Parents Perception of their Young Child's Symptom Management as an Outcome of Care

Purpose:The study had two specific aims: the first was to describe parental perceptions of their young children’s illness symptoms when they bring their child to the ED; and the second was to describe what’s important to parents about their young children’s illness symptom management after visiting the Emergency Department (ED). 

Background:Patient-centered outcomes are an increasingly important area of study as the United States transitions to a care model in which providers are evaluated and compensated based on the outcomes of care they provide rather than the amount. Symptom management is consistently identified as an important health care outcome, but has primarily been studied in the context of chronic illness such as cancer. There is a significant knowledge gap regarding the meaning of symptom management for acute illness symptoms and acute exacerbations of chronic illness for young children (up to eight years of age). This also has not been studied in the ED context. Parents are best positioned to provide this understanding as they know their young children’s expressions better than providers, and because parents are the decision-makers and caregivers for their children.

Methods:This was a qualitative descriptive study using maximum variation sampling. Thirteen parents who brought their young child (up to eight years of age) to the ED for treatment of illness-related symptoms were subsequently interviewed within three weeks of their visit. Interview transcripts were analyzed using an open coding approach. These codes were iteratively reviewed by the primary investigator, and discussed with a team of colleagues to validate the analysis. Participant validation was also obtained.

Results: Three main interactive categories were identified: first, the cyclic process of symptom management; second, provider interactions; and third, the contextual background of life logistics and supports.  The symptom management cycle starts with parents noticing something is wrong with their child, becoming alarmed, learning about and knowing the illness, to manage the illness, and get their child back to normal. Provider interactions, which significantly affect this cycle, are communications involving discussions with providers, parental expectations, communication around care, and provider behaviors; and the interventions involved.  Social supports and life logistics form the underlying context for families in which the symptom management cycle and provider interactions occur, and can have an effect on both. 

Implications: The findings from this study address a gap in the considerable literature related to symptom management in nursing and allied health. The meaning of acute symptom management, and the management of acute exacerbations of chronic symptoms, has not been previously described for young children in the Emergency Department context, particularly from the patient-centered outcomes perspective. Symptom management as a phenomenon is broadly recognized as an important health care outcome to consider. Expanding understanding in this area adds to researchers’ and clinicians’ ability to study this outcome as they strive to improve care.