Impact of an Integrated Framework on Care Transition of Infants with Medical Complexity

Kieran E, Dyck-Chan L, Alonso E, Walker S, de Salaberry J, Lee E, Lusney N, MacKillop M, Synnes A, Meckler G, Wright M, Osiovich H, Chan LD, Wiebe T, Johnstone I, Shivananda S.


INTRODUCTION: Infants with medical complexity (IMC), who would once have died in early infancy, now live longer and present significant care transition challenges after discharge from the Neonatal Intensive Care Unit (NICU). In 2018, representatives of nine hospital in-patient and out-patient services joined to form a core team to plan improvements in care transition. Our (core team’s) primary aim was to determine the individuals or representatives from hospital programs i.e. care-provider stakeholders’ intentions to act following meaningful engagement in identifying care transition gaps, reviewing evidence and taking part in deliberations on potential interventions to address care transition gaps. The secondary objectives were to determine (i) high-priority interventions for implementation and (ii) care providers’ network growth.

METHODS: We performed an improvement project between January 2019 and February 2020. The core team members initially established the project scope and approach for carrying out their activities by using an integrated framework with 4 essential elements; (i) engaging care provider groups and alumni parents caring for IMC, (ii) identifying care transition gaps, (iii) performing and presenting evidence informed potential solutions to address gaps, and (iv) facilitating deliberations to identify priority interventions for implementation in our setting. We identified care-provider stakeholders by snowball sampling technique and alumni parents of IMC NICU family alumni database, respectively. We elicited interdisciplinary care providers’ intention to act and level of engagement using validated survey questionnaires, and stakeholders identified interventions for implementation on an effort-impact matrix.  

RESULTS: Fifty-two interdisciplinary care providers representing various services of Children’s and Women’s Hospital, community care and provincial organizations, and 8 alumni parents were engaged with an overall network growth during this project. We identified 25 care gaps through parent and care provider engagement activities and selected 9 for evidence review. Evidence reviews identified at least three potential solutions for every identified gap. We chose 4 relevant evidence briefs for deliberation session and circulated with intended participants of deliberation session. Twenty-two participants from an invited 42 (52%) took part in the deliberation session. Ninety percent of respondents found evidence briefs and deliberative dialogues helpful. Eighty percent of care provider respondents indicated an intention to act from what they learnt from evidence briefs and dialogues to advocate for care transition changes. We grouped the key interventions for implementation under 4 domains (i) neonatal to pediatric complex care program transition; (ii) caregiver mental health; (iii) caregiver peer support and self-help groups and (iv) hospital to community care coordination. Deliberation session participants then prioritized multiple change interventions within each domain using an effort-impact matrix.

CONCLUSIONS: Interdisciplinary care providers representing various hospital and community services reported strong intentions to act following adoption of an integrated framework in addressing gaps in transitioning IMC from NICU to community or other in-hospital units. The volume and variety of interdisciplinary care providers engaged increased during the project period. We identified high priority interventions for implementation under four domains. 

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