Annotated Bibliography

368

Swedish Families’ Lived Experience When a Child Is First Diagnosed as Having Insulin-Dependent Diabetes Mellitus An Ongoing Learning Process Anne Wennick, RN, RSCN Inger Hallström, RN, RSCN Lund University

Sweden has the second highest nationwide incidence of childhood diabetes in Europe, and it is rapidly increasing. The diagnosis of Type 1 insulin-dependent diabetes mellitus has been indicated as a crisis in the life of the individual and family. The purpose of this study was to elucidate the whole family’s lived expe- rience when a child in the family is diagnosed as having diabetes. It was designed as a longitudinal, descriptive, inductive study including qualitative interviews. Family members in 12 families were recruited from a children’s uni- versity hospital in Sweden to participate in a series of three interviews: when first diagnosed, and 1 and 3 years after diagnosis. This article derives from the first interview. All invited families agreed to participate and were interviewed 1 to 3 months after diagnosis using a hermeneutic phenomenological approach. The family’s lived experience was identified as an ongoing learning process including learning about the inevitable and learning about the extent. The learn- ing process was experienced as a recurrent phenomenon when the family was exposed to new situations or contexts. Therefore, individualized treatment may reduce the difficulties experienced in coping with the diabetic management reg- imen after discharge, thus making the transition smoother.

Keywords: diabetes mellitus; Type 1; family; nursing; pediatrics; lived experience

Journal of Family Nursing Volume 12 Number 4

November 2006 368-389 © 2006 Sage Publications

10.1177/1074840706296724 http://jfn.sagepub.com

hosted at http://online.sagepub.com

Authors’ Note: Please address all correspondence to Anne Wennick, Department of Nursing, Lund University, Box 157 SE — 221 00, Lund, Sweden; phone: +46-46-222-18-92; fax: +46- 46-222-18-17; e-mail: [email protected].

Wennick, Hallström / Families’ Lived Experience 369

A20-year prospective registration of childhood onset of Type 1 insulin-dependent diabetes mellitus (IDDM, which henceforth will be referred to as diabetes) in Sweden shows a steady increase over time (Dahlquist & Mustonen, 2000). Next to Finland, Sweden has the second highest nation- wide incidence in Europe in children aged 14 years or younger (Diabetes Epidemiology Research International Group, 1988; Karvonen, Tuomilehto, Libman, & LaPorte, 1993; Karvonen et al., 2000; Reunanen, Akerblom, & Kaar, 1982; Rewers, LaPorte, King, & Tuomilehto, 1988). About 650 children in Sweden up to the age of 18 were diagnosed with diabetes in 2000 (Hanas, 2005). Diabetes is one of the most common chronic childhood disorders (DCCT Research Group, 1993; Dorman, O’Leary, & Koehler, 1994). Over time, a serious psychosocial strain on the family unit is unavoidable (Rolland, 1994). In pediatric diabetes, parents may experience a persistence or intensifi- cation of distress over time (Boman, Viksten, Kogner, & Samuelsson, 2004). The family’s overall functioning and individual members’ living conditions are changed due to the child’s chronic illness (Richt, 1992). To improve dia- betic care, it is important to elucidate the family’s experiences from a longitu- dinal perspective when a child is diagnosed as having diabetes. Therefore, the purpose of this study was to elucidate the whole family’s lived experience, from each family member’s perspective, when a child in the family is diag- nosed as having diabetes.

Literature Review

Chronic illness in childhood is defined as a condition that interferes with daily functioning for more than 3 months a year, causes hospitalization for more than 1 month a year, or is likely to do either of these (Perrin et al., 1993). Diabetes is a chronic illness that requires continuing health care and follow-up to reduce and prevent the risk of disease-related complications. Maintaining successful family involvement appears crucial for achieving optimal metabolic control in youths with diabetes, to preserve health and prevent future complications (Laffel et al., 2003). Researchers have identi- fied the importance of developmentally appropriate family involvement in the diabetic management regimen for optimizing control and reducing disease-related complications (Anderson, Auslander, Jung, Miller, & Santiago, 1990; Wysocki et al., 1996). The importance of parental involvement to pre- serve consistent insulin administration and avoid recurrent diabetic ketoaci- dosis is also well documented (Glasgow et al., 1991; Golden, Herrold, & Orr, 1985).

There has been a rapid increase in the incidence of diabetes in many European countries in the past few decades (Akerblom & Knip, 1998; Atkinson & Eisenbarth, 2001; Bingley & Gale, 1989; Dahlquist, 1995; Diabetes Epidemiology Research International Group, 1990; EURODIAB ACE Study Group, 2000; Freiesleben De Blasio, Bak, Pociot, Karlsen, & Nerup, 1999; Green, Sjolie, & Eshoj, 1998; Karvonen et al., 1993; A. Lernmark, 1999; Pundziute-Lycka et al., 2002), and due to the increasing incidence of younger age at diagnosis (Pundziute-Lycka et al., 2002), extensive demands are posed by diabetes on an increasing number of families. Numerous disciplines have attempted to define family (Wright & Leahey, 2005), a concept symbolizing a focus on relations, interactions, and reciprocity (Wright, Watson, & Bell, 1996), and Craft and Willadsen (1992) have defined it as

a social context of two or more people characterized by mutual attachment, car- ing, long-term commitment, and responsibility to provide individual growth, supportive relationships, health of members and of the unit, and maintenance of the organization and system during constant individual, family and societal change. (p. 519)

In a literature review including 73 articles, Knafl and Gilliss (2002) made a syn- thesis of current research about families in which a member had a chronic ill- ness. The review identified two areas in which research has been performed: descriptive studies of family response to illness, and explanatory studies of vari- ables contributing to response to illness. Although many of the reviewed arti- cles studied family life in the context of chronic illness, few of them included data from all family members, such as the affected child, parents, and siblings. Most of the reviewed articles related to children with cancer, asthma, and devel- opmental disabilities, and only four related to children with diabetes (Dashiff, 1993; Gallo, 1990; Hatton, Canam, Thorne, & Hughes, 1995; McCarthy & Gallo, 1992).

Diabetes in children has primarily been studied from the perspective of the child’s parent, and how the child has adapted to the illness (Almeida, 1995; Betschart, 1987; Eiser, Havermans, Kirby, Eiser, & Pancer, 1993; Hatton et al., 1995; Kager & Holden, 1992; Koizumi, 1992; Lowes & Gregory, 2004; Lowes, Gregory, & Lyne, 2005; Lowes & Lyne, 1999, 2000a, 2000b; Lowes, Lyne, & Gregory, 2004). Research from the whole family’s perspective when a child is diagnosed as having diabetes and the influence of the diabetic manage- ment regimen on the family members’ daily life is especially rare (Betschart, 1987; Hatton et al., 1995; Laron & Galatzer, 1982; B. Lernmark, 1999; Richt, 1992; Smith, 1998; Williams, 1997).

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Method

Design

The study was designed as a descriptive, inductive study including qualita- tive interviews with family members at three different points of time to eluci- date the child’s and family members’ lived experience from a longitudinal perspective. This article derives from the first interview at the time of the diag- nosis. The methodological approach chosen was hermeneutic phenomenology as described by van Manen (1990, 1997). Phenomenology and hermeneutics are two different philosophical traditions that both derive from empiricism. Phenomenology is a “pure” description of a lived experience and hermeneu- tics is an interpretation of the experience via some text. Hermeneutic phe- nomenological reflection involves a continuous movement between analysis of sections of the interview and the overall interview to create an interpreta- tion that leads to a deeper understanding of the experience. It involves a process of insightful invention, discovery, and disclosure and elucidates the nature of a certain experience or phenomenon by asking selected individuals to narrate their experiences (van Manen, 1990, 1997).

Setting

The study was conducted during a 5-month period in 2003 at a children’s university hospital in Sweden, a region with a total population of approxi- mately 1,152,697 inhabitants (Samverkan Skane SydVast, 2004). The hospi- tal provides pediatric secondary health care for children diagnosed as having diabetes through a team including pediatric nurses, pediatricians, and nutri- tionists, all specialized in diabetes. Two pediatric diabetes specialist nurses alternate to care for the newly diagnosed children and their families, for a period of 1 year at a time. The team enrolls up to 35 children with newly dis- covered diabetes annually. The hospital stay for these children lasts approxi- mately 14 days, during which the affected child and one or both parents learn the diabetic management regimen.

Sample

Consecutive series of families with a child with newly diagnosed diabetes were asked, within 2 weeks of diagnosis, to participate during a 4-month period in 2003. Two additional families were enrolled 5 months later to ensure that variation in the data was not restricted by all having the same responsible pedi-

Wennick, Hallström / Families’ Lived Experience 371

atric diabetes specialist nurse (on duty 5 months earlier). Inclusion criteria for the family were as follows: a child in the family at the age of 7 or older diag- nosed with diabetes, and ability of the family to speak and understand Swedish. Siblings in the family aged 7 years or older were also invited. All of the families asked participated, although one sibling in two families declined to participate. Twenty-three parents (12 mothers and 11 fathers), 12 children diagnosed with diabetes (5 boys and 7 girls), and 7 siblings (5 boys and 2 girls) were included. Two siblings, in two families, were younger than age 7 and therefore not included. Family participants are described in Figure 1. The 12 mothers’ ages ranged from 30 to 45 (md 39.5), the father’s ages ranged from 30 to 52 (md 43), the affected children’s ages ranged from 7 to 14 (md 9.5), and the sibling’s ages

372 Journal of Family Nursing

Figure 1 The Family Members Participating in the Study

Wennick, Hallström / Families’ Lived Experience 373

ranged from 9 to 18 (md 12). Recruitment of families ended when a variation of family structures was obtained. The families represented two single-parent households, two reconstituted families, three unmarried couples with children, and five families made up of married couples and children. In two of the families, one parent had diabetes.

Procedure

When a child was diagnosed with diabetes, the responsible pediatric dia- betes specialist nurse gave the parents written information about the study and a consent form, allowing the investigator (AW) to contact the family. Verbal information to parents about the study was given by telephone by the first author, and when they decided to participate, written informed consent was obtained at the time of the interview from all parents. Children were given age- specific oral and written information, and after having been given time to reflect, children older than age 12 gave their written informed consent, whereas younger children gave verbal and written assent. Interviews were conducted by AW in a location chosen by the family and in the order of pri- ority that the children decided on to make them feel secure and comfortable. This was normally in their home and during evenings and weekends 1 to 3 months after the child was diagnosed. Family members were individually invited to relate their experiences and thoughts, when the child became ill, in their own words. Additional questions such as, “What happened next? Who? What did you feel? Can you describe fully?” were posed only for the purpose of clarifying and to prompt discussion. No further guidance was given throughout the interview, and participants covered the topics they felt were relevant and in their own order. The interviews lasted as long as the intervie- wees needed, ranging from 22 to 117 minutes (md 56) for adults and 5 to 28 minutes (md 9) for children. The interviews were audiotaped on mini-discs for later transcription. After the interview, parents were asked to complete a ques- tionnaire with demographics.

Analysis

When interviewing the family together, there is a risk of pulling greater weight in data from parents as they are more articulate than children (Miles & Huberman, 1984). Therefore, each family member was interviewed individually to attain an in-depth understanding of each family member’s lived experience. It is our belief that every family member is equally important in capturing the whole family’s lived experience, because every individual is unique and

experiences the child’s illness and life in the family in his or her own particular way. This corresponds with the thesis that the family unit is a system made up of individuals, but with specific characteristics that reach beyond the individual members (Wright & Leahey, 2005; Wright et al., 1996). The analysis began during the interviews where the first author actively listened and thought about the meaning of what was being said. Each interview was then transcribed ver- batim and compared with the original disc for accuracy of language and nota- tions about additional interview features such as voice inflection and onset of crying. After this, both authors read and reread each family member’s transcript independently. Once an understanding of the overall text was obtained, each author conducted independent analyses of the interviews using a selective read- ing approach, asking, “What phrases seem particularly essential or revealing about the family’s experience when a child is diagnosed as having diabetes?” to understand the respondents’ experience of their everyday life, both as indi- vidual family members and as a family unit. Phrases in each interview were underlined and tentative theme names were written in the margin of the text. Preliminary themes and thematic descriptions were discussed collaboratively to generate deeper insights and understandings of how each family member’s experience shaped the family’s experience as a unit. The act of writing formed the research process, as described in hermeneutic phenomenology (van Manen, 1990, 1997). Preliminary results were discussed in seminars and presented 1 year after the interview to participating parents, who all felt that the findings reflected their family’s lived experience.

Preunderstanding

Awareness of one’s own experience may provide clues for orienting one- self to the phenomenon. A personal description was made by the first author with the purpose of preventing preunderstanding from influencing the analy- sis process in a subjective manner (van Manen, 1990, 1997). Experiences in this field come from several years of work as a registered sick children’s nurse (RSCN) at a children’s hospital. The second author has been an RSCN for 25 years, is a doctor of medical science, and has the experience of being the mother of three children.

Ethical Considerations

Families were informed, verbally and in writing, that their participation was voluntary and that their choice would not affect the child’s medical care or legal rights.

374 Journal of Family Nursing

Furthermore, they were informed that they could withdraw their consent at any time without giving any reason. Participants were guaranteed that all data would be kept confidential and not handed over to staff at the hospital. Ethical approval was obtained from the local Research Ethics Committee (LU 159-03).

Findings

The family’s lived experience when the child was diagnosed as having diabetes was identified as an ongoing learning process including the theme learning about the inevitable and learning about the extent (see Figure 2). When the family thought that they had adjusted to what they knew at a par- ticular time, they had to learn more, as new issues about the child’s illness and the extent kept arising.

Learning About the Inevitable

Knowledge about the illness made family members aware of which symptoms corresponded with the diagnosis of diabetes. This made them realize that the child had had visible signs of the illness prior to the diag- nosis, which formed the subtheme of facing signs. Learning about the child’s diagnosis led to a feeling of chaos and being shaken to pieces, for the family as a whole and for family members individually. This formed the subtheme of feeling powerlessness. During hospitalization, parents experi- enced that they worked closely with the staff and that they were gradually invited to take on a greater responsibility for their child’s diabetic manage- ment regimen, which made them feel secure. Parents and siblings noticed that the child became spryer when they went home on leave, which reas- sured them that everything would work out. This formed the subtheme of feeling confidence.

Facing Signs

Looking back, family members had often seen signs but did not relate them to an illness. Children themselves and their siblings had noticed that the child’s thirst had increased and that they had to visit the bathroom more fre- quently than before, but they did not understand why. One affected child said,

I kept drinking gallons and kept going to the toilet, so finally I sat on the toi- let and drank at the same time. . . . I sat like that all the time, yes, and I was hungry as a bear too and ate tons.

Wennick, Hallström / Families’ Lived Experience 375

376 Journal of Family Nursing

Family members often found alternative reasons that the affected child had lost weight or was tired. These explanations were weakened when rela- tives or friends pointed out that the child might need a medical examination or that the child had symptoms similar to diabetes. The signs became promi- nent when the family changed environment, for instance, when they went for a holiday or visited relatives and friends. One sibling expressed the apparent change that she had noticed like this:

I noticed that he became thinner and thinner, but I thought that is the way it is, my brothers used to fight a lot and my brother used to call him “fatty,” so I thought that he had started dieting or something like that, because you could really see that he became extremely slim. He was rather tired too and didn’t talk much.

Some of the parents suspected that their child had diabetes, but they sin- cerely hoped they were wrong about their suspicion. One father said,

You both hoped that it would and hoped that it would not be something else, because you didn’t know if it could be something worse that caused this, so to speak, even if it is bad enough as it is.

Feeling Powerlessness

When the diagnosis was made, family members felt that they had a hard time trying to accept the inevitable. They experienced loss of memory and difficulties in understanding the meaning of the diagnosis. The affected child and siblings were often moved to tears when told about the diagnosis. They felt sadness and fear due to the diagnosis. As one mother stated,

The whole family is in a state of shock. You have siblings that you have to explain it to and when you haven’t truly learnt about it, how can you then explain to your son who is extremely worried about his younger sister?

Siblings conveyed that they were not present at the hospital gatherings for diabetes education and therefore were quite unaware about the meaning of diabetes. One sibling stated,

She had gotten diabetes and took injections and blood glucose and things like that. It was not as usual. [silent pause] They were worried. [silent pause] I didn’t know anything about it at that time.

Parents sensed that, initially, the affected child did not fully understand that their diagnosis was a chronic one and that they would not be given a

clean bill of health after their discharge from the hospital. The children were often unaware of what the diagnosis implied, and one affected child said,

[silent pause] I didn’t know what diabetes was and what was going to hap- pen at the hospital, which made me quite frightened.

Realizing that the illness involved continuous injections and blood glu- cose monitoring made family members experience sides of the affected child that they had never experienced before. One mother expressed her daughter’s despair when diagnosed as having diabetes like this:

What if she feels tremendously bad and proves to be completely depressed and [silent pause] she was sad and said that she didn’t want to live.

Parents were worried about disease-related complications and death caused by the illness, knowledge that weighed heavily on their shoulders and filled them with sorrow and despair, even though they hardly ever verbalized their thoughts to anyone else. They felt as if things would never be alright again and that they would not get over the fact that their child had been diag- nosed as having diabetes, while they simultaneously pondered about why they had not detected the child’s illness sooner. As one father noted,

As long as you were at the hospital, it went well, but when I came home, [silent pause] I thought it was horrible. Well, it was probably all the emotions. [silent pause] It can go wrong in different ways. You have to think carefully about what you do.

Parents experienced that they often were unable to talk about the affected child without becoming tearful or bursting into tears, which also was noticed by the children. As one mother stated,

My daughter says that the hardest part about having diabetes is to have a mother who cries all the time.

Feeling Confidence

Family members experienced that the affected child’s general health increased when he or she had been given insulin for a couple of days at the hospital. They saw that the child got rosy checks and gained weight, dark circles under the eyes vanished, and the child’s gaze became clearer. This made family members feel confident. One sibling said,

Wennick, Hallström / Families’ Lived Experience 377

She looked fit, had a needle on her hand and yes it was nice.

Parents felt safe in the hospital environment, sensing that they could rely on the staff and that they received attention. Even so, parents gradually became conscious of their future responsibility for the illness and the fact that they would have to take over and be able to adjust their new skills to their domestic environment. As one mother said,

We lived in some sort of a bubble. We were well taken care of at the hospi- tal, so we never felt insecure, but eventually you almost become institution- alized there [laughter]. [silent pause] It is very nice. Living there is rather unobstructed. You are allowed to take on a great deal of responsibility and, of course, it’s important in that situation, too, to be allowed to be the one [silent pause] not to have it taken away from you because then you feel that you’re able to do something while you’re sitting there anyway.

Parents felt that they benefited most when they were encouraged to han- dle everything by themselves in the hospital and thus became fully aware of the importance of making the diabetic management regimen manage- able. Being home on leave from the hospital gave the family time to feel their way and the chance to experience the illness in a domestic environ- ment and to reflect. As one mother stated,

I was relieved that it was not as difficult as I had imagined, you know, I had pictured that it would turn our whole existence upside down. Well, I suppose that it has done that partly but not to the extent I had thought.

When the family was home on leave from the hospital, they felt as if they were on their way back to their habitual way of living. The affected child often felt that it was pleasant to come home and did not really want to return to the hospital when the leave of absence was over. They were able to do things they did before being diagnosed, which made them look considerably healthier, and the family felt as if they were closely united. One affected child said,

You have been away from home for a rather long time by then. Yes, it was nice to come home and see that everything was as usual.

Learning About the Extent

Coming home from the hospital, the family felt that everyday life had to be reconstructed to correspond to the child’s illness. They had to enter a

378 Journal of Family Nursing

new reality and to build a new life. This resulted in an alteration of ingrained routines, which formed the subtheme of family alteration. The family situation was expressed as a shock for the family as a whole and as a catastrophe for some family members. Parents felt as if their role as parents was taken away from them and that they lost their sense of being the ones their child could rely on, which made them and the family feel insecure. This formed the subtheme of family uncertainty. The family’s life centered on the child’s illness, and all family members felt that they were no longer able to pop out spontaneously. This formed the subtheme of fam- ily restriction.

Family Alteration

Difficulties in managing the diabetic management regimen became apparent after discharge when the child was to be nursed in the home. At home, new dimensions of the illness became noticeable and family members felt unprepared and insecure. They felt as if their home belonged to the family who lived there before the child was diagnosed and as if it was not prepared to accept a family with a child diagnosed as having diabetes. One mother expressed it like this:

It felt slightly unfamiliar to come home. It felt as if I had lost the feeling that it was my home. I thought the same when I came home from the maternity ward, that the home environment was not adapted for a baby.

Parents often felt as if siblings were pushed into the background because of the illness. Siblings sensed that parents were more attentive to the affected child than to them, but at the same time, the affected child felt left out of it when siblings were eating things that corresponded to high blood glucose levels. As one sibling expressed it,

When my brother was diagnosed as having diabetes it was all about my brother, to begin with. . . . It was tough in the beginning, but then when I thought about it, I understood why.

Family life had to be carefully planned and the family had to live their life by the clock. Parents felt that their parental role changed into a con- trolling and supervising role. As one father said,

It’s all about planning. He has to carry some sandwiches and fruit with him and he always has the phone.

Wennick, Hallström / Families’ Lived Experience 379

Family Uncertainty

Coming home from the hospital required parents to carry out the dia- betic management regimen on their own child. The families experienced difficulties in adapting the regimen routines to their ordinary way of living and felt an enhanced need to stay in control. Siblings were anxious about their brother or sister due to their insufficient knowledge about diabetes. They sensed that this was a feeling they shared with the rest of the family. One parent described it as walking along a very narrow road with a wide ditch for high and low blood glucose levels on each side of the road, yet lacking experience of how to remain on the road. The families fought a hard battle in their effort to maintain even blood glucose levels, and parents often expressed a feeling of being a total failure if the levels were high or low. Initially, the affected child often slept with the parents at night, which made both parents and children feel safer, even though parents in general found it difficult to sleep at all. Parents felt that their anxiety increased at night, as they were worried that the child would have an insulin reaction during the night, without them noticing it. Thus, they felt that they had to monitor the blood glucose at night as well. One affected child said,

Mom has to get out of bed twice every night to monitor my blood glucose, but sometimes when she and I stay up until 10, she only has to get out of bed once a night and daddy usually stays awake until 3 o’clock at night.

The affected child and the parents experienced the school staff as gener- ally lacking in knowledge about diabetes. Thus, parents were not always confident in transferring the responsibility for the diabetic management regimen to the staff at school. As one affected child said about returning to school,

I felt secure because my mom went with me. I knew that if anything hap- pened to me, my mom would be there for me [silent pause] because I might experience an insulin reaction.

This compelled the families to develop strategies to prevent the child from having an incidence of ketoacidosis during school hours. For example, the affected child was often given a mobile phone to be able to phone the parents when monitoring blood glucose, and together they agreed on how much insulin the child needed to inject, as the affected child and his or her parents tended to rely more on their own child’s capacity than on the teacher’s.

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Family Restriction

At home, the illness influenced the family constantly, and family members kept asking each other about blood glucose levels, food and eat- ing, blood glucose changes, and so forth, in their efforts to try to become proficient with the illness and the child’s behavior. Family members felt as if their family life was made up of solely time for blood glucose monitor- ing, injections, and eating, and then after an hour, the procedure started all over again. They felt as if they could not do anything spontaneously because of their stereotyped existence. As one father said,

I have to sneak away to Statoil to buy me candy [laughter]. You can’t go away. I am a flexible person in that I go off and take trips. I don’t like to have my day fully planned in detail, no nine to five person. I work irregularly, work when nobody else does. I have many projects going at the same time. I am too restless to sit still like this.

Initially, parents felt that they could not bear the risk of letting the affected child set off and play at a friend’s house, so the child’s friends were invited over to play instead, as both parents and siblings were concerned about the affected child whenever he or she was out of their sight. All fam- ily members realized that the child’s illness resulted in restricted indepen- dence for each other and for the family as a whole as well. As one father put it,

We tried to go to the beach for a while; it was very controlled, a lot of blood glucose and monitoring, but we managed it. We went back to the beach a cou- ple of times and it was without much difficulty, but you don’t dare to let her out of your sight and not supervise her all the time, in a way that you usually don’t supervise an 8- to 9-year-old child [silent pause] because we didn’t know how fast she would react, have insulin reactions.

Family members experienced their days as fully planned in detail and they had a hard time taking pleasure in their everyday family life. Both sib- lings and the affected child said that they were not able to eat whenever and whatever they felt like eating. Restrictions made the family feel unsatisfied, as if life was not the way it was supposed to be. One sibling said,

We have to eat at special times, that’s the way things are [silent pause] If my brother has to eat at 5 o’clock, well then we all eat at 5 o’clock.

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Discussion

Twelve families’ lived experience when a child was diagnosed as having diabetes were identified through qualitative interviews. The most prominent finding was that the diagnosis triggered an ongoing learning process including the theme learning about the inevitable and learning about the extent, which struck not only the affected child but the parents, the siblings, and the whole family structure as well. Learning about the inevitable and learning about the extent was experienced as a recurrent phenomenon when the family was exposed to new situations and contexts. When the child was diagnosed as hav- ing diabetes, the learning process began with all family members learning about the inevitable by facing signs that they were not aware of at first, as they found alternative reasons that the child had signs of the illness. Parents’ associating their child’s symptoms, before diagnosis, with normal childhood illness has also been found in a study by Lowes et al. (2005). The learning process con- tinued with all family members feeling powerless and overwhelmed by the

Figure 2 The Ongoing Learning Process With Related Subthemes

Note: This learning process was triggered whenever the family found themselves in a new sit- uation or context.

diagnosis and the risk of disease-related complications. These findings com- plement previous research demonstrating that parents experience, among other things, shock, severe strain, and anxiety after learning that their child has dia- betes (Almeida, 1995; Koizumi, 1992; Lowes et al., 2005; Lowes & Lyne, 2000a; Northam, Anderson, Adler, Werther, & Warne, 1996). However, those studies did not investigate the whole family’s perspective. In our study, children did not fully understand the meaning of the diagnosis or that the diabetic man- agement regimen would carry on after discharge from the hospital. These find- ings correspond with a study by Hamburg and Inoff (1983). Siblings only received brief and not fully comprehensive information, mostly from their parents, and felt that they were very much unaware of their sibling’s disease. This has also been seen by Adams, Peveler, Stein, and Dunger (1991), who found that siblings had a limited understanding of the disease, even though dia- betes is a known stressor affecting all family members, including the well sib- lings (Smith, 1998). When the affected child’s general health improved with the diabetic management regimen given at the hospital and parents felt that they were able to manage the regimen, family members felt confidence, which is comparable with the results of Lowes et al. (2005) in interviewing parents of children with newly diagnosed diabetes.

Returning home again, family members in our study entered new chal- lenges as they found that the theoretical knowledge they had acquired at the hospital was no longer valid. Family members experienced new dimensions of the illness, which started the process of learning about the extent. Learning about the extent included changed relationships within the family and the affected child, and the illness became the center of the family. Parents felt that they did not take enough time with the siblings, and con- flicts arose due to the illness. Findings about parents feeling guilt and con- flict when spending more time with the ill child have also been reported by Minagawa (1997). In addition to that, the learning process included family uncertainty, as the parents felt that they did not have answers to all ques- tions arising about the affected child’s illness. This made parents feel uncer- tain and insecure, which in turn affected the whole family, findings that are in agreement with a study by Rodrigue, Geffken, Clark, Hunt, and Fishel (1994), showing that parents of children with diabetes had lower levels of parenting satisfaction and efficacy than parents of healthy children. For our families, the illness led to changes in the family system involving the whole family’s daily schedules and their plans for the future. Previous research has reported that the intensive regimen of diabetes often disrupts the affected child’s usual activities and requires disease-focused behaviors from the affected child as well as his or her family (Eiser & Morse, 2001; Ingersoll & Marrero, 1991; Lowes et al., 2005). The learning process in our

Wennick, Hallström / Families’ Lived Experience 383

study also comprised families experiencing a restricted life, as the illness influenced the family constantly. In addition to that, family members were afraid of letting the affected child out of their sight due to the risk of insulin reactions. This has also been described by Smith (1998) like a protective shield woven around the affected child by his or her family, after which the child’s illness triggered the learning process to start all over again whenever the family found themselves in a new situation or context.

Different steps were taken throughout the study to enhance its trustwor- thiness. Family members were interviewed individually to attain an in-depth understanding of family members’ lived experience, both as a whole and indi- vidually. However, interviewing children is sometimes considered a ques- tionable method of collecting data (Kvale, 1996; Sandelowski, Docherty, & Emden, 1997) because of the difficulties in differentiating between the child’s genuine thoughts and those that are an expression of what they have heard (Pramling, 1989). According to Doverborg and Pramling Samuelsson (2000), differences in interview length may vary between 5 and 35 minutes when interviewing children at the age of 3 to 8 years. Their understanding is depen- dent on concrete experiences of events rather than abstract or hypothetical descriptions (Greig & Taylor, 1999). Nevertheless, it was important to inter- view the affected children and siblings, as they have a core position and hence are principal characters in this family event.

Heterogeneity among the informants supports the credibility of findings as the families’ experience was gathered from families who varied in terms of family structure, age, living conditions, and ethnicity. All families were Swedish-speaking, thus families who were not Swedish-speaking might have experienced the diabetes diagnosis differently. However, hermeneutic phe- nomenology does not allow for empirical generalizations (van Manen, 1990, 1997) but does generate meaningful understanding and knowledge that can be used in clinical practice. The number of interviews was large for a quali- tative study to accommodate the possibility of participants dropping out before the follow-up interviews 1 and 3 years from diagnosis. By giving clear descriptions of each stage of the research process, and by presenting quota- tions from the original text emphasizing the meaningfulness of the findings, the confirmability of the findings was enhanced (Hallberg, 2002).

Conclusion and Clinical Implications

At the studied hospital, the diabetic management regimen involved a stan- dardized 14-day-long hospitalization for the affected child, during which at

384 Journal of Family Nursing

least one parent acquired basic knowledge about the illness and the regimen. After discharge, regular contact was maintained with the hospital team and primarily with the pediatric diabetes specialist nurse. Other hospitals may have other diabetic management regimens. Therefore, when discussing clin- ical implications, this limitation must be considered. When a child in a family is diagnosed as having a long-term illness, apart from dealing with the illness, the family members also have to manage normative events within the family. Studies suggest that the initial coping response of parents to the dia- betes diagnosis is considered an indicator of their psychosocial functioning and long-term adaptability (Ryden et al., 1994; Thernlund et al., 1996). When a child in the family is diagnosed as having diabetes, it is therefore essential that the whole family, including both parents and siblings, are well informed and are granted access to gatherings for diabetic education. The families in our study were given a standardized treatment at the hospital. An individual- ized treatment based on each family’s daily activities and pattern may reduce the difficulties the family experience in managing the diabetic management regimen and thus make the transition to the home smoother.

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Anne Wennick, RN, RSCN, is employed at the Children’s University Hospital in Lund, Sweden, and is currently a doctoral student in the Division of Nursing, Department of Health Sciences at Lund University. Her research and clinical interests focus on children with insulin- dependent diabetes mellitus and their families’ lived experience and health economic aspects from a longitudinal perspective.

Inger Hallström, RN, RSCN, is an associate professor and senior lecturer in the Division of Nursing, Department of Health Sciences at Lund University, Sweden. She also holds an appointment in the Vårdal Institute at Lund University, Sweden. Her research has focused on child and parental needs and participation in decision making during hospitalization, children with long-term illness and their families, and home-based care for children with long-term ill- nesses. Her recent publications include “Needs of Young Children With Cancer During Their Initial Hospitalization: An Observational Study” in Journal of Pediatric Oncology Nursing (2006, with M. Bjork and B. Nordstrom); “Decision Making in Paediatric Care: An Overview With Reference to Nursing Care” in Nursing Ethics (2005, with G. Elander); and “Striving to Survive: Families’ Lived Experiences When a Child Is Diagnosed With Cancer” in Journal of Pediatric Oncology Nursing (2005, with M. Bjork and T. Wiebe).

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