A qualitative exploration of fatherhood after acquired brain injury (ABI)

ABSTRACT

Acquired Brain Injury (ABI) significantly affects individuals across multiple areas of intimate, familial, and parental domains. Gender and identity are pivotal research areas in navigating life after ABI. To date, scant research has explored gendered experiences, particularly those related to the masculine lifeworld. This study aimed to explore how men who were fathers before their injuries experience fatherhood after ABI. An Interpretative phenomenological analysis (IPA) methodology was used, and seven fathers participated in the semi-structured interviews (time since injury 1-18 years, age range 27-66 years) which explored their meaning-making. Four superordinate themes were drawn from all interviews through engaging with the qualitative research process: (1) what being a father means, (2) altered relationships with others, (3) becoming lost and finding their way through, and (4) renewed fatherhood. The findings show intersectionality between pre-and post-injury comparisons of self and social identities, alongside the contextual and societal identities in the subjective fathering experiences. Through increased understanding, we may enable fathers to find new ways to resolve, reformulate, and connect to move into their future possible fatherhood. The importance of this research is in giving voice to these less represented men so that we may shape our understanding to aid future fathers post-ABI.

KEYWORDS:

• Acquired brain injury
• interpretative phenomenological analysis
• Lived experience
• fathers' Identity reconstruction
• adjustment

Introduction

Acquired brain injury (ABI) due to physical trauma or a medical condition radically alters the lives of survivors and those close to them. It often affects working-age adults (Turner-Stokes et al., 2015) with lower socioeconomic status (Hyder et al., 2007), with men 1.5 times more likely to be affected than women (Headway, 2017). ABI results in wide-ranging cognitive, physical, social, emotional and interpersonal changes (Kreutzer et al., 2016; Ownsworth & Haslam, 2016). ABI survivors experience poorer psychological and psychosocial outcomes than people with spinal cord injury (Dahm & Ponsford, 2015) and report a lower quality of life in contrast to other disabilities (Jacobsson et al., 2010). The complex, long-term, pervasive scale of ABI constitutes a severe long-term condition, rather than a “one-off event” (Masel & Dewitt, 2010). Adjustment involves a journey to improve self-esteem, make sense of experiences and gain control (Ownsworth, 2014). In their “Enduring Experience of ABI” model, Levack et al. (2010) propose that a successful journey of adjustment involves a “reconstruction” of self-identity, personhood and place in the world, achieved through access to both internal and external resources. It is unsurprising, that when ABI occurs at working age, developmental trajectories of key social roles and responsibilities of adulthood (e.g., Working, parenting, managing a household) may be disrupted. This relates not only to changes that survivors perceive in themselves but also responses of loved ones when these changes are perceived as negative (Bowen et al., 2009).

Parenting and fatherhood with ABI

Research suggests parental illness can significantly impact parenting (Baulderstone et al., 2012; Leinonen et al., 2003). Given the phase of life most individuals sustain ABI, many are likely to be or become parents with ABI (Holloway & Tyrrell, 2016). Difficulties include becoming less nurturing, orderly and rule-oriented with lower levels of active involvement and difficulty maintaining a warm, responsive relationship (Uysal et al., 1998). Inhibition and impairments of self-monitoring, noise intolerance, impulsivity and other cognitive deficits may also affect parenting (Smith & Godfrey, 1995). Edwards et al. (2014) researched parenting across genders after ABI and found themes of; multiple losses, resignation and uncertainty, family support and hopes for parents after ABI.

The role of a father is complex, and societal and cultural expectations influence a father's concept of himself in that role (Hermansen et al., 2015). Negative self-perceptions of parenting may reduce confidence and self-efficacy in fathers with ABI (Morriss et al., 2013). In psychosis, Evenson et al. (2008) found that parenting created prideful purpose for fathers, while Lundwall (2002) found fathers reported being more able to give, listen and offer more overt expressions of love improving their fathering. Research in post-traumatic growth suggests that personal strengths and possibilities, interpersonal relationships, self-perception, life priorities and appreciation increase over time following injury (Powell et al., 2007). Interventions informed by models such as the Life Thread model (Ellis-Hill et al., 2008), the Y-shaped model of rehabilitation (Gracey et al., 2009), the Enduring Experience of TBI model (Levack et al., 2010) and the global self-system model (Ownsworth, 2014) may help fathers move from narrow fixation on loss and change to wider acceptance and reconnection to family lives. In turn, this would support identity, continuity, and reconstruction in the face of changes caused by ABI.

Masculine identity in ABI

Self-identity refers to iterations and adjustments of self-understanding that become more constant from adolescence onwards (Ownsworth, 2014). For some individuals, there is disruption post-ABI in struggling with the challenges posed by the previous self-identity (Muenchberger et al., 2008). Gracey et al. (2008) suggest survivors need to make sense of themselves in terms of “meaning and doing” so subjective experience and activity come together. Living with impairment requires reframing and retelling of one's narrative to understand changed capacity, roles and relationships (Klinger, 2005), leaving behind assumptions from the past self to allow the future self to alter (Holloway & Freshwater, 2007).

Masculine emotional identity post-ABI faces barriers posed by changing social roles and perceived stigma (Freeman et al., 2015). Men are reported to rely on more traditionally masculine activities to define and support self-identity before and after ABI than women (Gutman & Napier-Klemic, 1996; MacQueen et al., 2020). Jones and Curtin’s (2011) study of men with traumatic brain injuries (TBI) noted that the “breadwinning” role and personal relationships were most disrupted. The men struggled to reformulate their values and altered participation as meaningful. Those men who successfully adopted new viable narratives accessed more adaptive, flexible and dialogic models of masculinity (Jones & Curtin, 2011). Traditional models of health emphasize female-centric approaches relying on help-seeking and emotional disclosure, which present further barriers to men (Kingerlee et al., 2014). Challenges that distance men from caring roles include a limited repertoire of skills and responses combined with the traditional expected public role (Seidler, 2006) but focus on perceived fathering performance can be shifted by the value and meaning parenting provides (Dolan, 2014).

A review identified only two studies that exclusively addressed fatherhood after ABI. One centred on parenting challenges and needs for fathers (Morriss et al., 2013) and the other explored a small parenting intervention programme (n = 2) (Weatherhead & Newby, 2008). It is essential that interventions and services reflect a good understanding of the perceptions and lived experiences of people with ABI (Levack et al., 2010). Current literature highlights a limited focus on the experience of fathers with ABI (Morriss et al., 2013). Given the limited attention, we aimed to explore men's lived experiences as fathers with ABI by answering the question, “In what ways do fathers experience being a dad after ABI?”.

Method

Design

A qualitative idiographic approach was employed to generate rich, detailed accounts of the individual meaning-making of fathers. Interpretative phenomenological analysis (IPA) was used as it is focused on “significant life experiences that often have implications for our identities, as they unfold in particular contexts” (Braun & Clarke, 2013, p. 181). IPA seeks to detail the individual subjective experience to initially understand specific phenomena while challenging the concept that knowledge is unbiased and objective (Smith et al., 2009). The philosophical underpinnings of IPA lie somewhere between Critical Realist and Social Constructionism (Larkin et al., 2006). However, IPA opens through the researcher's stance, which was critical realism with a phenomenologist perspective in this study.

Critical realism allows for both positivist and constructionist approaches to be considered (Fletcher, 2017) without having to reconcile competing epistemological assumptions, as it does not assume data directly mirrors reality but may tell us about reality (Harper, 2012). The phenomenological position asserts that reality may only be understood through our personal embodied experience and need not be realist or relativist in its approach (Harper, 2012). There are two connected levels of “making sense of sense-making” (Smith et al., 2009, p. 35), the participants’ experience and the researcher's interpretation, filtered again through own experiences referred to as the “double hermeneutic” (Smith & Osborn, 2003).

Participants

The gatekeeper at a local ABI charity approached participants who met the inclusion criteria to share study information and gain consent to contact. Criterion sampling was applied and aimed to represent a homogenous sample of fathers with ABI in active roles with pre-adolescent children. Sampling was led by the ability to recruit fathers with an ABI versus purposeful sampling of varied ABI presentations. The inclusion criteria for the study included: participants were fathers before their injury, were aged over 18 years or older, at least 1-year post-injury with a moderate-severe ABI., were fathers to dependent young children at the time of injury (aged 13 or younger) and had reasonable ability to recollect their fathering experiences pre-and post-injury irrespective of time since injury. Participants were excluded if they had become fathers since their injury, were aged under 18 years, had mild ABI or had significant cognitive, emotional, or substance misuse difficulties that would be a barrier to describe their fathering experiences pre-and post-injury after appropriate adaptations.

The remaining participants contacted the researcher directly from ABI charity websites with research recruitment pages where a recruitment poster was placed. Fourteen fathers expressed interest, of whom seven met the inclusion criteria and were interviewed, three did not fit the specified criteria, three were outside a manageable recruitment area and one father became ill and unable to participate. A summary of the research findings was offered to all fathers. Table 1 illustrates the contextual information of participants.

Table 1. Contextual data from participants.

Pseudonym	Age	Ethnicity	Marital status	Current family structure (age of children at the time of injury)	Nature of ABI	Time post-injury	Education	Post-injury employment
Oliver	66	White British	Married	Wife and daughter (2), older son from a previous marriage (22)	Road traffic accident (RTA)	18 years	University	Failed return to own business, took early retirement
Harry	50	White British	Divorced post-injury	Living independently, 2 daughters (4,2)	Encephalitis	6 years	University	Volunteering
George	35	White British	Married	Wife and daughter (3) and son (age at injury not recorded, age at data collection 3)	Haemorrhagic stroke	4 years	University	Part-time higher role with increased responsibilities
Noah	27	White British	Cohabiting	Partner and daughter (2)	Encephalitis	1 year	University	No
Jack	46	White British	Cohabiting	Partner and daughter (2), older son and daughter from a previous relationship (24,22)	Anoxia	4 years	A-levels	No
Leo	52	White British	Married	Wife and 2 sons (3,2)	Encephalitis	11 years	University	Previously a business owner, working full time in a different career
Oscar	35	White British	Separated from partner post-injury	With his mother, 2 sons live with an ex-partner (7,3)	RTA	7 years	pre-GCSEs	Previously a business owner now does not work

Data collection

The study received ethical approval from the University of East Anglia–Faculty of Medicine and Health Research Ethics Committee. An interview guide was developed and reviewed by peer support workers (n = 3) who were fathers with ABI. However, adaptations such as large print guides, regular breaks and checking continued contemporaneous consent were employed (Paterson & Scott-Findlay, 2002). Written consent was obtained before the interview. Seven fathers who met inclusion criteria were interviewed, by the lead researcher KC, a female trainee clinical psychologist either individually in their homes (n = 4) or charity centres (n = 3). All fathers were of White British ethnicity and aged 27–66. The interviews were audio-taped semi-structured individual accounts moving from description to lived experiences. The interviews ranged in length from 56 to 95 min and were transcribed into written accounts. All names were anonymised of participants and family members. Debriefing over the telephone occurred 24–48 h post-interview to check participant wellbeing. One participant noted increased emotional arousal having reprocessed his experiences and was signposted to the debrief sheet of services and supports to access post-interview, including their current service. Following the first interview, the topic guide was adapted to include questions about changes that may be noted as “silver linings” in their fatherhood and what they wished other fathers to know after ABI from what emerged during the initial interview. Following a review of the seven interviews, no further participants were interviewed. IPA sample size sufficiency was met such that information redundancy and data repetition occurred during the final two interviews (Vasileiou et al., 2018). Data saturation can be observed early in IPA research when seen as separate from, and preceding, formal analysis (Saunders et al., 2018).

Rigour

A detailed record was kept in a reflective journal (Smith, 2011). The reflective diary was used to note thoughts, feelings, impressions, challenges experienced by the researcher in engaging with the research. This helped to “bracket” off previous experiences and theoretical knowledge, to approach each transcript in a way that allowed the researcher to remain true to the experiences, meaning-making and new knowledge through their accounts.

To attend to methodological rigour recommendations from Yardley’s (2000) paper was employed. This included tracking notes and reflections around sensitivity to context; holding in mind the previous research into masculine identity alongside parenting after ABI, the acknowledgement of differences in gender, power, social and cognitive capital between researcher and participants, the offering of initial introduction to myself, my values and my interest in giving voice to those less empowered in the available research base while acknowledging the researcher's benefit. Secondly, commitment and rigour; use of reflective journal after interviews, training in IPA methodology, and analysis after all interviews conducted for completeness of the data. Thirdly, transparency and coherence; transcripts were all coded and clearly documented how the research process developed from the initial set into findings and reviewed by the research team for consensus but based on the coding and reflexivity of the lead researcher. Lastly, impact and importance, the researcher is specifically motivated to challenge the lack of research in a novel unserved population to open up new possible understandings and to have further research and practical impacts for those who it may serve through their participation (Yardley, 2000).

Analysis

To reorient to the data, interviews were initially reviewed aurally. The first interview was transcribed by the lead researcher and all others professionally transcribed, then cleaned into verbatim word-for-word scripts by the lead researcher. An IPA analysis begins by reading and re-reading transcripts to enter the lifeworld of the participants with researcher impressions noted separately. The first author read and reread the transcripts employing an idiographic, contextual, and iterative process from which emergent themes were generated for each transcript. Line-by-line exploratory coding was completed that identified descriptive, linguistic, and conceptual ideas relating to the phenomenon of fatherhood following brain injury. The researcher interprets the interpretation given by participants into emergent themes. Case-by case before progressing to cross-case analysis using multiple tabs to track and audit progression. This was collated in a single excel file, contextualized into patterns of connections that represent subordinate themes.

From subordinate themes, overarching patterns are identified, and superordinate themes drawn from the connections and resonance built across these accounts. Focus is given to individual lifeworld's, after which commonalities of experience are highlighted through areas of convergence and divergence across the individual experiences (Smith et al., 2009). Each superordinate theme was present in the interviews, and each stage of analysis was reviewed by the second author and further verified through collaboration with the third author. Cross-checking of interpretation was undertaken by the research team, not to encourage a correct interpretation, but to ascertain the credibility and validity of the interpretation offered by the lead researcher. Multiple interpretation and perspectives may be possible from the nature of the research. This step endeavours to revisit the coding and interpretation and to strengthen the interpretation offered by the lead researcher.

The following steps were followed in the analysis: (1) Read and re-read initial interview transcripts initially listening to the audio interview (2) Begin exploratory coding of transcripts line-by-line to identify themes (3) Develop exploratory comments into clustered emergent themes (4) Contextualize emergent themes into subordinate themes (5) Case by case analysis is completed before move to cross-case analysis (6) Superordinate themes are identified across accounts and (7) A cohesive narrative based on these themes and supported by direct quotations is prepared. The research aimed to stay with the uniqueness of the individual experiences yet choose selected quotes from the representative transcripts that most clearly portrayed the lived experiences of the phenomenon as understood through the superordinate themes identified.

Results

Four superordinate themes were actively drawn out of the interviews as important in making sense of fatherhood after ABI: (1) what being a father means, (2) altered relationships with others, (3) becoming lost and finding their way through, and (4) renewed fatherhood. Each theme was present in all interviews and is organized in Table 2.

Table 2. Summary of superordinate themes and subordinate themes.

Superordinate themes	Subordinate themes
1. What being a father means	How fatherhood was shaped, Being an unfamiliar father I want to be a role model
2. Altered relationships with others	A different father-child relationship Partner relationships and fathering
3. Becoming lost and finding their way through	Guilt and shame as fathers I just wasn't capable of doing it
4. Renewing fatherhood	Resolving the self in fatherhood Finding a new fatherhood

Theme 1: What being a father means

All fathers shared how living with ABI influenced and continues to influence fatherhood in their lives. They talked about the experiences that shaped their sense of what being a father meant pre-injury, changes in how they approached being a father pre-and post-injury, and their hopes for being a role model to their children.

Theme 1a: How fatherhood was shaped

All fathers shared different ways, before and after injury, that their personal beliefs, attitudes and life experiences shaped their understanding and engagement with fatherhood. The accounts of George, Leo, Jack and Oscar emphasized a continuation of being fathered, building upon what they had received, and the importance of duty and responsibility handed down and experienced generationally in life.

What my grandfather said to me was the only thing I can ever give you is a memory. Everything else that I give you, you know, I’ve given you a fountain pen, and it will wear out, and it’ll go. He said right up until the point that you die, the things that you’ll keep about me will be the memories that we had, right? And it sticks there. (Oliver)

Oscar shared his sadness at not living up to the promises he made as a father before his accident. He described the feeling he had “lied” and betrayed his son by preventing him from engaging in the shared hobby he had learned from his father before him. George noticed the constraint of having an idealized picture of fatherhood in mind more sharply against which he contrasted himself post-ABI. He identified that this did not represent his father but struggled with negative self-comparisons to this imagined “good” father figure. To remain consistent with his values, he reinvented his fathering.

I could see myself being a good dad, that is possibly why I beat myself up a bit about things I can't do because I have–you have this ideal picture in your head about what a dad does and what he can do […] I can get my electric wheelchair, zoom after them chase him around the park. […] I do remind myself, but you do have this ideal picture of what a dad should be. I remind myself, and I’m reminded by others constantly I’m a good dad, and I still am able to do that, so I don't have any issue so much anymore. (George)

Theme 1b: Being an unfamiliar father

Fathers discussed difficulties with feeling unbalanced and not good enough emotionally, cognitively and physically after their changed life trajectory. They often found themselves making negative self-comparisons of their fathering abilities post-ABI without noting the continued threads of their abilities in remaining a father and being a father even with the difficulties that they encountered.

I think it's been very different being the father with a brain injury to being a father without the brain injury. My wife says that the time, whatever that I spent with Matt before is much more than I’ve done with Hope because my patience is so much less. That's a big difference when my patience is so much less. Ummm, I did enjoy, I have enjoyed playing with her and whatever, but it's not been as extended as it was, and I think she suffered because of it. (Oliver)

They highlighted the concurrent struggle they perceived in themselves in attending to their recovery or their children, where focusing on one of these parts overlooked and sacrificed on behalf of the other side of the dialectic.

I think there are times when I think about that, just lying in bed and not interacting with them, when I hear themselves playing and stuff, and I’m not playing with them outside and stuff, I think I’m being a bad dad then. Then I remind myself that to be a good dad, I’ve got to do these things [rest and pace myself] in order to be ready and fit and awake to do things later. It's about balancing again. (George)

Struggling in their changed fatherhoods, needing to juggle caring for themselves and caring for their children many of the father did not recognize themselves in their actions. Half the fathers spoke about having to then circumvent and find ways of adapting that increased self-acceptance and benefitted their ongoing fathering in the long run.

Theme 1c: I want to be a role model

All the fathers spoke of wanting to be looked up to and set an example for their children over time. They wished to model and showcase themselves as fathers, with the skills and values they received in their parenting experience from their fathers that had been passed down through childhood experiences.

I think I want to be a role model. I want to act with integrity and to be … It is very important for me to be a good role model for them. I’m their male role model. I think it's very important. I really want to be that as well. I want to be their role model. That's very important to keep up … I suppose, what I would hope is that they would learn how the way of being, like, way of being with life and way of approaching the world. I would hope that they would learn something from me about that. (Harry)

George uniquely focused on “handing down knowledge, and a way of acting” specifically skills no longer possible in the same way, e.g., Playing the guitar. George noted his ABI experience created a time of being re-parented by his father as an adult. His father experienced a significant health event and, in the process, modelled moving from rumination and uncertainty to finding ways of adapting and coping. George's father helped him re-enact fatherhood by being a role model and aiding his understanding.

It's that role of a dad, a teacher and support. He's still going that in the same way, I’d like to obviously continue with my children. It's nice to see a few generations. These moments in life, you reflect on it, don't you? I think that you reflect on what the role of a dad is and what he's doing for me and then what I can do for my children in turn. That's what builds up generation on generation. That's really nice to see in a way and nice to stop and reflect on those things occasionally. That's something positive to take out. (George)

Oliver, Harry, George, Noah and Leo discussed offering an identified role model scaffold for their children such that they could learn from them as fathers. This appeared to be strengthened by experiencing ABI and developed from the lessons learned in the recovery process. It built resilience in forging forwards when challenged by their individual life experiences.

Theme 2: Altered relationships with others

Through discussion of parent–child relationships, it became apparent that ABI influences the interconnectivity and interdependence across other relationships. This was woven through fathers’ subjective experiences of changed relationships, influencing how “present” they felt as fathers at various timepoints.

Theme 2a: A different father–child relationship

Almost all the fathers shared shifts they felt within the roles and responsibilities of fatherhood. These changes appeared to impact fathering and influenced the fears held about their children's future.

I worry the effects it's having on them. They seem to be coping actually fine, but you never know quite what's going on inside and what they’ve taken on board. I do worry that the combination of the brain injury and divorce is putting quite a legacy on them really. (Harry)

Fathers faced a struggle to remain assured in their parenting when ABI challenged previously known fathering skills and abilities. Oliver described an early loss of control in his fathering role and a change that as his daughter has aged into adulthood, she has begun to swap into his guiding role more and in turn helped him to navigate his difficulties.

The other thing is as she's got older the roles have changed very much. There are times where she and I are out, and she becomes the parent. Right … and when she sees that things are getting too bad for me, she becomes quite protective, that's what I’m saying, she becomes the sort of parent as it were and am deals with, she's pretty good like that. (Oliver)

Many of the fathers expressed sadness that their children had not received “full value” (as Oliver worded it). In some ways they felt they had cheated their children in some way through no fault of their own after ABI. It was unclear if this was their individualized beliefs or whether they had internalized a narrative about themselves as fathers in an ableist society against the backdrop of a hidden disability.

The trouble is the youngest boy he don't really know me, the oldest boy do because he was always with me no matter what, every time he's always with me. He said, “You were a lot better before dad when you were not--. But I try my hardest you know, that's all I can do the thing is, I have to tell him day in and day out what's wrong with me, and that get to me as well because that makes me [expletive] remember. Excuse my language, but it makes me remember, it makes me have to go over it. That's the hard bit. It makes you re-live it, even if you don't want to. (Oscar)

Most fathers felt their children had “suffered” and continued to be affected due to their father's injury. Oscar perceived himself as being less of a father to his children; however, his oldest son reminds him of knowing a different before-father that perpetuated his suffering. Oscar's “stuckness” in prior fatherhood and the new parenting experiences appeared to devalue his sense of self rather than motivate, as the other fathers reported.

Theme 2b: Partner relationships and fathering

Oliver, Harry, Noah and George noticed the struggles after ABI affected not only their parenting but also their partner's parenting; things that were lost to the father were picked up by the mother, at times leaving less time for a mother's role.

We were fighting to survive my wife and I … At the time she wanted to be a mother to her child as well, so there's a certain bit of resentment from her because she wanted to have the time and me having the accident swapped those roles around. (Oliver)

Elements that once sat as part of their father's domain were maintained by assimilation of the breadwinner role, increased responsibility and taking charge required through the mother for the family at that time in their shared lives.

She was never the leader, she was always led, right, but what's happened is this caterpillar, okay, right has changed completely. She's held our relationship together, she's seen where you know I’m no longer capable of doing the things that I could do, she has accepted that and gone with it. (Oliver)

This changed, coupled landscape appeared to affect how fathers perceived their parenting. Fathers who remained coupled increased their focus on their children, working to maintain family life, while others now single were forced to navigate continued fathering from an unknown isolated place. This was most starkly highlighted by Harry's sense that he had been quietened, broken down and shut out from his family and from his home.

[I] think because of the brain injury, she just completely rejected me … just absolutely not my wish at all. The reason is, and I’m not sure quite how to put this, but my wife has such a negative view of my brain injury, such a negative view [at this point the feeling in the room was of heaviness highlighted by the barren environment of his single bedroom flat]. In her eyes, it is completely, wholly bad, and I’m much less of a person for it. (Harry)

Similarly, Jack and Oscar also shared the sense they were alone, left to singularly and solitarily figure out how to parent from this unknown and unfamiliar place which impacted their relationships with their children. “If you didn't cause this [having an affair that split the family up] I’d have my kids every day”. (Oscar)

Theme 3: Becoming lost and finding their way through

All fathers spoke about how their emotional responses to changes impacted fatherhood. They spoke about how changes to their bodies and cognition influenced how they viewed themselves as capable fathers to their children.

Theme 3a: Guilt and shame as fathers

All fathers, except George, commented on experiencing guilt and shame, which affected the view they had of themselves as fathers. Oliver referred to “shared memories” that were central to his experiences growing up. He feared his own most tough time may have indelibly marked his daughter's life, which she would carry through life.

where I was really running out of patience and couldn't be bothered with her and […] that is a disappointment, very much a disappointment and I’m hoping it's not stayed with her […] That's all you ever give your children, you know is your memories, and that's what comes back to me […] I remember the good ones, I remember the bad ones, and so you wanna give your kids the good memories. (Oliver)

Many of the fathers alluded to the weight of outside scrutiny on their family lives, worrying about how they may be perceived or judged as fathers. Oscar, through his mother taking responsibility away from his parenting, felt undermined. He struggled with understanding himself and found her inability to see his perspective further isolated him in managing his ABI and being enabled as a father.

When I first came out (rehabilitation centre), I got a meeting set up for her to go in there so she could understand what I’m like and understand what to respect. Did she go? Did she [expletive], she went, “I know my [expletive] son, I don't need no one telling me about my son.” “But you do mom because I don't even know about myself. How can I?” But if she went, they would have told her like what to watch out for and stuff. What happens when … and it got me down. (Oscar)

He expressed feeling alone in his ABI, misunderstood by everyone as who else “could know” what it means to have “my brain injury” as it was his life that was forever changed.

Now I go, “I need help.” Who's there helping me? No one. Not a [expletive] one person. All my mates are gone, everything. All I’m left with is me [clears throat]. (Oscar)

In contrast, when George struggled with difficult emotional thoughts relating this to others and his lifeworld this worked in an opposing action and engendered a sense of positivity.

It's always those thoughts about being a dad and family that pull me out of those negative … Rather than making it worse, they would be the things that pull you back … When I get negative thoughts, it's always family and being a dad, that's the thing that is the shining light in the sky that's being positive. (George)

Theme 3b: I just wasn't capable of doing it

Throughout Oliver's interview, his responses to his experiences of loss centred on capability and self-expectation in being an “able” father.

Yeah, yeah, and you become really um you feel that you’re not as capable and you’re not able to offer your child what you feel you should be offering them, and it's through no fault of your own, but you find that pretty frustrating and you try to do more. And, with this brain thing, the more you try to do the work out becomes, you know? You know the brain got messed up, and I was just like jelly, and I was of no use whatsoever, and I just felt, you know, just felt like a right dick basically, sorry, you know built everyone up that I was gonna help him do this (put together fitted wardrobes) and then I just wasn't capable of doing this, you know. Stupid [expletive] … ugh. (Oliver)

For Noah, his feeling of being less “able” as a father resonated through his memory loss. It felt “unreal” to rely on his partner for his own experiences beginning fatherhood.

It's a bit weird because when you’re shown a picture, you don't know whether you’re then creating a false memory because you’ve seen that picture or whether you actually remember it. It's incredible being told things that happened. Then, trying to imagine them happening. (Noah)

He grappled with his disconnection from his memory of fathering and feared this untethered sense of himself as a father may continue. “Me never having fully recovered from the encephalitis and her [his daughter] having to learn how to deal with that” (Noah). He described the difficulties in cognition influencing his construction of adaptive meaning from his experiences.

Theme 4: Renewing fatherhood

Almost all the fathers noted novel ways of fathering that resonated with reforming as fathers in their families. They shared gratitude and appreciation for their continued presence in their children's lives and hope for their shared futures together.

Theme 4a: Resolving the self in fatherhood

Jack spoke with sadness about the loss of parts of his previous self-identity. However, putting his children's needs before his own allowed him to continue as “provider”,

Well, yeah. I can't be Mr Stressful anymore. I like it. If somebody came around and argued with me or something like that, I’d end up fighting or things like this. It's just a male thing how I’ve been brought up, but now that's really took away by the heart attack, ticker being flimsy … I don't want to cause harm to my children and all the rest of that. I don't want to have that on my head. (Jack)

For Leo, the reciprocity of mutual love and support experienced throughout the family helped him to reformulate and rebuild his own fathering identity over time.

I think it is to be patient with yourself it sounds a bit of a cliché but to understand that things do change over time, don't expect an instant and it will all be different now, it doesn't happen like that. It's an adaptation and be kind to yourself and accept that things change. I’ve talked about the whole family situation, and so we’ve had to maintain, or to look at it as a sort of mission at the moment, is maintaining stability in the family, with difficulty, but someone is going to work, and someone is in hospital; in fact, we will have great challenges to meet, but how we still help each other and support each other, and around giving each other time and a type of understanding, and there's also on a positive note that things do improve in time and that things, so don't think past the end, nothing will ever change, because things do change. (Leo)

Theme 4b: Finding a new fatherhood

Many of the fathers grieved the loss of their previously held sense of themselves as fathers. They emphasized finding alternative ways that allowed them hope, comfort, and purpose as fathers over time. Harry shared his increased appreciation and gratitude for life with his girls, specifically referencing post-traumatic growth as enabling him.

My life has been completely devastated, to be honest, by brain injury and then divorce. I have had to find myself a new purpose and a new role for myself. As so it's, now, it's very important for me that I pursue work and volunteering that is somehow meaningful. It's all about how you provide meaning. One thing around that is the girls and being dad, and the other thing is around work, work on pay or voluntary work. Both those things are really key. (Harry)

Oliver said that the continued love and acceptance from his children gave him hope and purpose for their futures together. Having this acceptance allowed him to be the father of his earlier beliefs, without feeling constrained by times when it does not go right.

Life isn't a rehearsal, and so because of that it's one of the big lessons that comes from this sort of thing, and so you really just want your kids to sort of enjoy. (Oliver)

For George, when challenged by difficulties, he consistently found ways to overcome or positively reframe his fathering, he worked to not become stuck. Partly, this related to normalizing the ups and downs of parenting and continue to live life with his family.

I guess it's a coping mechanism in a way. When I get down or feel like low and thinking, oh, why did this happen, one of the things I remind myself is I’m so lucky to have these opportunities. There have been things like silly little things, things my dad told me again, things my dad passed to me, he's been there all my life, and then he's still there in the background chipping in points of wisdom. He used to say to me so many bad things will happen or it's affected in so many bad ways. He really has to look at the positives, and he really does remind me of that himself, actually. Again, I’m still taking that from him the same way that I’m doing to my children. (George)

Central in each father's account is the cherished importance fatherhood plays in their lives post-ABI. This is the centralized tenet where from they navigate this unfamiliar territory. A tenacious cord of hope is witnessed, allowed to be and grown into “good fathers” even from the smallest kernel within themselves.

Discussion

This study used IPA to explore the question: In what ways do fathers experience being a dad after ABI? Four superordinate themes were identified: (1) what being a father means, (2) altered relationships with others, (3) becoming lost and finding their way through, and (4) renewing fatherhood. The descriptive richness of experiences varied among participants, possibly reflecting the impact of varied ABI on cognitive and emotional abilities, however, it does not lose the unifying characteristic of being a father with a brain injury. The current research provides insight that adds to prior literature and has implications for future research and clinical interventions.

What being a father means

Previous literature on parenting and fatherhood after ABI has focused on adapting pre-injury identity to post-injury circumstances. In contrast, the current study provides insights into the specific issue of fatherhood. The theme of “what being a father means” highlights how their own experiences and self-perceptions influenced the fathers in their ideas of fatherhood and wishes to set a good example for their children. This appears consistent with the Morriss et al. (2013) study, which found fathers contrasted themselves against what they “should be like” as parents, but differs from Lundwall's (2002) study, where parents’ power and identity appeared to change for the worse with a disability. The theme of being a role model appeared to allow consistency with their prior values and ways forward so that they could be “good” fathers. Edwards et al. (2014) reported specific difficulties centred on multiple losses as parents, whereas the current study expressed adaptation and compensation in the fathering role. Our findings resonate with aspects of post-traumatic growth (Powell et al., 2007) and support MacQueen et al. (2020) finding that adaptation motivates fathers to feel enabled in their roles.

Altered relationships with others

The current study supports Charles et al. (2007) findings that post ABI parents struggled in their parental relationships. Unlike Edwards et al. (2014), distance in the parental relationship was noted by only one father. Their study like Morriss et al. (2013) described the issues in parental contributions of knowledge, skills and applied parenting after ABI, but this was not discussed by the fathers in the current study. This may indicate a unique perspective of parenting was shared as part of the fathers’ lived experience not freely generated through this research. In the present study, the fathers spoke of a disadvantaged child from having a father with ABI. Over half the fathers directly highlighted meaning, value and prideful purpose as fathers in their accounts of their parental relationships, which resonate with Dolan’s (2014) findings regarding fathers with ABI and fathers with psychosis (Evenson et al., 2008).

Threaded through all the fathers’ accounts were experiences of underlying relationship difficulties that influenced feelings of guilt, burden and shame in line with previous reports (Freeman et al., 2015). This supports the idea that coupled relationships may be vulnerable and challenged by ABI (Gill et al., 2011). In contrast to previous research (Morriss et al., 2013), over half the fathers were in coupled relationships that appeared to have weathered post-ABI challenges. Many fathers in the present study found ways of coping with and continuing their relationship through interpersonal adaptations by both partners. Additionally, family-based adaptations supported their fathering role and motivated them to fulfil their partnered role. This was particularly noted in Leo's account of finding mutuality in and among family members that allowed give and take across the parent–child relationships and the parent coupled relationship.

Becoming lost and finding their way through

The fathers in the current study shared difficulties with physical and cognitive changes, but this was interpreted as emotional responses to feeling less capable or able to reliably respond as fathers, like under the theme of self-perception in the MacQueen et al. (2020) study. The fathers here focused on the emotional impact of changes in the context of being part of a family. In contrast to Morriss et al.'s (2013) study, only one of the fathers reported low self-confidence and self-efficacy in their perceived parenting ability. Another study noted when family narratives were misaligned, survivors feel isolated, experiencing a “moving out” from the family (Whiffin et al., 2017). Similarly, “conflicts and gulfs” in the narratives between family members have been noted to damage relationships (Couchman et al., 2014).

The examples fathers gave highlighted where they felt they had failed themselves and others through their inaction or inability, their rumination, and managing emotions like guilt and shame. This supports the findings of embarrassment and shame reported in MacQueen et al. (2020) study, although less reported in previous research around masculine identity (Freeman et al., 2015) or parenting after brain injury (Edwards et al., 2014; Morriss et al., 2013). Additionally, the fathers reported feelings of loss and isolation about their fathering role and spread across other roles and areas of their lives. This mirrors what Simpson et al. (2000) reported, that individuals reported experiences of social isolation and stigma after ABI. The fathers here shared experiences like the oscillatory movements in adapting and adjusting to their parent role described by Edwards et al. (2014).

Renewing fatherhood

Ruppen et al.’s (2016) study of fathers noted that being a father and occupying a fathering role has varying degrees of fulfilment and perceived constraint. This may have both positive and negative impacts on men's well-being; however, the range and salience of roles open to men are related to the centrality this fathering role played in their lives before the injury and whether this has shifted (Rane & McBride, 2000). George's account highlighted management of challenges and increased coping, drawing on his past values and meanings as a father. He offered himself a flexible repertoire of narratives reinforced by his partner, family, the family of origin and work colleagues, and suggested that other fathers can find “ways of adapting” or “ways to overcome”.

Most of the fathers in the current study expressed hope for continued fathering abilities. Kingerlee (2012) noted that men, and particularly those who identify with ideal traditional masculinity, are culturally normed to seek ways to save face and retain status; instead of resonating with the emotional difficulties and areas of perceived weakness that impact recovery and well-being. Hoskins and Leseho (1996) note that multiple possible selves and expanded roles in society allow survivors opportunities to develop. This was evident in most fathers’ accounts, although those of Noah, Jack and Oscar describe struggling to move from evaluation to a place of hope that allows reformulation of self and father identities. It may be that in these cases dominant hegemonic masculinity is perpetuated at the expense of working on areas for acceptance of new viable roles and responsibilities in familial and cultural contexts (Kingerlee, 2012).

The findings here demonstrate a constant interplay between pre-and post-injury comparisons of self and social identities as seen in the study by Muenchberger et al. (2008). The theme of hope and aspiration noted in the study of Edwards et al. (2014) and the theme of re-evaluating life and values in MacQueen et al.’s (2020) study is also supported through this study. Nochi (1998) noted that individuals at a most fundamental level must change the appearance of the past and future, revising self-narratives in recovering self-identity after TBI. The fathers in this study sought different ways to find meaning and value. Through employing different ways to engage in meaningful occupation and find merit in their changed family life.

The current study provides a contrast to previous themes of multiple losses (Edwards et al., 2014) within the specific issue of fatherhood. It highlights adaptation and compensation through the fathering role that resonates with the areas of post-traumatic growth (Powell et al., 2007) and role adaptation (MacQueen et al., 2020) which was not identified in the prior parenting after ABI study (Edwards et al., 2014). George's account specifically highlighted a flexible repertoire of narratives that increased his ability to cope and were reinforced by his partner, family, and work colleagues as “ways of adapting” or “ways to overcome”. Over half the fathers directly highlighted meaning, value and prideful purpose as fathers in their accounts of their parental relationships, which resonates with Evenson et al.'s (2008) study concerning fathers with psychosis and Dolan’s (2014) findings regarding fathers with ABI. This study highlights how fathers’ own experiences and self-perceptions influence their ideas of fatherhood; while embodying the role model allowed consistency with their previously held values to viably shape a future as “good” fathers.

Limitations and strengths

The double hermeneutic allows other possible interpretations, however, this is the singular interpretation of the lead researcher and does not claim to offer an absolute truth. However, while there may be untold narratives to be explored there remain untold stories. This study builds an initial understanding and possible transferability to similar populations of men who are fathers. It may be argued that asking individuals to contrast past and present allows the idealization of the former self (Ponsford et al., 2014). The focus for the IPA and this research is sense-making around the role of fatherhood contextualized within ABI. The IPA methodology in this respect is a strength that explores the lived experience of meaning-making for fathers after ABI that may guide additional research.

Research implications

Utilizing models such as the life thread model (Ellis-Hill et al., 2008) and the Y-shaped model of rehabilitation (Gracey et al., 2009), may confer hope for resolved and future possible selves with viable protective roles and identities identified and strengthened from drawing on their values (Ellis-Hill et al., 2008; Gracey et al., 2009). Further research exploring this with fathers, creating personal rehabilitation narratives that work-life threads of past identity, situation and future possibility into intervention specific protective narratives could be furthered. Additionally, broadened exploration of the family and systems around a father with ABI using the enduring experience model (Levack et al., 2010) could elaborate context-specific internal and external resources that help move a father between disconnection and reconstruction.

Further research is needed to explore how fathers approach possible future selves and the reconstruction of identity, as what is novel is the capturing of the previously unvoiced narratives of fathers’ relational accounts identified in the current study. However, this future research could be widened to explore concepts at the individual and family level using qualitative collective or multiple-case study approaches, to account for the relational contexts identified in the current study. Additionally, complimentary research on mothers and motherhood would address other evidence base gaps around specific parental roles and social context in understanding gendered identity experiences after brain injury.

The findings here provide an initial understanding of the importance of the narrative context and relationships in understanding fathering experiences after ABI. It suggests a strong centrality of specific relationships, narratives or social contexts that begin to provide the framework for negative judgement, but also the opportunities and experiences that support the reinvention of fatherhood.

Clinical implications

Highlighted is a complex dynamic between personal and relational narratives, at individual and systemic levels, in fatherhood experiences. The findings here support the concept of reformulated male identity (Jones & Curtin, 2011; MacQueen et al., 2020) particularly available to fathers. Specifically, the themes highlighted the need to assess relationship functioning for fathers, in both parenting and partner roles after injury. From the current findings, interventions that explore relational work, as well as full family therapy intervention after brain injury (Bowen et al., 2010), could be most beneficial for fathers. The multiple-family group interventions piloted by Charles et al. (2007) identified positive changes related to isolation and shame, and opportunity for mutual support, sharing of arduous experiences, and increased compassion. This may lead to collaborative learning from social context and intersubjectivity, which allows the identification of strengths and opportunities in the person's own valued contexts.

Conclusions

The theme of hope and aspiration noted in the study of Edwards et al. (2014) and the theme of re-evaluating life and values in MacQueen et al.'s (2020) study is supported through this research. However, fathers in the current study sought different ways to find value and merit in their changed family lives through meaningful occupational roles. Their experiences lend support to Levack et al.’s (2010) model in achieving personhood in the context of disconnections between self and others. It may be that the dominant hegemonic masculinity is perpetuated at times at the expense of new viable roles and responsibilities in familial and cultural contexts (Kingerlee, 2012).

The findings demonstrate a constant interplay between pre-and post-injury comparisons of self and social identities. This focuses attention on the contextual and societal as well as the subjective fathering experiences. Through increased understanding, we may enable fathers to find new ways to resolve, reformulate, and connect to move into their future possible fatherhood. The importance of this research is in giving voice to these less represented men so that we may shape our understanding to aid future fathers post-ABI.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was supported by the University of East Anglia as part of the fulfilment of the Doctoral Programme in Clinical Psychology.

Appendix A:

Interview Guide

1. What is it like being a dad?

   1. For example, tell me about what it is like being a dad for you? What you do, feel, show, think … 

   2. To do with playing and activities perhaps?

   3. To do with domestic life, like cooking etc?

   4. How about school related things like homework?

   5. What would other people say about being a dad right now? What kind of dad would other people tell me you were? What do you think your children would say if they were here now?

2. Tell me about any specific times where you have really been a dad? Or times when you feel you have not been as dad like. Specific instances and occasions, more like that or different to that?

   1. How did that feel? What did it mean to you at the time?

   2. Is this what you thought you would be doing at this point?

   3. How might “that” change going forwards?

3. Before being a dad what did you think it may be like?

   1. What was your life as a dad like before (without a brain injury)

4. How do you see yourself now as a dad?

   1. What comes to mind when I say that?

   2. What does that mean to you as a man or husband

   3. Have changes occurred? (to your role as a dad?) (Prompts re: busy environment, managing emotions, leisure time together)

5. Have you allowed yourself to think about the future?

   1. What do you think you may be like as dad in the future?

   2. What will that mean for you?

   3. What that means to you as a man or a dad or a husband.

   4. How might things change for you as a dad as your children get older?

6. What drew you to share your experiences today?

7. Are there unforeseen parts like silver linings or positives you never imagined you would take away from your experiences?

8. Anything else that you wanted to say about what is it like to be a dad now?

9. Anything else you wished to share with me that would be useful for us to know/other dads?