Parent's Process of Escalation of Care for Their Deteriorating Children Admitted to Paediatric Wards: A Grounded Theory

ABSTRACT

Aim

Explore the care escalation process initiated by parents concerned about their hospitalised child's deterioration and healthcare providers' response to parental concerns.

Design

A qualitative study using Charmaz's constructivist grounded theory.

Methods

Participants included healthcare providers, cultural mediators and parents of children hospitalized for ≥ 3 days, who had experienced previous urgent intensive care admission or parental concern during hospitalization, in a tertiary pediatric hospital. Data were collected through focus groups, and analyzed using a grounded theory methodology with NVivo Software.

Results

A total of 13 parents, 7 cultural mediators and 68 healthcare providers participated in 16 focus groups. Two main categories were identified: (1) Parents navigating the uncertainty of the escalation system to get a response; (2) Healthcare providers balancing parents' concerns, their own situation awareness, escalation processes and team relations. We developed a Grounded theory called ‘Parents Supporting Timely Escalation Processes’ (P-STEP). By monitoring their children, parents identify early signs of deterioration and advocate for escalation. Reasons for concern are their child's behaviour, communication failure and admission on an off-service ward. Parents escalate by contacting ward providers, their child's specialist or the most trusted staff and, only selected parents, the Rapid Response Team. Staff escalate parents' concern according to their own situation awareness, parent evaluation and ward escalation practices. Parent's emotions and trust are influenced by the timeliness and type of staff response.

Conclusion

While some parents effectively advocate for their child, others face obstacles due to unclear and lack of formal care escalation systems. Understanding how parents escalate care and healthcare providers respond is essential to identify facilitators, barriers, key stakeholders, and implement a formal system for parent-initiated escalation of care.

Implications for the Profession and Patient Care

Integrating parents into processes of escalation and rapid response systems could optimise early recognition and improve responsiveness in paediatric deterioration.

Reporting Method

The study adheres to the COnsolidated criteria for REporting Qualitative research (COREQ) guidelines.

Patient or Public Contribution

Parents and HCPs participated as interview respondents.