149 - Parent and Nurse Perspectives on Promoting Successful Partnerships for Children with Ventilator Dependence

Poster Number: 149
Publication Number: 149.305

Sarah A. Sobotka, University of Chicago, Chicago, IL, United States; Emma Lynch, University of Chicago, Chicago, IL, United States; Danielle Hoffman, University of Chicago Division of the Biological Sciences The Pritzker School of Medicine, Riverside, IL, United States; Kim Whitmore, Marquette University College of Nursing, Milwaukee, WI, United States

Background: Children with home mechanical ventilation (HMV) require the support of skilled nursing in order to live at home. Families and home health nurses must establish successful working partnerships in intimate family homes to enable children to flourish. Although challenges have been described, to our knowledge no prior study has combined nurse and family perspectives on the key components to creating successful partnerships.

Objective: Our objective was to understand the key components of establishing and maintaining successful partnerships when working in the home to support children with HMV from the perspective of both home health nurses and parents of children with HMV.

Design/Methods: Semi-structured interviews were conducted with fifteen home health care nurses and twenty parents of children with HMV in Illinois. Families were recruited through a state-wide program and nurses were recruited through snowball sampling. The interview guides served as initial codebooks which were iteratively modified as themes emerged.

Results: Twenty mothers and 10 fathers of children with HMV were interviewed; children were 30% Non-Hispanic White, 40% Non-Hispanic Black, and 25% Hispanic. All children had ventilators and feeding tubes; 65% of children were born prematurely and 35% had a congenital heart defect. Nurses were 67% Non-Hispanic, 20% Non-Hispanic Black, and 13% Hispanic or Multi-race. The majority (60%) of nurses worked full time with an average (range) of 14(1-36) years of experience. Parents valued a positive, often intimate, relationship with the nurses via open communication and competent care for their child. In a few cases, families indicated that negative experiences contributed to wariness with new nurses. Nurses described stress during initial hospital-to-home transition and during initial engagement, but identified that mutual respect for each other’s expertise and role is crucial. They acknowledged that some nurse-family pairings are not successful. Meaningful engagement with patients and long-term relationships with families, sometimes beyond the employment period, were highly rewarding to nurses. Conclusion(s): Home health nurses and parents of children with HMV both value meaningful relationships within professional boundaries. Initial engagement can be challenged by increased parental stress and wariness of new care providers, which sometimes can be interpreted as lack of trust in professional autonomy. Both parents and nurses may benefit from understanding the experiences of one another. Nursing agencies may be poised to support partnerships through facilitated communication.