Table 1
Community scientist contributions to each stage of the research process.
| RESEARCH STAGE | COMMUNITY SCIENTIST CONTRIBUTIONS |
|---|---|
| Pre-funding consultation | Parents were asked in Facebook posts about their preferences for being involved in a study of this kind, including what would be feasible and their preferred methods of engagement and remuneration. Parents commented on posts. |
| Research design | Parents critically reviewed study instruction sheets and data collection tools (research diary questions). These were posted in the Facebook group, and parents commented on them. More detail on these posts can be seen in Table 2. |
| Data generation | Parents actively contributed to data collection by detailing their infant formula–making process in a research diary and undertaking an at-home experiment by measuring the water temperature used to make up powdered infant formula. |
| Research education | Parents were invited to contribute and engage with research education and scientific awareness via regular posts in the private Facebook group. More detail on research education posts can be found in Table 4. Likes, views, and comments indicated the level of engagement with this stage of the process. |
| Data analysis | Parents were invited to join a data-analysis sub-group to analyse qualitative data arising from the research diaries. This data analysis sub-group contributed in part asynchronously via email and through comments in another separate closed Facebook group (for the analysis sub-group only), and some contributed via a series of live online video conferencing meetings (23 meetings over 8 months). |
| Reflections on participating in CS | The research diary contained questions that addressed participation in the research: for example, “How did you feel about doing this experiment?” and “Would you take part in a similar experiment again?”. Conversations also took place in the analysis sub-group about this, and notes were kept by the academic researcher. |
| Development of research outputs | Parents in the analysis sub-group offered critical reviews of the research outputs (academic papers and conference presentations) via email. |
Table 2
Research design posts in the Facebook group and community scientist interaction.
| POST | VIEWS | TOTAL NUMBER OF LIKES (NUMBER OF LIKES FROM COMMUNITY SCIENTISTS) | TOTAL NUMBER OF COMMENTS (NUMBER OF COMMENTS FROM COMMUNITY SCIENTISTS) | NUMBER OF INDIVIDUAL COMMUNITY SCIENTISTS COMMENTING |
|---|---|---|---|---|
| Request for feedback on first draft of instruction sheet | 43 | 5 (4) | 15 (7) | 3 |
| Request for suggestion on questions to ask in the research diary | 65 | 6 (4) | 19 (12) | 9 |
| Request for information on types of milk used | 50 | 1 (0) | 10 (7) | 5 |
| Request for information on what equipment is used to prepare bottles of formula | 62 | 1 (0) | 18 (10) | 7 |
| Request for information on types of infant formula preparation machines used | 62 | 0 | 4 (2) | 2 |
| Asking for feedback on second draft of instruction sheet | 68 | 1 (1) | 6 (3) | 3 |
| Participant-initiated post about the rationale for the use of two bottles in the at-home water temperature testing | 63 | 2 (1) | 3 (2) | 2 |
| Sharing drawings to go on instruction sheet | 59 | 7 (6) | 0 | 0 |
Table 3
Participant demographics, data generation phase. n: number in subsample, M: mean, SD: standard deviation.
| Gender | Mother | n = 143, 94.7% |
| Father | n = 8, 5.3% | |
| Age | M = 32.87 years, SD = 4.46, range: 21–43 years | |
| Nationality | Welsh/English/Scottish/Northern Irish | n = 142, 90.1% |
| Other white background | n = 1, 0.7% | |
| White and Black Caribbean | n = 1, 0.7% | |
| White and Black African | n = 1, 0.7% | |
| Chinese | n = 1, 0.7% | |
| Any other Asian background | n = 1, 0.7% | |
| Caribbean | n = 1, 0.7% | |
| Prefer not to say | n = 3, 2% | |
| Age of youngest baby | M = 7.05 months, SD = 2.74, range: 1–12 months | |
| Parity | 1st-time parent | n = 88, 58.3% |
| Have more than one child | n = 63, 41.7% | |
| Disability status | I consider myself to be disabled | n = 4, 2.6% |
| I do not consider myself to be disabled | n = 147, 97.4% | |
| Education | Postgraduate qualification or equivalent | n = 75, 49.7% |
| Bachelor’s degree or equivalent | n = 47, 31.1% | |
| A-level or equivalent (age 18 school leaver qualification in the UK) | n = 24, 15.9% | |
| GCSE or equivalent (age 16 school leaver qualification in the UK) | n = 3, 2.0% | |
| Prefer not to say | n = 2, 1.3% |
Table 4
Research education posts in the Facebook group and community scientist interaction (in chronological order).
| POST | VIEWS | TOTAL NUMBER OF LIKES (NUMBER OF LIKES FROM COMMUNITY SCIENTISTS) | TOTAL NUMBER OF COMMENTS (NUMBER OF COMMENTS FROM COMMUNITY SCIENTISTS) | NUMBER OF INDIVIDUAL COMMUNITY SCIENTISTS COMMENTING |
|---|---|---|---|---|
| What does the word “research” mean to you? | 56 | 2 (0) | 7 (6) | 4 |
| What does the term “community science” (sometimes also known as citizen science) mean to you? | 51 | 1 (0) | 5 (4) | 4 |
| Shared a video of a presentation about the research study (7 minutes, no subtitles) | 42 | 4 (3) | 0 | 0 |
| Have you noticed the phrase “evidence-based policy” being used in the news recently? | 48 | 0 | 2 (0) | 0 |
| What would you like to know about research? | 47 | 0 | 0 | 0 |
| Did you know these facts about infant formula from First Steps Nutrition Trust? (with infographic) | 57 | 3 (3) | 3 (2) | 2 |
| Should I give water to my baby? Guidance and recommendations from First Steps Nutrition Trust (during a heatwave) | 53 | 2 (2) | 2 (1) | 1 |
| Link to blog post: “Formula feeding will NOT make your baby Autistic” (Autistic UK) | 29 | 2 (2) | 0 | 0 |