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RESEARCH

JCHC
Differences and similarities Journal of Child Health Care
Copyright © 2003
between mothers’ and fathers’ SAGE Publications
London, Thousand Oaks, CA
and New Delhi
experiences of parenting a child Vol 7(4) 231–247
1367-4935(200312)7:4
with a disability 037080

DIANE PELCHAT, PhD

HÉLÈNE LEFEBVRE, PhD
Interdisciplinary Team for Family Research (ERIFAM), Faculty of Nursing, University of
Montreal, Montreal Centre for Interdisciplinary Research in Rehabilitation (CRIR)

MICHEL PERREAULT, PhD

Health and Prevention Social Research Group (GRASP), Faculty of Nursing,
University of Montreal

Abstract
This qualitative study used focus groups to identify the differences and
similarities in the experiences of parents of children with a disability. Two
main themes emerged, showing the ways in which the mothers and fathers
are alike or different. One concerns roles, actual and expected, in the
various subsystems of family life. The other concerns the normalization
and stigmatization that arise because of the child’s problem. Mothers tend
to score better in terms of interpersonal and group communications. It
would seem that the fathers’ expectations are harder to fulfil than the
mothers’. The fathers’ expectations are attuned to the outer world; the
actual day-to-day tasks related to the child’s care are not their priority. The
mothers are less demanding and their expectations are more self-focused.
Interestingly, these families are similar to families of children without a
disability; however, the difficulties they experience are accentuated by the
presence of a child with a problem.
Keywords difference mother/father disability Down’s Syndrome
● ● ●

normalization/stigmatization roles and expected roles

●

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Introduction
In this changing social and political environment, the roles of men and women
are constantly being redefined to adapt to new requirements of everyday life. An
obvious consequence is that an increasing number of researchers are now
turning their attention to the roles of fathers and mothers. This study of the
differences and similarities in the personal experiences of fathers and mothers
whose children have Down’s Syndrome is a continuation of an earlier study on
retrospective learning which demonstrated that fathers and mothers acquire
knowledge in different ways (Pelchat et al., 2001). Those results led us to conduct
two simultaneous discussion groups, one with fathers and the other with
mothers. In this article we present the results that came from the discussion
groups.
The parents were participants in an early family intervention program –
Programme d’Intervention Familiale (PRIFAM). The intervention, developed by
Pelchat (1989), is based on a philosophy of care that puts strong emphasis on the
strengths and adaptive capacities of the family and its members. The principal
objective of the programme is to promote family autonomy in providing care
for a child with a disability, within five family subsystems: individual, marital,
parental, family, and extended family and non-family. This is accomplished by
recognizing and optimizing internal and external resources that are useful for
adaptation, and empowering the family with respect to its own competencies.
Parents begin the PRIFAM program at the time that their child is born.
An important function of this program is to promote early involvement of
fathers in the care of their children. In the PRIFAM program, couples are
encouraged to discuss things between themselves in order to gain an under-
standing of what the other is going through and to acknowledge each other’s
needs. The couples are further encouraged to set realistic mutual expectations,
and everyone involved is encouraged to explore new avenues and be more
flexible (Pelchat, 1989, 1995).
The study will help to increase our understanding of the parents’ respective
experiences and, as a result, will help to improve intervention programs.

Literature review
Until the beginning of the 1980s, few studies had addressed the differences in the
ways that mothers and fathers adapt to having a child with a disability. As Bailey
et al. (1992) observed, the majority of studies have focused on the needs, per-
ceptions and behaviour of the mother (Brown and Barbarin, 1996; Herbert
and Carpenter, 1994; Katz, 2002; King et al., 1996). Fathers, on the other hand,
were only evaluated in terms of the importance of the support they gave to
the mothers and the importance, to the mother, of the father’s reaction to the

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disabled child (Damrosch and Perry, 1989). Studies that did examine differences
between the parents generally found that there were significant differences in the
ways that they adapted to their child’s disability. However, the authors of one
study maintain that there are more similarities than differences (King et al.,
1996).
Results of a number of studies demonstrate that mothers of a child with a
disability experience higher levels of stress and depression than their spouses
(Beckman, 1991; Pelchat et al., 1999a, 1999b; Sloper and Turner, 1993; Timko et
al., 1992). Fathers were more likely to experience stress about their child’s dis-
position (Krauss, 1993), about their own degree of attachment or bonding with
the child (Beckman, 1991; Cohen, 1999; Krauss, 1993), the need to spend time
with their spouse (Heaman, 1995) and their capability to respond financially to
the child’s needs (Brown and Barbarin, 1996; Cohen, 1999; Heaman, 1995).
However, Heaman (1995) reported that both parents agreed that issues about
‘the future of the child’ generated the most stress.
Some authors have attested that mothers benefited more from help which
was provided by support groups (Heaman, 1995; Krauss, 1993), and that men
were less likely to seek help (Dulac, 2001). Crowley and Taylor (1994) report that
the two parents each have different perceptions of the way in which the family
functions, especially at the level of parental well-being. Lillie (1993) observed that
mothers tend to be very actively involved with the child, and that they often tend
to exclude the father from taking care of the child, thereby minimizing his
involvement. The father’s difficulties in adapting to the situation seem to be in
relating to the disability itself, while the demands of taking care of the child make
adapting more difficult for mothers (Krauss, 1993).
Results of a longitudinal study conducted by Pelchat et al. (1999a, 1999b)
showed that mothers are more likely to suffer from emotional distress, anxiety
and depression than fathers. They were also more inclined to believe that their
child could adapt well and to perceive their parental role as a challenge – virtually
the dominant issue in their lives. We found little difference between parents
about satisfaction with the level of emotional support offered by their opposite,
with the exception of the problem of sharing parental responsibilities. Mothers
were less likely to perceive this to be equitable.
Most of the studies we have identified were quantitative and did not provide
an in-depth understanding of the differences and similarities in the experiences
of each parent. We included them because of their empirical validity – being
based on large sample populations that would permit generalization of the
results and having used validated statistical tools. However, in one qualitative
study, Pelchat (1993) found a marked difference between mothers and fathers
participating in the above described PRIFAM intervention program regarding
the type of relationship that they developed with the nurse with whom they dealt.
Pelchat further observes that it is usually the mothers who are most emotionally
involved, while fathers are involved on a more cognitive level. The fathers added

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that the principal benefit of the program that they gained was recognizing the
importance of providing support to their partner.
The above studies identify differences in the experiences of mothers and
fathers of a child with a disability. In this study we are also interested in the simi-
larities in their experiences in coping with a child who has Down’s Syndrome.

Method
This qualitative study is in the form of exploratory interpretative research (Van
der Maren, 1995). The methods used allow statements and accounts of experi-
ences to be significantly reformulated (Fillion et al., 1996; Mucchielli, 1996).
Focus groups (Krueger, 1994; Merton et al., 1990) were used to collect state-
ments, perceptions and opinions from the interactions and exchanges of the
participants (Mayer and Ouellet, 1991).

Sample
The sample was composed of nine parents (five families): four couples and one
mother (whose husband did not attend the session) who had a child born with
Down’s Syndrome. The children were between the ages of two and five years old
at the time of the study. Three parents were between 25 and 35 years old and the
remaining six were between 36 and 45 years. Three of the mothers had attended
university; one mother and two of the fathers had college-level education; and
one mother and two fathers had secondary-level education. Annual family
income for two of the families was between C$30,000 and C$60,000; the three
other families had annual incomes above C$70,000.

Interviews and data collection

We conducted two focus groups simultaneously in separate rooms to avoid
crossover influences. The first group was composed of the five mothers, as well as
two female researchers from the interdisciplinary family research team (ERIFAM
– Équipe de recherche interdisciplinaire sur la famille) and a female audio/video
technician. The second group was made up of the four fathers, two male
researchers and one male audio/video technician. The researchers and tech-
nicians were the same sex as the participants in order to preserve homology in
gender-based social roles. The exchanges lasted 90 minutes. The sessions were
videotaped then transferred to audiotapes, after which the tapes were tran-
scribed. One of the two researchers led the group discussion, while the other
acted as an observer and took notes on the dynamics of the interaction.
Participants responded to four open-ended questions, which were contrived

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to elicit accounts of their experiences as well as their personal explanations for

the differences and similarities with their partners. The underlying premises for
getting parents to discuss their personal experiences were that men and women
are born different, and that they are socialized differently in their social environ-
ments.

Data coding and analysis

Using the Merton et al. (1990) procedure for coding and content analysis, we
were able to reduce and categorize the data and to extract meaning. Our initial
analysis, based on themes derived from the literature, differentiated the particu-
lar experiences of the parents. At each stage of the content analysis, we obtained
inter-rater agreement among three members of the ERIFAM team.
Each stage of the analysis was carried out chronologically, for each of the
family subsystems (personal, marital, parental and extended family), following
the parents’ narrative of their successive experiences (pregnancy, birth, being
made aware formally of their child’s problem, and after they had been informed).
We analysed each interview separately, in order to extract the perceptions voiced
by the fathers and mothers in terms of contextual experiences, differences and
similarities. We then developed a profile of the fathers and mothers, which we
used for comparisons.
Two broad themes emerged from analysis of the accounts: actual and
expected roles and the normalization/stigmatization of the child with Down’s
Syndrome (Table 1).
The literature (Bonney et al., 1999; Dandurand, 1990; Lacourse, 1994),
defines ‘role/expected role’ in the family as gender-related activities or tasks that
are adopted by the individual or are attributed to the individual by his or her
partner, or by any other member of the individual’s social group. The concept of
‘normalization/stigmatization’ that we used was derived from Dorvil et al.
(1995). These authors view normalization as the imposition of a requirement,
or implementation of rules and behaviours, that will reduce or eliminate differ-
entiation. As such, it is an attempt at reducing the stigmatization with which the
child would have to contend. Stigmatization emanates from people outside the
family who stand in the way of an individual’s ability to fill a social role and/or be
accepted by society.

Context of the interviews

We studied the behaviour and attitudes exhibited by the fathers and mothers
during the interviews in the two focus groups. The observations that we made
give a better understanding of the results. In general, they confirm earlier find-
ings that men and women differ in the way in which they communicate

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Table 1: Themes emerging from the findings

Data (interviews) Categorization Themes

‘As mother, she seemed to be more concerned Mother’s level of Roles and
and worried about making mistakes. They’re commitment and expected roles
the mothers and they like to oversee things. responsibility
It was more my wife who took care of things.
I was there, but only in the evenings.’ (Father)

‘Perhaps, unlike us, they have no innate Mother’s domain Roles and
talent for this, and we may have to encourage and father’s expected roles
them, and maybe we haven’t done that involvement
enough.’ (Mother)
‘The home – it’s true that we feel that it’s our
place. This time, when he wasn’t working, he
went to the meetings, but I told him what to
ask before he left.’ (Mother)

‘Go back 15 years and look at kids with Down’s Going out with Normalization/
Syndrome – they were kept out of sight. Today the child in stigmatization
it’s much the same. But I take my little girl public
wherever I go. I’m not ashamed of her. People
look at me strangely – if you don’t like it,
tough luck. I’m proud of my little girl.’ (Father)

‘People avoid looking at you. You get easily Other people’s Normalization/
rattled, it only takes someone to stare at her attitudes to the stigmatization
or to make a remark and I break down and cry. child
It’s been very difficult for me.’ (Mother)

(McGoldrick, 1989; Tannen, 1990). Mothers were more ready to focus on per-
sonal experiences than fathers. In addition, mothers seemed more natural in
adopting attitudes of openness, listening and understanding, and they made
more comprehensive contributions to the discussion than the fathers. They
rarely contradicted themselves and were fully involved in the discussion. On the
other hand, the fathers covered a broader range of themes but only touched on
them superficially. They jumped from one subject to the next, frequently inter-
rupted each other, and some even made scathing comments. Moreover, when
speaking of an experience that was different from another participant’s, rather
than calmly pointing out what the difference was, they expressed themselves in a
tone of disagreement.

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The interview with the mothers’ group was relaxed and had an atmosphere
of harmony and trust, while the atmosphere in the fathers’ group was more tense
initially and there was a noticeable distancing between the fathers and the inter-
viewer. However, after a while the fathers adopted a more open attitude and
became more involved in the discussion. They seemed to become more assured
and even showed some humour. The fathers were less at ease talking about what
they had been through and seemed to need a period of calmness before moving
into more intimate topics. Unlike the fathers’ experience, the interviews seemed
to give the mothers an outlet for their emotions; they felt they had access to a
special source of information that would give them a better understanding of
what was happening.

Results and discussion

Our research focused on the roles and expected roles of parents within the
various family subsystems and on their perceptions of the normalization/stigma-
tization experience. The discussion of our findings is incorporated into the
presentation of results. These demonstrate that there are more differences than
similarities between the experiences of mothers and fathers whose children have
Down’s Syndrome.

Roles and expected roles of parents

The expectations that the participants expressed about their roles in each of the
family and social subsystems directly emanated from their respective con-
ceptions of these roles. The fathers’ discussion was centred primarily around the
parental and extended family issues, while the mothers dealt more with marital
and parental concerns.

Family and parental life

In light of discussions with the fathers, it became apparent that their expectations
were essentially attuned to the world outside their families. They did not talk
about either their self-expectations or their performances in their roles as father.
Conversely, mothers seemed more prone to question their abilities to be good
parents and set high standards for themselves, particularly in lavishing care on
the child, thereby generating more stress for themselves. This is supported by
other studies which show that mothers in similar situations show higher levels of
stress and depression than fathers (Beckman, 1991; Bird, 1999; Pelchat et al.,
1999a, 1999b; Sloper and Turner, 1993; Timko et al., 1992).
For some couples, division of roles was traditional: the father worked outside
the home, and the mother remained at home to take care of the children. For

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those couples in which the mother also worked outside the home, she assumed
the dual role of mother and worker, without any increased participation by the
father in the child’s care or in domestic chores. Mothers expressed their dissatis-
faction with the division of labour, observing that it was unfair despite the
fathers’ claim that, since the birth of their child with Down’s Syndrome, tasks
were shared much more equitably. Dulac (1993) maintained that these questions
of inequality can be ascribed to both the structure of the workplace and ideo-
logical factors, while Bonney et al. (1999) suggest that the nature of jobs held by
men is not advantageous to their roles as fathers.
The mothers acknowledged that their partners did ‘help’, and did appreciate
their efforts to ‘assist’ them. This reflected the normal degree of the father’s
involvement in family life: being a help and a support. The mothers also recog-
nized that they did not leave much room for the fathers to participate – not
readily wanting them to do housework or spend much time with the children
(Russell and Radojevic, 1992), and limited their involvement by excluding them
from the baby’s care (Lillie, 1993):
I believe that we make sure they don’t get too involved . . . Maybe it’s that, unlike
us, it doesn’t come naturally to them . . . We don’t give them much leeway.
Such statements reveal the mothers’ level of confidence regarding the fathers’
parental abilities (Lillie, 1993). They feel that the father is not capable of pro-
viding adequate care for the child or that they are simply more qualified for this
important task.
Léonard and Paul (1995) observe that fathers usually have lower perform-
ance standards in their paternal role and are less conscientious. Mothers dealt
with the emotional aspects of their situation better although, as they also pointed
out, the fathers experienced the same emotions about being a parent as they did.
In this regard, Neyrand (2000) suggests that often men do not allow themselves
to become ‘fatherly’ – a role that seems both foreign and inappropriate to them.
The modern male is unfamiliar with the image of a father who is close to his
young children and he feels an internal barrier to assuming this new role (Stork,
1995).
We did not uncover any fundamental differences with regard to the roles and
expected roles of the mothers and fathers between families that had a child with
a disability and those that did not. This is an important finding that is supported
by the work of Mahoney et al. (1992). These authors observed that mothers of a
child with a disability shared the same positive and negative experiences with
mothers whose children were not disabled. Bower and Hayes (1998) have also
shown that, in every respect, the ways in which families of a child with a disability
function are similar to other families. Such observations raise doubts about
traditional beliefs that these families are, in some way, ‘deficient’. As Antonovsky
(1993) has observed, they challenge the tendency to give priority to the study
elements such as stress and depression in these families, instead of looking at its

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well-being or trying to understand the family situation and give it direction

(Boss, 1993; Helff and Glidden, 1998).
Nonetheless, our study does indicate that the daily care regime for the
child is extremely difficult when the child’s special needs are factored into con-
sideration. Parents referred to the amount of their time and energy that was
consumed by numerous appointments with specialists and looking into services
for their child. Each medical procedure and external contact necessitated an
immediate and ongoing adjustment (Pelchat and Levebvre, 2003). The shortage
of resources, and the lack of information about them from professionals and
physicians, complicates life for these families: it creates an extra burden for the
parents who must find ways of filling their often complex needs for themselves
(Pelchat et al., 2001a).

Marital life
Mothers found that their partners were more reluctant to talk openly about
Down’s Syndrome or ask for help than they were themselves; this was a result of
having been brought up to conceal their emotions and be ‘strong’:
My husband took things in more internally . . . He kept it to himself . . . Myself, I
went through all the emotions . . . He did not let his emotions out . . . Maybe, it was
his way of dealing with it . . . For me, everything had to come out!
It should be remembered that the fathers had more difficulty in talking about
their emotions in the interview, whereas the mothers seemed to find discussion
to be a means of understanding what they were going through. On this topic,
Tannen (1990) has written that women place greater value on their emotions in
reviewing a situation and to help them determine the behaviour and attitudes to
adopt. Fathers are more likely to use cognitive coping strategies (Frey et al.,
1989). Fathers were aware of their reticence, but they did not see it as a difficulty.
The mothers associated reluctance to talk with their spouse’s discomfort.
Nonetheless the fathers did place a high priority on dialogue, which they saw as a
way of reaching agreement with their partners.
There was one important contradiction between the fathers’ and mothers’
opinions. Fathers claimed that they frequently talked with their partners in order
to reach an agreement, while the mothers reported that their partners rarely
spoke about what they were feeling, that they had trouble expressing themselves
and they had to guess at their thoughts and emotions. These contradictions make
it evident that mothers and fathers have different standards for evaluating their
own communication and that of others, and have different perceptions of what
communication and dialogue are.
Fathers are sometimes thought to have a fear of intimacy (Bomar, 1996;
Walsh 1993). However, it seemed that the fathers in our study were attempting to
spend more time alone with their partners, despite the fact that caring for a child

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with Down’s Syndrome left less room for intimacy. Fathers were hoping to estab-
lish a more normal family relationship, to diminish the mothers’ preoccupation
with the Down’s Syndrome child, by having her spend more time with them
and to relate more to the other children, as well as the fathers themselves. The
mothers reproached themselves for having to leave the child in someone else’s
care while they attend to other matters: ‘I feel guilty leaving my child, even if I
have to go to work.’
In spite of these differences, it seems that the parents were putting a strong
emphasis on their marital relations. Those we interviewed said they were fully
aware of the need to make an effort to maintain a good relationship with their
partner. While they did appear to have the same objective, it seemed that the
differences that we have identified manifested themselves in the different way in
which each went about achieving that objective.

Extended family
Fathers were dismayed by other male family members’ clumsiness and uneasi-
ness with the child, while the females, in comparison, were comfortable and were
generous in the support they offered:
Playing with my kid can’t be the same as playing with the other kids . . . When it
comes to that, the uncles simply vanish but the aunts stay with me, and when the
aunts can’t, the grandmothers will.
In this respect, fathers felt a greater need for support from their extended fami-
lies than the mothers, even though it often did not take the form they expected.
It was interesting to find that these men have recognized male shortcomings
that they would have probably exhibited themselves, if it had not been for their
own experience with their child. Furthermore, they expressed the same desires as
the mothers to be in a relationship with a spouse who was gentle and under-
standing, and would listen to them and respect them – the kind of qualities a
woman would be expected to manifest in dealing with others, but would be less
likely of a male. This illustrates the difficulties faced by men living through an
unusual situation that has not yet been recorded in the catalogue of male societal
role models. This is an important finding that should be further investigated
(Boss, 1993).

Normalization/stigmatization
The differences that we uncovered seemed to be much more related to the
parent’s individual personalities than their gender. For example, when one father
said that he was under constant surveillance by the nurses, another said he was
glad to see that his child was closely monitored, and his or her security ensured.
In addition, it also seemed that the fathers had a different view of stigmatization

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than the mothers. Mothers spoke of the fathers’ discomfort with the child’s
condition (not wanting to bother others, or to be seen in public), while they
themselves did not hesitate to ask for help and support. This difference seemed to
pose fewer problems for the mothers who are more involved and devote more
time to the child – something the fathers see as a consequence of the pity that they
feel for the child. Fathers seemed more unsettled by their child’s disability and
needs for care (Pelchat et al., 2001b). Needs, values and worries all influence the
fathers’ level of involvement with the child, the areas in which they feel com-
petent, the activities for which they prefer to take responsibility, and those in
which they do not want to participate.
For the fathers, being confronted with what they see as bias from their fami-
lies and professionals (among others) when their child was compared to others,
was a source of stress. The stress may be more related to the marginalization, and
consequent stigmatization, that the disability generates than the disability itself.
In this regard, the parents agreed that this experience had made them more
sympathetic to the way that they looked at others who were considered to be
different, and that they had gained an understanding of the pain that marginal-
ization and stigmatization can cause (Berthiaume et al., 1997).
The mothers and fathers experienced different relations with professionals.
The men said that their spouses were resourceful, persevering, patient and more
open than they were in dealing with health professionals:
Me, I am aggressive, my wife is not. She is more tolerant than I am, and has more
confidence in the outside resources.
The fathers felt that they were being intruded upon by the nurse and only
accepted their help when they felt that the outcome would be evident and
measurable, while the mothers were more interested in emotional support. The
satisfaction that the fathers did report about their experiences has convinced us
that they, too, had a need to open up and find some support: ‘Today, we had a
chance to talk and exchange ideas, and that does me good.’ The fathers were also
reluctant to seek help because that would mean admitting that their child was
different and had limitations, as well as confronting their own limitations as
parents.
The difference in the way in which mothers and fathers regarded their child
was particularly interesting. Mothers wanted their children to be recognized for
both their individuality and their singularity, all the while deeming their child to
be no different to other children (Landsman, 1998). For their part, fathers
seemed to want their child to be thought of as being normal. They hoped that
people would keep in mind the child’s similarities with other children, because
the abnormalities might raise questions about their paternity or social status
(Parent, 1992). The parents did fully think of their child as being disabled.
Instead, they felt that their lives were being enriched and that they were simply
trying to adapt to the child’s needs one day at a time: ‘After all that has taken

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place, we’ve realised that if we had not had our child, we would have missed
something.’ This adaptation was an ongoing process in which they based their
own lives on that of their child, and let the child’s special needs take precedence
over their own.

Limitations of the study

There are some limitations to our study. First, the small number of participants
does not permit generalization of the results; however, the number was adequate
to give a clear picture of the experiences of the mothers and fathers. Our use in
the interviews of facilitator of the same sex as the participants may have influ-
enced the atmosphere of the encounters and the nature of the parents’ comments
to some extent. The discussions may have had a different character in the
presence of facilitator of the opposite sex. However, McCloskey (1987) has
suggested that the facilitator’s interaction styles depend more on the context of
the communication than on the facilitator’s gender.
The parents who participated in this study had all previously participated in
the PRIFAM program. This experience may have modified their perceptions of
life with a child with Down’s Syndrome. It is also possible that, for a variety of
reasons, the participants censored their own comments about present or pre-
vious experiences to a certain extent. In reality, it is often difficult to recall exactly
what happened in any given situation; the passing of time and other experiences
also may have altered their original perceptions (Baribeau, 1996; Van der Maren,
1995). To deal with this, we used precise reference points during the discussions
to attenuate the effect of retroactive perception.

Recommendations for clinical applications and research

Few studies have taken advantage of qualitative methods to study the experiences
of parents of a child with an intellectual disability. The originality of this study
comes from our approach towards investigating the differences and similarities
in the experiences of mothers and fathers, which are a direct outcome of their
individual points of view. It sheds new light on the dynamics between parents
when a child is born with a disability. Clinical experience has demonstrated
amply the difficulty of enrolling the father in any support process. Better under-
standing of the fathers’ experiences, how they deal with the situation, their per-
ception of family roles, and the relationships that they establish will be useful
intervention tools. It is evident that men are less likely to request help, that the
available programs do not suit their needs (Dulac, 2001), and that they have been
largely ignored by health professionals in these situations (King et al., 1996). A
support program that deals with the specific needs of men would make asking for
help easier, and would make the professionals more aware of the specific needs of

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fathers. In addition, health care professionals’ basic and ongoing training could
be altered to include services that respond to mothers’ and fathers’ specific needs.
This would increase parents’ satisfaction and improve the effectiveness and
efficiency of professionals. The issues of normalization and stigmatization, as
well as the individual social roles of fathers and mothers, will be part of subse-
quent studies. These will provide material for more in-depth analysis of the
relationship between the mother and father in their roles as individuals, parents,
marital partners and members of the family at large.

Conclusion
This study brings to light the preliminary changes in family dynamics when a
child has a congenital health problem. On the one hand, it is important to be
aware that families in which there is a child with a disability show many simi-
larities with other families, even though their difficulties are obviously exacer-
bated by the child’s disability. On the other hand, the demands of caring for a
disabled child, and the numerous appointments with specialists, obviously take
up much more time than under normal circumstances. These findings highlight
the importance of the parents’ conceptions of family roles and of the partners’
expectations in their present situation. It is evident that distribution of functions,
particularly daily household duties, falls largely on the mothers and increases
their workload. Mutual support, complementarity, reaching consensus through
dialogue and the relationship with health professionals are central themes in
which the experiences of mothers and fathers converge but are still differentiated.
The main difference lies in how they perceive the situation and the way in which
they cope with their child’s difference.

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DIANE PELCHAT is Professor in the Faculty of Nursing, University of Montreal.

She is a psychologist and Director of the Inter-network Group for Research on
Family Adaptation (GIRAFE) and of the Interdisciplinary Team for Family
Research (ERIFAM), and is a researcher at the Centre for Interdisciplinary
Research on Rehabilitation (CRIR).

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HÉLÈNE LEFEBVRE is Assistant Professor in the Faculty of Nursing, University of

Montreal. She specializes in adult education and is a researcher with the Inter-
network Group for Research on Family Adaptation (GIRAFE), Co-director of the
Interdisciplinary Team for Family Research (ERIFAM) and is a researcher at the
Centre for Interdisciplinary Research on Rehabilitation (CRIR).

MICHEL PERREAULT is Professor in the Faculty of Nursing, University of

Montreal. He is a sociologist and a researcher with the Health and Prevention
Social Research Group (GRASP) at the University of Montreal and with the
Collective for Research on Homelessness, Poverty and Isolation (CRI) at the
University of Quebec at Montreal.

Correspondence to:
Professor Diane Pelchat, Faculty of Nursing, University of Montreal, CP
6128, Succursale Centre-ville, Montréal Qc H3C 3J7, Canada.
[email: diane.pelchat@umontreal.ca]

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