578 Childhood Burn Injuries: The Parent Perspective

Abstract

Abstract Introduction Interventions for burn-injured children (BIC) largely focus on the child with the physical injury while consideration for family systems appears incidental. This study aimed to gain insight into the perspectives and needs of parents/caregivers of pediatric burn patients (PPBP). When considering BIC within the context of a family system, it is reasonable to expect the injury to engulf everyone. The literature emphasizes the acute and lasting physical and emotional impact of burns. Moreover, research suggests PPBP experience an emotional response to the incident that is often complicated by physical absence from their other uninjured children. Thus, this exploratory study fills a gap by engaging the unique perspective of the PPBP and posits direct implications for essential program enhancement/development. Methods PPBP attending a family program participated in semi-structured interviews (N=11) guided by the research question: What are the experiences of PPBP? Participants’ self-identified as African American (n=4), Caucasian (n=5), and Latino (n=2). Age ranged from 29 to 48 (M=38.36, SD=6.14). Interviews involved queries regarding the burn incident, from injury to present (M=7.12 years, SD=4.61), including support received, what they wish people understood about the experience, and ideas for programming. Interviews were recorded and transcribed. Data were analyzed using van Manen’s hermeneutic phenomenological approach. Results Findings supported PPBP’s unique experience coalescing into one theme—the never-ending trip from hell—conceptualized as, “I didn’t mean to get here—none of this is familiar and I can’t find anyone I know. What’s going on and when will it be over?” Mutual painful insights were parental guilt, sensory experiences related to the acute incident and aftercare, unknown prognosis and medical treatment expectations, physical/emotional health problems, family members insensitivity, managing the cruelty of others, isolation, marital strains, and sibling tensions. Families also reported positive outcomes: strength of informal support networks, empowerment through educating others, and creating new allies. PPBP emphasized the benefits associated with meeting other families who also endured a burn injury and the importance of mutual support. Conclusions Programs should address the needs of all family members, not just BIC. In order to mitigate the impact of burn trauma, the family system impact remains a critical primary consideration for research and interventions. Applicability of Research to Practice Findings can contribute to program planning with increased consideration of the family system. As a result of findings from this study, siblings are now included in a summer camp program historically serving only BIC.