In Canada, children and youth with neurodisabilities (i.e. cerebral palsy, autism spectrum disorder, epilepsy, or learning disabilities) represent between 8% and 9% of the general population (Arim, Garner, Brehaut et al., 2012; Arim, Miller, Guèvremont et al., 2017). Neurodisability is a term that refers to a broad group of congenital or acquired long-term conditions that create functional limitations and vary in severity and complexity, impacting areas of mobility, cognition, hearing and vision, communication, emotion, and behaviour (Morris, Janssens, Tomlinson et al., 2013). The more complex the neurodisability (ND), the more complex a parents’ role becomes. Parents will be called upon to manage multiple healthcare encounters, access and navigate complex healthcare and social service systems, make difficult decisions about their child’s treatments, surgeries, medications, while simultaneously juggling practical issues of paid employment and attending to other caregiving responsibilities and relationship matters. These parents often experience physical and mental health challenges that are related to parenting their child with behavioural and physical support needs (Lach, Kohen, Garner et al., 2009). These parenting contexts can negatively influence how consistent, positive, and effective parents perceive themselves in their role (Arim, Garner, Brehaut, et al., 2012; Garner, Arim, Kohen et al., 2011).

Research on parenting children with disabilities has revealed the joys, challenges and opportunities of parenting, yet has mostly drawn on mothers’ reports (Bogossian, King, Lach et al., 2019; Ketelaar, Bogossian, Saini et al., 2017). In general, when fathers are included as study participants, the influence of their participation and involvement in child-rearing on mothers’ wellbeing is often the focus of research (For examples, see: Kara & Yıldırım, 2021; Song, Chun & Choi, 2015). While these studies are useful for generating understandings of co-parenting dynamics, the unique experiences of fathers can be ignored. Research examining fathers’ unique experiences has grown over the past thirty years in line with social trends that value fathers’ unique contributions to their families. Yet, these studies are still quite rare, and their results indicate a continued need for researchers and professionals working with children and families to consider how to better integrate fathers. In the context of research on fathers of children with neurodisabilities, Garry Hornby’s work on fathers’ awareness of and adaptation to their child’s condition and their perceived exclusion from child and family interventions (Hornby, 1992) continues to be supported in more recent work (Ogourtsova, O’Donnell, Chung et al., 2021; Potter, 2017). This phenomenon suggests that it is important to better understand how fathers are doing in order to better support them. For instance, a systematic review that separated fathers’ self-reports from those of mothers revealed issues of social isolation in parenting, higher levels of distress in parent-child interactions and lower perceptions of competence and satisfaction in their parenting abilities (Bogossian, King, Lach et al., 2019 ). The state of research on specific social support for fathers of children with neurodisabilities is still in its infancy. However, promising new work underscores the need to develop more tailored family interventions (Bogossian, Lach & Rosenbaum, 2016; Ogourtsova, O’Donnell, Chung et al., 2021; Pancsofar, Petroff, & Carlani, 2021).

Research from the field of social work provides few guidelines to support social workers. Within their families, fathers have been regarded as peripheral actors (Greif & Bailey, 1990; Shafer & Bellany, 2016; Shafer & Wendt, 2015; Shapiro & Krysik, 2010), whose presence has been tied to notions of risk (Scourfield, 2001; Skarstad Storhaug & Oien, 2012), and whose absence is most commonly related to discourses of uselessness or indifference (Brown, Callahan, Strega et al., 2009). Overall, research on fathers has lagged behind that of mothers, both in research involving the general population as well as research of specific subgroups (Cabrera, Tamis-LeMonda, Bradley et al., 2000; Clapton, 2012), such as fathers of children with a neurodisability. This has led to a lack of knowledge about fathers’ unique needs, their manifestations of distress, their help-seeking behaviours, and effective ways to offer them support (Baum, 2016) as well as gendered attitudes that inadvertently overlook both fathers’ care work and their emotional support needs (O’halloran, Sweeney & Doody, 2013).

Popular and academic representations of men’s difficulty in expressing themselves coexist with calls for more complex theorization of men’s emotional lives (Reeser & Gottzén, 2018). To address this complexity, we adopt perspectives from masculinity studies as well as studies on emotion, analysing the emotions, feelings and actions described by fathers. This work is foregrounded by a broad view of masculinity (Hearn & Kimmel, 2007; Kimmel & Messner, 2010), and the assumption that given forms of expressing masculinity will vary historically over the course of a person’s life, in any given society, time or place (Connell, 2005), and that these ideals may be produced within societal institutions such as the family (Kimmel & Messner, 2010). We also draw on a social constructivist paradigm (Berger & Luckmann, 1966) of emotion building on the assumption that socialization and social forces might influence and shape how people feel or express emotions (Turner, 2009). Specifically, we adopted the concept of “emotion work” (Hochschild, 1979, 2012), a perspective that helps to examine what people do to manage their own emotions and those of others, and posits that culture or contexts determine rules that are learned through socialization. Emotion work depends on managing feelings through forms of ‘acting’, as well as on “feeling rules” (Hochschild, 2012). We adopt this frame in our analysis of fathers’ narratives to, firstly, examine the emotion work of fathers to promote connection, cohesion or a positive family environment and, secondly, to examine the strategies used by fathers to conceal or alter their feelings in line with gendered norms of emotional expression.

The emotional experience of connecting showed up as fathers discussed their quest to learn about and connect with their child. Fathers described their intention to connect with their child, and the emotional experience of receiving or not the type of connection they desired. The dance of connection between father and child was at times reciprocal, fluid and easy, leading to feelings of pride, engagement, and growth. At other times, this dance was awkward and unsynchronized, its movement obstructed by painful emotions leading to avoidance on the part of fathers. In the microsystem between father and child, the consequences surrounding the child’s birth, the announcement of a complex diagnosis, the father’s knowledge, attributions and understanding of the child’s social, cognitive, and behavioural abilities influenced, positively or negatively, fathers’ emotional experience of connecting with their child. Martin, the father of an adolescent with congenital seizures and autism spectrum disorder, describes feeling overwhelmed and bewildered by his son’s neurodegenerative condition and the seizures that impacted his overall functioning. Worried about his son’s medical fragility and his possible premature death, Martin continues to express confusion, guilt, and a sense of personal responsibility for his son’s medical and developmental condition:

I don’t know what happened to Greg. It’s really hard to face, emotionally. Inside. I feel I did something wrong, you still, just like a boy steals his parent’s car, drives, I will cause an accident hitting something, perhaps one thousand, or ten thousand is how I feel. This is how I feel, I made a big, big mess, every day I feel like that.

Martin, father of Greg, age 14

While this emotional suffering does not deter Martin from meeting his obligations to his family through paid work, it does cause him to avoid most physical contact with his son and experiences his son as rejecting of him. While most fathers talked about the importance of forming an emotional connection with their child, for others, like Martin, this was neither easy nor desirable. Martin’s reticence to connect was driven by fear of his child’s imminent death and led him to feel alienated and unwelcome:

I don’t feel really related. I feel that when he looks at me, sometimes he looks at me, like a couple seconds, that long, it’s really bad. I feel really, maybe it’s only my feeling, that he’s telling me that I did something bad, causing that. He talks to his mom; he loves his mom. Yeah. But not me. He just points, like “rrr rrr”, and asks me for things, but he never has a feeling, I never have soft feelings with him…”.

Martin, father of Greg, age 14

Martin’s experience is contrasted with that of Ashan, whose daughter Ani, born with a very severe form of cerebral palsy affecting her overall social, emotional, cognitive, motor, and behavioural functioning, could not tolerate his touch in the early stage of her life. Ashan tearfully describes his yearning to connect with his child, the emotional struggle when this was not possible and his drive to engage his daughter in their relationship in a slow process of coming together underpinned by determination, failed attempts, listening to cues and respecting her terms:

It actually took time. At the start, I struggled, really struggled. For mom, it was more natural. But for dads, they’re a little impatient, and then we learn, and then we really attach to them. Nobody could touch her, even I couldn’t touch her. Only mommy. I still remember... just stay away... oh yeah, yeah, that’s the hardest time. Maybe she had pain, I don’t know. I’m still thinking of that time. When she was a baby maybe I couldn’t enjoy her much, but now I can enjoy. I know that she likes me, and I can enjoy her (crying).

Ashan, father of Ani, age 12

Zaid, the father of Liz who has a moderate form of cerebral palsy, credits Liz in forming their close connection, by drawing him into their relationship, reaching out to him, and creating a closeness that he had not experienced with his older sons:

I don’t think there’s more feeling. It is the same for all of them, but, definitely, if you have someone who is trying to be closer to you, they somehow break something in the distance than someone who is trying to get away.

Zaid, father of Liz, age 12

The dance of forming an emotional connection required persistence as fathers sought alternative ways to learn about their child. Harry, the father of Dan, a 6 year-old non-verbal boy with autism, had never heard about autism before his son was diagnosed. On the one hand, Dan is an emotionally tender child, often seeking cuddles and hugs, something that Harry cherishes. On the other hand, Harry grapples with the uncertainty about whether he will ever truly know his child.

Because he is non-verbal, it’s impossible. I mean we’re hoping. Our hope is that he becomes verbal. Because until he becomes verbal, you don’t know what he really knows… But for Dan, no, you have to really… it’s like you try to pull something out of him. To say something… Everything is hard. Emotionally, it’s hard, you have to concentrate with him, always.

Harry, father of Dan, age 6

For some fathers, these difficult emotions offered opportunities for personal growth. Reflecting on the medical complexity associated with the cerebral palsy diagnosis of his daughter Beth, a 6-year-old, Paul maintains the experience of fathering has fundamentally changed him:

She changed my life, definitely changed everything, my view. She made me emotional, like I never cried until something happened to her. I was like a rock, nothing would break me down, funerals, nothing, then this little girl just hit a switch, and I stayed pretty emotional.

Paul, father of Beth, age 6

Similarly, Ashan recounted how being Ani’s father had changed him and taught him empathy and compassion:

Now it’s a new world. She teaches us. We didn’t know before. I think that honestly, if I didn’t have that child, maybe we stay way. Now I know how to react. Oh, she teaches a lot of things.

Ashan, father of Ani, age 12

All of the fathers in the study described hiding their emotional pain from their spouses or other family, using strategies such as crying alone or ‘stuffing’ their pain. Fathers described the spaces where they could express more painful emotions. In one example, described by Joe, when emotions bubbled up, he found solace in his son’s room:

Because there will be plenty of nights when I go lie down with him, I’ll break down and I’ll cry. But I don’t want my family to see that.

Joe, father of Sam, age 8

Richard, whose son Mike has a moderate-severe learning disability and autism, similarly described bottling up his emotions. His decision not to discuss his emotional pain with his wife was seemingly centred on wanting to protect her. He simultaneously referred to such thinking as “old school” while struggling with the desire to express his feelings:

There are certain things, and this is something I did want to talk about[1], there are certain things that a man, you know, can’t talk to his wife about. Because and those are the scenarios, the situations, that you truly would appreciate someone to just listen. You know, we’re supposed, again, we’re, I’m an old school mind here somewhat I would say, that you can’t, you can’t show your weaknesses towards your spouse because somebody’s got to be strong. Somebody has to be that pillar. You can’t necessarily show your weakness towards your children because then they figure there’s no, there’s no centre of gravity to which they can revolve around. Everything just kind of, you know, implodes or explodes, then they kind of wander aimlessly.

Richard, father of Mike, age 18

Fathers consistently monitored the social spaces occupied by their children speaking at great lengths about the desire to maintain the dignity and integrity of their family. Fathers fielded stigmatizing questions about their child’s visible disabilities, were wary of limited engagement with friends and family members whom they considered disempowering.  Fathers made choices that maintained the dignity of their child and family by speaking up, advocating or shutting down.  

Though a naturally private person, as a healthcare professional, Zaid rationalised people’s curiosity about his daughter Liz’s posture and gait. However, he grappled with the notion of disclosure as educating others and compared this to staying quiet, which was truer to his nature. He wondered what it would mean for his daughter if he continued to ‘hide’ her disability.

While Ashan supported his wife’s need to spend time with members of their community, he often decided against attending events where he felt Ani would not be respected.

As Ashan explained:

In our community especially, in families who have a child like that, they’re like a, like a little bit, (pause) how can I say… like God forget them, something like that? You understand what I mean? Like kind of feeling...”.

Ashan, father of Ani, age 12

Ashan coached his wife to disregard rumours or unwanted advice:

But it’s true they don’t want to learn anything. They like what they think and they talk. They don’t think that this hurts us. For me, I just directly answer. For my wife, she takes everything in. So, then I will go and protect her, and I answer.

Ashan, father of Ani, age 12

Jeff and his wife wanted their daughter, Kate, who has cerebral palsy and limited mobility, to take part in all family activities. The couple had designed and built special wheelchairs and stretchers to accommodate access to outdoor venues, hiking trails and campgrounds. When Jeff’s father heard about their plans to install an elevator in their home, he discouraged his son, causing great pain and withdrawal:

And I was telling my dad about we’re going to put the elevator in and it’s going to cost about $60,000 to put on the house. And he’s like, “no, no, no, before you do this stuff, think about you and Paige, how long can you keep doing these things? She’d be better in the institution where somebody is taking care of her and go visit her everyday and you don’t have to change your house. Doesn’t get into the way of your life.” And I was like “ wow…” that was an eye-opener, and that hurt. That was not good.

Jeff, father of Kate, age 12

In the same way that fathers were vigilant regarding how others received their child, they were equally vigilant about how their child perceived themselves. Richard described a turning point with his son:

And I guess it’s one of the hardest parts to accept was when he finally realised that he had this difficulty and he saw this learning difficulty and you saw his confidence being shattered, that was heart-breaking.

Richard, father of Mike, age 18

Most fathers saw it as their duty to stay aware of their child’s self-perceptions and to be positively reinforcing figures. For instance, Harry described a curiosity regarding how his son Dan might see himself. He saw it as his role to protect his child from future emotional distress:

I don’t know, but he seems to be at peace with himself. I think he’s frustrated because he doesn’t talk. That part I feel him frustrated with. But other than that, he’s fine. He’s, I mean, obviously I don’t know how much he realizes that he’s different. It’s hard to say because he doesn’t talk, so I don’t know how much he realizes that maybe he doesn’t at this stage.

Harry, father of Dan, age 6

In addition to vigilance about protecting their child’s self-image, fathers described coaching their children to respond to questions about their disability. Mark discussed preparing his son for questions about his brace:

I mean… at the end of the day, it’s still his disability. If he chooses to open up and share it, it’s great, but if he doesn’t, we kind of view it as you know maybe that’s his prerogative. We don’t really try to force these things, “or explain it to everybody who asks,” we’ve given him enough information, he can explain it pretty much A to Z that you would understand what it is, so he can do it. He knows fully about it. If you ask him a question about it, he can tell you about it. You know? But he doesn’t really tend to delve that part of the story out. He will tell you, oh yeah it’s just a brace.

Mark, father of Milan, age 11

Relying on social construction theory (Berger & Luckmann, 1966), we posit that fathers construct their role based on their socialization, interactions, and communication drawn from both societal-level discourses as well as what occurs within their families. Therefore, the idea that emotions can be changed, shaped and influenced by culture and social rules (Harré & Parrott, 1996) offers an avenue for exploration of fathers’ narratives. This allows links to be made between ‘the social function of emotion’, or the ways in which ‘rules’ in any society open up possibilities or constrain the expression of certain forms of emotion (Harré & Parrott, 1996). Public or private endorsement of certain emotions, whether expressed or felt, can be linked to arguments that men’s emotional repertoires are stunted by patriarchal norms that dictate what is or isn’t acceptable (Hooks, 2004). Other contemporary analyses of the link between masculinity and affect open new spaces for exploration. In a context in which fathers, particularly those in heterosexual co-parenting teams, are often regarded as unable or unwilling to perform emotion work (Holmes, 2015), the findings from this study offer a glimpse of the aspects of both private and societal experiences that may influence how fathers feel about their role as parents, how they navigate the emotional terrain of parenting and how they seek, or not, support for their parenting role as well as their own emotional wellbeing.

Through the analysis of fathers’ narratives, we identified a series of emotions, ranging from the fear of rejection by one’s child to deep emotional connection and love of one’s child. Fathering was a zone for multiple, overlapping, and at times conflicting and contradictory feelings. Fathers’ desire to connect with their child was at times coupled with sadness, frustration, and grief (related to feelings of uncertainty and loss of a hoped-for future with and for one’s child), shame and anguish (related to feelings and attributions of personal responsibility for the child’s condition), or fear (feelings of powerlessness in the face of unanticipated events in the present time, or in the future). The emotion work (Hochschild, 2012) or management of feelings to maintain their relationship with their child, included attending to their child with patience, waiting for things to change, or, alternately, creating a physical distance between themselves and their child as a buffer from difficult emotions. Fathers’ emotional commitment, despite the challenges of parenting, mirrors the ‘emotional bordering’ work evoked in Macht’s (2020) study on the emotions experienced by involved Scottish and Romanian fathers. Emotional bordering, or the dynamic shifting between stoicism (i.e., acting more rationally and controlling their emotions) and intimacy (i.e., fostering emotional closeness and physical and emotional care of their child) was born out of fathers’ commitment to their child, despite the challenges of trying to understand their child and their needs.

Paying attention to named and unnamed emotions drawn from fathers’ recollections and stories, tracking the dissonance between what fathers might be feeling based on descriptions (the psychological experience) and how they express what they feel (the emotional work or emotion regulation that may lead to external expressions dictated by societal rules, norms, values, and social practices), may provide clues about how to support them. Listening to fathers’ stories, from their a priori expectations of fatherhood to navigating the new and unfamiliar terrain of fatherhood by paying attention to the emotional experiences imbedded in these stories, might offer insights into how they come to understand themselves through their relationship with their child (Holmes, 2010). Drawing on Hochschild (2012), attunement to emotional work as it is recounted within fathers’ stories may render visible, for example, sources and foci of emotion.

For instance, narratives related to compassion for their child, pride and love for their child, can open up avenues for deeper exploration of the transformational nature of fathering – or new understandings of self. Fathers’ conceptualisation of themselves as protectors, a social and moral expectation of parents, emerged as an important aspect of their emotion work. In these instances, particularly when fathers perceived external threats related to injustices and disrespect, they experienced feelings of anger and contempt that at times led them to create distance, cut or limit interpersonal ties in the face of stigmatising messages. The consequences of these types of messages were far reaching and led fathers to establish “emotional borders and relational limits” (Macht, 2020). Discriminatory attitudes led fathers to emphasize protection and increase control (i.e.: to distance, to ignore, to fight back). Social constructions of masculinity, or what it might mean or look like to ‘be a man’ including a stoic discourse, rendered fathers’ internal emotional suffering invisible to those in their social circles thereby narrowing the support available to them.

Contradictions about the distance and proximity of fathers in the lives of their children and the symbolic ways in which they are expected to feel while parenting are steeped in political, economic and structural opportunities and barriers. In this study, fathers described transformations to their emotional repertoires that blossomed out of their relationship and role with their child. These transformations led to a renewed and fluid sense of self, dynamically constructed in relationship. As Macht (2020) suggests, involved fatherhood is not only a social role, but an inherently emotional identity that is negotiated in relationship and leads to the formation of a masculine identity. How new forms of masculine identities are expressed depends on the relational and social contexts within which they are produced and the emotion rules that might govern their expression (Hochschild, 2012). The lives of men as fathers, as those of women as mothers, are social constructions based on shifting and changing societal expectations of parenting responsibilities, actions, behaviours and, importantly, emotions. Fathers in this study expressed both the joys and challenges of parenthood, though their lives were mired in complexity and contradictions. On the one hand, they were highly involved men, interested and engaged in close relationships with their children and open to discussing the hopes, desires and challenges involved in parenting. Most fathers in this study spoke of their connections with their child with great pride and they openly discussed the challenges, fears and overwhelming emotions associated with parenting. On the other hand, discussing their distress and sorrows with their spouse or others generated discomfort and feelings of reticence. This led them to hide their more painful and challenging emotions from their family, demonstrating a deeply internalised stoicism linked to ideals of masculinity (Connell & Messerschmidt, 2005). The collision of these emotional experiences (happiness, sadness, fear) with traditional social expectations of what it looks like to ‘be a man’ (to be stoic, to suppress or hide emotions such as sadness, or fear to appear strong and in control) may influence what fathers do with their emotions. This emotional dissonance (the experience of an emotion and fathers’ evaluation of it in line with their masculine identity) may limit, constrain, or open the repertoire of emotional expression, and inform how and from whom to seek support and comfort.

These findings point to the need to further understand how men take up changing expectations of themselves as fathers. Consistent with the findings of Hunter, Riggs, and Augoustinos (2017) the fathers in this study had taken up the relational expressions of care and were able to talk about their desire for emotional connection and the difficulties they had encountered in parenting their child. They spoke of feelings of isolation, confusion, despair and frustration. Their endorsement of new ideals of “caring masculinities” demonstrates the fluidity of the concept of “hegemonic masculinity”. However, the fathers also expressed a belief that seeking support for their own mental health was inconsistent with aspects of their role (wishing to be perceived as strong and stoic) and this remains a point to investigate. When fathers did speak about their fears, shame, guilt, bewilderment and sorrow, the disclosure itself appeared as both a conflict and a relief. These findings demonstrate that, despite changing expectations of men (e.g., to reject notions of domination and adopt values of care), certain acts are seen as more vulnerable. While fathers’ former expectations of parenting may have been challenged, they nonetheless provided opportunities for love, engagement and unparalleled closeness. Fathers actively challenged some restrictive ideals about fathering and masculinity; yet some were more difficult to push against. While these fathers actively rejected notions that constricted opportunities for their child and family, they nonetheless appeared to internalize gendered stereotypes related to their own emotional support needs.

This study’s findings allowed an examination of the meaningful and emotionally rich experience of fathering based on theories of emotion work and the social construction of masculinity. One of the study’s strengths lay in the depth and sincerity with which fathers discussed their emotional experiences, something that they each claimed they had not been asked about before their discussion with the researcher. This study reflects the self-reports and micro stories of fathers on their role and its emotional experience within their families. A possible limitation of this study is that it did not explore the experiences and perceptions of other family members regarding fathers’ affective involvement in their families.