A clinical‐academic partnership to develop a family management intervention for parents of preterm infants

Abstract

Aims: To examine the critical role that an academic clinical partnership played in the development and refinement of a family management intervention in the Neonatal Intensive Care Unit (NICU). Background: Clinical-academic partnerships enable earlier infusion of implementation science principles into development of evidence-based interventions, yet partners often report difficulty leveraging resources, personnel and expertise to create beneficial outcomes for all. Design: Longitudinal qualitative descriptive design. Methods: To develop and refine the intervention, designated time was taken during meetings of the NICU's Parent Partnership Council (PPC), a committee comprised of nursing, physician and allied health leadership and former NICU parents. Partnership was also achieved by having bedside clinical nurses, in addition to medical and nursing students, participate as research team members. Qualitative data were collected via email, research team and Council meetings, and informal individual chats with key stakeholders (N = 25) and NICU mothers (N = 22). Qualitative data were analysed deductively using thematic analysis based on MacPhee's partnership logic model and the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) model. The consolidated criteria for reporting qualitative research checklist guided our work. Results: During Council meetings, the clinical-academic nurse, Director of Family-Integrated Care and Council members identified the need for a family management intervention, and worked together to develop and refine PREEMIE PROGRESS. Mothers found the intervention had numerous strengths and perceived a benefit knowing they helped future parents. Conclusions: This work was only possible by leveraging both the university's technology/research resources and the clinical expertise of the NICU staff and PPC.

Inclusion of Spanish-Speaking Families in NICU Symptom Research Using a Community Advisory Board

“…For example, CABs can offer continuous review of study measures throughout the entire translation process and improve cultural accuracy and sensitivity, maintain intended meaning and literacy levels, and advise the inclusion of additional items or changes in the research protocol. 29,30 Community-informed NICU research has also focused on program/study development and implementation, [31][32][33] but several studies have incorporated versions of CABs (eg, review committees) in the translation of NICU measures, composed mainly of medical and/or research experts. [34][35][36][37] Although most studies pilot test translated measures with the target population, few use advisory boards composed of imbedded community members that are not involved in research or medicine.…”

“…Community-informed NICU research has also focused on program/study development and implementation,31–33 but several studies have incorporated versions of CABs (eg, review committees) in the translation of NICU measures, composed mainly of medical and/or research experts 34–37. Although most studies pilot test translated measures with the target population, few use advisory boards composed of imbedded community members that are not involved in research or medicine.…”

Feeding children with neurodisability: challenges and practicalities

“…There are several initiatives within the National Health Service seeking to encourage shared decision-making, including the ‘Ask 3 questions’ campaign 31. In neonatal intensive care, family-centred care is well developed with reported swifter implementation of knowledge translation to the benefits of preterm infants and families 32. Features of barriers to shared decision-making in paediatric practice include (1) lack of options, (2) poor quality information, (3) parent/child psychological state, (4) power struggles/imbalance, (5) insufficient time, and (6) lack of training in shared decision-making33 (see table 3).…”

Building Strong Clinician-Researcher Collaborations for Successful Hospice and Palliative Care Research

“…Ideally, collaboration begins from the first phase of the research life cycle forming ideas and research questions that are of interest to all participating collaborators. 9 Research questions can emerge from either practical problems that clinicians encounter or gaps in knowledge identified by researchers. A research question informs the design of the study; therefore, developing a specific and clear question is key for success.…”