A Qualitative Analysis on the Experiences of Mothers of Children in Burn Intensive Care Unit: “She burned on the outside, me inside...”

Abstract

Mothers closely follow the complex process due to the burning of their children. Caring for and supporting the child can pose various challenges for mothers. With the phenomenological method, this study was conducted to investigate mothers' experiences staying with their children in the pediatric burn intensive care unit. Twelve mothers participated in the study. The semi-structured face-to-face interviews obtained data. After each interview, the research team transcribed the interviews verbatim. Interpretive Phenomenological Analysis was used to analyze the data. The experiences of the mothers were classified in four contexts as a result of the interpretative phenomenological analysis; “first reactions to burn trauma” related to the awareness that the child has been burned, “being a mother in the burn intensive care unit” related to caring for the child as a companion in the burn intensive care unit, “coping” related to how they cope with the problems throughout the whole process, and “requirements” regarding the subjects it needs in the process. It was determined that mothers went through a physically and emotionally challenging process from the beginning of the burn trauma and throughout the intensive care unit. During this challenging process, it was observed that mothers could not use effective coping methods and did not receive the necessary professional support. In line with these results, it is recommended that psychological support programs be applied to the mothers and that care focused on the needs of the mothers should be provided.

Perceptions and Experiences of Parents of Burn-Injured Children during Hospital Stay: A Need for Integrated Care

“…Furthermore, in the present study, none of the parents received psychological support, and some parents were unaware of the hospital’s psychological services/resources. These findings, coupled with the unmet needs identified by parents (e.g., lack of support and opportunities for self-care), which is in line with previous qualitative studies, e.g., [ 28 , 30 ], raise an important contribution to healthcare research, in this area, underlining the need for parents’ psychological support and screening. The Integrative (Trajectory) Model of Pediatric Medical Traumatic Stress [ 50 ] provides a useful framework to guide psychosocial assessment and intervention for both pediatric patients and families, considering subjective responses/appraisals and offering specific intervention goals for each medical phase (i.e., peri-trauma, acute medical care, and ongoing care or discharge from care).…”

“…Furthermore, parents seem to minimize and disguise what they are feeling, trying to show that they are “still strong” and capable of promoting their children’s physical and psychological well-being. Karahan et al [ 28 ] found similar results in a qualitative study focused exclusively on the experiences of mothers in a pediatric burn intensive care unit and emphasized the importance of using adaptive coping strategies during this period. In addition to difficulties in emotional expression and regulation, these parents have intrusive memories of the burn accident, which threatens their psychological adjustment.…”

“…Prolonged hospital stays have been significantly associated with higher parents’ posttraumatic stress symptoms (PTSS) [ 20 ] and PTSD [ 25 ]. Also, the hospital environment exacerbates psychological maladaptive responses, namely maternal distress, which suggests that mothers, who are typically the child’s primary caregiver during the hospital journey, seem to be a particularly vulnerable group due to the severity of the symptoms presented [ 10 , 28 ]. A recent qualitative study by Karahan et al [ 28 ] found that mothers of pediatric burn patients faced severe physical and emotional distress from the burn occurrence and throughout the inpatient phase, as a result mainly of a lack of adaptive internal coping resources and professional support.…”

“…Also, the hospital environment exacerbates psychological maladaptive responses, namely maternal distress, which suggests that mothers, who are typically the child’s primary caregiver during the hospital journey, seem to be a particularly vulnerable group due to the severity of the symptoms presented [ 10 , 28 ]. A recent qualitative study by Karahan et al [ 28 ] found that mothers of pediatric burn patients faced severe physical and emotional distress from the burn occurrence and throughout the inpatient phase, as a result mainly of a lack of adaptive internal coping resources and professional support. In addition, a study focusing on changes in the outcomes of caregivers of burn survivors within one-year post-burn found that increased length of hospital stays contributed to a decrease in the caregivers’ quality of life [ 29 ].…”

“…Hence, parents play a key role during (and after) the inpatient phase [ 32 ], given the child’s age/stage of development and the type of treatment planned (e.g., long-term rehabilitation), making it essential to include parents in an integrated care plan that also promotes their engagement [ 29 ]. However, in the field of pediatric burn injuries, knowledge about parents’ perceptions and experiences regarding hospital stay is scarce [ 28 , 30 , 31 , 32 , 33 , 34 , 35 ], limiting the development of research-informed intervention care plans. A recent scoping systematic review highlighted the paucity of qualitative data on parents’ issues and concerns regarding their children’s hospital stay period [ 26 ].…”