Addressing the fetal alcohol spectrum disorder (FASD) ‘data gap’: Multi-method and multi-disciplinary public engagement to ascertain the acceptability and feasibility of establishing the first UK National linked database for FASD

Objectives To conduct public engagement work to establish the views of key stakeholders on the feasibility, acceptability, key purposes, and data structure of the first national linked longitudinal research database for fetal alcohol spectrum disorder (FASD) in the UK. Methods We conducted stakeholder mapping and identified contacts through collaborator networks and online searches. We consulted with stakeholders using a range of formats, including: online focus groups (one for adults with FASD [and their supporters] N=5; one for guardians of people with FASD N=7), 1:1/small-team video calls and email communication with clinicians, data providers, policy-makers, data-governance experts, third-sector representatives and researchers [N=~85]), and one hybrid workshop (N=16 [N=10 in-person, 6 online attendees; 15 clinical and one third-sector]). Consultations included discussions on data sharing, harmonisation, perceived benefits, and challenges of a national linked database for FASD. We analysed consultation transcripts and notes using thematic analysis. Results Our tailored, multi-method approach resulted in high levels of engagement with diverse stakeholders. Overall, stakeholders expressed strong support for a national linked database for FASD. For people living with FASD and third-sector representatives, the main perceived benefit was the potential for increased understanding, awareness, and support for FASD. Clinicians reported that a national database could provide new insights into FASD profiles, supporting more efficient diagnosis. Researchers highlighted potential for increased knowledge of FASD epidemiology and impacts. Policy-makers noted its clear alignment with contemporary FASD and data transformation policies. Common concerns were around privacy and data-sharing, particularly the tension between public good and disclosure risks if sample numbers were low. Clinicians expressed the importance of retaining space for clinical judgement and flexibility alongside the potential insights gained from quantitative analysis of data. Conclusion Multi-method and multidisciplinary stakeholder engagement demonstrated the feasibility and acceptability of establishing the first UK national linked database for FASD. Perceived benefits and concerns varied by stakeholder group, demonstrating that flexible, diverse, embedded stakeholder collaboration will be essential as we seek to establish this database

Feasibility and acceptability of a motivational interviewing breastfeeding peer support intervention

An uncontrolled study with process evaluation was conducted in three U.K. community maternity sites to establish the feasibility and acceptability of delivering a novel breastfeeding peer‐support intervention informed by motivational interviewing (MI; Mam‐Kind). Peer‐supporters were trained to deliver the Mam‐Kind intervention that provided intensive one‐to‐one peer‐support, including (a) antenatal contact, (b) face‐to‐face contact within 48 hr of birth, (c) proactive (peer‐supporter led) alternate day contact for 2 weeks after birth, and (d) mother‐led contact for a further 6 weeks. Peer‐supporters completed structured diaries and audio‐recorded face‐to‐face sessions with mothers. Semistructured interviews were conducted with a purposive sample of mothers, health professionals, and all peer‐supporters. Interview data were analysed thematically to assess intervention acceptability. Audio‐recorded peer‐support sessions were assessed for intervention fidelity and the use of MI techniques, using the MITI 4.2 tool. Eight peer‐supporters delivered the Mam‐Kind intervention to 70 mothers in three National Health Service maternity services. Qualitative interviews with mothers (n = 28), peer‐supporters (n = 8), and health professionals (n = 12) indicated that the intervention was acceptable, and health professionals felt it could be integrated with existing services. There was high fidelity to intervention content; 93% of intervention objectives were met during sessions. However, peer‐supporters reported difficulties in adapting from an expert‐by‐experience role to a collaborative role. We have established the feasibility and acceptability of providing breastfeeding peer‐support using a MI‐informed approach. Refinement of the intervention is needed to further develop peer‐supporters' skills in providing mother‐centred support. The refined intervention should be tested for effectiveness in a randomised controlled trial

Feasibility and acceptability of a motivational interviewing breastfeeding peer support intervention

An uncontrolled study with process evaluation was conducted in three U.K. community maternity sites to establish the feasibility and acceptability of delivering a novel breastfeeding peer‐support intervention informed by motivational interviewing (MI; Mam‐Kind). Peer‐supporters were trained to deliver the Mam‐Kind intervention that provided intensive one‐to‐one peer‐support, including (a) antenatal contact, (b) face‐to‐face contact within 48 hr of birth, (c) proactive (peer‐supporter led) alternate day contact for 2 weeks after birth, and (d) mother‐led contact for a further 6 weeks. Peer‐supporters completed structured diaries and audio‐recorded face‐to‐face sessions with mothers. Semistructured interviews were conducted with a purposive sample of mothers, health professionals, and all peer‐supporters. Interview data were analysed thematically to assess intervention acceptability. Audio‐recorded peer‐support sessions were assessed for intervention fidelity and the use of MI techniques, using the MITI 4.2 tool. Eight peer‐supporters delivered the Mam‐Kind intervention to 70 mothers in three National Health Service maternity services. Qualitative interviews with mothers (n = 28), peer‐supporters (n = 8), and health professionals (n = 12) indicated that the intervention was acceptable, and health professionals felt it could be integrated with existing services. There was high fidelity to intervention content; 93% of intervention objectives were met during sessions. However, peer‐supporters reported difficulties in adapting from an expert‐by‐experience role to a collaborative role. We have established the feasibility and acceptability of providing breastfeeding peer‐support using a MI‐informed approach. Refinement of the intervention is needed to further develop peer‐supporters' skills in providing mother‐centred support. The refined intervention should be tested for effectiveness in a randomised controlled trial

Feasibility and acceptability of a motivational interviewing breastfeeding peer support intervention

An uncontrolled study with process evaluation was conducted in three U.K. community maternity sites to establish the feasibility and acceptability of delivering a novel breastfeeding peer‐support intervention informed by motivational interviewing (MI; Mam‐Kind). Peer‐supporters were trained to deliver the Mam‐Kind intervention that provided intensive one‐to‐one peer‐support, including (a) antenatal contact, (b) face‐to‐face contact within 48 hr of birth, (c) proactive (peer‐supporter led) alternate day contact for 2 weeks after birth, and (d) mother‐led contact for a further 6 weeks. Peer‐supporters completed structured diaries and audio‐recorded face‐to‐face sessions with mothers. Semistructured interviews were conducted with a purposive sample of mothers, health professionals, and all peer‐supporters. Interview data were analysed thematically to assess intervention acceptability. Audio‐recorded peer‐support sessions were assessed for intervention fidelity and the use of MI techniques, using the MITI 4.2 tool. Eight peer‐supporters delivered the Mam‐Kind intervention to 70 mothers in three National Health Service maternity services. Qualitative interviews with mothers (n = 28), peer‐supporters (n = 8), and health professionals (n = 12) indicated that the intervention was acceptable, and health professionals felt it could be integrated with existing services. There was high fidelity to intervention content; 93% of intervention objectives were met during sessions. However, peer‐supporters reported difficulties in adapting from an expert‐by‐experience role to a collaborative role. We have established the feasibility and acceptability of providing breastfeeding peer‐support using a MI‐informed approach. Refinement of the intervention is needed to further develop peer‐supporters' skills in providing mother‐centred support. The refined intervention should be tested for effectiveness in a randomised controlled trial

Natural experiments for the evaluation of place-based public health interventions:a methodology scoping review

Place-based public health evaluations are increasingly making use of natural experiments. This scoping review aimed to provide an overview of the design and use of natural experiment evaluations (NEEs), and an assessment of the plausibility of the as-if randomisation assumption. A systematic search of three bibliographic databases (Pubmed, Web of Science and Ovid-Medline) was conducted in January 2020 to capture publications that reported a natural experiment of a place-based public health intervention or outcome. For each, study design elements were extracted. An additional evaluation of as-if randomisation was conducted by twelve 12 of this paper’s authors who evaluated the same set of 20 randomly selected studies and assessed ‘as-if’ randomisation for each. 366 NEE studies of place-based public health interventions were identified. The most commonly used NEE approach was a Difference-in-Differences study design (25%), followed by before-after comparisons studies (23%) and regression analysis studies. 42% of NEEs had likely or probably as-if randomisation of exposure (the intervention), while for 25% this was implausible. An inter-rater agreement exercise indicated poor reliability of as-if randomisation assignment. Only about half of NEEs reported some form of sensitivity or falsification analysis to support inferences. NEEs are conducted using many different designs and statistical methods and encompass various definitions of a natural experiment, while it is questionable whether all evaluations reported as natural experiments should be considered as such. The likelihood of as-if randomisation should be specifically reported, and primary analyses should be supported by sensitivity analyses and/or falsification tests. Transparent reporting of NEE designs and evaluation methods will contribute to the optimum use of place-based NEEs

Black to the Future : Making the Case for Indigenist Health Humanities

This paper outlines the development of Indigenist Health Humanities as a new and innovative field of research building an intellectual collective capable of bridging the knowledge gap that hinders current efforts to close the gap in Indigenous health inequality. Bringing together health and the humanities through the particularity of Indigenous scholarship, a deeper understanding of the human experience of health will be developed alongside a greater understanding of the enablers to building a transdisciplinary collective of Indigenist researchers. The potential benefits include a more sustainable, relational, and ethical approach to advancing new knowledge, and health outcomes, for Indigenous people in its fullest sense.<br/