Kristi Kiilu
Päivi Kauppila
Pilvi Kula
Karmen Lai
Airi Kukk
Tiiu Tammemäe
I
Family
and Child
Development
The theme of this section captures a range of research topics related
to family and child development, values and contexts in contemporary
Estonia and also the problems of transition from pre-school to primary
school. The authors in this section grapple with the tough issues of cultural size and proportion and how research, perhaps their own research,
can lead to improved practices and policy.
Mothering and Everyday Life
Chapter 1
Mothering and Everyday Life with a Chronically Ill
Child
Päivi Kauppila
University of Joensuu, Finland
[email protected]
Abstract
The purpose of this study is to illuminate the experiences and practices mothers have in everyday life and
parenthood with an asthmatic child. The specific context under investigation in the research is the Finnish
service system for the family life. To build their everyday lives, families use the resources available in society. The system for support and control of family life has become strongly professionalized and is often the
task of specialized experts and knowledge. When a child is suffering a long-term illness, like asthma, the
service system of the welfare state becomes a crucial part of everyday life. The qualitative data for this study
consist of stories written by mothers (n=101), interviews and observations of the families and professionals
in the welfare state’s system of service. This article describes the relationship between the family’s private
everyday life and the public service system of the welfare state. The study works as a channel for mothers
to tell about their experiences and to become heard.
Childhood Asthma is the most common long-term illness in childhood in Finland. About four to
five percent of children suffer from asthma, and an additional five percent have asthma-related
symptoms when they have respiration infections (Backman, 2004; Astmaohjelma 1994-2004;
Valovirta, 2000). Treatment of asthma is based on medication, avoiding irritants, and exercise
(Puolanne & Tikkanen, 2000; Sorva, 1998). The aims of asthma treatment include no asthma
attacks that need hospital treatment, close to normal functioning of the lungs, child able to take
part in play and games, sports and hobbies like other children of the same age, no absence from
school because of asthma, treatment not too demanding or limiting, no side-effects from medication and realistic attitude towards avoiding irritants (Backman, 2004; Reijonen et al., 2001).
Asthma is a disease where the main challenges are combined with managing in every-day life.
To treat asthma demands that families have certain skills to manage many medical procedures
at home (Jokinen, 1999, p. 39; Aalto & Kauppinen, 2000). When an illness is considered in a
broader sense than mere sickness, it contains not only medical aspects but also social and psychological impacts (Seppälä, 1998, p. 6). A long-term illness in a family affects all family members
(Robinson, 1998).
Theoretical Framework
When a child falls ill with a long-term illness, it is a challenge for the parents to change their everyday life. Everyday life has often been determined by routines. (Tedre, 1999a, pp. 45-46; Salmi
& Kivimäki, 1997; Salmi, 2004, pp. 17-19). Routines are learned by doing, and doing gradually
supports the code. With the help of routines, time can be saved and thoughts released for other
tasks and matters. A child’s illness confuses a family’s accustomed routines, but routines are also
an important method for getting along in a new life situation. Denham (2002, p. 60) considers
routines to be important for family health, especially when stress or change are encountered, be13
Päivi Kauppila
cause when needed, routines are modified again and new routines can also be recreated. Routine
behaviours of multiple-member households especially have potential for assessment of concerns
about health and illness.
Family members construct their own personalized contexts. They construct them in relation
to society around them, to its structures, possibilities and conditions. Everyday life can be seen as
a complete process where people change the conditions of their lives to their new existing everyday life. Simultaneously, people’s ways of handling those conditions of everyday life actualize
new rules and routines, creating continuity and mutability. Everyday life is not a frame for what
people do, but is constructed by the living of it. Maintaining the frequency of everyday life can
be found as a support structure. (Bech-Jørgensen, 1991, p. 150; Korvela, 2003, p. 145; Salmi,
2004, p. 23).
David Morgan (1996; 1999) uses the concept of family practice to conceptualize phenomena related to the family. Family is not a permanent construction but rather a number of several
changing relations. Family practices are active and continuously construct the family. These family practices also appear in everyday life, in the routines of everyday life and in its manners.
Family practices are a result of the relationship between an individual life course and a wider
historical and societal frame. Salmi (2004, p. 25) as well Jokinen (2003, pp. 5, 12) remind us
that practices also carry a gender. They imply presumptions for characteristics and proprieties of
women and men and also differences between men and women.
In this study, family practices were viewed in the context of the Finnish welfare state. In
relation to the society, families and family members construct their own family practices through
their lived experiences. In our society, there are certain modified practices for everyday life and
parenthood, for instance, in work life, child care and domestic work. When a child is suffering
from asthma, this it creates a special context for a family to construct its own family practice that,
together with other family practices, constructs the family concerned. Different family practices
are actualized precisely in everyday life, in its routines and customs.
Welfare State: the Modern Frame of Everyday Life
In the Nordic countries, the welfare state is often considered to be an emancipator project in which
the aim has been to create an equal and just society. The role of the state is to make it possible
for both men and women to work equally, to equalize differences in income, to prevent poverty,
and to provide welfare services, especially health services, to all citizens. In Finland, education,
health care and social services are mostly financed, realized and supervised by the public sector
(the state and the municipalities); the other actors play a more complementary role. Solutions are
made uniform and cover all citizens. (Anttonen & Sipilä, 2000, pp. 12-14; Ritakallio, 1994).
The school and child-welfare systems were already organized at the end of the 19th century.
The system of benefit and service for supporting the family and motherhood was developed on
the eve of and right after the Winter War. For instance, the maternity benefit system started in
1937, and the system of maternity and child welfare clinic began in 1944. The welfare state has
been built by degrees since the 1940´s -1950´s, and the frameworks for modern childhood, such
as day-care, were finished in the 1980´s and 1990´s. (Bardy, 2002, p. 21; Helsti, 2003, p. 61).
In the 1960´s, mothers increasingly became involved in paid work. The whole society was in
transition because of industrialism and widespread migration. (Kolehmainen, 2004, p. 90; Vuori,
2004, pp. 32-33). The responsibility for children, home and organization of family life was divided mainly between women and the welfare state. Kindergartens, home day-care, schools and
clubs, and their female professionals became important in sharing the responsibility for bringing
up children. This did not, of course, mean that fathers were not required to take part more or start
to share the responsibility equally. The welfare state enabled women to combine paid work and
14
Mothering and Everyday Life
motherhood by offering parental leaves, services and workplaces for women. (Julkunen, 1994,
pp. 195-198; Rantalaiho, 1994, p. 24; Vuori, 2004, p. 36). Thus, for women, care has been both a
profession and paid work, but because women are users of these services, it has also been important social policy (Tedre, 1999a, pp. 19-24).
The 1990´s can be considered the turning point in the growth of the Nordic welfare state.
The economic crisis was a clear watershed, especially in Finland. Finance, employment and social policy needed to be put into practice under new circumstances (Kautto, Parpo & Uusitalo,
2002). The political line also changed. Equalization of differences in citizens’ income and full
employment are no longer as important societal aims as before. The more important societal aim
is now to activate individuals to participate in work life rather than to ensure societal equality.
(Törrönen, 2001, p. 7). With globalization, Finland has become more involved in international
finance. The production structure is based predominantly on high technology. Success in competition has become our new national doctrine. (Bardy, 2002; Eskelinen & Kinnunen, 2001, p. 11).
In the 1990´s the frames for families´ everyday life became more difficult in many ways. Many
benefits and services were cut. For instance, in 1994, family political tax allowances, child care,
child and single-parent allowances were abolished. Parents´ tempo in work life accelerated, and
it became harder to balance work and family life. (Bardy, 2002; Hiilamo, 2002).
Research Methodology
The research was based on being in the field with families and professionals. Action research is
an instrument for trying to understand social reality so that it can be changed for the better. The
process of action research can be seen as a progressive spiral in which action and thinking are
joined together consecutively in cycles of planning, in observation, in reflection and in preplanning. (Heikkinen & Jyrkämä, 1999). In this study, attempting to understand the social reality of
families meant going into the field and working with asthmatic children, their families and the
professionals. I worked as a project coordinator for three years in the Pulmonary Disease Association Heli. To be able to plan support for the families, I needed to find out what childhood
asthma means in the everyday life of the families and in the work of professionals. My role as
researcher and project coordinator was to be an outsider who could, with the help of the outsider’s view, examine the situation in a broader perspective and differently from the view of other
participants (see Kauppila, 2001). So in my research there was also an aspect of ethnographic
research. This type of research method can be called societal ethnography (Tedre, 1999b, p. 114).
An ethnographer takes part, openly or secretly, in people’s everyday lives over a certain period of
time, watching what is going on, listening to what is said, and asking questions (Hammersley &
Atkinson, 1983). An ethnographer studies routines in people’s everyday life (Fetterman, 1998).
In ethnography, ideas are formed that help us to understand people’s behaviour from their own
viewpoint (Peggy, 1988, p. 35).
When working with the families, I also collected stories written by the mothers (n=101)
about their everyday life experiences with an asthmatic child. These written stories are the primary data in this study. The written stories were analyzed in close relation to the understanding
attained in the field in ethnographic observations, interviews and conversations with the families
and the professionals. An important method for appropriating data has been to find principal
themes. I have read the data from the theoretic methodological perspective to see what is told
about a child’s asthma, everyday life and parenthood. In this research, mothers narrate their feelings, experiences and reflections, and at the same time they reveal how the child’s illness, everyday life, and parenthood are constructed in Finnish culture and in the context of the welfare
state (Honkonen, 1993; Katvala, 2001; Mead, 1983). Mothers construct the reality in interaction
with themselves, their own motherhood, significant others like their partner and the child and
15
Päivi Kauppila
professionals of the service system of the welfare state. Mothers relate stories about different
experiences and practices where the everyday life and parenthood of the family with ill children
are constructed.
Findings Before and After the Diagnosis
In mothers´ written stories, everyday life is constructed about the time before and after the diagnosis. The time before the exact disease is known as uncertain and difficult, as the routines of
everyday life are disturbed. Mothers want to tell about that experience even after several years.
Stressful disorders of everyday life before the diagnosis, like nights with little sleep, help maintain the memory. Mothers should also maintain everyday life with the child, with the child’s
siblings, and with their partner, and they must also manage their work life obligations. As one
mother explains it:
Nights were pure hell, nobody was able to sleep. The child was crying about feeling ill (two
years); in the health centre we did not get any help, in the daytime the feeling was good. Help
came when the child vomited slime in the hallway of the health centre and in the pharmacy.
Our child was able to eat hardly anything and if she ate, she vomited everything. Life was
chaos, and the sleeping rhythm is still mixed up (after 2,5 years). (No. 42)
In studies about a child’s long-term illness as a progressing process, it has also been found that
parents divide their lives into the time before and after diagnosis. (Horner, 1998; Jokinen, 1999;
MacDonald, 1995) This kind of situation, where the child has symptoms but medical diagnosis is
lacking, life itself is felt to be uncertain. Treatment and relief of the symptoms may be sought for
years. The health care system does not note the experiences of illness, because there is no obvious
evidence of the child’s health; the child is a so-called ´mid-term patient´. The parents’ voice is not
heard in the health service when parents describe the child’s symptoms and demand more specific
examinations. One part of the story can be the rush in the emergency unit of the health care centre,
different doctors and difficulties in diagnosing childhood asthma. A doctor may consider a situation
to be a normal respiration infection, when for a family it is a continuous illness and one infection
after another, in addition to other symptoms. The family has a long history of their child’s illness
behind them, but for the doctor, the meeting with the family and this child may be the first.
Parents, and especially mothers, have knowledge and expertise about their own child and
his/her feelings and health. A relative or the ill person him/herself may have important expertise,
but it is not expressed in a professional way. The relative’s strange, and not easily understandable,
manner of expression can be the obstacle to hearing the parent in health care. (Kangas, 2003, p.
84). It has been found that, based on with increased education, easily obtainable health care, and
better economic resources, parents add an active consumer’s touch to the process of diagnosis.
These experiences seem to lead to a new more open and dynamic connection between a layman
and modern medicine. (Lillrank, 1998, p. 79). Parents do not necessarily settle for the answer one
doctor has given but also think of other possibilities, like visiting a private doctor. Ferguson and
Ferguson (1987) call this process of visiting one doctor after another to get a definite diagnosis
´doctor shopping.´
There are also other types of stories about diagnosis than mere delayed diagnosis. For some
families the diagnosis was like a crash after the first symptoms. No matter how quick or slow the
process of diagnosis was, strong feelings resulted, including surprise, disbelief, disappointment,
fear, sorrow and shock or relief. Such reactions are recalled for a long time. (Jokinen, 1999, pp.
66-67; Kirsi, 2003, p. 241; Lillrank, 1998, p. 93; Seppälä, 2000, p. 171). With diagnosis, a reason
is found for a child’s symptoms. In most cases the diagnosis and substantial help from medication
16
Mothering and Everyday Life
calm the child and the parents. But uncertainty and insecurity are also present after the diagnosis.
They are features of long-term illness, and seldom is it known how a disease is going to progress
in the future (see Jokinen, 1999, p. 25; Utriainen & Honkasalo, 2004, p. 41; Whyte, 1997). As
one mother explains it:
…when I was pregnant again, the first child was diagnosed with asthma. The word ´asthma´
was totally new. Into my mind came only the memory of one woman in my home village,
who was sitting on a bench in summer time and coughed and wheezed. It was May and I
was tired, the child was ill and tired. Then I felt that I am exhausted. How to get on, it was
the only thing on my mind. It was like a wall front of us, what will this bring, how will we
manage. (No. 20)
When a child has fallen ill with a long-term illness, belief in control of one’s own life has to be
re-evaluated, and the model of continuity and hope disappears. The dream child is lost, and one’s
idea about oneself as a mother needs to be reconstructed. Worry about the child’s health and future tend to threaten conscious identity and continuity of life. (Giddens, 1991, pp. 45, 52-54). At
this point the child’s illness and its meaning could be discussed as a critical event in the mothers´
life-course (Honkasalo, 2004, p. 75). The mothers´ reflections about the time before and after
asthma in the data also argue for that interpretation.
Findings Regarding the New Order of Everyday Life
After diagnosis, the new order of everyday life begins according to the treatment instructions
given by the specialists. The service system of the welfare state, with its many professionals,
is powerfully present both in the concrete instructions given for how to take care of the child’s
illness and in the use of social and health services. Giddens (1991) states that it is characteristic
for modern societies to trust experts, who master the knowledge outside an individual’s own life
sphere. Mothers try to carry out the holy trinity of asthma treatment: medication, avoiding irritants and exercise. These are the new routines and compromises of everyday life. When dealing
with a child’s illness, mothers feel it is their responsibility to take care of their own child’s sickness as well as possible; simultaneously they maintain one of the social and cultural rules of good
parenting: taking good care of one’s child. (Kangas, 2003, p. 74; Katvala, 2001; Lillrank, 1998,
p. 68; Siponen, 1999). Here is how one mother puts it:
The medication needs to be taken every morning and evening. The medication must always
be taken along, and it needs to be taken before exercise. The home must be kept clean and
tidy. There can’t be dust. We can’t have any pets, no house plants; in the furnishings we need
to check that the materials are not dusty. In the spring we can’t open the windows because of
the pollen. Visits to friends who have pets must decrease. (No. 5)
Mothers also worry about their child’s exercise or, more often, lack of exercising. Vivacity and
exercise are considered to be natural, a sign of the child’s good health (Salo, 2000). Especially
with boys, worrying is commonplace, because not doing exercise can mean staying out of the
group of boys, even marginalization. A child’s loneliness, seemingly passive behaviour, and too
home-centred life is not desirable. A mother questions her own success in such situations. Children’s interests have been valued as an essential method in good upbringing (Harinen, 2001, pp.
86-87; Hoikkala, 1993). A possibility to have hobbies is one indicator of good parenthood, but
it can also come out in a negative way if the child does not take an interest in anything. As one
mother informs us:
17
Päivi Kauppila
He has too few sport activities. My son is sometimes really tired, even feels that three kilometres to school by bicycle is too exhausting… He tried to go in for football, but he could
not run and thus stopped. (No. 100)
In their stories mothers also tell about their feelings, especially about guilt in relation to the
child’s illness.
I always blame myself. What did I do wrong when I was pregnant? Or what have I done
wrong later when treating the child? Why has this happened to me? How shall we manage
in the future? When the child started school, it was a real stress for us both, for me and for
the child, and her illness got worse. I was really worried. I just wish that the illness would
ease. Now the child is in good condition, although the bad periods still come unexpectedly.
The mother as well the child learns about asthma with time. But I still lack the information
and the support. (No. 41)
Many studies indicate that close relatives, especially mothers, are worried about their own part in
the origin of the family member’s illness and that parents with a long-term ill child feel incompetent and uncertain about their child’s upbringing because they have problems combining the treatment of illness and the family’s daily life (Hentinen & Kyngäs, 1995; Jähi, 2003, p. 194; Jokinen,
1999, p. 32; Lillrank, 1998, p. 68; Whyte, 1997). Mothers´ stories emphasized the challenge of
everyday life, and at the same time they aimed to reach a position that could be felt as normal.
When the treatment of asthma starts to progress and becomes a routine, everyday life again
starts to turn into the family’s own normal everyday life, the new state of normality. In the normalization process, treatment and special needs of the ill child are included in the daily routines
(Bossert et al., 1990; Deatrick et al., 1999; Gjengedal et al., 2003; Rehm & Franck, 2000, p. 71).
As different mothers observe:
If we do not have a cough or infection, we live quite normally, we do not remember the
asthma. (No 98)
I have been afraid of how our child will manage in her life, how will we parents manage?
With the first child these feelings were oppressing when we did not know how life with an
asthmatic child is. Now with the third one, this is ok. (No. 9)
But even if the visible influences of the illness are mild, consciousness of the illness is always
present. And there are situations, like visits to friends or relatives, or when a child starts day care,
that remind the mother of the child’s difference or exceptionality. Ideas about self and one’s own
family’s normality need to be defined again compared to others. As one mother recounts the
frustration:
‘Oh it can’t be that hard. Mother’s tasks can’t be that oppressive, because you have only two
under-school-age children,’ other people say. But they don’t count how much extra work
needs to done because of asthma and allergies. They think that dog or cat hair can’t affect
anybody’s breathing. Or they do not understand that my children are permanently ill. They
just say that all children sometimes have flu, and they offer all kinds of food which she can’t
have. They think that, of course, she can have that pie, there is only a little bit of egg or fish
and the next night we can’t sleep, the child only scratches herself, cries and I put salve on
her, and again she cries. (No. 19)
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Mothering and Everyday Life
By increasing their own expertise, mothers attempt to control the illness, analyze their experience
of it, learn to take better care of their child’s illness, and in that way also their child’s and their
own well-being. (Kangas, 2003, p. 77).
Lonely Mothers – Absent Fathers
Fathers are absent in this study in two ways. First, they were unwilling to take part-- only two
fathers answered, and all other 101 respondents were mothers. The data of the two fathers is omitted and mothers´ stories are the main data source in this study. Second, fathers were absent from
everyday life based on the mothers´ narration and experience. On the one hand, mothers felt that
their child’s illness and the extra work it causes are left to them. On the other, working life has
required their partner. It is commonly stated these ways:
The illness in our family is mainly the mother’s responsibility. Sometimes I get tired of the
situation that the responsibility about the treatment, especially in unsure situations, lies with
me. Because my partner is seldom along, for instance, to visits to the doctor, he does not then
take responsibility for the care. (No. 88)
My partner works more than he can manage. (No. 78)
In memories about motherhood it is rather common to mention men who are involved little in caring for and bringing up children. The absence of men comes through generations. A more present
and active father is hoped for, but seldom realized (Katvala, 2001). Men can hope for options in
domestic work. Then attempts are made to share household work based on personal or natural
interest. The main responsibility for domestic work is, in any case, often left to the mother. (Aalto,
2002, p. 35; Harinen, 2001; Jokinen, 1999; Julkunen, 1995, pp. 98, 101). When the situation is
compelling enough, a father can take the entire responsibility. Women’s supremacy at home has
often been discussed as a critical feature of parental involvement patterns, meaning that women
should give up their primary parenthood and power over domestic work and childcare standards
and give fathers a chance for their own parenthood. But responsibility for dividing parenthood
is left to the women. (Korhonen, 2004, pp. 261-263). From this study the stories about mothers´
everyday life gives a picture of them managing by themselves and being lonely:
The main thing is that the people working in the official sector are not always aware of what
kind of situation can occur in a family when a child or children are ill. They can’t necessarily think about the amount of work and costs. I have felt sometimes that they refuse to help
because they think we have got too many children and we should manage by ourselves. Now
when I had a baby in February, I did not get home care help before the midwife called the
home service counsellor. (No 15)
But mothers still have expectations about support from their partner, relatives and the welfare
system.
Discussion
In Finland, when we are faced with a crisis, we are used to trusting that the welfare states´ service system will support our causes. We also have a very strong belief in equality between men
and women. To take care of an ill child involves a lot of tasks that have been considered gender
specific. Findings of this study show that a child’s illness brings up gender-orientated issues and
19
Päivi Kauppila
increases mother’s tasks. Recently, discussion regarding structural detachment has begun. In public decision-making, this term evokes a mode of action that disregards the families. (Bardy, 2002;
Sauli et al., 2002). The changes in the political line as well as cuts in social and health benefits
and services touch first those families with special needs. But even if mothers have a long-term ill
child, they still try to fulfil their part of motherhood and paid labourer simultaneously, so-called
wage labour motherhood. The difference now is that in many ways the welfare state has withdrawn from its original aims and duties. The professions of social and health care act, according
to Julkunen, (2004, p. 169), as the face of the welfare state. Citizens especially value careers in
health care. Know-how is not enough to guarantee trust, but welfare professions are associated
with the expectation of caring. The popularity of self-help and peer groups, chatting on the internet, as well as lamenting various life-stories of people in the same situations, can be seen as
signs of the blind areas and the insufficiency of the health services. These forums establish for
individuals to handle experiences confidentially and put their own message into the public space.
(Hänninen & Timonen, 2004, pp. 221-222; Kangas, 2003, pp. 90–92). The results of this study
indicate that data collection has worked as a channel for mothers to express themselves and to
become heard. Mothers had a chance to tell about their private everyday life and parenthood but
also about their encounter with the public welfare state and its professionals.
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