A Qualitative Investigation of Fathers' Experiences of Looking After a Child with a Life-limiting Illness, in Process and in Retrospect

Abstract

Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused specifically upon this group of children and their families. This study utilized qualitative methods to investigate the experience of fathers, a group who are often under-represented in child illness research. The research aim was to gain an understanding of fathers' experiences of having a child with a life-limiting illness, its impact upon them, and their perceptions of service provision. The data from eight interviews was analysed using Interpretative Phenomenological Analysis. Four main themes emerged highlighting the fathers' feeling that their world had been turned upside down, how they lived with the knowledge their child would die, how men perceive themselves as different from women, and the fathers' wish to contribute to changing and improving how other fathers might cope with a child with a life-limiting illness. The results are discussed particularly in relation to gender issues. Various implications for clinical practice and service provision are considered. Suggestions are also made for future research.

Detached, distraught or discerning? Fathers of adolescents with chronic illness: a review of the literature

“…Fathers were as " in tune " with their children as mothers of children with chronic disease (23,29) . However, two articles noted that medical personnel speak primarily to females ahead of males, which further enhanced the father ' s sense of isolation (16,22) . In several interviews, fathers questioned the reinforcement of gender-based stereotypes as unhelpful when it came to the child ' s care.…”

“…Some fathers interviewed by Hayes and Savage (14) described becoming more stressed and upset than their wives. Ware and Raval (16) identified that their interviewees relied on socio-cultural norms of male expression and hence their ability to express emotions was, in some way, deficient. The study emphasized that, despite existing perceptions, fathers do want to talk about their child ' s illness.…”

“…Whilst in the majority of cases the mother is the primary health carer (10) , a key theme mentioned throughout qualitative studies was the desire for fathers to be seen by the health team as an active carer (5,16,22) . Fathers were as " in tune " with their children as mothers of children with chronic disease (23,29) .…”

“…Seven articles investigated multiple childhood diseases, including neoplastic disease, juvenile rheumatoid arthritis and cystic fi brosis (4) , neoplastic disease or sickle cell disease (5) , diabetes and asthma (6) , diabetes, asthma, cystic fi brosis, spina bifi da and phenylketonuria (7) , mental and physical disability and diabetes (8) , infl ammatory bowel disease and diabetes (9) and imperforate anus and juvenile rheumatoid arthritis (10) . The remainder of the sample discussed parents of patients with asthma (11,12) , cystic fi brosis (13,14) and unspecifi ed chronic disease or life-limiting illness (15,16) . The selection of the articles was done by the fi rst author.…”

“…For some fathers and families, this is a time of alienation and struggle. Fathers from several qualitative studies (3,16,18,21) discussed feelings of isolation as a result of their child ' s illness. These findings were contrasted by a study in which the authors quantified that fathers reported significantly fewer feelings of loneliness than mothers (26) .…”