Next up: Ilana Levine on parents’ research priorities for lactation after prematurity #abm2022 
Lots of challenges unique to lactation after prematurity - and extra importance for medically fragile infants #ABM2022
Online questionnaire sought parent input on challenges faced, priorities for research, opinions on ethical issues and dissemination pathways for results... closed after a week because there were so many responses... #ABM2022
675 respondents (!!), 47% very preterm, 24% early preterm, 51% had provided breastmilk for at least six months, 23% for more than a year... 95% white ethnicity #ABM2022
[Challenge of online data collection - individuals who have been made marginalized may have lived experiences that diminish trust in healthcare, and therefore online surveys... ] #ABM2022
Questions about expressing... resonates w/ my clinical experience - "realistic" is very real consideration... #ABM2022
Additional questions about logistics and lactating parent experience of expression... "How to feel happier about expressing" #ABM2022
Personalized feedback desired - can we predict volume / outcome based on early trajectory? #ABM2022
Storage, pumping routine... #ABM2022
Moving on to at-breast feeding - lots of questions about transitioning... what to do when breast is bigger then baby's mouth... #ABM2022
Questions about nipple shields - most participants had had good experiences w/ nipple shield, but were told to stop... #ABM2022
And what does success mean? [so cool to hear this talk on the heels of our #ROSEABM22 meeting!] Nature of breastmilk feeding experience, and duration of breastmilk feeding... No consensus on what duration is "success" #ABM2022
Parental concerns about research:
- imposing pressure to express
- increasing feelings of judgement / inadequacy
- extra burden at a stressful time
#ABM2022
- imposing pressure to express
- increasing feelings of judgement / inadequacy
- extra burden at a stressful time
#ABM2022
Key theme: burden / mental health impact of expressing for preterm infant... we have A LOT of work to do to support mothers of medically fragile infants!! #ABM2022
Take aways:
- milk yield is important
- any / exclusive breastmilk feeding alone does not capture enough - consider more nuanced assessment - parent's goals, satisfaction, mental health
- direct bfing is important
- long term bfing is important #ABM2022
- milk yield is important
- any / exclusive breastmilk feeding alone does not capture enough - consider more nuanced assessment - parent's goals, satisfaction, mental health
- direct bfing is important
- long term bfing is important #ABM2022
The research team has created posters to share in NICUs about their parent findings #ABM2022 npeu.ox.ac.uk/express/engage
Read more about the parent involvement in planning to study here: #ABM2022 …reastfeedingjournal.biomedcentral.com/articles/10.11…
@ilana_abc notes that those with less privilege are less seen and heard in research studies... importance of an equity-centered process for patient engagement studies... #ABM2022
.@ilana_abc: Optimal PPI (patient-public involvement) is collaboration - this model was a consultation, but did not share power. Looks forward to moving to full collaboration for future work #ABM2022
How to counter the view that at-breast feeding is "too tiring" for baby? @ilana_abc: what's our priority? Is this about getting the baby home 2 days sooner? Or about supporting long-term #breastfeeding?
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