Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis

Abstract

BackgroundChildren with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers’ perspectives, meaning that fathers’ experiences are not well understood.ObjectivesTo identify and synthesise findings from existing qualitative studies that have explored the experiences of fathers of children with a life-limiting condition.MethodsA systematic review of qualitative research was conducted using thematic synthesis. Searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index.ResultsFindings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers’ experiences of uncertainty and shock around the time of their child’s diagnosis, their accounts of a ‘new normal’, difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers’ role conflicts. They discussed the life-changing nature of their child’s diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions.ConclusionsFathers experience many difficulties in response to their child’s diagnosis and ongoing treatment. Findings highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers’ responses are not widely understood, and research that directly addresses their own well-being is warranted.

The health of mothers of children with a life-limiting condition: A qualitative interview study

“…Parent caregivers frequently deal with what they describe as ongoing 'battles' with services to get appropriate levels of care and support for their child. 6,22 The experience of mothers included in this study was no different and the COVID pandemic had amplified these existing issues further. Navigating a disjointed system and 'battling' for support with little or no means of guidance was challenging and overwhelming when considered alongside the challenges of their everyday caregiving responsibilities.…”

“… 5 Further, parents are often required to balance additional responsibilities such as managing busy appointment schedules, offering advocacy, negotiating complex decision making, supporting education, providing transport, alongside fulfilling family and social responsibilities. 6 These responsibilities are ever present, particularly for mothers, who are most likely to be their child’s primary caregiver. 7 …”

“…5 Further, parents are often required to balance additional responsibilities such as managing busy appointment schedules, offering advocacy, negotiating complex decision making, supporting education, providing transport, alongside fulfilling family and social responsibilities. 6 These responsibilities are ever present, particularly for mothers, who are most likely to be their child's primary caregiver. 7 Current evidence tells us that mothers of children with a life-limiting condition are more likely to experience poor physical and psychological health outcomes than other mothers, including back problems, heart problems, arthritis, anxiety and depression.…”

Concerns experienced by parents of children treated for cancer: A qualitative study to inform adaptations to an internet‐administered, low‐intensity cognitive behavioral therapy intervention

“… 32 Importantly, a somewhat higher percentage of fathers mentioned being afraid of not being a good parent, which may have further implications for adapting EJDeR to meet fathers' needs. Wider research suggests fathers of children with life limiting conditions are excluded from participating in the child's care 33 , 34 with information commonly provided to mothers, exacerbating feelings of exclusion. 33 In the present study, a slightly higher percentage of fathers expressed difficulties talking to their child about cancer and possible late effects and understanding how to support social and emotional developmental needs.…”

“…Wider research suggests fathers of children with life limiting conditions are excluded from participating in the child's care 33 , 34 with information commonly provided to mothers, exacerbating feelings of exclusion. 33 In the present study, a slightly higher percentage of fathers expressed difficulties talking to their child about cancer and possible late effects and understanding how to support social and emotional developmental needs. Potentially, fathers' exclusion from the cancer experience may heighten concerns regarding their parenting ability and exacerbate feelings of helplessness.…”