The FATHER Model of Loss and Grief After Child's Life-Limiting Illness
mental health; Child; child; article; female; human; male; palliative therapy; practice guideline; Medline; anxiety; systematic review; grief; guilt; ethnography; Cinahl; Only Child; Scopus; fatigue; deterioration; injury; mother; meta analysis; quality control; ScienceDirect; ambivalence; father; directory; disenfranchised grief; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; unresolved grief
Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. Objectives: Using a meta-ethnographic approach, we systematically reviewed the literature around fathers' predeath and postdeath experiences of loss and grief. Data sources: We searched Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, and Science Direct, and used the meta-ethnography reporting guidelines; the Preferred Reporting Items for Systematic Reviews and Meta-Analyses; and sampling strategy, type of study, approaches, range of years, limits, inclusion and exclusions, terms used, and electronic sources recommendations. Study selection: We used the Guide to Children's Palliative Care and the directory of LLCs to select qualitative articles published up until the end of March 2023 that described fathers' predeath and postdeath experiences of loss and grief after their child's LLC. We excluded studies that failed to differentiate outcomes between mothers and fathers. Data extraction: Extracted data included study details, participants' characteristics, response rate, source of participants, method and time of data collection, children's characteristics, and quality assessment. First-order and second-order data were also extracted. Results: Forty studies informed a FATHER model of loss and grief. This highlights both similarities (ambivalence, trauma responses, fatigue, anxiety, unresolved grief, guilt) and distinct features defining the predeath and postdeath experiences of loss and grief. Limitations: There was a bias toward greater mother participation in research. Specific categories of fathers remain underrepresented in palliative care literature. Conclusions: Many fathers experience disenfranchised grief and deterioration in mental health after a child's diagnosis and postdeath. Our model opens possibilities for personalized clinical support in the palliative care system for fathers.
Postavaru GI; Hamilton J; Davies S; Swaby H; Michael A; Swaby R; Mukaetova-Ladinska EB
Pediatrics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2022-059122" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-059122</a>
F*** what the doctors tell you': Mistrust and disempowerment in fathers of children with life limiting conditions
Caregiver Attitudes; Ethical issue; fathers perspectives; life-limiting condition; pediatric palliative care
Background, aim or objectives Despite a growing corpus of qualitative research exploring parental experiences of caring for a child with a life-limiting condition (LLC), studies focusing on fathers' needs are sparse. Their voice is often diluted within a predominant mother narrative, raising questions about their needs and support within the healthcare setting. This study aimed to provide a greater insight into the caregiving experiences of fathers with a child with an LLC. Methods Meta-ethnography was used to synthesise existing qualitative studies exploring fathers' caregiving experiences. PubMed, PsycINFO, CINAHL and Science Direct search databases were used (up to April 2020) and qualitative, English studies were selected. Results Sixty-three studies were included. A conceptual model of fathers' key experiences was developed. It encompassed the following overarching concepts: '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'. This presentation will focus on the first and third named concepts, which highlighted many paradoxical experiences within the healthcare setting. The concepts of honesty, trust, mistrust, empathy, alienation and abandonment described fathers' experiences of health services and medical expert knowledge. Feeling side-lined and experiencing inconsistency in the healthcare system were also key themes. These informed fathers' experiences of disempowerment when interacting with health professionals, as well as examples of reassurance and support. These issues, as well as sensitive challenges around intimate personal/nursing care, and the impact on fathers' confidence in the caregiving process will be explored. Conclusions This study highlights the trust and health communication needs of an increasing number of fathers who are involved in caring for an ill child. Practical recommendations are provided, for example in relation to healthcare policy, and ethical issues around the recognition of fathers in child safeguarding and dignity of care policies.
Postavaru GI; Swaby H; Swaby R
BMJ Open
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjopen-2021-QHRN.27" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-QHRN.27</a>
A meta-ethnographic study of fathers' experiences of caring for a child with a life-limiting illness
children; Palliative care; life-limiting; fathers; healthcare; meta-ethnography
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.
Postavaru GI; Swaby H; Swaby R
Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216320979153" target="_blank" rel="noreferrer noopener">10.1177/0269216320979153</a>
F*** what the doctors tell you': Mistrust and disempowerment in fathers of children with life limiting conditions
Caregiver Attitudes; Ethical issue; fathers perspectives; life-limiting condition; pediatric palliative care
Background, aim or objectives Despite a growing corpus of qualitative research exploring parental experiences of caring for a child with a life-limiting condition (LLC), studies focusing on fathers' needs are sparse. Their voice is often diluted within a predominant mother narrative, raising questions about their needs and support within the healthcare setting. This study aimed to provide a greater insight into the caregiving experiences of fathers with a child with an LLC. Methods Meta-ethnography was used to synthesise existing qualitative studies exploring fathers' caregiving experiences. PubMed, PsycINFO, CINAHL and Science Direct search databases were used (up to April 2020) and qualitative, English studies were selected. Results Sixty-three studies were included. A conceptual model of fathers' key experiences was developed. It encompassed the following overarching concepts: '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'. This presentation will focus on the first and third named concepts, which highlighted many paradoxical experiences within the healthcare setting. The concepts of honesty, trust, mistrust, empathy, alienation and abandonment described fathers' experiences of health services and medical expert knowledge. Feeling side-lined and experiencing inconsistency in the healthcare system were also key themes. These informed fathers' experiences of disempowerment when interacting with health professionals, as well as examples of reassurance and support. These issues, as well as sensitive challenges around intimate personal/nursing care, and the impact on fathers' confidence in the caregiving process will be explored. Conclusions This study highlights the trust and health communication needs of an increasing number of fathers who are involved in caring for an ill child. Practical recommendations are provided, for example in relation to healthcare policy, and ethical issues around the recognition of fathers in child safeguarding and dignity of care policies.
Postavaru GI; Swaby H; Swaby R
BMJ Open
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjopen-2021-QHRN.27" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-QHRN.27</a>