Parents’ lived experience of living with and caring for their burn-injured child in a home setting

Figures & data

Table I. Characteristics of sample.

Children	N = 12	Parents	N = 24
Girls/boys, n	4/8	Mothers/fathers/stepfather, n	12/11/1
Age at accident, mean (mean-max)	2 years and 1 month (2 months to 7 years)	Age mother, mean (min-max)/father, mean (min-max)	31 years (21–39)/35 years (24–46)
Aetiology, (n)	Scalds (9), contact (2) electricity (1)	Having one child/more children, n	8/16
Scars, n	6	Employed, n	24
Surgery, n	2	Single parent, n	2
Amputation	2	Norwegian/European, n	18/6

Table II. Characteristics of the interviews.

Interviews, n	18
Length of interview: Minutes, mean (min-max)	66 (38–155)
Total interview time: Hours, n	20
Interviewed together/alone, n	12/12
Place of interview, (n)	Burn centre (5), local hospital (2), home (10), café (1)
Presence of non-participants:	Sometimes the burn-injured child (<2 years old) of the parent(s) would be present during the interview.

Table III. Three levels of analysis, the Ricoeur inspired method (P. S. Dreyer & Pedersen, 2009).

Level 1: Naïve reading
The first overall reading written as a narrative text
Level 2: Structural analysis:
First step: Meaning-bearing units – What is said in the text? (Citations)	Second step: Significance-bearing units – What does the text talk about? (Narrative text supported by citations from first step)	Third step: Themes (illuminating the meaning of the text)
Level 3: Critical analysis and discussion
The themes from the structural analysis are discussed in the context of relevant research literature and theory

Table IV. Naïve reading.

After their child’s hospital treatment of a burn injury, both child and parents were discharged from the burn centre. Shortly thereafter, they were back at the outpatient clinic for a three-month follow-up appointment. Around this time, most families were living their normal everyday life again. All parents focused on their child and the positive development of the wounds, scars or movement in different body parts, but stressed that they would never forget what happened. Shortly after coming home, almost all parents were thinking about the accident, but as time passed by, they thought less frequently about it. To some, though, visible disfigurements in their child was a daily reminder of the burn accident. Some parents were so affected by the burn accident and the stay at the burn centre that they were on sick leave, talking to their general practitioner or a psychologist to process their experience and feelings. Some had involved a lawyer or the patient safety authority to start an investigation regarding the accident. Many parents were uncertain about or struggled with different practicalities and economic issues. Some parents experienced that their child had not changed compared to prior to the accident, while others had noticed a change in their child’s behaviour, e.g., that the child was extra attentive or afraid of warm objects, sensitive to specific noises and woke up with nightmares. Some parents had concerns regarding potential future bullying from other children.

Table V. Example from the structural analysis.

First step: Meaning-bearing units • What is said in the text?	Second step: Significance-bearing units • What does the text talk about?	Third step: Themes
“No. It’s not forgotten, but it’s incorporated, I think” (Father no. 13). “But it’s a thing that you never forget, unquestionably” (Father no. 4). “It is definitively not something that I will ever forget” (Mother no. 12). “It’s a thing (red. feelings) that never disappears” (Father no. 24). “Yes. It’s within” (Mother no. 1). “But it’s still within” (Mother no. 12). “I think the hard thing is like, ehmm, those feelings. Because well, I think it’s still inside somewhere. This feeling from the accident. From that time” (Mother no. 19). “But you don’t go around and think about it on a daily basis, you don’t in a way. I try to, at least. Because now it is … , now he must live as normal, so then the focus is on that” (Father no. 14). “Of course, you have that feeling inside of you, the feeling from when it happened. […] it’s not always with me. It comes once in a while. Yes.” (Father no. 8). … (there are more citations)	The feelings that the parents had experienced at the time of the accident were so powerful that they had left a permanent impression. The feelings had become embodied. The parents would never forget this traumatic experience, and the feelings were now inside them. Even though the feelings were not present all the time, they were still inside the parents. Some things could trigger the parents’ memory and immediately make them remember what had happened. Different sounds, noises or a touch would bring them right back to the time of the accident. Their body reacted on its own. A father experienced to start crying when he heard the sound of a helicopter as it reminded him of the accident and the acuteness of the situation when a helicopter had landed on his front yard. Some immediately felt pain in their body and relived the stress and chaos when they heard a special sound. Another trigger mechanism was seeing and touching the scar on their child. …	Embodied feelings that will stay forever

Dreyer, P. S., & Pedersen, B. D. (2009). Distanciation in Ricoeur’s theory of interpretation: Narrations in a study of life experiences of living with chronic illness and home mechanical ventilation. Nursing Inquiry, 16(1), 64–73. https://doi.org/10.1111/j.1440-1800.2009.00433.x

 PubMed Web of Science ®Google Scholar