The Bronchiolitis Endotracheal Surfactant Study (BESS) is a randomised controlled trial to determine the efficacy of endo-tracheal surfactant therapy for critically ill infants with bronchiolitis. To explore acceptability of BESS, including approach to consent within a limited time frame, we explored parent and staff experiences of trial involvement in the first two bronchiolitis seasons to inform subsequent trial conduct.

A mixed-method embedded study involving a site staff survey, questionnaires and interviews with parents approached about BESS.

Fourteen UK paediatric intensive care units.

Of the 179 parents of children approached to take part in BESS, 75 parents (of 69 children) took part in the embedded study. Of these, 55/69 (78%) completed a questionnaire, and 15/69 (21%) were interviewed. Thirty-eight staff completed a questionnaire.

Parents and staff found the trial acceptable. All constructs of the Adapted Theoretical Framework of Acceptability were met. Parents viewed surfactant as being low risk and hoped their child’s participation would help others in the future. Although parents supported research without prior consent in studies of time critical interventions, they believed there was sufficient time to consider this trial. Parents recommended that prospective informed consent should continue to be sought for BESS. Many felt that the time between the consent process and intervention being administered took too long and should be ‘streamlined’ to avoid delays in administration of trial interventions. Staff described how the training and trial processes worked well, yet patients were missed due to lack of staff to deliver the intervention, particularly at weekends.

Parents and staff supported BESS trial and highlighted aspects of the protocol, which should be refined, including a streamlined informed consent process. Findings will be useful to inform proportionate approaches to consent in future paediatric trials where there is a short timeframe for consent discussions.

ISRCTN11746266.

Despite free primary healthcare services and social protection system for mothers and children, significant nutrition inequalities occur across the globe, including in South Africa. This study aimed to explore what determines mothers’ ability to access and turn available services into nutrition benefits.

An exploratory qualitative study was conducted including semistructured interviews with employees from community-based organisations and focus groups with pregnant women and mothers. Discussions focused on existing services perceived as important to nutrition, differences in mothers’ ability to benefit from these services, and the underlying unmet needs contributing to these disparities. Data were analysed thematically using a novel social needs framework developed for this study where social needs are defined as the requisites that can magnify (if unmet) or reduce (if met) variation in the degree to which individuals can benefit from existing services.

A resource-constrained urban township, Soweto in Johannesburg.

Thirty mothers of infants (

Mothers identified social needs related to financial planning, personal income stability, appropriate and affordable housing, access to government services, social support and affordable healthier foods. The degree to which these needs were met determined mothers’ capabilities to benefit from eight services. These were clinic-based services including nutrition advice and social work support, social grants, food aid, community savings groups, poverty alleviation projects, skills training workshops, formal employment opportunities and crèches/school feeding schemes.

Findings demonstrate that while current social protection mechanisms and free health services are necessary, they are not sufficient to address nutrition inequalities. Women’s social needs must also be met to ensure that services are accessed and used to improve the nutrition of all mothers and their children.

The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research.

We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis.

The study was conducted online.

Patient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study.

Transcripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE.

Both projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups.

Our findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group.