7th January 2021

Academics from Bishop Grosseteste University (BGU) have worked with colleagues in the NHS to publish an article highlighting fathers' experiences of caring for a child with a life-limiting illness.

The article, ‘A meta-ethnographic study of fathers’ experiences of caring for a child with a life-limiting illness’, systematically explores the literature on fathers’ experiences of caring for a child with a life-limiting condition.

Using a meta-ethnographic approach, the study synthesised qualitative evidence to shed light on fathers’ experiences, as the often-forgotten parent in a field of research that has predominantly focussed on the mothers’ narrative. Findings revealed that fathers’ caregiving experiences are still shaped by assumptions about masculinity and fatherhood within medical care institutions, and they often feel disconnected from and side-lined by health professionals.

Fathers’ responsibilities in caring for their ill children and supporting the family unit as a whole are often under-represented in paediatric palliative care research and clinical settings, and this study highlighted the multitude of difficult emotions and devastation that fathers experience at their child’s circumstances.

Led by Gianina Postavaru, who is a Lecturer in Psychology and has a background in health psychology, the study highlighted a number of important findings that can inform the types and frequency of support that health professionals provide during the illness journey. These findings will be presented at two conferences this year: 2021 Qualitative Health Research Network Conference, University College London (17-19 March) and Chronic Living quality, vitality and health in the 21st century: an international conference, University of Copenhagen, Denmark, 23-25 April. Findings will also be disseminated to the Bereavement and Loss subgroup, as part of the NHS CHAIN on 28th January. Gianina has also been invited by Kasia Figiel, the Senior Commissioning Editor for SAGE Research Methods (SAGE Publishing) to contribute a filmed dissemination of the research on 12th January 2021.

Co-authors of the article included Helen Swaby, Lecturer for the undergraduate Counselling Programmes and MSc Mental Health, Wellbeing and Resilience at BGU and Dr Rabbi Swaby, Paediatric Registrar, Nottingham University Hospitals NHS Trust. The full article is available to access by clicking here.

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