The experiences of Dutch fathers on fathering children with disabilities: ‘Hey, that is a father and his daughter, that is it’

Abstract

Background:
Due to a predominant focus on mothers, fathers of children with disabilities are greatly overlooked in research. One could argue that there is a lack of research on the multifaceted nature of fatherhood altogether. Therefore, this study aims to gain insight into the perceived experiences of fathers of children with disabilities.

Methods:
These perceptions were studied by analysing data generated through semi-structured interviews, which were conducted with 12 Dutch fathers of children or young adults with disabilities.

Results:
Categories found during our data analysis were similar to those illustrated in the 'conceptual framework on responsible fathering' by including role identification, commitment, employment characteristics, cultural expectations and social support.

Conclusions:
Overall, the fathers in this study reported similar experiences, but this study identified new life perspective as an additional category, which might be specific for fathers of children with disabilities. This new life perspective included a positive attitude, living in the moment, appreciation of the little things and transformation of expectations. Some fathers expressed that their child(ren) has enriched their lives, which positively influenced their fathering experience.

Full text

The experiences of Dutch fathers on fathering children
with disabilities: ‘Hey, that is a father and his daughter, that
is it’
A. Schippers,
1,4
M. Berkelaar,
2
M. Bakker
1
& G. Van Hove
3
1Department of Medical Humanities, Amsterdam University Medical Centres, Amsterdam, The Netherlands
2Athena Institute, VU University Amsterdam, Amsterdam, The Netherlands
3Department of Orthopedagogics, Ghent University, Ghent, Belgium
4Disability Studies in Nederland, Amersfoort, The Netherlands
Abstract
Background Due to a predominant focus on
mothers, fathers of children with disabilities are
greatly overlooked in research. One could argue that
there is a lack of research on the multifaceted nature
of fatherhood altogether. Therefore, this study aims to
gain insight into the perceived experiences of fathers
of children with disabilities.
Methods These perceptions were studied by
analysing data generated through semi-structured in-
terviews, which were conducted with 12 Dutch fathers
of children or young adults with disabilities.
Results Categories found during our data analysis
were similar to those illustrated in the ‘conceptual
framework on responsible fathering’by including role
identification,commitment,employment characteristics,
cultural expectations and social support.
Conclusions Overall, the fathers in this study
reported similar experiences, but this study identified
new life perspective as an additional category, which
might be specific for fathers of children with
disabilities. This new life perspective included a positive
attitude,living in the moment,appreciation of the little
things and transformation of expectations. Some fathers
expressed that their child(ren) has enriched their lives,
which positively influenced their fathering experience.
Keywords children with disabilities, father, new life
perspective, responsible fathering
Introduction
People with disabilities are more likely to depend on
their families. In Western society, political
developments are trending towards informal networks
providing more care, resulting in families that
increasingly fulfil a central role in the support and
care of their children with disabilities, including into
adulthood (Boelsma et al.2018; Brown et al.2003).
This is related to the belief that children with
disabilities are served best within their families (Samuel
et al.2012;Summerset al.2005). Overall, families with
children with disabilities experience more difficulties
compared with families with typically developing
children (Pelchat et al.2003; Shave and Lashewicz
2016). However, the impact of having a child with a
disability varies between families, as some families
‘flourish in the presence of disability, while others do
not’(Faragher and Van Ommen 2017,p.42).
1
Correspondence:Dr. Alice Schippers, Department of Medical
Humanities, Disability Studies, Amsterdam University Medical
Centres, PO Box 7057, Amsterdam 1007 MB, The Netherlands.
(e-mail: alice.schippers@tiscali.nl).
Journal of Intellectual Disability Research doi: 10.1111/jir.12711
©2020 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd

Over time, the role and contribution of fathers in
family life has evolved (Williams 2008). For a long
time, fathers were viewed as all-powerful rule givers
and exclusive breadwinners (Brannen and Nilsen
2006; Johansson and Andreasson 2017; Lamb 2010).
However, over the last 50 years, father involvement
has changed because of a changed view in society on
fatherhood. Since the 1970s, fathers have become
more engaged in family life (Boström and Broberg
2014); besides breadwinning (Tseng and Verklan
2008), fathers now also engage in caregiving activities
(Dermott and Miller 2016; Schmidt 2018) and
household work (Bonsall 2014). Furthermore, they
spend more time with their children (Shandra et al.
2008; Simmerman et al.2001).
Research has thus shown a change in the role of the
father. This change has, however, not been reflected
in scientific literature. Models of fathering are scarce
in scientific literature. This lack can be partially
explained by a predominant focus on mothers in
research on parenting (Goeke-Morey & Cummings
2007; Hornby 1995; Simmerman et al.2001).
Generally, it is still assumed that mothers are the
primary caregivers (Simmerman et al.2001), resulting
in the construction of fathers as ‘secondary’parents
(West and Honey 2016).
However, one example of a father-specific model is
the conceptual framework on ‘responsible fathering’
(Doherty et al.1998). This model stresses that
fathering takes place in the context of a multilateral
relationship influenced by father, child, mother,
contextual factors and the co-parental relationship.
Above all, this model highlights how fathering is
‘uniquely sensitive to contextual influences’(Doherty
et al.1998,p.289). Several other studies confirm this
substantial influence of contextual factors such as
societal support, cultural expectations and
institutional practices on fatherhood (Braun et al.
2011; Cabrera et al.2000; Daly 1993; Marsiglio et al.
2000; Williams 2008).
Correspondingly, fathers of children with
disabilities are also greatly overlooked in research
(Bogossian et al.2017; Macdonald and Hastings
2010; Marsiglio et al.2000). However, the
transformed societal perception of fatherhood
towards more involved fathering indicates that fathers
are worth studying. Moreover, several studies report
that father involvement results in benefits for children
with and without disabilities (Dyer et al.2009;
McBride et al.2017), such as improved behavioural
and cognitive functioning (Coley 1998; Lamb and
Lewis 2010; McBride et al.2017; Paquette 2004).
Over the last decades, research on the experiences
of fathers of children with disabilities has increased.
Many of these studies were directed at the burdens
and negative aspects related to the diagnosis of a
child’s disability (Bonsall 2014; Hornby 1995; Horsley
and Oliver 2015), such as parental stress (Darling
et al.2012; Saloviita et al.2003), and on fathers’
coping strategies (Dardas and Ahmad 2015).
Currently, a trend towards studying positive aspects is
starting to emerge, including looking at how fathers of
children with disabilities value their parenting role
and father–child relationship (Boyraz and Sayger
2011; Ferguson 2002; Potter 2016). Several of these
studies show that fathers of children with disabilities
experience both challenging and positive perceptions
simultaneously (Boström et al.2009,2010; Boyraz
and Sayger 2011; Cheuk and Lashewicz 2016;
Hastings et al.2005; Horsley and Oliver 2015; Potter
2016). Still, in many studies that examine experiences
of parenting a child with disabilities, the views and
perceptions of fathers are rarely represented
(Willingham-Storr 2014). Therefore, this study aims
to gain insight into fathers’perspectives on their daily
life experiences regarding fathering children with
disabilities, in order to understand how these intersect
with their view on fatherhood.
Methodology
Study design
By investigating their perceptions of and experiences
with fathering one or more children with disabilities,
this study aims to gain insight into the views of these
Dutch fathers on fatherhood. To this end, in-depth
data on individual perceptions of a varied group of
fathers were required. A qualitative study design was
chosen for this purpose (Lincoln and Guba 1985),
which means that the fathers’perceptions were
studied by analysing data generated through
semi-structured interviews.
Participants
Because the goal was to interview a group of Dutch
fathers of children with various disabilities, selection
criteria included the age of the child (under 23 years),
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John Wiley & Sons Ltd

the diagnosis of the child, the father’s marital status
and the father’s employment status. The
demographics of the participants are depicted in
Table 1. The first participants were purposively
sampled, meaning that ‘information-rich cases for
in-depth study’were included (Patton 1990,p.169).
These participants were recruited through the
networks of first authors, and snowball sampling has
enriched the sample.
Data collection
One-on-one semi-structured interviews took place at
the participants’home or workplace, depending on
their personal preference. Prior to the interview,
participants were informed about its procedure and
asked to sign a consent form. After obtaining the
participant’s permission, the interview was audio
recorded.
In preparation for the interview, participants were
asked to choose either a video fragment with a
maximum duration of 15 min or some pictures of
themselves and their child(ren) with disabilities.
These were used as a conversation starter. An
interview guide composed of several open questions
was flexibly used to allow the participants to discuss
themes that are meaningful to them. All interviews
lasted approximately 60 min and were transcribed
verbatim.
Data analysis
Interview transcripts were sent to the participants to
enhance the trustworthiness of the data (Robson
2011). Data collection and analysis were not
sequential but iterative, as interviews were analysed
immediately after transcription. This iterative process
allowed exploration and validation of the categories
found in the subsequent interviews. After 12
interviews, no additional codes were found during
analysis. NVIVO 11 was used to support the process
of data analysis (Hutchison et al.2010).
First, a thematic content analysis was executed in
order to stay close to the data, decrease bias and
produce a rich code tree. Two members of our
research team were involved in the analysis process.
The individual analyses were deliberately compared
and discussed to achieve consensus on the meaning of
themes and to increase the credibility of findings
(Lincoln and Guba 1985). The analysis included the
following steps: (1)familiarising oneself with the data,
(2)identifying themes,(3)coding the data and (4)
organising codes and themes (Green and Thorogood
2013). In Step 2, identifying themes, concepts of the
‘responsible fathering framework’(Doherty et al.
1998) were used as sensitising concepts, providing a
general frame of reference for approaching our data
(Blumer 1954; Charmaz 2000). During Step 4of the
analysis, we chose to organise the themes in
accordance with the ‘responsible fathering
framework’(Doherty et al.1998). Two groups of
factors depicted in the conceptual framework were
found in the data, including father factors and
contextual factors. In addition, a new category was
found, which we titled new life perspective. Rich
verbatim quotes were selected and included in
3
Table 1 Demographic information of participants
Dutch fathers’study
Total
Fathers 12
Children with disabilities 14
Age of father
35–39 2
40–44 1
45–49 5
50+ 4
Employment status
Employed 11
Unemployed 1
Economic status
Lower class 2
Middle class 6
Upper class 4
Marital status
Married 10
Not married 2
Region
Rural 3
Minor urban 5
Major urban 4
Partly non-Dutch background 3
Age of child (mean) 6–21 (11.9)
Gender of child
Son 10
Daughter 4
Disability category of child
Intellectual disability 4
Physical disability 1
Physical and intellectual disability 3
Severe multiple disabilities 6
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A. Schippers et al.•Experiences of fathers
©2020 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd

Section 3to support our findings (Noble and
Smith 2015).
Ethical considerations
This study followed the ethical standards of the
Medical Ethics Committee of the VU Medical Centre
and Academic Medical Centre. Participation was
voluntary, and all participants signed a consent form
prior to the interview. Confidentiality was maintained
through restricted access to the data, destruction of
audio recordings after transcription and
anonymisation of transcribed data.
Results
Categories and subcategories revealed via data
analysis included the following father factors:role
identification,commitment and employment
characteristics. The contextual factors included cultural
expectations and social support. These correspond to the
framework of Doherty et al.(1998). A new category
that falls under father factors, new life perspective, was
also found (see Fig. 1).
Father factors
Fathers of children with disabilities perceive family
life in a variety of ways. The fathers acknowledged
that their family image had changed dramatically
since their child with a disability was born. All fathers
participating in this study agreed that family life is
sometimes more difficult because of the child’s
disability or bad health. The fathers in this study
recalled ‘being in survival mode’during periods of
sickness affecting their children with disabilities. One
father expressed great difficulties coping with his
fathering role. He explained that this experience was
caused by the many responsibilities associated with
being a father of a child with a disability, including
providing income, sharing in the care for their
children with his wife and ‘keeping the family going’.
Feeling responsible for their family was also
acknowledged by other fathers: ‘You are an employer
in a way, you have to keep a company running. I really
feel that way. As a father, you have to run a small
business, but if you have a child with severe multiple
disabilities, you are running a large company’.
Role identification
Fathers described their role in the lives of their
children with disabilities as caregiver, educator and/or
supervisor. Some fathers emphasised that they took
on multiple roles. Fathers frequently notice
differences between their roles in the lives of their
children with and without disabilities: ‘I have a
completely different role as a father towards my two
other children’.
Caregiver
Eight fathers identified themselves as a caregiver.
They explained that parenting mainly consisted of
caregiving activities, as their children needed
demanding care for an extended period of time.
4
Figure 1. The conceptual framework on ‘responsible fathering’(Doherty et al. 1998) as adapted for the purpose of this study.
Journal of Intellectual Disability Research
A. Schippers et al.•Experiences of fathers
©2020 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd

Nonetheless, there were striking differences in how
men perceived this caregiving role, and these
depended on characteristics of the child and father.
One father said that he felt ‘not like a father, but like a
caregiver’and expressed wanting to include father–
son-like activities in his caring routine. Another father
described how disability-related characteristics of his
son had an impact on how he experienced his
caregiving role: ‘And that was very hard for me at the
time, as my son was very limited in making contact
and making an emotional connection. […] You could
never comfort him, he did not allow it, he pushed you
away. […] So many times, I could not do anything for
him, he would not let you. […] I can take care of him,
but I get nothing in return’.
In contrast to this father, the majority of fathers
explained that they did feel connected with and
appreciated by their children during extended
caregiving activities.
Fathers in this study differentiated between
‘caregiving’and ‘caregiving with love’. One father
highlighted that, although he is mainly the caregiver of
his son with a disability, ‘what I do feel very much is
the loving way I engage with him’, which can be seen
as a part of his fathering role.
Supervisor
Apart from the role of caregiver, five fathers
described themselves as supervisors. They discussed
supervising play activities and outings and
assisting in doing homework: ‘I call myself a PAS:
personal activity supervisor. […] I enjoy doing
things with my children, playing soccer or games,
but also being involved in their lives. To guide them
towards growing up, you have to know what they
are doing’.
This supervisory role can be perceived as a guiding
role in life, for instance, guiding their children with
disabilities in the process of growing up. It can also be
noted that the kind of guidance required changes over
time: ‘I try to transform my role as supervisor slowly
towards a strict father. […] The period of fun outings
is slowly getting behind us, because he is turning 17.
At some point, I think my role has to shift towards the
serious stuff’.
This quote indicates that this father’s role
depended on his son’s age, regardless of his disability.
Educator
Three fathers in this study thought of the educator
role as the traditional fathering role: imparting family
values and teaching their children the rules of life.
The majority of fathers of children with intellectual
disabilities in this study explained that they were not
able to perform this role as a result of their children’s
disability. A father of two sons with disabilities
indicated that he ‘sometimes tries to compensate for
this [fathering role] with his nephews and nieces.’He
explained the difference in the fathering role for his
children with disabilities as follows: ‘It is a different
role than you would have with [children without
disabilities] like raising and teaching your children
certain norms and values; for us, that is totally
different. I can teach my sons very little. […] You
have to be realistic. I can tell them nice stories, but I
will not receive any response’.
Commitment
All fathers in this study demonstrated great
commitment and emphasised their focus on the well-
being of their children. In fact, a few fathers became
advocates for their children and decided to set up
associations and innovative daytime activities. One
father explained that through his efforts, his daughter
was the youngest person in the Netherlands to receive
a personalised budget for support. He described the
personalised budget system as being very unfair and,
therefore, decided to help other parents to apply for
this fund.
The fathers in this study also showed their
commitment through their presence and by spending
time together. All fathers claimed that being there was
most important for them as a father. They took days
off to be at hospital appointments or rescheduled
work to be present at home after school or day care.
Moreover, fathers found that taking care of their
children by themselves, without the presence of their
wife, was of vital importance: ‘As a father, it is
important that you are there and share things. That
you do not just have to be informed by your wife’.
Spending time together was considered to be a
major constituent of fathering by all fathers
participating in this study. Activities were undertaken
one-on-one or together as a family. In the interview,
the majority of fathers verbally expressed the great joy
they feel when being together with their children and
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John Wiley & Sons Ltd

indicated that they value their time together highly.
Furthermore, fathers enjoy sharing hobbies with their
children with disabilities. For example, a father
expressed the positive influence on the father–child
bond of sharing his interests as follows: ‘I have two
great passions: music and soccer. Even though his
ability to speak is now diminished and he also
underwent severe brain surgery due to persistent
epilepsy, you can still make contact through a shared
passion [music]. And he also likes soccer. What else
do you need?’
The fathers in this study found creative ways to
combine activities that they enjoyed with spending
time with their children with disabilities. However,
one father reported he felt as if he was missing out on
doing ‘father–son-like activities’and on sharing his
hobbies with his son. He further explained that this
inability to share his passions with his son was related
to his son’s disability.
Employment characteristics
The majority of fathers explained that employment is
an important part of fatherhood as a comment by one
father underlines the following: ‘You know, as a
father, you also have to work, you also have a job in
addition [to fatherhood]’. The fathers experienced the
combination of work and having a child with a
disability as being significantly difficult: ‘We have
spent …more than half of his whole lifetime in the
hospital. That is pretty tough if, next to this, you want
to have a job or a kind of life. Well, that’s the difficult
side of it. But I do not blame Down syndrome or
whatever; that’s just bad luck, mostly for him’.
In line with this father’s experience, having a child
with a disability influenced the employment status
and career of some other fathers in this study.
Career choice
Nine fathers underlined the influence that having a
child with a disability has had on their career. For
some fathers, ‘the priority of pursuing a career’had
changed because of this experience. Some fathers felt
insecure about how to manage their working life after
their child was diagnosed with a disability. ‘After she
was born, I immediately felt like “what will this mean
for my job, can I continue doing this?”I was able to
continue, but I think looking back, I did make
different decisions’.
Four fathers decided to turn down promotional
opportunities or consciously chose not to pursue the
career they previously/initially had in mind. Fathers
explained that these career paths were no longer
possible, for reasons such as ‘my wife wants to have
her own life and continue to work’and ‘I want to put
him on the bus in the morning’. Thus, these decisions
were influenced by the father’s wish to be involved in
the life of his child. By contrast, one father described
an ‘involuntary’effect on his career: ‘I was not able to
get a promotion because my boss said: “Well, your
situation at home is not stable, so I do not think you
should be promoted”’.
Flexibility was an important principle for all
employed fathers, which included the flexible
organisation of time and the ability to work from
home. All fathers expressed the necessity of a flexible
work schedule when having a child with a disability.
This was the reason for one father to work in a
hospital, as ‘it is a 24-hour organisation, so whether I
work in the evening or morning, my employer does
not care’. Another father expressed that in his work,
‘if one day something happens, you are not prevented
from just being with your family’. The majority of
fathers in jobs requiring higher education decided to
reduce their working hours, with most working about
32 h a week. Three fathers decided to start working
independently, mainly to have more flexibility: ‘which
also has to do with my daughter, because now I can
coordinate my working hours myself’.
One of the fathers in this study gave up his full-time
job to take on the majority of care for his disabled
child. He and his wife made this decision based on
‘who earns the most and who wants a career the
most’. He also admitted that ‘sometimes it sucks to be
home, although it is also work, […] but I get a lot in
return’.
Not all fathers in this study sample felt the need to
change their job or working hours. One father
explained that he would only do this if it proved
necessary to relieve his wife’s burden. These findings
show that the influence of having a child with a
disability on the career or employment of fathers
varies.
Motivation to work
The fathers who participated in this study expressed
different motivations for being employed.
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Their general incentive to work was to generate
income for their family. Almost all fathers
reported that they felt responsible for providing
financial support for their family. One father
explained that he experiences an enhanced feeling of
responsibility because of having a child with a
disability: ‘I always thought that money could
guarantee the future of my son [with a disability].
Because you never know where healthcare in the
Netherlands is headed to, [the financial aid] keeps
getting less and less…’
However, most fathers stated that they prioritise
family or quality time over a higher income or
employment in general: ‘Maybe I am less career-
focused than before, while I still have, I feel, a tough
job. […] For me, the balance between work and
private life is very important; that is absolutely
preferred to a higher income, but that used to be
different’.
In addition to generating an income, fathers
explained that working is ‘your own interpretation
of your life, something you like to do’. One father
stated that when he decided to reduce his
working hours, he felt that ‘for me it was just too
little. I noticed that at work I missed the
connection with my colleagues. I felt like the field
was passing me by. At that point, I should have
searched for a different job, but I did not want to.
I thought: “no, this makes me happy”’. The
employed fathers in this study said that working
was, in fact, a necessity for them in life because they
had career ambitions.
Three fathers said they needed to work in order
to distract themselves. A few fathers explained
that ‘only being with the kids’is not something
they would aspire to in life. Other fathers admitted
that they needed an escape from pressures at
home: ‘I was running away from a very difficult
situation, I think. I felt very responsible, but I
mainly expressed this by working and providing
income’.
Additionally, some fathers explained that there
were almost always care providers at home. Because
of the amount of support available, one father said
that ‘if I do not have to be at work, I am usually at
home; but sometimes I was not, because I wanted to
get away from [home]’. Because most fathers were
not solely responsible for care, they could make these
choices.
Contextual factors
Cultural expectations
Fathers were also asked to reflect on how they are
viewed by society. One father, who is the primary
caregiver of his child with a disability, described his
experiences with activities for caregivers of children
with disabilities, as he found that they are generally
aimed at women. A divorced father explained that it
must not be common for a father to participate in
household chores to the extent that he does, as people
are often pleasantly surprised when they hear about
this. A few other fathers expressed appreciation for
the positive regard they receive from family, friends
and acquaintances for being involved in family life.
At the same time, the majority of fathers reported
that they felt pitied by other members of society for
being a father of a child with a disability. Moreover, all
fathers were bothered by the usual ‘staring and
gazing’at their children’s physical characteristics:
‘Ifind it important that she is a part of society, so that
people do not think ‘oh well, that is weird,’but that
they just think “hey, that is a father and his daughter”
and that’sit’.
All fathers described that, when their child was
younger, this ‘staring and gazing’was very hard for
them. They had to learn to deal with it and decided to
ignore it. Remarkably, fathers stated that this ‘staring
and gazing’only bothered them if it could hurt their
children.
Social support
All fathers mentioned the support provided by the
Dutch personalised budget system. This budget is
organised by the Dutch government with the
intention of giving parents the freedom to choose and
pay for health services and care providers, such as at
home care providers and (medical) day care on
weekdays and weekends. All fathers indicated that
they highly appreciated this budget. Nevertheless,
some fathers explained that welcoming care providers
into their homes sometimes felt like an invasion: ‘For
example, if during the night, I sleep in my boxer
shorts, then I have to put on jogging bottoms if I want
to grab a glass of water from downstairs. […] Just an
example that sometimes for me, this is hard. But on
the other hand, I am happy that, for once, I do not
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John Wiley & Sons Ltd

have to look after my son and I can have a good night
of sleep’.
A few fathers explained that it is difficult for them to
hand their children over to care providers. Fathers
sometimes ‘quickly take over and do it themselves’.
They try to stay seated, as they know that this support
is also aimed at giving themselves some time off. This
is in accordance with other fathers reporting
experiencing great difficulty with sending away their
child away for day care or an overnight weekend.
None of the interviewed fathers expressed interest
in attending support groups for parents of children
with disabilities.
New life perspective
All fathers in this study stated that the experience of
fathering a child with a disability has changed them, as
‘you learn a lot about yourself as well’. Most fathers in
this study claimed that this experience has enriched
their lives: ‘I always like to say, it also brought us a
great deal of [positive] things’. Most fathers said this
change could partly be caused by the experience of
fatherhood itself ‘but it may also be that this
developed over the years, as I grew older’. Fathers
frequently mentioned that their perspective on life has
changed in ways such as appreciation of the little things,
transformation of expectations,living in the moment and
keeping a positive attitude.
Appreciation of the little things
Four fathers in this study reported their new ability to
appreciate the little things in life. One father explained
that while in the past he was more ‘materialistic’, now
he had other priorities and pleasures: ‘It is a pity that
sometimes you need to suffer, if I could I rather
would have had a different choice, but it brought us
many things.’This change did not always occur
easily. One father explained the difficulty he
experienced with opening himself up to appreciate the
little things as follows: ‘It was partially related to the
fact that I did not have energy left to take time to
experience and to enjoy the little things’.
Transformation of expectations
All fathers explained the need to transform or to let go
of their expectations about their children with
disabilities or about life in general. They explained
that as these new realisations emerged, they became
aware of their subconscious expectations that they
previously had about their children, which made them
reflect on ‘what they want for their children’.
The fathers clarified that they had to transform
their expectations of their child as well as the
relationship with their child, especially shortly after
the diagnosis. Some fathers in this study experienced
this as a ‘phase of mourning’but added that they have
since grown out of this phase: ‘The degree to which I
regarded [these expectations] as important has
changed dramatically over time’. Sometimes
expectations changed yet again. For example, one
father stated that his lowered expectations of his
daughter hampered her development. This father
called himself a ‘disabling factor’,as several events
made him realise that his daughter ‘can do much
more than we notice all together’.
Living in the moment
The majority of fathers claimed that their children
with disabilities forced them to live in the present.
Half of the fathers mentioned insecurity regarding the
life expectancy of their children as a reason for their
altered ‘pace of life’. Most fathers explained that this
new perspective on life has enriched their lives: ‘We
take it one day at a time. […] I think more people
should do this; not focussing on the future or looking
back, I think that has positively impacted our lives.
Just more living in the moment’.
The degree to which the fathers in this study
prepared for the future varied considerably. Most
explained that they lived day by day and decided to
prepare for the future of their children by saving up
money. One father mentioned the importance of also
ensuring a future for his child. Others explained that
they think in the long term depending on the issue:
‘The only thing for which we plan for the long term is
the construction of the annexe for our son. […] Apart
from this, we live per week; we make a weekly
schedule, and I also create a monthly schedule with
the care providers’.
Maintaining a positive attitude
All fathers in this study tried to make the best of their
situation. They tried to see the bright side of their
changed lives and had a very positive attitude. Again,
some fathers explained that keeping a positive attitude
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had been natural to their character for all their lives,
whereas others made a shift over time. Maintaining a
positive attitude is related to the desire not to give up
and was seen as essential to keep going. Some fathers
explained that they had to ‘flip a switch’in order to
maintain this positive attitude: ‘As long as they are
healthy, feel comfortable in their skin, in their own
little world, well, they do not know any better. We do
know better [and] we must flip a switch. If you keep
on comparing yourselves to other parents and
children, time and time again, well, you will get sad.
Why do we not have that? If you can manage to flip
this switch, you can still do great things together with
children with disabilities’.
The fathers stated that their children’s ability to
‘make contact’and their well-being, including
happiness and health, greatly influenced their ability
to remain positive: ‘First thing in the morning, he
smiles at you, he goes to bed happy and that is most
important to us. Then we feel like we are doing well,
and he is doing well’.
Conclusion and discussion
This study was conducted with the aim of gaining
insight into the experiences of Dutch fathers of
children with disabilities. It draws on the conceptual
framework of ‘responsible fathering’, a model
directed towards fathers of typically developing
children (Doherty et al.1998). The father factors and
contextual factors of the model were deemed reliable
also for mapping the experiences of fathers of children
with disabilities. Categories such as role identification,
commitment,employment characteristics,cultural
expectations and social support were found in the data
and will subsequently be described and discussed
below. Additionally, fathers in this study gained a new
life perspective through fathering a child with a
disability.
Role identification
Fathers in this study reported various perceptions of
their fathering roles, including caregiver, educator
and supervisor. These roles have also been described
in studies of fathers with typically developing children
(Olmstead et al.2009; Summers et al.1999). The
findings in this study reveal that fathers of children
with disabilities hold multiple roles simultaneously,
which also mirrors a recent study on fathers of
typically developing children (Humberd et al.2015).
Nevertheless, several fathers in this study expressed
that the educator role in the case of children with
intellectual disabilities is different or non-existent
compared with typically developing children.
Commitment
The fathers considered ensuring the well-being of
their children with disabilities to be their
responsibility. Furthermore, spending time together
was a priority for all fathers in this study, which is in
line with findings by Bonsall (2014). The ability to
share interests with their children, or not, significantly
influenced their fathering experience. One father
specifically expressed his ‘grief’at not being able to
have a typical father–son relationship with his child,
which agrees with previous research conducted on
this subject (Thackeray and Eatough 2016), although
the majority of fathers were able to find creative ways
to spend time together. This suggests that the
possibility of sharing interests might depend on
individual child characteristics and capabilities, which
corresponds with the ‘responsible fathering’
conceptual model (Doherty et al.1998).
Employment characteristics
All but one of the fathers fulfilled the breadwinner
role. This finding coincides with several studies
reporting a ‘traditional parental role division’in
families with children with disabilities (Di Giulio et al.
2014; Hornby 1995). In addition to generation of
income, employment also serves as a coping strategy,
which agrees with recent research (Davys et al.2017).
Only a few other studies have explored the
experiences of employed fathers of children with
disabilities, which are inconclusive as to the nature of
the impact on the labour market participation. The
fathers in this study adapted their work life to their
family life, which was partially related to the increased
demands of care for their child. A recent study by
Wright et al.(2016) showed that fathers chose to
reduce their working hours and refrain from
promotional opportunities, which concurs with the
findings of this study. Several studies have mentioned
the need of a flexible workplace (Carpenter and
Towers 2008; Crowell and Leeper 1994; Golden
2007; Shave and Lashewicz 2016; Venter 2011) and
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the choice of self-employment to provide flexibility for
the ‘unplanned demands of caring’(Wright et al.
2016), which highlight the need for flexibility at
companies and organisations to support their
employees with children with disabilities.
Cultural expectations and social support
All fathers reported their struggle with stigmatisation
because of their children’s disability, as indicated by
other authors (Pelchat et al.2003; Thackeray and
Eatough 2016). Many challenges that families face are
experienced in the interaction between the differences
caused by disabilities and a society that is not
accepting or accommodating (Fisher and Goodley
2007). In a recent study on families with a family
member with disabilities (Boelsma et al.2018), it was
found that families felt confronted by what is
considered to be normal in their daily lives through
their interactions with others. To reduce this form of
sigma, referred to as associative or family stigma,
interventions need to include families where disability
is the case (Mitter et al.2018). A study in Indonesia
proved the success of combining interventions that
focus on a family as well as a societal level (Dadun
et al.2017).
Dutch fathers have access to governmental support,
which affected their fathering experience in a positive
way. The Dutch personalised budget and the flexible
organisational culture in the Netherlands enhance the
fathers’ability to spend time with their families. The
financial contributions also compensate for costs re-
lated to the child’s disability, which might decrease
the ‘breadwinner burden’. However, Dutch fathers
expressed their worries because the long-term future
of these budgets is unsure, which emphasises the im-
portance of this support system on the experience of
fathering children with disabilities.
New life perspective
The key finding of this study was the substantial
influence of a new life perspective on the fathering
experience. This factor was not depicted in the
“responsible fathering”conceptual model of Doherty
et al.(1998). Some fathers expressed the enrichment
of their lives, which concurs with a previous study by
Bonsall (2014). Subcategories of this category
included appreciation of the little things,transformation
of expectations,living in the moment and maintaining a
positive attitude. Recent studies have reported a
transformation of fathers’expectations of their lives
and their children with disabilities (Baumann and
Braddick 2016; Shave and Lashewicz 2016), which
agrees with the majority of the fathers in this study.
Moreover, the ‘pace of life’found in this study is
similar to the day-to-day life of families with a
member with a disability as reported by Schippers and
Van Hoheemen (2009). Thus, it could be suggested
that this new life perspective is a new insight into the
lives of fathers of children with disabilities.
The addition of the category new life perspective
offers extra insights into the life of men who engage
differently with their children. Instead of an emphasis
on the physically active and play-centred parenting
style typical for men (the ‘embodied habitus’, Doucet
2013), we learned that fathers in this study, through
their specific care activities, assumed new embodied
and relational positions vis à vis their children.
Understanding the importance of this new life
perspective can inform fathers of children with
disabilities and those who support them, suggesting
an approach that focusses on the benefits associated
with having a child with a disability. By providing an
alternative and more empowering perspective,
negative contextual factors, such as the pitying that
the fathers in our study experienced, can be
countered (Allred 2014; McConnell et al.2014).
Acknowledgements
We would like to thank the fathers who participated in
the study. We are grateful for the insightful
suggestions by Dr Ekas and the anonymous reviewers.
Source of funding
No external funding was received for the research
reported in the paper.
Conflict of interest
The authors report no conflict of interests.
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Accepted 23 December 2019
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