Parent and Nurse Perspectives on Promoting Successful Partnerships for Children with HMV

Background

• Children living at home with home mechanical ventilation (HMV) need 24/7 monitoring of their equipment and clinical status by either a trained caregiver (often parents) or a skilled home health nurse.^{1, 2}
• Nurses give family caregivers a much-needed break, which helps reduce stress and sleep deprivation.³
• In order for children to flourish, families and home health nurses must establish working relationships in intimate family home settings.^{4, 5}
• It is often difficult for caregivers and nurses to navigate boundaries and establish a trusting relationship.⁶

Methods

• Semi-structured interviews were conducted with 15 home health nurses and 20 families of children with HMV in Illinois.
• Parents of children with HMV first transitioning home from the hospital were recruited through a state-wide program.
• Home health nurses were recruited through referral networks, family participants, and snowball sampling.
• The interview guides served as initial codebooks. Codes were iteratively modified as consensus themes emerged.

Sarah A. Sobotka, MD, MSCP¹; Emma Lynch, MPH¹; Danielle Hoffman, BS¹; Kim Whitmore, PHD, RN, CPN²

¹Section of Developmental and Behavioral Pediatrics, Department of Pediatrics, The University of Chicago, Chicago IL; ²College of Nursing, Marquette University, Milwaukee, WI

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Key Findings

• 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 home health nurses may benefit from understanding the experiences of one another.

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Family: Nurses who give space for family time help support the family unit and their distinct roles.

“We can say, “Hey, we need a little bit of family time,” and they'll like go upstairs and chart, or you know, just go upstairs and hang out, eat their lunch or something like that. So they're very aware, “We just need a little bit of family time.”

Nurses: Mutual respect for each other’s expertise and role is crucial for successful partnerships

" We're like a big family. It didn't start that way. They were my employers. [laughs] But they're great. They take my recommendations about what he needs, to a certain extent. They’re amazing.”

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Recommendations and Implications

• The nurse study is still open for recruitment; analysis is ongoing.
• We aim to disseminate findings in journals and in newsletters/social media targeting both home health nurses and parents in order to communicate with both stakeholder groups.
• Agencies may be poised to support relationships through facilitated communication.

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