Parent perspectives on facilitating decision‐making around pediatric home ventilation

Abstract

Rationale Deciding about pediatric home ventilation is exceptionally challenging for parents. Understanding the decision‐making needs of parents who made different choices for their children could inform clinician counseling that better supports parents’ diverse values and goals. Objectives To determine how clinicians can meet the decisional needs of parents considering home ventilation using a balanced sample of families who chose for or against intervention. Methods We conducted semi‐structured interviews of parents who chose for or against home ventilation for their child within the previous 5 years. Parents were recruited from three academic centers across the United States. Interviews focused on parent–clinician communication during decision‐making and how clinicians made the process easier or more difficult. Qualitative analysis was used to generate themes and identify key results. Results Thirty‐eight parents were interviewed; 20 chose for and 18 chose against home ventilation. Five themes described their perspectives on how clinicians can facilitate high‐quality decision‐making: demonstrating dedication to families, effectively managing the medical team, introducing the concept of home ventilation with intention, facilitating meaningful conversation about the treatment options, and supporting and respecting the family's decision. Conclusions High‐quality decision‐making around home ventilation depends on individual clinician actions and the complex operations of large academic settings. Strong working relationships with parents, collaborative alliances with colleagues, and appropriate delivery of key content can help meet the needs of parents considering invasive breathing supports for their children.

Collaborative decision‐making: A framework for decision‐making about life‐sustaining treatments in children with medical complexity

“…Many different HCPs with varied roles are involved in the decision-making process for CMC. 12,19,23 Our study showed that HCPs had difficulty recommending tracheostomy for children with poor perceived functioning or quality of life. This is similar to that of the perspective of clinicians reported in prior studies.…”

“…Similar to SDM, good communication by HCPs is integral to CDM. Many studies have described the importance of honest, compassionate, accurate and timely HCP communication with caregivers 12,23 . CDM also includes deliberate collaboration between HCPs.…”

“…Many studies have described the importance of honest, compassionate, accurate and timely HCP communication with caregivers. 12 , 23 CDM also includes deliberate collaboration between HCPs. Many different HCPs with varied roles are involved in the decision‐making process for CMC.…”

“… 12 , 24 Caregivers and physicians alike value collaboration between HCPs as a way to reduce variability in care. 12 , 23 , 24 Collaboration in CDM is achieved by systematically engaging all stakeholders and implementing a unified action plan. Because CDM accounts for HCP‐level factors (i.e., fears, concerns, values etc.…”

“…However, caregiver and HCP perspectives described in our study are consistent with studies conducted more recently and in other geographic areas. 23 , 24 Hence, we believe that the CDM process described can be used elsewhere. Although our study does not include information from caregivers who chose not to pursue tracheostomy or directly from children, the themes discussed here were also seen in a study that included caregivers who did not pursue long‐term ventilation for their children.…”