not be easily understood without explanation and examples.
  Dissemination We took a poster presentation [39] to discuss with Group 1 in October 2012 to show them how we are reporting and presenting results publicly. They liked the format, which was something none of the members had seen before, and were delighted that their group’s name had been included, expressing a sense of immense pride regarding their involvement. At the final group meetings (Groups 1 & 2), mothers offered numerous suggestions for dissemination, such as face-to-face briefings, making information available online on key web pages that parents may access, leaflets within community/health facilities, inclusion within school newsletters and local newspaper articles with a group and researcher photograph. Several members requested personal copies of the published final report. A member of Group 1 has read and commented on the final draft of this paper. She raised the point that papers such as this are aimed at academic and professional audiences and she has expressed an interest in working with us to communicate our findings to others