A meta-ethnographic study of fathers’ experiences of caring for a child with a life-limiting illness

Abstract

Background: There is a growing body of qualitative studies examining parents’ experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. However, research focusing on fathers’ needs remains sparse and is often diluted among a predominant ‘mother’s voice’, raising questions about whether practices in clinical settings meet fathers’ needs. Aim: To provide an in-depth assembly of the current state of knowledge around fathers’ experiences of caring for their children diagnosed with life-limiting conditions and understand the implications for healthcare services and policies. Design: A meta-ethnography was conducted to synthesise findings from existing qualitative studies exploring fathers’ experiences of caring. Data sources: Four electronic databases (PubMed, PsycINFO, CINAHL and Science Direct) were searched up until April 2020. Qualitative studies exploring fathers’ care experience and published in English language were included. The Critical Appraisal Skills Programme (CASP) checklist was employed for study quality appraisal. No temporal limits were used. Results: Sixty-three studies met the inclusion criteria. Thirty life-limiting conditions were included. Based on responses from 496 fathers, a conceptual model was developed which translates key experiences within the fathers’ caregiving journeys. The overarching concepts identified were: the paradox of support, challenges in the caring process, ‘nobody thinks of men’, impact on family life and the fall of the curtain: an irrevocably altered world. These and associated sub-concepts are discussed, with recommendations for future research and practice provided. Conclusion: The findings indicate the value of a family-oriented approach to develop psychosocial interventions and support channels for fathers, thus empowering them whilst reducing the care-giving burden on the family unit.

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

“…A recent meta-ethnography of fathers’ experiences of caring for a child with a life-limiting condition, included studies in which mothers’ experiences were also sought. 79 Including ‘father-only’ studies was a significant criterion in protocol development, as discussed with a family advisory board of parents of children with life-limiting conditions, who felt that this was important. Many of our findings share similarities with those of Postavaru and Swaby 79 emphasising the uncertainty, helplessness and isolation often experienced by these fathers, as well as the impact of the perception of the male role in shaping these experiences.…”

“… 79 Including ‘father-only’ studies was a significant criterion in protocol development, as discussed with a family advisory board of parents of children with life-limiting conditions, who felt that this was important. Many of our findings share similarities with those of Postavaru and Swaby 79 emphasising the uncertainty, helplessness and isolation often experienced by these fathers, as well as the impact of the perception of the male role in shaping these experiences. In this review, this was emphasised through the role conflict experienced by working fathers.…”

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

“…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 34 . For future adaptations of EJDeR, we will provide information and provide information to signpost parents to appropriate support services for parenting difficulties.…”

“… 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.…”

When should palliative care be introduced for people with progressive fibrotic interstitial lung disease? A meta-ethnography of the experiences of people with end-stage interstitial lung disease and their family carers

“…Completion of the data matrix allowed visual representation of how concepts and ideas were related between studies. The first (quotes from the studies) and second (themes developed by primary authors) order constructs were analysed through constant comparison, 20 , 21 identifying that the studies had reciprocal results ( Supplemental Material ). A reciprocal translation synthesis was performed.…”