‘Managing an unexpected life - a caregiver’s career’: Parents’ experience of caring for their child with a non-malignant life-limiting condition

Abstract

Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper explores the prevalent and all-consuming experiences of parents caring for their children. A qualitative descriptive study design was used. Twenty-three parents (both mothers and fathers) were interviewed. Transcribed interview data were analyzed using thematic analysis. ‘Managing an unexpected life’ was the central concept when parents recounted ongoing efforts to address the emotional and practical effects of their child’s condition on their life and that of their family. Analysis revealed three main distinct but interrelated themes within the concept of ‘Managing an unexpected life’ helping us enhance our understanding of parents’ experiences: ‘Striving for normality’, ‘Becoming the expert’ and ‘Fighting for your child’. Findings suggest that the central concept of ‘Managing an unexpected life’ appeared to be in keeping with a caregiver’s career. Findings likewise suggest the need for improved and focused support and services to enhance parents’ career caregiving.

Fathers' experiences of living with a child with a progressive life‐limiting condition without curative treatment options: A qualitative systematic review

“…The sick child had to come first, and fathers had to establish a new normal. In line with our findings, several studies, regardless of diagnosis or gender, describe parents as establishing a new normal and refer to it as normality reconstruction (Von Der Lippe et al, 2022), finding normal (Bally et al, 2018) and striving for normality (Price et al, 2022). Having a child with a C3 condition is time‐consuming (Lazzarin et al, 2018), and fathers in our review felt isolated, homebound, and as though their personal relationships had changed.…”

“…Having a child with a C3 condition could make them fall between two stools, and they had to arrange meetings with appropriate personnel to receive, for example, respite care (Davies et al, 2004;Steele, 1999;Ware & Raval, 2007;Wood & Milo, 2001) Being shattered in their perception of fatherhood revealed aspects of anticipatory mourning when fathers grieved over losses associated with the progression of their child's life-limiting condition (Rando, 1988(Rando, , 2000. The anticipatory mourning reactions seem to be consistent with findings in previous studies exploring parents' experiences within PPC (Fisher et al, 2021;Hurley et al, 2021;Krantz et al, 2022;Postavaru et al, 2020;Price et al, 2022). In our review, we found that most fathers felt a heightened feeling of love towards their child, which brings to light Rando's (1988) anticipatory mourning theory of being drawn closer to the dying patient.…”

“…C3 conditions are rare, and there being few comparable cases leads to unpredictability regarding life expectancy and functional outcomes. As a result, parents may experience a lack of information (Siden, 2018), and the parents become experts on their child's care (Price et al, 2022).…”

“…In addition, parents report increased financial costs (Brandt et al, 2022), strain on relationships (Krantz et al, 2022; Postavaru et al, 2020) and various emotions, such as uncertainty, chaos, sadness, loneliness and grief (Bally et al, 2018). It has also been found that parents express grieving throughout the trajectory of their child's disease, especially at the time of diagnosis and when the child progressively loses functions (Fisher et al, 2022; Price et al, 2022). The grief is commonly referred to as ‘anticipatory grief reactions.’ This term describes persons going through grief reactions prematurely and detaching themselves under the threat of death (Lindemann, 1994).…”

“…However, FCC is criticized for being an abstract concept, and it has its limitations. Parents express frustration when the HCP positions themselves as an expert (Price et al, 2022), and unclear roles between the HCP and the parents can lead the parents into a passive role (Mikkelsen & Frederiksen, 2011).…”