Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis

Purpose: Children born with Complex Life-Threatening Conditions (CLTCs) often require complex and specialized services. Parents of children with CLTCs balance the role of caregiver with other responsibilities of employment, education, relationships, and self-care. The purpose of this paper is to describe the challenges for parents serving as caregivers of children with CLTCs and their intersection with health care provider expectations through utilization and adaptation of the role theory framework.

Design/methods: We employed a qualitative descriptive design, secondary analysis of a longitudinal study on parent and provider decision making for children with CLTC. There were 218 interviews from sixty-one parents of 35 infants with prematurity, bone marrow transplant, and/or complex cardiac disease, followed for one year unless death occurred. Content analysis and thematic generation were performed capturing the various parental roles embedded within provider expectations of informal parental caregiving.

Results: Results showed that parents of children with CLTCs serve multidimensional roles, including that of informal nurse and care coordinator, while maintaining additional personal roles as parent and family provider. Parents experienced challenges as caregivers that were shaped by perceived expectations of health care providers as well as lack of support, often leading to role strain, conflict, overload, and sometimes exit.

Conclusions: Parents of children with CLTCs experience both common and unique challenges inn balancing multiple roles as an informal caregiver. Despite utilizing positive coping mechanisms, their status as parent caregiver carries significant risk for role strain and overload. We recommend the implementation of strategies for increasing parental support and family-centered care.