Blackwell Science, LtdOxford, UKNHSNursing and Health Sciences1441-07452004 Blackwell Publishing Asia Pty LtdJune 2004629399Research ArticleParents’ experiences

of asthmaA. Trollvik and E. Severinsson

Nursing and Health Sciences (2004), 6, 93–99

Research Article

Parents’ experiences of asthma: Process from

chaos to coping
Anne Trollvik,1 mph, rn and Elisabeth Severinsson,2 drph, mnsc, rnt, rpn
1
Hedmark University College, Faculty of Health Studies, Elverum University of Oslo, Institute of Nursing
Science, Oslo and 2Stavanger University College, School of Health and Social Work Education, Stavanger,
Norway

Abstract The aim of the present qualitative study was to describe nine parents’ everyday experiences of liv-
ing with a child suffering from asthma. Data were collected by means of in-depth interviews and
phenomenological content analysis. Four main themes emerged: feelings of uncertainty, helpless-
ness and guilt; the need for support and help from healthcare professionals; adaptation to everyday
life; and the development of coping strategies. In addition, two subthemes; trying out and seeking
information, emerged. Trying out was found to be an important strategy for parents in managing
the illness. In encounters with healthcare professionals, parents felt that they were not respected
and that their competence was questioned. In conclusion, this study emphasizes the importance of
a mutual dialogue between healthcare professionals and parents to enable the parents to develop
the competence necessary to care for their child.

Key words asthma, coping, nursing, parents, qualitative.

INTRODUCTION of hope, trust and acceptance. Uncertainty has been

found to be one of the greatest stressors in mothers
Asthma is the most common chronic childhood disease
of children diagnosed with a life-threatening disease
and an increased prevalence of asthma has been
(Cohen, 1995; Gibson, 1995; MacDonald, 1996). These
reported worldwide (International Study of Asthma
mothers experience great fear. Fear is also related to
and Allergy in Childhood, 1998). Nystad et al. (1997)
the responsibility of caring for a sick child. The study
found that the lifetime prevalence of asthma among
showed that mastering uncertainty was the overall
school children in Norway increased from 3.4% in 1981
theme expressed by these mothers (MacDonald, 1996).
to 9.3% in 1994. Due to the increase in asthma preva-
Parents need strength to cope with the continuous
lence and morbidity, the cost to society in terms of hos-
strain. Several studies show that a child’s chronic ill-
pitalization, anti-asthma drugs, parents missing work
ness influences the whole family (Clements et al., 1990;
and children missing school is significant (Carlsen,
Johnstone & Marder, 1994; Ladebauche, 1997; Gallo &
1994). Asthma is the most prevalent chronic childhood
Knafl, 1998; Cohen, 1999). Dysfunctional family inter-
condition and can have a significant impact on children
action seems to be the result rather than the cause of
and their families. As the incidence of asthma in-
wheezing in infancy (Gustafsson et al., 1994). Hentinen
creases, so too does the number of families caring for
and Kyngäs (1998) found that parents of children with
children suffering from asthma (Donelly, 1994).
chronic diseases need more knowledge and support
Parents of children with a chronic disease have to
than parents of healthy children. According to this
adjust to an unpredictable lifestyle (Donelly, 1994).
study, parents who failed to adapt to the situation felt
According to Englund et al. (2001) parents of children
that they received poor support from their relatives
with asthma reported feelings of sadness, anxiety and
and little support from the healthcare staff.
powerlessness. Conversely, they also reported feelings
Coping is the process by which people attempt to
manage the discrepancy between demands and avail-
able resources. This process can be a response to a
Correspondence address: Anne Trollvik, Jessnesveien 189, N-2320
Furnes, Norway. Email: Anne.Trollvik@hse.hihm.no stressful event appraised as a threat, challenge or dan-
Received 11 July 2003; accepted 9 September 2003. ger (Lazarus, 1993). One function of the coping process
94
is to reduce stress by finding solutions to the problem.
Several studies have attempted to identify parental
strategies. Dellve et al. (2000) found, in a qualitative
interview study, six different parental coping strategies;
problem-solving, avoiding-assuring, reducing, relying
on self, complying and enduring. The core category of
the study was chaos in caring, which described the
stress involved in caring for a child with asthma. A
study by Jerret and Costello (1996) revealed that par-
ents of children with asthma were expected to make
family life changes and that the incorporation of
asthma management was a gradual process. Gaining
control was one of the basic social processes. McCarthy
et al. (2002) reported that an empowering approach to
asthma education made significant differences to sense
of control, ability to make decisions and ability to pro-
vide care for parents of children with asthma.
To develop an educational program for parents, it is
necessary to be aware of the parents’ needs and how
they solve their problems and their coping strategies. It
is also vital to know how the nurse or the healthcare
professional encounters the parents. In addition, the
nurse needs to have knowledge of the families’ percep-
tions, their needs and concerns as well as their coping
strategies. The families can thereby be appropriately
educated and supported (Kurnat & Moore, 1999). The
aim of this qualitative study was to describe nine par-
ents’ everyday experiences of living with a child suffer-
ing from asthma. An additional aim was to illuminate
the parents’ experiences of encounters with healthcare
professionals.
METHODS
The study design was exploratory and descriptive using
the qualitative research interview method (Kvale,
1983, 1997). This design was chosen to study the life-
world of the parents, to explore their inside perspective
and everyday experiences of living with a child with
asthma. The phenomenological description and the
hermeneutical interpretation approach were used to
gain an understanding of the parents’ life-world. The
phenomenological approach seeks to describe phe-
nomena by means of human experiences, such as feel-
ings and meanings in life. By using this approach, the
researcher obtains an enhanced view of the inner
thoughts and meanings of the persons interviewed.
Hermeneutics was used for interpretation and under-
standing. It seeks to understand human beings as cul-
tural beings, comprising body, soul and spirit in
interaction with the environment (Kvale, 1983, 1997;
Hummelvoll & Barbosa da Silva, 1998).
The Asthma Education Program (AEP) was set up
in 1995 to meet the needs of the parents of children
A. Trollvik and E. Severinsson
suffering from asthma. The program was multidisci-
plinary, lasted 6 hours and was held at a county hospital
in eastern Norway. The educational content comprised
information about the disease, treatment, use of inha-
lation therapy, indoor environment, asthma triggers,
early signs of exacerbation, physical exercise, network-
ing, and social rights. One of the lessons was given by a
peer; a parent whose child was suffering from asthma
or a person with asthma. The parents could discuss
their situation with other parents during the course and
ask questions to the healthcare professional. During
the day, the course moved from a monologue to a dia-
logue. There were on average 15 participants on each
AEP day. Both parents were invited, although the chil-
dren were not present. The parents attending the one-
day AEP course did not lose their salary. Over a 3-year
period, a total of 172 families participated in the AEP.
Subjects
The study sample consisted of nine parents of five chil-
dren with moderate to severe asthma in the 2–6 years
age group. The sample was selected strategically from
the group of parents (N = 172) with children suffering
from asthma, who had participated in the AEP. Parents
were purposefully selected based on diversity for the
study by a nurse specialist. There were four couples
and one single parent. The parents had different back-
grounds and were strategically selected; short/long
time since participating in the AEP, rural/non-rural
area, other children (siblings) with or without asthma,
and different occupational backgrounds. All parents
who were asked agreed to participate in the study.
Data collection
Seven parents were interviewed at their homes and
two at the hospital, in accordance with their wishes.
The interviews lasted 1–1.5 h and were audio-taped
and transcribed verbatim. Interviews and transcrip-
tions were made by the first author (AT). The inter-
viewer did not participate in the AEP. The qualitative
research interview was semistructured, that is, neither
a free conversation nor a highly structured question-
naire. It was conducted by means of an interview
guide that focused on certain themes (Kvale, 1983,
1997; Hummelvoll & Barbosa da Silva, 1998). The
interview started by questioning the parents about
their experiences of having a child with asthma. The
parents were asked to describe their experiences of
the deterioration in their child’s condition due to
asthma. They were also asked to give examples of epi-
sodes and how they handled these situations. The
interviews had an open form; the researchers wanted
Parents’ experiences of asthma
the parents to narrate as openly as possible about the
everyday family situation.
Data analyses
The researchers used different steps in description and
interpretation and started with a phenomenological
content analysis. The first step is called self-
understanding which means that a concrete phenome-
nological description of the phenomena is made.
Epoché (Hummelvoll & Barbosa da Silva, 1998) was
used and permitted an open and naïve encounter with
the phenomenon. The following statement from one of
the parents explains the first step; ’The physician told
me I was hysterical’, which tells the researcher about
the phenomenon of being in chaos.
The second step was to read the interviews several
times to achieve a sense of the whole. This is termed
the common sense understanding level, which aims to
achieve a broader context of knowledge. The investi-
gator read the text to understand how the parents
reported the phenomenon. Statements such as ‘We met
a physician who knew nothing about asthma and didn’t
listen to us parents’ explains the inside perspective,
which can be understood as the same theme. The dif-
ferent themes were identified and transformed into
meaningful units and then coded into themes and
subthemes.
The third step was theoretical understanding, which
emphasizes the hermeneutical deep understanding
and meaning, with the use of the hermeneutic circle,
between the whole and the parts and vice versa; one
needs to understand the parts in order to grasp the
whole, and the whole to grasp the parts (Kvale, 1983,
1997; Hummelvoll & Barbosa da Silva, 1998). The
parts are parents’ inside perspective of suffering and
the meaning of their situation, while the whole takes
into account all the parents’ narratives and compares
them with theories described in the literature or the
researcher’s understanding of his/her professional
life-world.
The Norwegian Regional Ethics Committee
approved the studies. All information was treated
confidentially and anonymously. All parents gave
informed written consent before being interviewed.
FINDINGS
Theme 1: Feelings of uncertainty, helplessness
and guilt
Parents reported several episodes of being afraid of
what could happen if their child was unable to breathe
properly. The child might wake up in the middle of the
95
night, and the parents would sit at the bedside not
knowing what to do. They described feelings of uncer-
tainty, helplessness and being alone. They reported
their fears that the child would die in their arms. These
feelings were strong at the onset of their child’s illness,
and parents described how these feelings returned
every time the child became seriously ill. They had to
make decisions about the child’s health but they did
not know how to do so. In acute situations they were
afraid and developed stress reactions. As a result, it
became even more difficult to know exactly what to do.
Parents felt that they did not know how to cope with an
asthma attack and consequently felt insecure and vul-
nerable. They considered it important to discuss these
feelings and thoughts with other parents or healthcare
professionals. The father of a child with asthma stated:
I was never at ease with my son’s illness, and I’m
still not. I think it is frightening, and I believe
it is important to get an answer to all my
questions . . . I have never slept well since my
son’s first asthma attack . . . I wake up at the drop
of a needle . . . I felt so anxious about him when he
developed asthma, I was afraid that he would not
survive an attack. It was awful, I felt like this every
time he had a severe attack . . . Those times I
remember as a nightmare. The first time he had a
severe attack it was terrible, I get a pain in my
stomach when I think about it. I try to forget it.
Some parents reported seeking a deeper under-
standing of why their child became ill. During the
interview, the researcher noticed sorrow in the parents’
face when they expressed thoughts about possible
causes of the child’s illness. It was difficult for some of
the parents to express the feeling of guilt, especially the
more subtle form of guilt, which found expression in
the form of questions, such as: Is it our fault? Should
we have done something different in our child’s life?
When the parents reflected on their situation, they
sometimes regretted things they had done at an earlier
stage in life. One mother stated:
I was shocked when my child took ill. I was so sad
because I myself suffer from allergies. I found it so
depressing that she developed the same disease.
It’s fine that they can inherit money or houses
from us, but not the bad things like illness.
Another family member reported that they lived in a
polluted industrial area when the child was very young.
When the child became ill, they moved to another area.
Later on they often reflected on whether or not the
child would have been healthier if they had moved
sooner. Some of the advice given to parents by health-
care professionals can burden the parents, as one
96
mother said; ‘If I had cleaned the house properly she
would not have become ill’. Thus, she blamed herself.
Theme 2: Need for support and help from
healthcare professionals
When living with a child with asthma, there are various
instances when the parents have to contact healthcare
professionals, such as for diagnosis, acute situations,
treatment or for controlling the illness. For a number of
children, asthma is not a clearly defined illness. The
symptoms are diffuse and there is no simple test avail-
able for establishing the diagnosis. At the onset of the
illness, parents revealed that they had been to the acute
clinic several times without receiving help. A mother
was informed on several occasions that she was hyster-
ical about her child, as the physician who assessed the
child could find no signs of illness, although the mother
stated that the child was unable to function like other
children of the same age. Much later the child was
diagnosed as suffering from asthma. The mother
reported:
We saw the physician he examined her, but could
find nothing wrong. We were sent home and he
told me I was hysterical because I argued too
much. I consider it wrong that my daughter, who
was 2-years-old at the time, cried because she
longed to play with other children, something she
was unable to do. I felt something was wrong, as
she often had a high temperature and was always
tired. However, the physician did not believe me.
Some parents reported a lack of respect on the part
of healthcare professionals, who trusted neither in the
parents’ competence as parents or their assessment of
the situation. When the child’s condition deteriorated
and emergency treatment was required, the physician
did not believe the parent’s assessment of the situation.
They reported that the physician did not take the time
to listen to them and that he/she prescribed a treatment
that had previously failed to help their child. This
meant that it took longer for the child to recover.
After a while, parents no longer had any trust in the
healthcare professionals. The following describes a
father’s experience of an encounter with a healthcare
professional:
We were advised to call the hospital when our
child started wheezing. There [in the emergency
unit] we met a physician who knew nothing about
asthma and didn’t listen to us parents. After that
I lost my respect for physicians. We know more
about our child than a physician who meets him
once a year.
A. Trollvik and E. Severinsson
Theme 3: Adaptation to everyday life
The child’s illness represents a turning point in the fam-
ily’s life. Parents reported a change in their life per-
spective. When one family member falls ill, their plans
often change. The family often do less than they have
planned, because the child’s condition requires a great
deal of time and attention. It takes time to administer
the various medications, to plan all activities that some-
times differ from what other families can do, such as
avoiding allergens. One family had a farm but decided
to sell it because the child was allergic to animals and
became more ill there. A mother reported that she was
unable to work for many years due to her child’s
chronic illness. She found it too demanding to work
and take care of her child at the same time. She subse-
quently lost her job and has never returned. Because
asthma is hereditary, there are families in which all
members have the illness. A mother described their
everyday lives in relation to family planning:
We had planned to have another child, a baby, but
we are so afraid of having another child with
asthma. I do not want to go through the same suf-
fering again, now when our child is better able
to cope. Therefore we will not have any more
children.
The experience of living with asthma is not always
shared by family and friends. Parents reported that it
was not easy to keep one’s friends. As time passed it
became more difficult to discuss the same problems
with one’s friends over and over again. For example,
the need for a good indoor environment, which means
having to ask friends to refrain from smoking and to
remove all animals and flowers from their home when
the child is present. Instead, the families kept the
problems inside the family. However, some parents
reported that they sometimes overemphasized the
restrictions and regulations on their child. In addition,
they expressed a feeling of shame about subjecting
their child to so many restrictions and regulations.
Theme 4: Development of coping strategies
Subtheme: Trying out
When parents use the trying out strategy, they learn
new things about managing their child’s asthma. They
can try out medicine or treatment, what they should
avoid or can participate in, or what the child is able to
manage in terms of allergens. One family reported the
following situation. Their daughter was invited to visit
a family with a cat. As she was slightly allergic to cats,
the physician had advised that she should avoid them,
Parents’ experiences of asthma
but this visit was important because it was an opportu-
nity to meet another girl and hopefully become her
friend. Her mother gave her antihistamine medication
before leaving home and the girl fortunately did not
become ill during her visit. Instead, the two girls played
happily together for the whole day. If these children
avoid everyday situations, it is not possible for them
to have a normal social life or even a normal life.
A mother related the following about trying out
medicine:
We have learnt something important; to try out
medicine. We had to carry our daughter in a ruck-
sack when walking in the mountains. We were not
in the habit of giving her medicine before walking.
One day we gave her medicine before we went to
the mountains. She walked in front of us. The day
after, we did not give her any medicine and we had
to carry her. The third day we gave her the medi-
cine again, she ran in front of us.
After the child has experienced a situation like this,
she grows more confident and likes to try out new
things.
Subtheme: Seeking information
Seeking information is a strategy somewhat similar
to that of trying out. Both strategies require active
parents. One needs knowledge to use the trying out
strategy. As an illness, asthma is not simple and
straightforward, that is, parents and children must try
out several strategies which vary from child to child,
depending on the child’s condition and type of allergy
and whether the child has moderate or severe asthma.
Even healthcare professionals have different opinions
and parents reported that they received insufficient
information from them. This prompted parents to seek
information about the disease themselves. Some par-
ents sought all the information they could obtain. ‘I
need to get an answer to all my stupid questions’, said
one father. They read books and pamphlets and asked
questions whenever they met healthcare professionals
or other parents. Although it was difficult to focus on
exactly what they needed to know, the information was
vital to enable them to learn how to manage asthma on
a day-to-day basis. One mother expressed why she
sought so much information: ‘I want to do everything
for my daughter and her illness’.
Methodological consideration
In qualitative research, intersubjectivity is a consensus
regarding how one has succeeded in the formulation
of a given description. There must be a basic mutual
97
understanding between the interviewer and the person
investigated (Kvale, 1983, 1997). Intersubjective vali-
dation was made throughout the interviews. After the
parents had provided their narratives about certain
themes, the investigator presented her understanding
of the same themes. Validation was ensured by two
researchers who analyzed two of the interviews, in
which they both highlighted the phenomena focused
on. A discussion with nurses working at an asthma
clinic took place at the end of the analysis and can be
treated as pragmatic validation (Kvale, 1997).
DISCUSSION
The aim of the present study was to describe the expe-
riences of nine parents who live on a daily basis with a
child with asthma. An additional aim was to illuminate
the parents’ experiences of encounters with healthcare
professionals. Data were collected by qualitative
research interviews with the parents and phenomeno-
logical content analysis was used. Four main themes
emerged: (i) feelings of uncertainty, helplessness and
guilt; (ii) the need for support and help from health-
care professionals; (iii) adaptation to everyday life and;
(iv) the development of coping strategies. In addition,
two subthemes; trying out and seeking information,
emerged. The findings show that parents of children
with asthma have to live with uncertainty in their daily
lives. Other researchers have found the same phenom-
enon (MacDonald, 1996; Dellve et al., 2000; Englund
et al., 2001). The theme of uncertainty which emerged
from the data is not unique to families with asthma.
This phenomenon has also been seen in parents of chil-
dren with various chronic diseases (Cohen, 1995; Gib-
son, 1995). These feelings are especially strong at the
onset of the child’s illness, but for many parents these
feelings recur every time the child suffers a new attack.
Uncertainty has been defined as a cognitive state that
occurs in situations in which the decision maker is
unable to assign definite values to events or subjects or
to accurately predict an outcome (Mishel, 1983).
The experience of feeling guilt when having a child
with a chronic condition has been described previously
(McCollum, 1981; Johnston & Marder, 1994). Parents
with a subtle form of guilt can be less open about their
guilt because they are embarrassed about these feel-
ings. When feelings of uncertainty and guilt persist for
a prolonged time, the parents react to the child’s situ-
ation in a destructive manner. They can develop a long-
term stress reaction that can destroy healthy primary
judgment of the situation (Lazarus & Folkman, 1984).
When a stress reaction persists, strain in the form of
anxiety, depression and helplessness occurs. As a con-
sequence, parents consider the situation to be more
98
serious than it is. Minor episodes can be interpreted as
more severe when parents are unsure and under stress.
Parents may be unable to master the situation in a con-
structive manner. Thus, it is important for healthcare
professionals to discuss these feelings with parents and
to be aware of this important issue when they meet the
families. They should allow the parents to talk about
the situations they have experienced with the child and
ask questions in an open way. Healthcare profession-
als’ attitude towards parents may signal that they lack
the time or interest to listen to what they have to say. In
such cases, the parents dare not raise topics such as
feelings of uncertainty, guilt or helplessness.
This study indicates that there is a conflict between
how healthcare professionals view the disease from an
outside perspective and how the parents view the ill-
ness from an inside perspective. The findings show that
parents are worried because they feel that they are not
respected and believed by healthcare professionals.
However, healthcare professionals view the disease
from a clinical and scientific point of view. They recog-
nize symptoms or signs, which they range systemati-
cally into a diagnosis, such as breathing problems or
bronchial inflammation. Parents view the illness from
another perspective. They report that the child is tired
and cannot play with his/her friends and has to stay at
home instead of going to school. Toombs (1992) found
that the differences in perspective between physician
and patient are more serious than is generally recog-
nized. The author argues that the patient’s experience
must be taken into account because the lived experi-
ence represents the reality of the patient’s illness and
thus this experience should not be underestimated.
Only by understanding what keeps them apart can the
physician and parents take real steps to build bridges
between their separate worlds. These two perspectives
are confronted in the encounter between healthcare
professionals and parents. Healthcare professionals
have a duty to approach the inside perspective. To do
so, they have to be open-minded and recognize that
the parents’ perspective exists. According to Toombs
(1992), clinical narrative, empathic understanding and
explicit focus on the life-world interpretation of illness
can lead to successful communication between health-
care professionals and parents.
Parents reported a change in their life perspectives.
Asthma is a chronic illness that has a significant influ-
ence on family life (Clements et al., 1990; Johnstone &
Marder, 1994; Ladebauche, 1997; Gallo & Knafl, 1998;
Cohen, 1999). Most people have a ‘life project’, but
when one family member becomes ill these plans often
have to be changed. The parents change from seeing
themselves as normal to seeing themselves as different.
Changing from being a healthy family to becoming
A. Trollvik and E. Severinsson
a chronically ill family means a profound change in
how the family members think and view themselves.
According to Canam (1993), parents’ abilities to
express their feelings are connected with good adapta-
tion. If parents are able to identify and express their
feelings, they can help their child to do likewise. Cop-
ing with such emotions requires finding supportive
individuals with whom parents can talk to about their
concerns, that is, other parents or family members.
There is a connection between coping and the ability to
express one’s feelings.
Parents expressed that they dared to try out medica-
tions or restrictions for the child if they obtained some
support from other parents or healthcare professionals.
When learning by trial and error (trying out), one
internalizes experiences, thus making it easier to gain
control. A study by Jerret and Costello (1996) revealed
that parents of children with asthma adjusted to their
children’s illness and, as a result, gained control over
time. One of the phases in this process was the trying
out strategy. By using this strategy, the parents learnt
what was effective and what was not by trial and error.
Jerret and Costello (1996) described this strategy as a
central activity for all parents because it involves a
great deal of learning. Trying out is a major theme in
our study and supports the findings of Jerret and Cos-
tello (1996) who identified several control strategies.
Trying out is an approach that can be used among a
group of parents to learn new patterns of behavior.
Bandura (1986) stated that the most influential obser-
vational role model includes peers, that is, in this case
other parents with children suffering from asthma.
When parents learn what other parents have achieved
by trying out, it is easier for them to try out strategies
for themselves. Englund et al. (2001) found that fathers
were more liberating and mothers more restrictive in
the way they treated their child. Fathers believed in the
child’s ability to master the situation and trusted other
people in the child’s surroundings. Mothers were more
protective and constantly waited for an incident to
occur. Further studies should concentrate on the con-
sequence for the child of living a liberating or a
restricted life. When the parents discuss such situations
together, they reflect on and make comparisons with
other parents and families. They become more confi-
dent about trying out strategies in new situations. Con-
sequently, both parents and children become more
confident and secure in their daily lives.
The main findings from the present study illustrate
that parents of children with asthma feel uncertain
about how to handle their child’s illness. Feelings of
helplessness and guilt, adapting to everyday life and
developing coping strategies are daily experiences for
these parents. Trying out has been found to be an
Parents’ experiences of asthma
important strategy for helping parents to manage the
illness. This study has contributed to an increased
knowledge of parents of children suffering from
asthma. Healthcare professionals can only meet the
parents’ needs by listening to their thoughts and ques-
tions. The present study emphasizes the importance of
a mutual dialogue and a good relationship between
healthcare professionals and parents to enable the
parents to develop more competence in caring for
their child.
ACKNOWLEDGMENTS
The authors would like to thank the parents for partic-
ipating in this study and Hedmark Central Hospital
and Hedmark University College, who supported the
study. We would also like to thank Gullvi Nilsson for
reviewing the English.
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