504 - Parent-to-Parent Coaching for Parents of Children with Invasive Mechanical Ventilation: a pilot support and empowerment model

Publication Number: 1484.504

Anne G. Hutchinson, Loyola University Chicago Stritch School of Medicine, Chicago, IL, United States; Emma Green, University of Chicago, Chicago, IL, United States; Sarah A. Sobotka, University of Chicago, Chicago, IL, United States

Background: Children requiring invasive home mechanical ventilation (IMV) often remain in the hospital for extended periods of time while awaiting home health nursing (HHN) despite being medically ready for discharge. Minoritized children from economically disadvantaged homes are less likely to receive HHN. While hospitals and state agencies offer care coordination, parents are often responsible for selecting nursing agencies and nurses, as well as playing a role with maintaining HHN over time, which can be overwhelming. Parent-to-parent (P2P) support models are effective in reducing distress and improving self-efficacy for parents of children with disabilities.

Objective: This pilot study evaluated the feasibility of a pilot P2P coaching program to support parents navigating establishing HHN for children with IMV.

Design/Methods: Care coordinators from a state agency identified eligible families of children with IMV who lacked full HHN support. Families were enrolled in the hospital or at home. Meetings focused on parents’ individual needs, including home agency and nursing selection, discharge barriers, and home preparation. Upon enrollment, parents completed (1) a demographic, medical history and home support survey; (2) the Family Empowerment Scale (FES), and (3) a needs assessment interview. Parents exited the intervention after nursing needs improved, or discharge had occurred and then completed a program assessment, the FES, and a brief interview about the program impact.

Results: Ten mothers enrolled; 60% non-Hispanic Black and 40% Hispanic; 90% had a household income <$25,000, and 70% had reduced their work hours to care for their child. Eight children were hospitalized due to lack of available HHN and two children were home with insufficient HHN. Nine families completed coaching; one child died before exit. At exit, eight (89%) families had additional home nursing support, and six (67%) described their teams as either mostly or full staffed. Median total FES increased by 5.2 points. Families described the coaching program as supportive through (1) specific resources shared by coaches and (2) shared experiences and emotional encouragement.

Conclusion(s): This pilot study demonstrated that P2P coaching for HHN is feasible and acceptable to mothers of children with IMV from low-income and minoritized backgrounds. Mothers gained advocacy skills and increased HHN, which many attributed directly to their coach's support. Further work with larger cohorts ought to explore whether P2P coaching can reduce disparities and improve access to HHN.