The FATHER Model of Loss and Grief After Child’s Life-Limiting Illness

Noblit and Hare’s²⁴  7-stage meta-ethnographic approach was used to synthesize included studies (Supplemental Fig 3). The meta-ethnography reporting guidance^25,26 ; the Preferred Reporting Items for Systematic Reviews and Meta-Analyses²⁷ ; and sampling strategy, type of study, approaches, range of years, limits, inclusion and exclusions, terms used, and electronic sources²⁸  recommendations informed the synthesis. The study protocol was registered in the International Prospective Register of Systematic Reviews before study commencing (registration #CRD42021233258; see Supplemental Table 5).

We used Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, and Science Direct for an initial bibliographic search. Hand searches of articles cited in reference lists and from relevant review articles⁵  added to the search strategy. Studies were included up until the end of March 2023; no temporal limits were used. Search terms are available from the InterTASC Information Specialists’ Sub-Group Search Filter Resource (www.york.ac.uk/inst/crd/intertasc/) and informed the search syntax (Supplemental Materials).

Studies were included if they were:

1. published full-text, peer-reviewed, qualitative articles exploring fathers’ experiences of loss (while the child was still alive) and bereavement;

2. conducted in palliative care units/hospitals, in the transitional phase between hospital and home, and at home, regardless of country/setting/level of palliative care; and

3. written in English.

Studies were excluded if:

1. they failed to differentiate outcomes between mothers and fathers;

2. they used quantitative methods/systematic/narrative reviews/gray literature; and

3. they did not include children with LLCs.

Selection of relevant articles was informed by the Guide to Children’s Palliative Care¹²  and the directory of LLCs.²⁹ 

Search results were collated in an Excel spreadsheet. A total of 938 articles were identified for review (after removal of 99 duplicates). Titles and abstracts were screened independently by the first and second authors. A total of 794 articles were removed during title and abstract screening. The remaining 144 were reviewed in full, with further exclusions based on stated inclusion/exclusion criteria. Any discrepancies were resolved by consensus. Forty articles were included in the meta-ethnography (Fig 1). Extracted data included study details, participants’ characteristics, response rate, source of participants, method and time of data collection, and children’s characteristics. First-order (full replication of participants’ experiences expressed in original quotations) and second-order (authors’ interpretations and conceptualizations) data were used across the studies.^24,25  Data were extracted in thematic tables. Where studies included both parents, only father data were extracted.

Quality appraisal was conducted by the first and second authors by using the Critical Appraisal Skills Program checklist (https://casp-uk.net/casp-tools-checklists/). Studies were not excluded on the basis of given mean scores, because a Critical Appraisal Skills Program cutoff point has not been recommended previously.^30,31  Thirty-nine studies (Supplemental Table 6) were of high quality (score ≥80%). Only 1 study³²  scored ≥70%, but was still considered to contribute valuable findings to the existing knowledge. In general, authors needed to provide clearer details in their studies regarding recruitment strategy, relationship between the researcher and participants, and rigor of data analysis.

The first- and second-order constructs were thematically analyzed and organized into categories through constant comparison.^30,33  This helped to identify whether constructs corresponded (reciprocal translation); explained differences, exceptions, incongruities, and inconsistencies (refutational translation); or expressed different aspects of the topic (line of argument).¹¹  Where varied labels were used for the same phenomenon, we compared the constructs to identify patterns of shared meaning. For example, if 1 study reported that fathers felt supported by their network^14,34,35  and another highlighted unhelpful support,^15,36  these were considered refutational and translated into a new construct incorporating elements of both (eg, “support: positive and negative”). However, if in a third study,³⁷  fathers reported negative support, but shifted to seeking and receiving positive support, all 3 interpretations were treated as reciprocal and translated into a construct encompassing all 3 (eg, “endurance and coping”). Subconstructs were also developed; these helped reconfirm the construct names in the final list and explore the lines of argument.

Interpretations were treated as metaphors to enable the comparative translation of 1 study into others. Where possible, we have used the wording of participants and the exact messages of the categories to retain the holism of fathers’ narratives.²⁴  The development of the conceptual analysis was iterative, collaborative, and grounded in the original data.³¹  Five criteria defined the adequacy of metaphors^38,39 : economy (simplicity and superiority of representation), cogency (without redundancy, ambiguity and contradiction), range (incorporating other symbolic domains), apparency (language “showing” rather than “referring to” experience), and credibility (understandable by the reading audience).

During the synthesis, it was apparent that the concepts describing “circles of hope,” “control/normality,” and “endurance and coping: loss-orientated versus restoration” (Supplemental Table 7) were not contradictory in nature; rather, they described alternate perspectives of the same phenomenon. Therefore, a line of argument synthesis, rather than a refutational synthesis, was most appropriate for the aim of our study.⁴⁰ 

In analyzing the data, managing unconscious bias around gender norms became particularly salient. To minimize bias, we employed several verification strategies to ensure rigor of the analysis,⁴¹  including methodological coherence, the iterative interaction between data and analysis, thinking theoretically, and taking a coresearcher approach. Employing a mixed-gender research team enabled us to be open to different interpretations and multiple meanings of the text.⁴²  Analysis cross-checking by both male and female authors and corresponding reflections on several occasions enabled us to affirm and challenge each other’s interpretations of the data and to become aware of “unconscious editing” because of our own sensitivities. Thinking theoretically required a deliberated move between a micro perspective of the data and macro conceptual understanding⁴²  of the fathers’ experiences of loss and grief, thus making constant comparisons of the data while building the FATHER model. We arrived at a set of shared interpretations that were insight-rich and grounded in the data. Where possible, we have used the wording of participants to stay close to fathers’ narratives. In these accounts, fathers used the word “battle(s)” or synonyms (eg, “confrontation”) to describe their loss and grief journey.^6,16,37 

Studies were conducted in the United States (130 fathers [33%], 8 of 9 studies); Canada (119 fathers [31%], 12 studies); the United Kingdom, Ireland, and Wales (62 fathers [16%], 10 studies); Europe (40 fathers [11%], 6 studies); Australia (23 fathers [6%], 2 studies); and Asia (10 fathers [3%], 1 study). Twenty-nine studies (72%) interviewed both parents; 11 focused solely on fathers. A total of 384 fathers were included in total through a range of interviews, observations, and open-ended questionnaires (excluding 5 studies not specifying father sample size). Six studies included fathers aged >50 years; 18 studies (45%) did not specify their age. Data collection time was not reported in 19 studies; in 16 studies, it varied between 1 and 24 months after the child’s death. Children’s diagnoses included hemato-oncological (10 studies) and heart/cardiac (9 studies) diseases, cystic fibrosis (2 studies), and a range of other LLCs (24 studies). Although these conditions have varying morbidity, they share the similarity of potential decreased lifespan and likelihood of early death.⁴³  Four studies did not specify diagnosis type (Table 1).

Studies all related to one another through contribution to a FATHER model encompassing 6 multifaceted overarching concepts: facing loss; ambivalence: mixed feelings; traumatic loss: posttraumatic stress; hard work of grief: fatigue; endurance and coping: loss-orientated versus restoration; and renewed sense of aliveness and purpose (Table 2). Naming the concepts mnemonically was an afterthought for presentation rather than an a priori coding system influencing the categories identified. Our model presents an overlap between the first 3 categories; this mirrors the clinical presentations and oscillations of grief symptoms (Fig 2). Characteristics of these categories can be comorbid at various grief points; for example, there are elements of trauma responses to receiving diagnosis^15–17  and postbereavement^44,45 ; ambivalence occurs in the predeath grief^46,47  and after a child’s death¹⁵  (Tables 3 and 4).

Predeath grief begins at the moment of receiving a life-limiting/terminal diagnosis. It has been previously defined as a “prelude” to grief⁴⁶  and the “beginning of the end.”⁴⁶  This grief foreshadowed bereavement or loss of the child’s health, because fathers experienced the “double loss”¹⁵  of living with the illness or disability in the present, alongside a sense of a limited or lost future of the life they envisaged for the child. They struggled to assimilate the shock of a sudden life-changing diagnosis.^15,20,47,48 

For some, the child’s diagnosis restimulated feelings associated with past trauma related to previous experience of receiving news of an LLC diagnosis for a family member, such as a parent.⁴⁹  There was a further struggle to process overwhelming news surrounding prognosis and awareness of what to expect from the illness.^15,47  Fathers felt catapulted into living a perpetual crisis giving rise to stress and anxiety.^18–20  Exposure to grief feelings and anticipation of the child’s death during diagnosis period were not felt to reduce symptoms at the time of bereavement; this only prolonged the period of grief and distress.⁴⁴  Some identified that coping with the anticipatory feelings prepared them in some way for postbereavement grief¹⁵ ; for others, this experience inhibited feelings of grief after the child’s death and had a negative impact on coping.⁴⁴ 

The model in this paper describes coming to terms with a life-limiting diagnosis while processing the reduced lifespan of the child. There were periods of emotional flooding, being overwhelmed, and feelings of helplessness where intensive cognitive and affective processing occurred, as fathers came to terms with the new reality cognitively and connected with grief feelings.^17,18  Fathers tended to circle between hope¹⁶  and hopelessness.^34,44  During this period, some fathers adapted through distancing from the child to minimize the pain of the anticipated death,^15,50  while maintaining hope⁴⁴  and focusing on practical care tasks.⁵¹  These responses enabled functioning during this period by managing affective processing and dosage of grief.

There was a sense of battle,³⁸  or a need to fight the terminal illness and the physical decline in the child’s health, experienced by fathers as extremely distressing to witness,^6,52  along with the resulting feelings of hopelessness and uncertainty.^16,51,53  Treatment presented a form of bargaining, which fathers focused on to maintain hope, prolong the child’s life, and ward off the inevitability of death.^16,18,45,54  Involvement in decisions surrounding care helped them counter a lack of control⁵²  that felt overwhelming,⁴⁵  whereas routine activities with the child and memories restored a sense of normality during the difficult transition through illness and bereavement.^54,55 

Fathers experienced ambivalent feelings of loss⁵⁶  and a sense of isolation after diagnosis.^15,17,57  They described mixed feelings of wanting to hold onto the child and needing to let go.^14,58  They felt isolated mainly when the child appeared healthy: “People couldn’t understand how we had a perfectly healthy 3-year-old running around and we were just beside ourselves.”¹⁷ 

Some fathers described relief in relation to the child’s death and invoked the demands of caregiving, not wanting the child to suffer, and wanting it to be over.⁵⁸  Others described feeling “thankful” after bereavement even though it felt “really awful that somebody is thankful when a child dies.”⁴⁴  They experienced guilt⁴⁴  surrounding ambivalent feelings and wondered if they could have done anything more for the child and/or spent more time with them while they were alive.^32,71  There was an ambivalence of living, between wanting to stay connected to the child and the need to move on and live in the present.¹⁴  It was difficult to integrate the conflicting realities of the past and present that impacted negatively on relationships with their spouses and remaining children: “You never get over the death of your own child. It is always in your mind because the dead child reminds you of his/her existence every time you look at your other children.”³⁹ 

Traumatic loss often refers to a response to a bereavement that is distressing, unanticipated, frightening, sudden, violent, or perceived as unjust. However, it can describe any loss that engenders the symptomology of posttraumatic stress in those affected. Traumatic responses to the unexpected illness and early death of the child included shock,²³  anger and anxiety,^{14,16,32,34–36,45,51}  stress,^{13,32–35,44,57}  guilt,^{26,32,34,43,45,46}  depression,^{13,25,33,44,60,61}  ambivalence,^36,44,62  feelings of helplessness and isolation, and a deterioration in fathers’ mental health.^{15,17,35,44,61}  Fathers reported physical responses including shaking, migraines, tiredness, a sense of physical pain, sleep disturbance, and nightmares.⁴⁶  Aspects of the child’s treatment were experienced as traumatic, as well as the eventual death.^28,45,63  Metaphors used likened the experience to a sense of having undergone a physical trauma such as feeling “scarred” like “burn victims” or “reduced to ashes.”¹⁶  Some experienced a sense of unreality and derealization associated with trauma and anxiety: “You’ve been taken out of your life and put into somebody else’s movie …the wrong movie … it’s that disorienting. It’s a very alienating experience.”¹⁶ 

Diagnosis engendered feelings that the world was unstable and dangerous, disrupting their pretrauma assumptions of a safe and stable future.¹⁷  Feelings of underlying stress and anxiety persisted after bereavement.^17,44  Fathers experienced extreme anguish, alongside periods of reduced emotional processing and numbing; this resembled the intrusion and avoidance of overwhelming feelings associated with posttraumatic stress.^{14,35,44,45,64} 

Anxiety arose from the sense of the child’s existential fragility and living with illness.^6,61  There was great anxiety surrounding the possibility that hospital visits could end with “walking out of the hospital with an empty car seat.”¹⁵  Having more children restimulated difficult emotions.¹⁵  Receiving news of diagnosis and death^{15,16,35,44,65}  generated shock and anger. Fathers tended to express rather than work through emotions, in contrast to mothers.¹⁵  Subsequently, anger manifested as irritability in everyday life, contributing to difficulties in relationships and feelings of isolation from friends and family.^41,52,57  They felt anger at the unfairness of the loss and at their inability to fulfill their protective role, a responsibility that necessarily had to be entrusted to health care workers and which caused a sense of powerlessness. Anger was directed at health care workers delivering bad news, externalizing feelings of inner conflict surrounding an inability to save the child.^15,44 

Feelings of depression were linked to self-blame, a diminished sense of meaning and purpose, existential angst surrounding the inevitability of death, and loss of identity as a father. Depression was evident in emotional numbing, cutting off emotional connections with partners and children, whereas some experienced suicidal ideation.^{14,17,49,60,61} 

Fathers felt overwhelmed and exhausted by the emotional and practical demands of living with and caring for their unwell child.^{16,35,44,60,62,65}  There was a sense of loss of control over their mental and emotional capacity, with fathers feeling they might “lose it completely”⁴⁴  or “just snap because it’s too much.”³⁵  For some, this led to practical changes including leaving their jobs.^34,65  Others described finding ways to refocus,⁶²  adapt/accept,^44,57  and independently carry their pain as coping mechanisms.³⁵  But this did not feel possible for everyone: “If you tried to concentrate, you would be wasting your time. You would just be wasting [time] and spinning your wheels.”⁶⁰ 

Fathers found ways to work through the emotions associated with their loss and grief, adjusting to the changed relationship with the deceased. For some, this involved remembrance activities such as performing rituals in the child’s memory and speaking or writing to the child^{14,15,32,36,66}  or to friends and family.⁶⁶  These activities enabled fathers to adjust to the physical loss of their child while maintaining and forming a new relationship with them. Others tried to find ways to protect themselves⁶⁷  and their loved ones in the grief process by concealing their pain^35,48 : “I think 1 of the issues of men in general, and it is always difficult to generalize, is that men do not communicate terribly well at the best of times, because we are always taught from school to be very stoic and all the rest of it, and we don’t talk about issues or problems or anything else.”¹⁷ 

This stoicism⁵⁹  appeared to relate to social assumptions around masculinity, which made their grief private and different to their “wives.”^15,17  Fathers received both positive^{14,18,35,37,48,68}  and negative^15,36,37  support with their loss-orientated tasks from friends and family. Some found the support of their partners and/or children to be crucial in their grief journey,^14,35,37  whereas others experienced challenges in their significant relationships after the child’s death.¹⁴  Talking and sharing with professionals and peers enabled fathers to work through their intense grief feelings and experience a sense of togetherness^18,37,48,68 ; this created a sense of a grief community.^15,34,36,42  This was not the case for all fathers; some lacked support, advice, and information from professionals, the workplace,^43,61  and from their social network, which left them feeling isolated.^15,35,36 

Fathers managed their grief feelings by keeping busy with everyday tasks and responsibilities,^{14,15,64,66,69}  keeping physically active^14,64  and engaging in leisure activities.^38,64  For some, their loss and restoration-orientated activities intertwined; they oscillated between the shock and trauma of their grief and the very practical tasks required as part of their loss and everyday life.^49,66 

This theme highlights fathers’ experience of having greater appreciation for their life and increased perspective associated with posttraumatic growth.

Some fathers’ loss was associated with an enhanced sense of aliveness and of their own mortality. Realizing the finitude of their life made them want to embrace it and have a greater appreciation for the everyday,^44,70  while recognizing the incredibility that they survived “the depths of hell” in terms of their emotional experience.⁶⁶  There was also a new appreciation for loved ones after their loss.^34,35,36,64  This helped some to keep moving forward¹⁴  although they felt “everything should just stop.”¹⁵  Many found new meaning in their lives, realizing what and who were important to them^15,17,36,52 : “… makes you appreciate the 1 you do have, that’s for sure … made a new friend … know that there’s people out there much worse than I am … well, I’m glad we had the little bit of time we did.”⁶⁴ 

Some focused on prioritizing quality of living, relationships,³⁶  and living in the moment.¹⁴  Fathers also experienced growth in their self-awareness³⁴  and sensitivity to emotions, becoming more empathetic,^14,17  compassionate, and reflective.¹⁵ 

Religion and faith played an important role in some fathers’ grief journeys.^{34,35,53,63,66}  These enabled them to step back, find the bigger picture³⁴  or something positive from their loss,^34,66  or to give thanks for the prayers their child received.⁵³  Some experienced heightened reliance on faith as a source of solace or hope for a positive outcome.^15,35,61 

This study shines light on the understudied population of fathers in pediatric palliative care. Our model (Fig 2) encompasses 6 multifaceted, overarching concepts describing a unique framework of fathers’ experiences of predeath and postdeath loss and grief. Our line of argument indicated that the traumatic event of an LLC diagnosis and subsequent death caused a self-crisis that marked fathers permanently and characterized them as burn victims¹⁶  or survivors.

There was an overlap between categories describing the predeath and postdeath loss and grief, which mirrors the clinical presentations and oscillations of grief symptoms. For example, fathers described trauma responses, ambivalent feelings regarding their loss, fatigue, anxiety and anger, unresolved grief, and guilt after receiving the diagnosis and postbereavement. There were specific elements of grief in the predeath cycle, which included distance-seeking or psychological minimization of the illness, reenacted past trauma, seeking control, and a complex/complicated relationship with hope, which was experienced as an emotional rollercoaster.^16,44  After a child’s death, fathers coped through remembrance and restoration- and loss-orientated activities; they sought to redefine life and find comfort in religion. Several fathers described an existential angst often experienced when bereavement brought them into contact with a sense of their own and others’ mortality and subsequent loss of meaning and purpose.

Fathers’ responses to loss seemed to relate to gender roles and socialization surrounding emotional expression.^15,17  Disenfranchised grief was particularly salient for their experiences; they were expected to support their families while describing a lack of control over their situation.^{15,35,44,60,62,65}  Some reported fragile support networks^15,35,36  and lack of support from staff,³⁷  as well as a deterioration in mental health,^{15,17,26,35,35,44}  including depressive and suicidal thoughts.^{14,17,44,60,64}  Physical responses included shaking, migraines, tiredness, a sense of physical pain, sleep disturbance, and nightmares.⁴⁴  Others experienced manifestations of the predeath loss and grief while maintaining hope^16,18,45,52 ; hope can be used as a resource during the illness course, as well as for subsequent grief.

Gender socialization theory suggests that men are socialized into a more nonverbally expressive manner than women⁵² ; fathers tended to express anger rather than work through emotions.¹⁵  Normalizing this difference between mother/father grief may support progress toward reducing perceived stigma associated with men accessing mental health support.⁷²  This, however, is an area that requires further study because this difference in emotive versus action-based coping may not be based in gender alone (or at all). In this regard, there are unrepresented fathers who have specific needs (young fathers who are often stereotyped as being especially irresponsible and uncaring⁷³ ; gay or single fathers⁷⁴  and those from ethnic minority groups).

The “new father” ideology of gender roles advocates for equal participation in caregiving responsibilities.⁷⁵  However, traditionally and culturally, differences exist between mother and father roles in parenting.⁷⁶  It is almost impossible for both parents to be “primary” caregivers; typically, health appointments are attended more frequently by mothers, who may be preferentially consulted by HCPs as a result.^{16,23,32,35,52}  This may lead to a “stepping back” by fathers.⁷⁷  During the coronavirus disease 2019 pandemic, hospitals restricted visiting access to only 1 parent on the wards and to outpatient appointments. Our study demonstrates the significance of including fathers in the decision-making, helping to counter a feeling of lack of control.⁴⁵  International policies need to prioritize the importance of family-centered palliative care.^12,13,78  Advancements in technology brought to the forefront by the pandemic, such as virtual appointments and flexible working, now make it possible to involve both parents in important discussions about their child’s palliative care.⁷⁹  In addition, we recommend that all forms of written communication include both parents; for example, “Dear mother and father.” When fathers read the word parent, they regularly assume that the letter is intended for the mother.⁷⁴ 

There are a range of support services fathers could access; however, these vary significantly across countries. In the United Kingdom, for example, palliative care and other specialist bereavement services vary widely; although many services are led by hospices, others are supported by specialist networks, including pediatricians, nurses, and support workers with experience/training in palliative care. A need for more consistent approaches and equitable access to community services is crucial.⁸⁰  In addition, navigating these services can be confusing for both HCPs and families, highlighting the need for clear referral pathways to prevent any further barriers to fathers accessing mental health support.

Bereavement support provided by hospices typically ends 1 year²¹  after death occurs, although interventions for grief symptoms may be most efficacious if offered at least 6 months postloss.²²  Some families may need extensive support. There is a pattern toward mothers seeking and receiving more social support.⁶¹  Allowing self-referral at any stage of the process may encourage father uptake of support available through national/regional organizations. This support should include predeath grief counseling to allow fathers to adjust gradually to their loss, online bereavement groups, and enabling positive memories to cherish. Exploring delivery and engagement preferences is vital because fathers may prefer to participate in briefings or updates rather than support groups.⁷⁴ 

Our findings indicate that grief is a nonlinear and adaptive process, without clear boundaries or a finite timeline. It is a composite of overlapping and fluid phases whose characteristics are comorbid at various points. Our recommendation is that palliative clinical practice needs to reduce prescriptive assessment of grief based on stage theory⁸¹  because not everyone goes through an orderly sequence of reactions with defined stages. The stage model of response to loss can have devastating consequences⁸² ; it does not enable professionals to identify those at high risk or experiencing complicated grief, nor to design and allocate appropriate treatment services.⁸³  It can result in ineffective support from social networks or potentially harmful responses by HCPs.⁸² 

A recent review³  identified 15 bereavement interventions provided by HCPs to support parents; only 4 commenced before the child’s death.^84–87  Our findings indicated that coping with the anticipatory feelings prepared some fathers for postbereavement grief¹⁵ ; for others, it had a negative impact on coping,⁶⁴  yet others distanced from the child to minimize the pain of the anticipated death^25,68  while maintaining hope,⁴⁴  or experienced a sense of battle.¹⁶  Such diverse responses make it difficult to assess when fathers are receptive to support and to create standardized intervention protocols for bereavement care during the end-of-life phase.³  Clinical assessment should include secondary stressors, such as ongoing personal and interpersonal factors, social and financial contexts^{15,26,35,36,62}  of grieving, and cultural⁸²  and religious meanings^{34,35,52,61,66}  which contribute to their coping. Effective coping alternates between 2 or more different coping strategies, depending on the demands at a specific time.⁸⁸  If HCPs could determine with which processes fathers experience difficulties, appropriate intervention components could be selected.³  Individualized approaches in synergy with compassionate listening, validation, and normalizing fathers’ experiences and preferred coping styles are needed.⁵ 

It is unclear how psychological treatment may exert its positive effects on grief.²²  Our model opens possibilities for support in the palliative care system in both the predeath and postdeath phases, including psychoeducation, self-care activities, and treatment of specific problems (sleep hygiene,⁴⁴  exercise and psychological/behavioral medicine for fatigue,⁸⁹  interventions for cognitive functioning,⁹⁰  anticipatory guidance about regret⁵ ). Fathers valued follow-up contact after a child’s death.³⁷  Our recommendation is that follow-up contact is an important part of palliative care services because it can result in positive reappraisals fostering adaptive coping behaviors.³ 

To our knowledge, this is the first meta-ethnography focusing on fathers’ loss and grief in the context of their child’s LLC; and the first attempt to develop a conceptual model that provides a dramatic window into the salience of their experiences in the predeath and postdeath phases. Several limitations are noted. Studies typically included relatively small samples of fathers. We addressed gender imbalance in pediatric research previously.¹  We argue that race, ethnicity, faith, immigration status, social class, (dis)ability, aging and gender diversity, and their association with loss and bereavement outcomes are underexplored in palliative care research.⁹¹  Most studies were conducted in developed countries; we advocate for culturally diverse designs coproduced⁹²  with bereaved parents; these should not necessarily request fathers to verbally articulate their emotional experiences (eg, the use of photovoice).⁵²  Longitudinal approaches to address grief symptoms at key time points are needed. Although fathers’ characteristics, data collection times, and settings varied greatly, we believe that their impact on findings warrants a separate and focused analysis.^1,5  Furthermore, we relied on the data reported in included studies, which may not fully reflect the original data; this may be exacerbated by the bias toward lower father participation in research.¹  In mixed samples, there was a bias toward mothers’ opinions. Seven out of the 11 studies focusing solely on fathers were conducted by female researchers^{15,37,44,58,59,62,69} ; none of these reported if/how unconscious bias around gender norms was managed, nor addressed it as a study limitation. Previous studies highlighted participants’ efforts to protect their masculinities had they been interviewed by researchers of different genders⁹³ ; this led them to emphasize some aspects about themselves as men while downplaying others.⁹⁴  Four mixed-gender research teams employed bracketing interviews,²³  auditability,¹⁶  peer debriefing process,⁶²  and experts by experience³⁵  to manage bias. This is an area that merits further research.

Fathers’ grief starts at child’s diagnosis of LLC and presents a mixture of difficult emotions which are comorbid at various points. Their responses to the traumatic loss relate to gender roles and socialization surrounding emotional expression. These are shaped by cultural, personal, and religious contexts. Many fathers experience disenfranchised grief and report deterioration in mental health; this is exacerbated among unrepresented categories of fathers. Clinical practice needs to reduce prescriptive assessment of grief and embrace individualized approaches aimed at normalizing fathers’ experiences and preferred coping styles.

HCP

health care professional

LLC

life-limiting condition