Assessing Caregiver Needs of Critically-lll Children With Noncancer Diagnoses: A Qualitative Study

The experience of having a child in the pediatric intensive care unit (PICU) can be emotionally and psychologically overwhelming for families leading to many challenges.

To identify and explore the psychosocial needs of families of critically-ill pediatric patients with noncancer diagnoses, allowing for the development of mitigation strategies and interventions.

We conducted one-on-one interviews with caregivers of critically-ill pediatric patients with noncancer diagnoses admitted to a large urban PICU. We used a constant comparison analytic approach to derive themes from interviews.

We conducted 20 interviews, identifying five unique themes. 1) Families feel a profound obligation to be present at their child's bedside, making it difficult to address their own needs. 2) The physical environment of the PICU can provide challenges that hinder caregivers' ability to care for themselves and their children. 3) Families noted the importance of emotional support from bedside nursing, which provided tremendous comfort in times of uncertainty. 4) An ICU admission can deeply impact patients' siblings, which often goes unrecognized. 5) Families often feel immense fear and loneliness while admitted, which can persist after discharge.

By identifying unique themes representing the needs of families of critically-ill pediatric patients with noncancer diagnoses, we developed recommendations for how to address these needs and mitigate the psychosocial effects associated with a PICU admission, creating a more balanced support system for all patients and their caregivers. These interventions can be practiced by all team members caring for children in the PICU, including but not limited to palliative care specialists.