Parenting the Hospitalized Child; Communication and Coping

Background and Purpose:

Over 3 million children are hospitalized yearly in the United States. Hospitalizations for cancer treatment, cardiac issues, organ transplant, trauma and chronic illness can have extended stays of week or months. The psychosocial impact on families has been well-documented, particularly related to parental stress and patient care. The move to family-centered care (FCC) has address some impacts, however FCC focuses more on interacting within the medical system rather than providing guidance on parenting. This mixed-methods exploratory study seeks to gain insight into specific parenting techniques employed that impact family and patient coping, addressing a gap in research. The following research questions were posed: 1) What challenges were present in managing communication with medical providers and family and friends?, 2) What techniques did parents implement during hospitalization to help their child cope?

Methods:

This project employed a mixed-methods online questionnaire to collect data on parent experiences based on the 2 research questions delivered via SurveyMonkey. Participants were recruited using snowball sampling initiated at local pediatric support organizations such as Ronald McDonald House, Smile-A-Mile and connections through Children’s of Alabama hospital. Qualitative results were coded and categorized by the researchers using an inductive approach with grounded theory.

Results:

One hundred sixty-four families participated, providing information on communication with medical providers, communication with family and friends, managing help and creating a home-like environment. Length of stay range from 1 week to over 1 year. Primary diagnosis included cancer, autism, malaria, hepatitis, cerebral palsy, and others. Findings reveal that families continue to have issues in communicating with medical providers based on different variables. Some families have found helpful ways to manage these challenges by utilizing other available resources. Findings also reveal that there were multiple challenges in communicating with family and friends, often alluding to larger issues around family dynamics. Most families indicated that they assisted their child in creating a hospital environment that was more home-like to assist in coping.

Conclusions and Implications:

The findings of this preliminary study indicate that while Family-Center Care is stated priority among pediatric medical providers there is still room for improvement in family communication. In addition, communication with family friends may also be an area of significant stress. This information can be utilized to guide support from social work and the medical team in empowering families dealing with a prolonged hospitalization.