“Living in the Dragon's Shadow” Fathers' Experiences of a Child's Life-Limiting Illness

Abstract

Grounded theory methods were used to study the experiences of 8 bereaved fathers whose children received care in a home-based hospice program. In-depth, unstructured interviews were audiotaped, transcribed, and coded for themes and categories. Every aspect of fathers' lives was affected by their experiences, which were described in metaphoric terms as living in a dragon's shadow. Fathers dealt with life in the dragon's shadow by battling the dragon (the illness)--the core social process. Battling was a conscious, active, continuous process that required strength, willpower, and work. Battling occurred within the context of fathers' experiences with fathering and fatherhood and was characterized by 3 aspects: battling with uncertainty, battling with responsibility, and battling with everyday disruption. Fathers were assisted by supportive work environments and by supportive relationships with health care providers. Unsatisfactory relationships with medical personnel compounded fathers' battling with life in the dragon's shadow.

Changes in Parents After the Death of a Child To Cancer (702)

“…This study used mixed methods to identify and assess the frequency of different types of changes in bereaved parents, on average, within the first year of a child's death from the perspective of mothers, fathers, and siblings. Consistent with previous studies, 12,13,[15][16][17][18][19][20] the majority of family members (83%) perceived that parents experienced changes after the death of a child. Changes included personal changes (emotions, perspectives, physical, work, coping behaviors, spiritual beliefs, and feeling something missing), and changes in relationships (family members and others).…”

“…13 Interestingly, few parents (only 8% of mothers) spontaneously reported physical changes after their child's death despite a growing literature supporting the physical toll and health risks for bereaved parents. [15][16][17][18][19][20] It is possible that these physical effects were less salient to parents in the early grief process when emotional changes dominate, or physical effects may emerge later, secondary to persistent negative emotional and social changes over time.…”

“…14 After the death of a child, risks to parental health include reduced quality of life, physical illness, and even death. [15][16][17][18][19][20] Some bereaved parents have described physical pain resulting from their grief similar to having been injured or mutilated. 21 The pain has been reported to linger even seven to nine years after the death of a child from cancer.…”

Examining the Experiences of Fathers of Children with a Life-Limiting Illness

“…Moreover, fathers generally felt that existing supports and services more directly targeted mothers' needs and ways of being. Davies et al (2004) metaphorically described the paternal experience as a "continuous battle with the dragon" (p. 129), exemplified by struggles with uncertainty, heightened responsibility, and substantial challenges in navigating everyday life.…”

Wegbegleitung, Trost und Hoffnung

“…In Deutschland leben etwa 22.600 Kinder mit solchen lebensverkürzenden Erkrankungen; jährlich sterben 1.500 von ihnen an deren Folgen (Droste u. Stuttkewitz, 2009). Für die betroffenen Kinder, aber auch für deren Familienangehörige bedeutet eine lebensverkürzende Erkrankung eine große physische und psychische Belastung (Davies et al, 2004). Insbesondere die Eltern müssen in einem oft langwierigen Prozess lernen, mit dieser Situation umzugehen und die krankheitsbedingten Anforderungen zu bewältigen (Schuchardt, 1987).…”