Fathers' Relationships with Their Disabled Children: A Literature Review Alison Davies The Open University Jonathan Rix The Open University and the Inland Norway University of Applied Sciences Martin Robb The Open University

Keywords:

fathers, disabled children, relationships, caregiving, review, thematic analysis

Abstract

Fathers' relationships with their disabled children is a neglected topic in the academic literature. This article is the first review of studies in the field, comprising a comprehensive overview of research published since 1980. Forty-five studies met the inclusion criteria. Although fathers emphasise positive aspects of their relationships, existing research foregrounds more negative aspects. These studies tend to identify five themes that signal positive father-child relationships. These themes are: an evolving relationship; caregiving practices; relational aspects of caregiving; recognising and supporting their children's agency; and (inter)connectedness. While fathers' relationships with their disabled children is an under-researched topic, the existing literature on the topic focuses on the negative impact of having a disabled child. Understanding the complexity and rewarding aspects of fathers' engagement warrants further research.


Recent years have seen an exponential growth in the field of fathering research, running alongside and reflecting a re-evaluation and to some extent a redistribution of gender roles within families (Dermott and Gatrell 2018; Schoppe-Sullivan and Fagan 2020). Both the changes in fathering roles, and the expansion of academic interest in fatherhood, have resulted partly from broader social transformations. These include an increase in women's participation in the labour market, and changing ideas around gender roles and identities, influenced by second-wave feminism. Current research on fathering reflects these shifts in discourse and practice. There has been an increased focus on fathers' role in the intimate care of children as well as the nature of fathers' diverse and changing relationships with their children (see for example, Dermott 2014; Doucet 2006; Miller 2011; Ranson 2015).

Although the general change in fathering roles has had an impact on families with disabled children, the experience of fathers of disabled children remains relatively unexplored in academic research (Bogossian et al. 2019; Schippers et al. 2020). Moreover, within those studies that examine fathers' experiences, fathers' day-to-day relationships with their children tend to be largely an indirect or incidental concern of the research. As researchers with backgrounds in researching fatherhood and men's roles in families on the one hand (Horton-Salway and Davies 2018; Robb 2020) and issues of disability and inclusion on the other (Rix 2015; Rix et al. 2022), we suggest further research in this area is urgently needed. This will enhance understanding of the diverse and complex nature of fatherhood and the lives of disabled children and their families. Research of this kind is also vital for ensuring that services and support offered to disabled children and their families are based on accurate knowledge about their lives and experience.

The principal aim of this article is to map the existing research literature around fathers and their disabled children, particularly focusing on the ways studies represent, or fail to represent, the nature of fathers' relationships with their children. This mapping will, in turn, provide the foundation for setting out some possible areas for future research.

Fathers and disabled children: an unexplored area

A significant and growing body of work indicates that fathers' regular and active involvement in raising their children has a significant impact on social, emotional and cognitive development (Dyer, McBride and Jeans 2009; Sarkadi et al. 2008). Although less extensive, the disability literature also suggests fathers' involvement with their children enhances children's outcomes (McBride et al. 2017) such as language development (Flippin and Watson 2015).

Research indicates that fathers make distinct and particular contributions to their children's lives (Adams Lyngbäck 2016; Horton-Salway and Davies 2018). Despite this, much of the existing literature concerning fathers and their disabled children tends to situate fathers' caregiving practices in relation to those of the mother: for example, by comparing the experiences and roles of fathers and mothers (Al-Yagon 2015; McConnell and Savage 2015). Such research supports, and perpetuates, a "conservative" or traditionalist perspective on fathers' capacity to care (Robb 2020). The emphasis in these studies is often on the complementary role fathers play in family life, constructing fathers as supportive but "secondary parents" (Schippers et al. 2020; West and Honey 2016), whose involvement with their children is typically constrained by the demands of work and financial security (Craig and Mullan 2010).

Literature pertaining to fathers and their disabled children tends to assume a deficit model of disability, focusing on negative aspects such as parental stress (McStay, Trembath and Dissanayake 2014; Woodman 2014) and fathers' coping strategies (Dardas and Ahmad 2015). This deficit view has tended to inform research aims and methodologies (Lalvani and Polvere 2013). However, this is beginning to change with a small number of studies focusing on how fathers value their relationship with their disabled children (e.g. Boyraz and Sayger 2011). Despite this newly emerging body of work, there is little qualitative research capturing father-child interactions in everyday situations. An exception is a Dutch study (Schippers et al. 2020) published after the review search was completed. It trials the use of a video-informed approach and frames father-child interactions positively, in contrast to the negative framing of other works.

To the best of our knowledge, there are no other reviews that prioritise fathers' day-to-day relationships with their children. We identified two reviews that focus on fathers and their disabled children; however, the emphasis of these reviews is distinct from ours. One (Marsh, Brown and McCann 2020) has a smaller scope, limiting its focus to fathers of children with an intellectual disability. That review emphasises the needs and concerns of fathers and identifies four themes. Those themes are emotional impact, mental health and coping, systems of support, and hopes and fears. The second review (Boyd, Iacono and McDonald 2019) restricts its scope to children with developmental disability. Similar to ours, that review excludes papers focusing solely on coping and stress responses. Unlike ours, it does not focus on the father-child relationship, but rather on the broader category of father experiences.

Methods

We carried out our review of literature focusing on fathers' experiences of their relationships with their disabled children between January 2020 and November 2020. The literature search proactively sought data containing evidence of father-child connections and recurring interactions, perceived by the father to have personal meaning. No age limit was applied to the category "children," so papers included children of all ages, including adult offspring. We were interested in fathers of children with any physical, sensory and/or intellectual impairments.

Search strategy

We conducted searches using the ESBCO research platform to access the databases Medline, Cinahl, PsycINFO, PubMed and Scopus. We initially limited inclusion criteria to texts based upon empirical data and published in English after 1980 (see Table 2 for detailed criteria).

The search terms selected are detailed in Table 1 and were applied to titles and abstracts. One member of the review team examined these titles and abstracts against the inclusion criteria (see Table 2). Duplicates and studies not meeting the criteria were excluded. The searches yielded 293 papers across the databases.

Table 1 Search terms used for review
Fathers' experiences AND ("disabled child*" OR "disability")
Fathers' perspectives AND ("disabled child*" OR "disability")
Fathers' views AND ("disabled child*" OR "disability")
Fathers' voices AND ("disabled child*" OR "disability")
Fathers' narratives AND ("disabled child*" OR "disability")
Fathers' experiences AND ("child* AND syndrome" OR "child* AND disorder" OR "child* AND difficulties" OR "child* AND impairment")

Study selection

Many of the papers produced by the initial search were not considered relevant for the purposes of the project. These included papers that did not include the voice or experience of fathers. The project team met regularly to discuss the study and decided to address this issue by adding supplementary inclusion criteria to papers with a specific focus on the voice and experiences of fathers of disabled children and (see Table 2).

The 293 papers were divided equally between the three members of the review team for further analysis. We examined the full text against the inclusion criteria and excluded studies not meeting the expanded criteria. A second member of the review team corroborated the decision to include or exclude. The whole team discussed and resolved any discrepancies. This stage of selection reduced the number of papers to 143. However, many of these did not offer any insights into father-child relationships and did not distinguish sufficiently between the experiences and voices of mothers versus the experiences and voices of fathers. The team decided to exclude combined data from mothers and fathers and include only papers presenting a separate analysis for fathers. A significant number of these papers have a particular focus on parental stress and service evaluation. To mitigate against a deficit-based approach to disability, we decided to exclude studies that primarily focus on the measurement of stress and adversity. The focus of our review being on relationships, we also decided to exclude papers that focus on the prenatal stage of development and papers based on closed-question surveys (see Table 2).

The 143 papers were divided three-ways and used a similar process of selection based on the new criteria. This round of selection produced fifty-four papers. These papers were subject to a process of data extraction whereby they were mined for extracts that directly answer the question "How do fathers talk about their relationships with their disabled children?" We rejected papers that do not provide data that can answer this question. We also rejected unavailable papers. This brought the number of papers to forty-four. We also became aware of a recently published systematic review (Marsh, Brown and McCann 2020) which met our inclusion criteria, bringing the final number of papers included in the review to forty-five.

Table 2 Inclusion and exclusion criteria
Phase 1 Inclusion CriteriaPhase 1 Exclusion Criteria
1Has a focus upon the voice of the fathers of disabled children (regardless of the child's age)EX1Does not have a focus upon the voice of the fathers of disabled children (regardless of the child's age)
2Has a focus upon fathers' experiences either in private (at home) or in public spaces or within institutions (schools, clinics etc)EX2Does not have a focus upon fathers' experiences either in private (at home) or in public spaces or within institutions (schools, clinics etc)
3Is based upon empirical dataEX3Is not based upon empirical data
4Is published after 1980EX4Is not published after 1980
5Is in EnglishEX5Is not in English
Phase 2 Inclusion CriteriaPhase 2 Exclusion Criteria
1-5As 1-5 aboveEX1-EX5As EX1 -EX5 above
6It is possible to identify a separate fathers' voice or discussion about a separate fathers' voiceEX6It is not possible to identify a separate fathers' voice or discussion about a separate fathers' voice
7Includes fathers' experiences after their child had actually been born (rather than during pregnancy)EX7It does not include fathers' experiences after their child had actually been born (rather than during pregnancy)
8A primary focus of the study is not parental stress or evaluating a serviceEX8A primary focus of the study is parental stress or evaluating a service
9Is not based upon surveys or questionnaires or other data sources that are primarily quantitative EX9Is based upon surveys or questionnaires or other data sources that are primarily quantitative
Phase 3 Inclusion CriteriaPhase 3 Exclusion Criteria
1-9As 1-9 aboveEX1-EX9As EX1 – EX9 above
10Answers the question "how do fathers talk about their disabled children?"EX10Does not answer the question "how do fathers talk about their disabled children?"
11Available sources EX11Unavailable sources

Characteristics of studies

The included papers were based on studies located in the USA (n=12), the UK (n=11), Canada (n=6), Australia (n=2), Sweden (n=2), Taiwan (n=2), Brazil (n=1), Ireland (n=1), Israel (n=1), India (n=1), South Africa (n=1) and Japan (n=1). Additionally, one paper (Tikkanen, Peterson and Parsloe, 2019) included interviews conducted in several countries outside the US. There were also three reviews: a systematic review of the views and experiences of fathers of children with intellectual disabilities (Marsh, Brown and McCann 2020); a scoping review of the perceptions of fathers about parenting a child with developmental disability (Boyd, Iacono and McDonald 2019); and an integrative literature review of chronic sorrow in parents of children with a chronic illness or disability (Coughlin and Sethares 2017). All papers were published between 1992 and 2020; two were published in the 1990s, nine in the 2000s, and thirty-four in the 2010s.

A range of data collection methods are used in the forty-five studies. These comprise reviews, individual and couple interviews, focus groups, an online survey and reflexive and personal accounts. Twenty-nine of the studies use interviews. The majority of papers, thirty-five of forty-five, are based on studies that only include fathers. Eight studies include fathers and mothers. Aside from the two personal, reflective accounts (Wetchler 2005; Williams 2014), sample sizes range from three to 198 fathers of disabled children (respectively, Bonsall 2020 and Potter 2016). The papers cover a range of ages but only three focus solely on fathers of children over the age of eighteen. The search produced papers focusing on fathers of children with a range of impairments including physical, sensory and intellectual impairments. It also yielded several papers that focus on the experiences of fathers of children with chronic illness. The search discovered that the greatest number of papers, thirteen in total, focus on fathers of autistic children.

Findings

The aim of this review is to understand how existing literature represents the nature of fathers' relationships with their disabled children. Despite seeking to capture aspects of fathers' experiences, of the forty-five papers reviewed, specific reference to fathers' relationships with their disabled children appears in only two abstracts (Boström and Broberg 2014; Potter 2016). As the review by Marsh, Brown and McCann (2020) notes, studies tend to focus on the impact of diagnosis and the negative challenges fathers face with family, services, and wider society. Adapting to and coping with challenges is also a common focus of these studies. Exceptions include a paper by Potter (2016), which invites fathers to describe positive and satisfying aspects of being the father of an autistic child and a paper by Mitchell and Lashewicz (2018), which focuses on fathers' narratives around play. We identified four studies that capture aspects of fathers' day-to-day relationships and interactions. Two of these use observational methods (Bonsall 2015, 2018). One invites fathers to describe a typical day in their family life (Boström and Broberg 2014). The fourth invites fathers to describe a typical day with their child (Thackeray and Eatough 2018). The study by Huang, Chen and Tsai (2012) focuses on daily caregiving rather than on broader relational aspects.

Although the literature does not foreground fathers' relationships with their disabled children, our review finds much evidence of fathers talking about their relationships and caregiving practices. Our analysis of the forty-five papers reveals five main themes: 1) an evolving relationship between fathers and their children, 2) caregiving practices, 3) relational aspects of caregiving, 4) recognising and supporting their children's agency, and 5) (inter)connectedness.

An evolving relationship

Fathers reveal how involvement in their children's lives produces significant and positive changes in the way they provide care for their children, with several commenting on how the relationship with their children has helped them become a "better father" (Bonsall 2018; Boström and Broberg 2014; Hannon, Blanchard and Storlie 2019). Some fathers reveal a capacity to reflect on their own caregiving practices and to adjust these accordingly to meet the needs of their child. One father reflects on how he responds to his son's emotional needs by providing a gentler type of support, "'I have to be more motherly, more supportive. He needs more hugs. You know, and it has to be a gentle kind of support.'" (Hannon, Blanchard and Storlie 2019, 203)

Taking a chronological approach, several of the papers highlight an evolving relationship as fathers' responses towards their children shift from negative to positive over time (Bonsall 2018; Boström and Broberg 2014; Burrell, Ives and Unwin 2017; O'Halloran, Sweeney and Doody 2013; Hornby 1992; Huang et al. 2011; Ridding and Williams 2019; Wood and Milo 2001). Fathers' initial responses are characterised by vulnerability, giving way to a more emotionally secure position, accompanied by a greater acceptance of their children's impairment. Fathers experience this developing acceptance in different ways. For some, acceptance is about recognising the nature of their children's impairment, adjusting their perspective "and committing to giving the child the best life possible." (Bonsall 2018, 99) For others, acceptance means no longer seeing the impairment but seeing and being open to the children as they are. As one father says, "'I think fundamentally, the change was that I began to accept and love them as they were, not as I wanted them to be or become.'" (Burrell, Ives and Unwin 2017, 1140)

Initial feelings of vulnerability are not specific to fathers of disabled children but are common to the majority of new parents. Fathers' talk of transition and adaptation may reflect the emphasis in existing studies on challenges and ways to overcome them.

Caregiving practices

In a number of the papers reviewed, fathers' involvement in raising their children reflects a conservative perspective with defined gendered parenting roles. Eleven papers identify fathers' involvement in caregiving as secondary to the mothers' involvement (Davys, Mitchell and Martin 2017; Gray 2003; Meadan, Stoner and Angell 2015; O'Halloran, Sweeney and Doody 2013; Pancsofar et al. 2019; Pelchat, Lefebvre and Perreault 2003, Robinson et al. 2015; Rowbotham, Carroll and Cuskelly 2011; Thackeray and Eatough, 2018; Wolff et al. 2010; Takataya, Yamazaki and Mizuno 2016). In these accounts, gendered notions of masculinity and father identities are apparent, "fathers disliked certain aspects of childcare. Basically, childcare was the mother's territory, and father helped her" (Takataya, Yamazaki and Mizuno 2016, 548). In the same group of studies, some fathers describe being guided by mothers in their interactions with their children (Rowbotham, Carroll and Cuskelly 2011). They also describe feeling less skilled than mothers when managing aspects of their children's impairment (Pancsofar et al. 2019). Several parents describe a more equal and complementary partnership (Robinson et al. 2015; Takataya, Yamazaki and Mizuno 2016) and "emphasized the importance of working together as a team and capitalized on each other's strengths and abilities." (Robinson et al. 2015, 2317)

Fathers in a number of papers express a different perspective and reveal how becoming the father of a disabled child prompted a change in priorities (Bonsall 2015, 2018; Boström and Broberg 2014; Huang et al. 2011; Cheuk and Lashewicz 2016; O'Halloran, Sweeney and Doody 2013; Pottas and Pedro 2016; Venter 2011; Wolff et al. 2010; Wood and Milo 2001). Although fathers often allude to their working identities, many report putting aside their own career aspirations to prioritise their relationship with their child, "they described compromising individual aspirations for their careers, living arrangements, etc., and instead prioritising the child's needs" (Boström and Broberg 2014, 816). A re-evaluation of priorities arises from recognition of their responsibility as a father and out of a desire to be more closely involved with their child.

Venter suggests fathers undertake a range of caregiving practices including practical "caring for" responsibilities as well as the emotional and "relational" aspects of care. The fathers in her study are equally involved in most aspects of caring for their children such as attending medical appointments and dealing with unforeseen events (Venter 2011).

Fathers describe the importance of enhancing their children's comfort via physical, hands-on care. A sense of well-being is experienced by both father and children as a result of these tender interactions. As one father recalls, "'I had learned about massage and acupressure so I can routinely massage and apply acupressure to my son's legs and certain parts of his body, because I know they are good for his brain and body.[…] He felt less pain and cried less. I felt such a sense of achievement when that helped my son.'" (Huang, Chen and Tsai 2012, 3291)

The practice of care provides moments of connection between father and child. Wetchler (2005) describes his attendance to his daughter's intimate physical needs, revealing how meaningful the giving and receiving of care is to both of them: "I bathed, toileted, and dressed her, and handled all of her menstruation needs. I never thought about putting my finger in her mouth to clear out some stuck food that she was unable to dislodge. Jessica and I both loved this level of care as it was so much a part of our daily ritual and an activity we could do together. Plus, we had the most wonderful water fights as she took her bath." (70)

The fathers in Potter's research (2016) also value the nurturing role they come to occupy and indicate that a commitment to their children's care gives meaning to their role: "Men referred to the value which they placed on nurturing aspects of their relationship with their children. 'Being there' for children was a recurring sentiment, closely related to notions of offering support and love." (956)

Some fathers also describe ambivalent feelings towards aspects of the day-to-day caregiving. Several papers highlight fathers' frustration at not being able to manage their children's behaviour and the subsequent feelings of helplessness this produces (Boström and Broberg 2014; Burrell, Ives and Unwin 2017; Frye 2016; Gray 2003; O'Halloran, Sweeney and Doody 2013; Waite- Jones and Madhill 2008 ). As Boström and Broberg (2014) indicate, "Their inability to help the child or to relieve the child's pain caused the fathers great frustration." (816)

Other papers (Burrell, Ives and Unwin 2017; Cheuk and Lashewicz 2016; O'Halloran, Sweeney and Doody 2013) highlight the burden of caregiving experienced by fathers. One father describes how "there is no down time, there is always a demand." (O'Halloran, Sweeney and Doody 2013, 206). Other fathers emphasise the intensity of caregiving, one father "describes an 'amplified' experience as he details an exhausting list of activities." (Cheuk and Lashewicz 2016, 348)

Our analysis indicates that fathers take on a range of caregiving practices. While some studies indicate a gendered division of distinct and complementary caring roles, other studies reveal a shift in fathers' priorities, leading to an active engagement with practical caregiving activities. While these activities can produce ambivalent feelings for some fathers, other fathers indicate they provide a meaningful connection with their children.

Relational aspects of caregiving

The review finds that fathers demonstrate an ethic of care extending beyond the physical. Venter (2011) suggests fathers' involvement in relational aspects of care is revealed through "a concern to help their child be 'the best that they could be.'" Fathers manifest their care by becoming proactive in seeking information about their children's impairment (Davys, Mitchell and Martin 2017; Manor-Binyamini 2019; O'Halloran, Sweeney and Doody 2013; Starke and Möller 2002; Takataya, Yamazaki and Mizuno 2016). Studies indicate fathers take on an advocacy role (Burrell, Ives and Unwin 2017; Davys. Mitchell and Martin 2017; Wetchler 2005; Williams 2014; Wood and Milo 2001) and an educator role (Bonsall 2015; Huang, Chen and Tsai 2012; Navalkar 2004; Pottas and Pedro 2016; Potter 2016; Starke and Möller 2002; Takataya, Yamazaki and Mizuno 2016).

Fathers seek information and develop expertise to meet their children's needs and become advocates for their child. According to Burrell, Ives and Unwin (2017), fathers describe advocacy as "fighting obstructive services to access appropriate care." (1135) However, advocacy work is also nuanced and relational, exemplified by one father describing how becoming an advocate for his daughter required him to consider the world from a different gender perspective. This understanding is integrated into the relationship. As Wetchler (2005) describes, "Although I was a man, I was responsible for the recognition of her as an adult woman, and the advocacy of her rights as a woman.[…] I could not simply think as a male, but was also responsible for bringing female understanding and knowledge to our relationship." (71)

It is clear from the review that fathers take a keen interest in their children's social, emotional and academic progress, viewing "their parental responsibility as supervising the children's developmental process" (Starke and Möller 2002, 253). The relational aspect of educating is seen in the expressions of pride and joy at newly developed skills and abilities, and the satisfaction fathers experience at making a difference to their children's life. As one father explains, "'Every little, tiny achievement my son makes is a thrill.'" (Potter 2016, 954)

Another aspect of relational care manifests in fathers' concern to support their children's independence (Burrell, Ives and Unwin 2017; Knafl and Zoeller 2000; Mitchell and Lashewicz 2018; O'Halloran, Sweeney and Doody 2013; Tikkanen, Peterson and Parsloe 2019; Waite- Jones and Madhill 2008). Sometimes, however, this brings them into conflict with their partners (Knafl and Zoeller 2000; O'Halloran, Sweeney and Doody 2013). Fathers take responsibility for facilitating their children's integration. They help them navigate and participate in their social worlds by walking, carrying and driving their children around (Bonsall 2015; Meadan, Stoner and Angell 2015; Navalkar 2004; Thackeray and Eatough 2018). One father, whose son cannot walk, carries him around, allowing the child to experience the world as a non-disabled child would: "'When a child starts walking, he goes out, he looks at new things—that is a learning process. Now he cannot go on his own from one place to another place. I have to carry him, so I started carrying him from one place to the other place.'" (Navalkar 2004: 379)

Fathers highlight their concern for their children to fit in with the outside world (for example, Burrell, Ives and Unwin 2017; Tikkanen, Peterson and Parsloe 2019). They are also keen to prepare their children for the challenges of social situations: "Marshall took a more direct approach with his son, telling him,'…You got Sturge-Weber?[…] You're gonna have to learn to deal with this and handle what people say or how they look at you.'" (Tikkanen, Peterson and Parsloe 2019, 1548)

The review of the literature shows that fathers assume relational aspects of care aimed at enhancing their children's lives. This includes information seeking in relation to their children's disability and becoming advocates for them. The literature reveals that fathers are concerned about their children's independence and are invested in supporting their development and integration into the wider world.

Recognising and supporting their children's agency

In contrast to more familiar literature that focuses on fathers' negative response to and experience of their children's impairment, we identify optimistic experiences of fathers recognising and valuing their children's unique strengths, capabilities and characteristics (Davys, Mitchell and Martin 2017; Hornby 1995; Mitchell and Lashewicz 2018; O'Halloran, Sweeney and Doody 2013; Potter 2016; Thackeray and Eatough 2018; Wolff et al. 2010). For example, fathers embrace and take pleasure in their children's difference and special interest areas: "Fathers described positively interpreting their child's 'repetitive' or 'quirky' play without attempting to mould or change the play and accepted their children's natural proclivities." (Mitchell and Lashewicz 2018, 1131)

A developing recognition of their children's unique capabilities means many fathers modify their expectations of their children's future (Bonsall, 2018, 2020; Boström and Broberg 2014; Cheuk and Lashewicz 2016; Lucca and Petean 2016; Mitchell and Lashewicz 2018; Waite- Jones and Madhill 2008). In several papers, fathers describe relinquishing their dreams of an idealised "sporty" child based on a more realistic assessment of their children's interests and capabilities.

Many fathers consider their parenting experience no different from the experience of fathers of non-disabled children (Cheuk and Lashewicz 2016; Frye 2016; O'Halloran, Sweeney and Doody 2013; Potter 2016; Takataya, Yamazaki and Mizuno 2016; Thackeray and Eatough 2018 and Wood and Milo 2001). As one father says, "'I don't consider myself a parent with a child with special needs. I'm a parent period.'" (Cheuk and Lashewicz 2016, 347)

Many fathers simultaneously experience hope and apprehension about their children's futures; however, far more papers highlight fathers' fears and concerns (Boström and Broberg 2014; Davys, Mitchell and Martin 2017; Frye 2016; Gray 2003; Hornby 1995; Lashewicz, Cheuk and Shave 2016; Manor- Binyamini 2019; O'Halloran, Sweeney and Doody 2013; Pancsofar et al. 2019; Pottas and Pedro 2016; Thackeray and Eatough 2018). Key concerns include fear of the future, particularly around issues of independence, safety, integration into society and transition to adulthood.

In contrast, a few papers reveal fathers' hopes and expectations for their children's future (see Bonsall 2018; Burrell, Ives and Unwin 2017; Huang, Chen and Tsai 2012; O'Halloran, Sweeney and Doody 2013). These hopes include future employment possibilities as well as personal relationships: "While discussing their child's future, participants spoke about how they hoped that, at some point in the future, their child would meet a partner and settle down." (O'Halloran, Sweeney and Doody 2013, 207)

This review highlights how fathers value and respect their children's unique characteristics, framing these in terms of difference rather than deficit. Fathers also appreciate their children's capacity for agency, which means relinquishing some of their own dreams and hopes. While a significant number of fathers express fears and worries about their children's futures, the bias of questions that focused on challenges and concerns could have influenced fathers' responses. Despite this bias, several fathers indicate an imagined future, expressing hope and expectations for their children.

(Inter)connectedness

Fathers' physical interactions with their children feature in several papers (Bonsall 2018; Huang, Chen and Tsai 2012; Lashewicz et al. 2018; Mitchell and Lashewicz 2018; Navalkar 2004; O'Halloran, Sweeney and Doody 2013; Thackeray and Eatough 2018; Wetchler 2005). Fathers value their physical interaction with their children. This is often related to play. For some fathers, play and physical interaction are not separate from but are an intrinsic aspect of caregiving practices. Play comes to serve a dual purpose, enhancing the father-child relationship while providing a rehabilitation function, improving the children's well-being: "Play was a means not only to strengthen the father–child bond, but also to improve the child's physical and psychological well-being." (Huang, Chen and Tsai 2012, 3291)

Fathers describe joyful connection (Bonsall 2015; Potter 2016; Wetchler 2005; Williams 2014), revealing how moments of shared laughter and fun are precious and unique to their relationships with their children. As Williams (2014) observes, "There is joy in our world, that's all our story is about. And from joy comes laughter. Nobody will ever make me laugh more than him." (766)

Fathers' descriptions of powerful moments of emotional connection appear within several papers (Bonsall 2015; Boström and Broberg 2014; Mitchell and Lashewicz 2018; Navalkar 2004; O'Halloran, Sweeney and Doody 2013; Potter 2016; Takataya, Yamazaki and Mizuno 2016; Wetchler 2005 and Wood and Milo 2001). As one father describes, "'And when I play with her, she looks up. And then you notice that she realises that I'm there. She doesn't say anything, just smiles or something[…]but it's the eye contact that we have…. It is a feeling that we know each other. It's warmth.'" (Boström and Broberg 2014, 816)

Affective responses are also painful. One father describes the physical anguish he experienced when his daughter left to live in a supported environment: "The only way I can emotionally describe Jessica's transition to placement was that it felt like 'my baby was being pulled from my womb.' Obviously, I do not possess a womb, but it is the only way to describe my experience." (Wetchler 2005, 75)

Fathers' commitment to their children is apparent in several papers (Lashiewicz. Cheuk and Shave 2016; Navalkar 2004; Potter 2016; Takataya, Yamazaki and Mizuno 2016; Wetchler 2005; Williams 2014). Fathers emphasise the solidarity they feel with their children, a sense they are "in it together." For some, this means sharing their children's experiences to have an understanding of their pain: "'I have tried it myself, that this is the way my daughter falls on one side and her neck is dropped, her head is dropped.[…] I have experienced for a few minutes throwing myself like this (demonstrates with head one side) where I get that pain.'" (Navalkar 2004, 379)

Several papers identify the reciprocal nature of fathers' relationships with their children, with fathers acknowledging how much their children influence them (Hornby 1995; O'Halloran, Sweeney and Doody 2013; Potter 2016; Reilly et al. 2010; Takataya, Yamazaki and Mizuno 2016; Thackeray and Eatough 2018; Williams 2014). Their children shape their outlook on life, making them not only better fathers, but better people. Fathers appreciate what they learn from their children, expressing gratitude or luck at having the opportunity to parent them (Cheuk and Lashewicz 2016; Dollahite 2003; Potter 2016; Williams 2014). As Williams (2014) says of his son, "Nobody will ever make me laugh more than him—he's made me look at the world differently, he's made me question so many things I took for granted, and above all else he's made me realise that socks are just a weird bit of material that you don't really need. What isn't there to be grateful for?" (766)

Although not necessarily a primary focus of the papers examined, fathers' relationships with their disabled children are mutually enriching. Fathers across the papers describe positive relational and intersubjective experiences. This includes instances of physical interaction and playfulness and moments of profound affect in which fathers describe feeling intimately and intensely connected to their child. This intense connection to their children is also apparent in fathers' feelings of empathy, solidarity and commitment. The mutually enriching aspect of these relationships is characterised by fathers' expressions of gratitude towards their children.

Limitations

This review has a number of limitations. Only papers based on empirical evidence and published in English are included. Consequently, our search terms and delimiters may have inadvertently resulted in a failure to identify other materials that could have added to the analysis.

Paper selection took place between January 2020 and November 2020, which means that all the research reviewed was undertaken before the COVID-19 pandemic. We have attempted to keep abreast of new and relevant research publications which came after our initial search (such as the paper by Schippers et al, 2020), but recognise that we may have inadvertently missed papers that address our question and that incorporate reflections on the impact of the pandemic.

Conclusions

Our review set out to find how fathers' relationships with their disabled children are represented within the existing literature. Specifically, we were looking for evidence of connections and recurring interactions between fathers and their children that are meaningful to the father. The review covers forty-five papers that include fathers' voices describing their experiences as fathers of disabled children. These studies do not focus on the father-child relationship as a primary concern. We found only two papers referring to the father-child relationship in their abstract or title (Boström and Broberg 2014; Potter 2016). The majority of papers foreground fathers' accounts of challenge, adversity and coping strategies. Few studies prioritise positive aspects of this relationship.

Our analysis identifies a more complex and nuanced picture of father-child relationships than the somewhat negative one emphasised in the majority of papers. Although fathers reveal vulnerability, fear and ambivalence, we find that fathers emphasise the positive aspects of their relationships. However, most research studies do not prioritise these more positive accounts. We identify five main themes: an evolving relationship; caregiving practices; relational aspects of caregiving; recognising and supporting their children's agency; and connectedness. Fathers engage with the practical and relational aspects of caring for their children, providing tender descriptions of attending to their children's physical and emotional needs as well as more ambivalent descriptions of the drudge of daily caregiving. Fathers demonstrate relational care by assuming a range of roles and responsibilities as supporter, team worker, teacher, researcher, advisor, advocate and caregiver. The reciprocal and responsive nature of the father-child relationship is apparent in fathers' descriptions of adapting, shifting expectations and priorities, commitment, solidarity and moments of connection. There is a sense of gratitude hidden in the literature, a recognition of learning from the child, about fathering and becoming a better father. Fathers emphasise the strengths of the child, valuing personal characteristics and attributes, embracing their children's difference and having hopes and expectations for the future. There are few studies providing a sense of everyday father-child interactions but those that do suggest fun, laughter and physical interaction.

The review highlights that fathers' relationships with their disabled children is an under-researched area. The main focus of existing studies is on the negative impact of having a disabled child. Understanding of the complexity and rewarding aspects of fathers' engagement is limited. Future research aimed at providing new insights into our understanding of fathers' relationships with their disabled children is warranted.

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