1. family and parenting
2. children

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
paivi.kauppila@joensuu.fi
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)
18
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.
References
Aalto, A-M. & Kauppinen, R. (2000). Astma osana elämää [Asthma as a Part of Life]. In L. A. Laitinen, K. Juntunen-Backman, J. Hedman & S. Ojaniemi (Eds.), Astma [Asthma]. Duodecim. Hengitysliito. Gummerus.
Jyväskylä.
Aalto, I. (2002). Kotiin päin. Kodin muuttuvat merkitykset miesten isyyskertomuksissa [Towards Home. Changing
Meanings of Home in Men´s Narratives about Fatherhood]. Naistutkimus-Kvinnoforskning, 15(2), 30-42.
Anttonen, A. & Sipilä, J. (2000). Suomalaista sosiaalipolitiikkaa [Finnish Social Policy]. Vastapaino. Tampere.
Astmaohjelma 1994-2004. Sosiaali- ja terveysministeriön työryhmän kokonaisohjelma [Asthma Program 19942004. The Program of the Work Group of the Finnish Social and Health Ministry]. Finnish Medical Journal,
1994;49, 2889-2921.
Backman, A. (2004). Lasten astma [Childhood Asthma]. Hyvä Hengitys, 1/2004. Pulmonary Association Heli
Publications.
Bardy, M. (2002). ”Koko kylä” – yhteinen vastuu ja palvelut [”The Entire Village” – Common Responsibility and
Services]. In M. Bardy, M. Salmi & T. Heino, Mikä lapsiamme uhkaa? Suuntaviivoja 2000-luvun lapsipoliittiseen keskusteluun [What Is Threatening Our Children? Guidelines for Debate on Child Policy in the 21st
Century]. STAKES Reports 263. Saarijärvi: Gummerus Kirjapaino Oy.
Bech-Jørgensen, B. (1991). What Are They Doing When They Seem to Do Nothing? In J. Ehrnrooth & L. Siurala
(Eds..), Construction of Youth. Helsinki: VAPK-Publishing and Finnish Youth Research Society, 148-158.
Bossert, E., Holaday, B., Harkins, A. & Turner-Henson, A. (1990). Strategies of Normalization Used by Parents of
Chronically Ill School Age Children. Journal of Child and Adolescent Psychiatry in Mental Health Nursing,
1990:3 (2), 57-61.
Deatrick, J.A., Knaft, K. A. & Murphy-Moore, C. (1999). Clarifying the Concept of Normalization. Image Journal
of Nursing Scholarship, 1999:31, 209-214.
Denham, S. A. (2002). Family Routines: A Structural Perspective for Viewing Family Health. Advanced Nursing
Science, Aspen Publishers, 60-74.
Eskelinen, J. & Kinnunen, P. (2001). Lapsuuden loppu vai uusi lapsuus [The End of Childhood Or New Childhood]. In Törrönen, M. (Ed.), Lapsuuden hyvinvointi. Yhteiskuntapoliittinen puheenvuoro [Well-Being in
Childhood. A Social Politic Statement]. Pelastakaa Lapset - Save the Children Finland. Tummavuoren kirjapaino. Vantaa.
20
Mothering and Everyday Life
Ferguson, P. M. & Ferguson, D. L. (1987). Parents and Professionals. In P. Knoblock (Ed.), Understanding Exceptional Children and Youth. Boston. Little Brown, 346-391.
Fetterman, D. M. (1998). Ethnography: Step by Step (2nd ed.). Applied Social Research Methods Series, 17.
SAGE Publications.
Giddens, A. (1991). Modernity and Self-Identity. Stanford University Press.
Gjengedal, E., Rustoen, T., Wahl, A. & Hanestad, B. R. (2003). Growing up and Living with Cystic Fibrosis.
Everyday Life and Encounters with the Health Care and Social Services – A Qualitative Study. Adcances in
Nursing Science, 26 (2), 149-159.
Hammersley, M. & Atkinson, P. (1983). Ethnography Principles in Practice. Tavistock Publications. London and
New York.
Harinen, P. (2001). Vajaiksi leimatut. Ongelmanuorten vanhemmuudesta [Labeled as Incompetent. About Parenthood of Problematic Young Persons]. In V. Puuronen (Ed.), Valkoisen vallan lähettiläät. Rasismin arki ja
arjen rasismi [Ambassadors of White Power. The Everyday of Racism and the Racism of Everyday]. Vastapaino. Tampere.
Heikkinen, H. L.T. & Jyrkämä, J. (1999). Mitä on toimintatutkimus? [What Is Action Research?] In H. L. T.
Heikkinen, R. Huttunen & P. Moilanen (Eds.), Siinä tutkija missä tekijä. Toimintatutkimuksen perusteita ja
näköaloja [Where There Is Researcher There Is Maker. Basis and Viewpoints of Action Research]. Atena
kustannus. Juva.
Helsti, H. (2003). Synnytyksen lääketieteellistäminen ja kansanomainen vastarinta. Kulttuuriset ristiriidat kotisynnytysten aikaan [The Medicalization of Birth and Vernacular Resistance. Culrural Conflicts in the Era of
Home Deliveries]. In M-L. Honkasalo, I. Kangas & U-M. Seppälä (Eds.), Sairas, potilas, omainen. Näkökulmia sairauden kokemiseen [Sick Person, Patient, Relative. Viewpoints for Experiencing Illness]. SKS. Helsinki
Hentinen, M. & Kyngäs, H. (1995). Vanhempien voimavarat hoitoon ja kasvatukseen: Kyselytutkimus pitkäaikaisesti sairaiden lasten vanhemmille [Parents’ resources for Care and Upbringing. Survey for the Parents with
Long Term Ill Child]. Finnish Journal of Nursing Science, 1, 12-21.
Hiilamo, H. (2002). Perheiden taloudellinen tukeminen [Financial Support for Families]. In M. Heikkilä & M.
Kautto (Eds.), Suomalaisten hyvinvointi 2002 [The Welfare of Finns 2002]. National Research and Development Centre for Welfare and Health (STAKES). Gummerus Kirjapaino Oy. Jyväskylä.
Hoikkala, T. (1993). Katoaako kasvatus, himmeneekö aikuisuus? Aikuistumisen puhe ja kulttuurimallit [Is Upbringing Disappearing, Is Adulthood Diminishing? The Discourse and Cultural Models of Adulthood].
Gaudeamus. Jyväskylä.
Honkasalo, M-L. (2004). ”Elämä on ahasta täällä”. Otteita maailmasta joka ei pidä kiinni [“Life is Confined in
Here” Extracts of the World That Does not Hold on to You]. In M-L. Honkasalo, T. Utriainen & A. Leppo
(Eds.), Arki satuttaa. Kärsimyksiä suomalaisessa nykypäivässä [When Everyday Life Hurts. Sufferings in
Present Finland]. Vastapaino. Tampere.
Honkonen, R. (1993). Symbolinen interaktionismi ja kasvatuksen tutkiminen [Symbolic Interactionism and Research on Education]. Kasvatus, 24 (3), 231-241.
Horner, S. D. (1998). Catching the Asthma. Family Care for School-Aged Children with Asthma. Journal of Pediatric Nursing, 13, 356-366.
Hänninen, V. & Timonen, S. (2004). ”Huoli ja masennus”. Kärsimyksiä ennen ja nyt [”Worry and Depression”.
Sufferings Now and Before]. In M-L. Honkasalo, T. Utriainen & A. Leppo (Eds.), Arki satuttaa. Kärsimyksiä suomalaisessa nykypäivässä [When Everyday Life Hurts. Sufferings in Present Finland]. Vastapaino.
Tampere.
Jokinen, E. (2003). Arjen kyseenalaisuus [The Questionability of Everyday Life]. Naistutkimus, 1/2003, 4-17.
Jokinen, P. (1999). Astmaa sairastavan lapsen perheen elämänpolku – etnografia astmaa sairastavien kouluikäisten lasten perheiden elämästä [The Life Path of a Family of a Child with Asthma – An Ethnographic Study
on the Life of Families of School-Age Children with Asthma]. University of Kuopio Publications E. Social
Sciences 77.
21
Päivi Kauppila
Julkunen, R. (1994). Suomalainen sukupuolimalli. 1960-luku käänteenä [The Finnish Gender Model. 1960’s as
a Breaking Point]. In A. Anttonen, L. Henriksson & R. Nätkin (Eds.), Naisten hyvinvointivaltio [Women´s
welfare state]. Vastapaino. Tampere.
Julkunen, R. (1995). Työssäkäyvän äidin julkiset ja yksityiset suhteet [A Working Mother’s Public and Private
Relations]. In L. Eräsaari, R. Julkunen & H. Silius (Eds.), Naiset yksityisen ja julkisen rajalla [Women on the
Borderline of Private and Public]. Vastapaino. Tampere.
Julkunen, R. (2004). Hyvinvointipalvelujen uusi politiikka [The New Policy of Welfare Services]. In L. Henriksson & S. Wrede (Eds.), Hyvinvointityön ammatit [Professions of Welfare Work]. Gaudeamus. Helsinki
Jähi, R. (2003). Elämää vanhemman psyykkisen sairauden varjossa [Life in the Shadow of a Parent´s Mental Illness]. In M-L. Honkasalo, I. Kangas & U-M. Seppälä (Eds.), Sairas, potilas, omainen. Näkökulmia sairauden
kokemiseen [Sick Person, Patient, Relative. Viewpoints for Experiencing Illness]. Finnish Literature Society.
Helsinki.
Kangas, I. (2003). Sairaan asiantuntijuus – tieto ja kokemus sairastamisen arjessa [The Expertise of an Ill Person
– Knowledge and Experience of Being Ill in Everyday Life]. In M-L. Honkasalo, I. Kangas & U-M. Seppälä
(Eds.), Sairas, potilas, omainen. Näkökulmia sairauden kokemiseen [Sick Person, Patient, Relative. Viewpoints for Experiencing Illness]. Finnish Literature Society. Helsinki.
Katvala, S. (2001). Missä äiti on? Äitejä ja äitiyden uskomuksia sukupolvien saatossa [Where’s Mother? Mothers and Maternal Beliefs over Three Generations]. Jyväskylä Studies in Education, Psychlogy and Social
Research 186. Jyväskylä.
Kauppila, P. (2001). Lapsen astma perheen arjessa. Perhetukiprojektin (1999-2001) lähtökohdat ja toteutus
[Childhood Asthma in Everyday Life of a Family. Starting Points and Implementation of the Family Support
Project (1999-2001)]. Pulmonary Association Heli Studies 9/2001. Nykypaino. Helsinki.
Kautto, M., Parpo, A. & Uusitalo, H.(2002). Hyvinvointipolitiikka, tulonjako ja kannustimet [Welfare Policy, Income Distribution and Incitements]. In M. Heikkilä & M. Kautto (Eds.), Suomalaisten hyvinvointi 2002 [The
welfare of Finns 2002]. National Research and Development Centre for Welfare and Health (STAKES).
Gummerus Kirjapaino Oy. Jyväskylä.
Kirsi, T. (2003). Aina lähdössä kotiin: puolisot dementiapotilaan omaishoitajina [Always Going Home: Partners
Taking Care of Dementic Relatives]. In M-L. Honkasalo, I. Kangas & U-M. Seppälä (Eds.), Sairas, potilas,
omainen. Näkökulmia sairauden kokemiseen [Sick Person, Patient, Relative. Viewpoints for Experiencing
Illness]. Finnish Literature Society. Helsinki.
Kolehmainen, J. (2004). Osallistuva isä – muuttunut mies? [Committed Father - A Changed Man?] In I. Aalto
& J. Kolehmainen (Eds.), Isäkirja. Mies, vanhemmuus ja sukupuoli [Father Book. Man, Parenthood and
Gender]. Vastapaino. Tampere.
Korhonen, M. (2004). Työssäkäyvä isä. Mitä yksi epätavallinen tarina paljastaa perhepiirin kätketyistä ”sukupuolisopimuksista”? [Working Father. What Does One Unusual Story Show about Hidden “Gender Agreements” in Family Circle?] In I. Aalto & J. Kolehmainen (Eds.), Isäkirja. Mies, vanhemmuus ja sukupuoli
[Father Book. Man, Parenthood and Gender]. Vastapaino. Tampere.
Korvela, P. (2003). Yhdessä ja erikseen. Perheenjäsenten kotona olemisen ja tekemisen dynamiikka [Together and
Individually. The Dynamics of Family Members’ Gatherings at Home]. National Research and Development
Centre for Welfare and Health (STAKES) Research Report 130. Gummerus Kirjapaino Oy. Saarijärvi.
Lillrank, A. (1998). Living ONE DAY at a Time. Parental Dilemmas of Managing the Experience and the Care of
Childhood Cancer. National Research and Development Centre for Welfare and Health (STAKES). Research
report 89. Gummerus. Jyväskylä.
MacDonald, H. (1995). “Mastering Uncertainty”: Mothering the Child with Asthma. Pediatric Nursing, 22, 5559.
Mead, G. H. (1983). Mind, Self & Society. From the Standpoint of the Social Behaviourist. Chicago: The University of Chicago press.
Morgan, D. H. J. (1996). Family Connections: An Introduction to Family Studies. Polity Press, Cambridge.
Morgan D. H. J. (1999). Risk and Family Practices: Accounting for Change and Fluidity in Family Life. In E. B.
22
Mothering and Everyday Life
Silva & C. Smart (Eds.), The New Family? Sage. London, 36-53.
Peggy, A. F. & Janice, M. M. (1988). Hoitotyön kvalitatiivinen tutkimus [Qualitative Research in Care Work].
Kirjayhtymä. Helsinki.
Puolanne, M. & Tikkanen, H. (2000). Astma ja liikunta [Asthma and Exercise]. In L. A. Laitinen, K. JuntunenBackman, J. Hedman & S. Ojaniemi (Eds.), Astma [Asthma]. Duodecim. Hengitysliito. Gummerus. Jyväskylä.
Rantalaiho, L. (1994). Sukupuolisopimus ja Suomen malli [Gender Agreement and the Finnish Model]. In A.
Anttonen, L. Henriksson & R. Nätkin (Eds.), Naisten hyvinvointivaltio [Women´s welfare state]. Vastapaino.
Tampere.
Rehm, R. S. & Franck, L. S. (2000). Long-Term Goals and Normalization Strategies of Children and Families Affected by HIV/AIDS. Advanced Nursing Science, 2000:23, 69-82.
Reijonen, T. Ashorn, P. & Korppi, M. (2001). Pikkulasten astma [Asthma of Infants]. Duodecim Medical Journal,
3/2001.
Ritakallio, V-M. (1994). Köyhyyden muuttunut kuva Suomessa 1966-90 [The Changed Picture of Poverty in Finland 1966-90]. In M. Heikkilä & K. Vähätalo (Eds.), Huono-osaisuus ja hyvinvointivaltion muutos [Inferiority and the Change of Welfare State]. Tammer-Paino.Tampere.
Robinson, C. A. (1998). Women, Families, Chronic Illness and Nursing Interventions: From Burden to Balance.
Journal of Family Nursing, 4, 271-290.
Salmi, M. (2004). Arkielämä kokoaa yhteen työn ja perheen [Everyday Life Gathers Together Work and Family].
In M. Salmi & J. Tasku-Lammila (Eds.), Puhelin, mummo vai joustava työaika. Työn ja perheen yhdistämisen arkea [Telephone, Grandmother or Flexible Working Hours. Everyday Life of Linking together Work
and Family]. National Research and Development Centre for Welfare and Health (STAKES). Gummerus
kirjapaino oy. Saarijärvi.
Salmi, M. & Kivimäki R. (1997). Introduction. In L. Rantalaiho & T. Heiskanen (Eds.), Gendered Practices in
Working Life. London: Macmillan, 101-116.
Salo, M. A. (2000). Loppukesästä hän jo juoksi. Runoja sairaan lapsen vanhemmilta [In the End of the Summer
She Was Already Running. Poems from the Parents with an Ill Child]. Joensuu University Press. Joensuu.
Sauli, H., Bardy M. & Salmi, M. (2002). Elinolojen koventuminen pikkulapsiperheissä [The Hardening of Living Conditions in Families with Infants]. In M. Heikkilä & M. Kautto (Eds.), Suomalaisten hyvinvointi
2002 [The welfare of Finns 2002]. National Research and Development Centre for Welfare and Health
(STAKES). Gummerus Kirjapaino Oy. Jyväskylä.
Seppälä, U-M. (1998). Lapsi, perhe ja epilepsia. Elämää pitkäaikaissairauden kanssa [The Child, Family and
Epilepsy. Life with a Long Term Illness]. University of Helsinki. Helsinki.
Seppälä, U-M. (2000). ”Tää on nyt sitten meidän elämää.” Tutkimus epilepsiaa sairastavasta lapsesta ja hänen
perheestään [”This Is Now Our Life.” Study of an Epileptic Child and His Family]. Finnish Epilepsy Association, 1/2000. Helsinki.
Siponen, A. (1999). “Ei minulle voi käydä näin!” Tutkimus astmaatikkojen sairastamisesta [”This Can´t Happen
to Me!” Research on Asthamatics´ Suffering]. Academic Dissertation. University of Tampere. Tampere.
Sorva, R. (1998). Allergia ja astma [Allergy and Asthma]. In K. Raivio & M. A. Siimes (Eds.), Lastentaudit
[Childhood Illnesses]. Gummerus Oy. Jyväskylä, 257-274.
Tedre, S. (1999a). Hoivan sanattomat sopimukset. Tutkimus vanhusten kotipalvelun työntekijöiden työstä [The
Tacit Agreements of Care. Study on the Elderly´s Home Care Service Workers´ Work]. University of Joensuu,
Publications in Social Sciences, 40.
Tedre, S. (1999b). Minä vanhusten kotipalvelun kentillä [Me on the Fields of the Elderly´s Home Care Services].
Gerontologia, 13/1999.
Törrönen, M. (2001). Saatteeksi [Introduction]. In M. Törrönen (Ed.), Lapsuuden hyvinvointi. Yhteiskuntapoliittinen puheenvuoro [Well-Being in Childhood. Social Politic Statement]. Pelastakaa Lapset - Save the Children Finland. Tummavuoren kirjapaino. Vantaa.
23
Päivi Kauppila
Utriainen, T. & Honkasalo, M-L. (2004). Kärsimys, paha ja kulttuurintutkimus [Suffering, Evil and Cultural
Studies]. In M-L. Honkasalo, T. Utriainen & A. Leppo (Eds.), Arki satuttaa. Kärsimyksiä suomalaisessa
nykypäivässä [When Everyday Life Hurts. Sufferings in Present Finland]. Vastapaino. Tampere.
Valovirta, E. (2000). Tutkimusten ja hoidon erityispiirteet lapsen astmassa [Special Features of Examining and
Treating Childhood Asthma]. In L. A. Laitinen, K. Juntunen-Backman, J. Hedman & S. Ojaniemi (Eds.),
Astma [Asthma]. Duodecim. Hengitysliito. Gummerus. Jyväskylä.
Whyte, D. (1997). Chronic Illness in Childhood. In A., Baggaley, Sarah. E. & Rutter, C. (Eds.) (1997). Explorational Journal of Nursing Studies 34, 312-323.
Vuori, J. (2004). Isyyden mallit ja isien valinnat [Models of Fatherhood and Fathers´ Choices]. In I. Aalto & J.
Kolehmainen (Eds.), Isäkirja. Mies, vanhemmuus ja sukupuoli [Father Book. Man, Parenthood and Gender]. Vastapaino. Tampere.
24