Role of Parental Caregiving for Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis

Abstract

<h3>Background</h3> Parents of children with special health care needs (CSHCN) act as primary medical caregivers while also sustaining relationships and multiple roles as employee, student, and parent, and many more. The additional pressure that medical caregiving puts on parents often results in a multidimensional experience of burden, consisting of physical, social, emotional, and psychological. In this study, we avoid the term "burden" due to its historically problematic nature and instead adopt the framework of role theory (consisting of role strain, role conflict, role overload, and role exist). Our aim was to utilize this framework in order to describe the experiences of parents as informal caregivers for CSHCN. <h3>Purpose</h3> The purpose of this study was to explore the experience of parenting a child with complex life-threatening conditions and the perceived health care provider's expectations on informal caregivers, utilizing role theory to depict parental roles. <h3>Methods</h3> The parent study for this analysis was a longitudinal study on parent and provider decision-making for 35 infants with CSHCN approved by the Duke University IRB. Of the 35, 218 interviews from 15 cases of infants with complex chronic conditions (prematurity, bone marrow transplant, or complex cardiac disease) were selected for this secondary analysis. Data collection for each case was derived from qualitative semi-structured interviews occurring at least monthly until one year after enrollment, unless death of the child intervened. Due to the nature of the parent study, questions targeted parental and provider perceptions, as well as experiences caring for the infant. Transcripts were uploaded to and analyzed in NVivo 12, with a codebook defined and thematic generation performed to capture the content of diverse parental roles embedded within informal parental caregiving expectations by the provider team. <h3>Results</h3> Our analysis identified the potential for role strain, conflict, and overload that parents as informal caregivers experience, sometimes leading to role exit. Challenges noted by parents were, in part, shaped by perceived expectations by the health care providers and system, as well as due to perceived lack of support. Caregiving appeared to be generally linked to self-care deficits, however some subjective positive experiences of the caregiving role were also reported. The status of caregiving and its substantial role set (including managing feeding tubes, ventilators, appointments, discussions with providers, et cetera) caused parents to experience significant role strain. Parents also experienced conflict in managing multiple roles (including that of informal caregiver) associated with different statuses, such as employee, student, wife or husband, etc. Role overload was multifactorial, related to insufficient physical, social, emotional, and financial resources of parents. <h3>Discussion</h3> Parents experienced multiple role transitions and exits, such as leaving employment, education, and relationships. While some parents reported positive experiences, including personal growth and the development of coping mechanisms, it is clear that the caregiver status still carries notable risk related to the role theory framework. It is essential for providers to inquire about parents' responsibilities and roles, encourage relationship support, and advocate for parental self-care.