Parental Handling of Fear in Children With Cancer; Caring in the Best Interests of the Child

Journal of Pediatric Nursing (2010) 25, 317–326

Parental Handling of Fear in Children With Cancer; Caring in the Best Interests of the Child 1 Agneta Anderzén-Carlsson RN, PhD a,b,c,⁎, Mona Kihlgren RN, PhD a , Mia Svantesson RN, MSc a,b,c , Venke Sorlie RNT, PhD a,d a

Centre for Health Care Sciences, Örebro University Hospital, P.O. Box 1324, Örebro, Sweden Department of Clinical Medicine, Örebro University, Örebro, Sweden c Health, care and values-postgraduate research programme, Örebro University, Örebro, Sweden d Department of Social Sciences, Bodø University College, Bodø, Norway b

Key words: Fear; Children; Cancer; Parents

The aim of this study was to gain a deeper understanding of how parents of children with cancer handle the fear in their children. Fifteen parents of 11 children participated in focus-group interviews. Data were analyzed by a phenomenological hermeneutical method. The results suggest that the parents' handling was equivalent with caring in the best interests of the child. This included striving for the security and well-being of the child up to a certain point where the parents instead used their authority to maintain the child's physical health rather than trying to prevent or relieve the child's fear. © 2010 Elsevier Inc. All rights reserved.

Background IT IS WELL-KNOWN that children with cancer experience fear, including medical fears (Enskar, Carlsson, Golsater & Hamrin, 1997; Hedstrom, Haglund, Skolin, & von Essen, 2003; Hedstrom, Ljungman, & von Essen, 2005; Woodgate, Degner, & Yanofsky, 2003), concerns about death (Enskar, Carlsson, Golsater, Hamrin, & Kreuger, 1997; Hedstrom et al., 2003; Hedstrom, Skolin, von Essen, & Enskar, 2004; Woodgate et al., 2003), fear of alienation (Hedstrom et al., 2004), worries about being left out by their friends (Hedstrom et al., 2005), fear of an altered appearance (Hedstrom et al., 2004, 2005), and fear of the unknown

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This study has been funded by grants from The Swedish Children's Cancer Foundation, The Research Committee at Örebro County Council and Nyckelfonden at Örebro University Hospital. An overall oral presentation of the study has been given at the Swedish Health Care Congress 07 at Älvsjömässan, Stockholm, April 18–20, 2007. An abstract from the conference has been available on the Internet exclusively for attendants. ⁎ Corresponding author: Agneta Anderzén-Carlsson, RN, PhD. E-mail address: [email protected] (A. Anderzén-Carlsson). 0882-5963/$ – see front matter © 2010 Elsevier Inc. All rights reserved. doi:10.1016/j.pedn.2008.10.004

(Enskar, Carlsson, Golsater, & Hamrin, 1997; Enskar, Carlsson, Golsater, Hamrin et al., 1997; Woodgate et al., 2003). Previous research has described relationships between fear and other concepts, such as distress (Enskar, Carlsson, Golsater, & Hamrin, 1997; Hedstrom et al., 2004; Jacobsen et al., 1990), anxiety (Moore et al., 2003), and feelings of uneasiness and suffering (Anderzén-Carlsson, Kihlgren, Svantesson & Sörlie, 2007). Children with cancer identify their parents as important sources of support (Enskar, Carlsson, Golsater, Hamrin, & Kreuger, 1997; Trask et al., 2003). Parents who are caring for a child ill with cancer often find that their parental role changes (Yeh, 2003; Young, Dixon-Woods, Findlay, & Heney, 2002); they focus on learning about their child's physiological responses, monitoring health status (Martinson et al., 1999; Yeh, 2003), and meeting psychosocial needs (Martinson et al., 1999; Yeh, 2003; Young et al., 2002), as well as taking care of nursing and technical tasks (Martinson et al., 1999; Young et al., 2002). Parents of children with cancer have also described a desire to be viewed as experts in their children's care and to participate in this care (Williams, 1992). During the hospital phase of the illness, one major responsibility of the parents is to provide comfort to their

318 children (Young et al., 2002). Another prominent aspect of caregiving is asking the children to cooperate with medical treatment (Yeh, 2003); a study among mothers of children with cancer showed that the sense of responsibility that this engenders can be a source of distress. Strategies for handling this include insistence and the use of force as a last resort (Young et al., 2002). Other methods of combating refusal and resistance include explaining, making efforts to meet the child's need for calm, and accompanying the child to treatments (Martinson et al., 1999). The literature revealed that fathers have described themselves as not knowing how to respond to their children's cancer experience (Chesler & Parry, 2001). They may also regard themselves as advocates for the child and feel that they are protecting their children against the professionals; they may, for example, argue for minimizing the discomfort caused by the treatment (Neil-Urban & Jones, 2002). Parents handle the stressors that occur through their child's illness in different ways. For example, some avoid telling their child the truth, whereas others choose to reveal the truth at the same time assuring the child that they will stay by his or her side throughout the entire journey (Yeh, 2003). Some parents pray together with their child and consider that by being optimistic they are strengthening their child and themselves (Yeh, 2003). Mothers have described difficulties in dealing with their children's anxieties about the illness and knowing what information to share with them (Young et al., 2002). Parental care and parental participation in preventing and decreasing fear related to medical procedures have already been investigated by a number of researchers (Manne et al., 1992; Powers, Blount, Bachanas, Cotter, & Swan, 1993). One study found that, when parents distracted their child during a venipuncture, the child showed an increased coping ability and less momentary distress and crying. The provision of explanations during the same procedure did not result in decreased stress-related behaviors, but offering some control to the child reduced crying (Manne et al., 1992). Another study found that, if children and parents were educated about coping behaviors and coping-promoting behaviors, the child might display less behavioral distress during painful injections (Powers et al., 1993). To conclude, from previous research in the area, it is known that children with cancer experience fear. It is also known that the children regard their parents as important sources of support. However, there are studies that reveal that being a parent of a child with cancer implies many unfamiliar experiences to deal with, and furthermore, there is a paucity of knowledge regarding parents' overall experiences of handling their children's fear. This study is part of a larger project examining how parents, nurses, and physicians experience and respond to the expressions of fear displayed by children with cancer. Previous findings from this project revealed that parents understand their children's fear as suffering and as an ethical demand that they are required to address. They also stated that the fear sometimes is difficult to recognize (Anderzén-Carlsson et al., 2007). The aim of

A. Anderzén-Carlsson et al. this study was to gain a deeper understanding of how parents of children with cancer handle fear in their children. The study was approved by the Regional Research Ethics Committee in Uppsala, Sweden (2004:M-305).

Methods Participants and Setting The sample consisted of 15 parents (nine mothers and six fathers) of 11 children with cancer (aged 2–15 years). Four children were represented by both their parents. The inclusion criterion was that the child was currently undergoing cancer treatment as an outpatient. Treatment was considered to include both active treatment with chemotherapy and passive treatment such as follow-up visits. To include experiences from parents of children of various ages and at various time points after the onset of a malignant Table 1 Demographics of the Children (n = 11), as Given by Their Parents Variable Gender of the child Female Male Child's present age (years) 2–6 7–9 10–12 13–15 Time since diagnosis (years) ⁎ b1 1–3 4–6 7–9 Diagnosis Acute lymphocytic leukemia Lymphoma (B cell) Neuroblastoma Wilm's tumor Rhabdomyosarcoma Treatment † Chemotherapy Surgery Radiation Family situation Parents live together Parents are separated Child's age order among siblings First of two First of three Second of two Third of three ⁎ One child had a relapse and so is reported twice. † Four children had had more than one treatment.

n 8 3 4 3 2 2 2 5 3 2 7 1 1 1 1 11 3 2 10 1 1 2 7 1

Parental Handling of Fear in Children With Cancer disease, one coordinating nurse at each of two university hospitals was asked to help recruit participants. Parents of children in a terminal state of the illness or whose child had only recently been diagnosed were not approached nor were parents who were unable to participate in a group interview conducted in Swedish. The parents were informed about the study by the coordinating nurse, either when accompanying their child at a routine visit at the outpatient clinic or by telephone. They received written information and were asked if one of the researchers could contact them. The researcher contacted interested parents approximately 1 week later. A total of 34 parents were asked to participate in the study, either directly or via the other parent, and 17 agreed to participate. The final participant group is composed of nine mothers and six fathers (Table 1).

319 focus groups explicitly asked the parents themselves to decide what they considered to be fear in their children and explained that there were no right or wrong ways to describe fear. The moderator also asked for further clarification of some of the narratives and aimed to give all the participants an opportunity to talk about their experience by actively pointing out questions to less vocal participants and sometimes by suggesting to more talkative participants that it would be interesting to also listen to what the others had to say. A coassistant (MS) was present to observe the progress of the discussions, and at the end of each session, she asked a few follow-up questions about issues covered earlier during the session, as recommended in the literature (Krueger & Casey, 2000). The focus groups were audiotaped and lasted for approximately 2 to 3 hours. Three of them were conducted at the Centre for Health Care Sciences and one in a hotel conference room.

Data Collection Focus groups are regarded as a suitable method for gaining knowledge regarding certain experiences (Morgan, 1997) or an understanding of how people think and feel about a specific issue (Krueger & Casey, 2000; Wibeck, 2000). Focus groups have previously been used as a data collection technique among parents of children with cancer (Clarke, 2006; Jones & Neil-Urban, 2003; Neil-Urban & Jones, 2002). Participants are purposively selected to participate in a focus-group interview on the basis of their knowledge about the topic of interest (Krueger & Casey, 2000; Morgan, 1997; Wibeck, 2000). This study used four focus-group interviews, two with mothers and two with fathers. The reason for separating the mothers and fathers was that it is believed to be easier for focus-group participants to share their experiences when the group is as homogeneous as possible (Krueger & Casey, 2000; Morgan, 1997; Wibeck, 2000). However, although the groups should ideally be homogenous, it is also regarded as being constructive if the group constellation has some degree of variation to allow for contrasting opinions (Krueger & Casey, 2000). For this reason, parents of children with different diagnoses, of different ages, and with different durations since the onset of the malignancy were mixed within the groups. There is no consensus in the literature regarding the optimal number of members in a focus group; it varies from 4 to 6 (Wibeck, 2000), 6 to 8 (Krueger & Casey, 2000), and 6 to 10 participants (Morgan, 1997). Each focus group in this study included between 2 and 5 participants. A focus-group interview can vary in both the extent to which the questions are standardized and the extent to which the moderator is involved (Morgan, 1997). Because of the purpose of the study, our focus groups utilized an open approach; the parents were asked to speak freely about their experiences of their children's fear and the ways they handled it. They were asked to tell their story from the time of their children's first symptoms up to the present experience of fear. The moderator (AAC) who led the

Data Analysis The interviews were transcribed verbatim, resulting in 170 pages of text. To ensure the quality of the transcripts and to fill in missing words, the first author read all the transcripts while simultaneously listening to the tapes. The transcripts were analyzed and interpreted in accordance with a phenomenological hermeneutical method based on the philosopher Paul Ricoeur's theory of interpretation (Lindseth & Norberg, 2004). First, the text was read in its entirety several times to grasp a sense of the whole (Lindseth & Norberg, 2004). Next, this naive reading was discussed among three of the authors (AAC, VS, and MS). The next step was the structural analysis, which was performed by the first author. During this step, the text was examined as objectively as possible, and themes and subthemes were formed (Lindseth & Norberg, 2004). The structural analysis was conducted with the assistance of the QSR NVivo software package (QSR International Pty Ltd., Doncaster, Victoria, Australia). The themes and subthemes from the structural analysis were then reflected upon in relation to the naive reading (Lindseth & Norberg, 2004). Next, a process of coassessment took place to examine the credibility of the structure analysis and to enhance confidence in the truth of the data and the interpretation made (Polit & Beck, 2004); two transcribed interview texts, one with mothers and one with fathers, were randomly chosen for use in this process. After a discussion, consensus was reached about the themes and subthemes, and the themes were summarized. In the final step of the analysis, the results were reflected on in relation to the research question, the field of human life investigated, the authors' preunderstanding, and the naive reading. The text was illuminated by relevant literature and the literature illuminated by the text to disclose any new possibilities for understanding. This last phase of the method is known as the comprehensive understanding (Lindseth & Norberg, 2004).

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Results Two themes emerged in the analysis: striving for the security and well-being of the child and using parental authority to maintain the child's physical health. Seven subthemes were identified: staying close, being sensitive and adaptable, paving the way, offering consolation, facilitating knowledge, shielding, parental limitations, and acting in an assertive way. The results incorporated both preventive actions against the fear and handling of fear that had actually occurred. Although the parents described their own actual handling of the fear, they also spoke about alternative ways of handling the fear, such as when describing the other parent acting in a different way. The reasons for the parents' handling of the fear were revealed as being their opinions of what was the right thing to do, evaluated through the child's response. However, there was some uncertainty about what was—and was not—the right thing to do. The rationale for the handling of fear could be summarized in the following quotation from a parent speaking about being honest to the child: “It is hard to say what is right or wrong to do in such a situation, but we believe it has worked out fine in our family, and we regarded our handling of fear to be the right way of acting.” Parents also described limitations in their handling of fear. They revealed that under certain circumstances they used their authority toward their child by acting in an assertive or controlling way or by abandoning negotiations with the child. On these occasions, the parents focused on maintaining the child's physical health rather than striving to make the child feel secure and to give him or her a sense of wellbeing. The themes and subthemes are presented in Table 2 and further described in the texts to follow.

Striving for the Security and Well-being of the Child Staying Close The parents described a number of dimensions of staying close to the child. First, staying close to the child and offering love and care were seen as natural parts of the parental role, but it was also explicitly mentioned as a contributor to Table 2 The Themes and Subthemes From the Structural Analysis Themes

Subthemes

Striving for the security and well-being of the child

Staying close Being sensitive and adaptable Paving the way Offering consolation Facilitating knowledge Shielding Parental limitations Acting in an assertive way

Using parental authority to maintain the child's physical health

alleviating fear in the child. Explicitly assuring the child that the parents would remain physically close whatever happened during the illness was described as a means of comforting the child after the diagnosis of cancer: “And he never had to be afraid 'cause he knew we would always be at his side.” The parents spoke about telling the child that, although they were the parents, they did not know the answers to all questions. A sense of an increased closeness within the whole family was also described. The parents described how they and their child became close to each other and made some kind of a “pact,” where words were often not necessary, but where it was possible to have honest discussions. The parents spoke about not hiding anything from the child. They explicitly talked about the seriousness of the illness and the risks of late side effects from the treatment. They said that they allowed the child to talk about his or her fears and explained that it helps to let out the sadness, anger, and fear related to the illness. The parents also described how they shared their own fears with their child while at the same time pointing out to the child that their fears were grounded in their previous experience and not in the actual state of the child's illness. The parents described how they allowed their child to see their sadness and let him or her know when they shared the feelings of uneasiness or fear in relation to the treatment. Within the “pact,” the tight relationship between the child and the parent, the parents described themselves and the child as judging the hospital personnel as “good guys” or “bad guys.” These judgments were based on the experience of the individual professionals and whether they liked or disliked their bedside manner. When the parents had confidence in the professionals who took care of their child, they felt more relaxed and secure. The parents believed that this had a positive impact on the child's feeling of security. The parents described staying physically close to their child to comfort him or her. During medical procedures, they held the child in their lap, breast-fed him or her (for younger children), held a hand, stroked the head, and spoke in a comforting way. They also sat at the child's bedside in the intensive care unit and slept close to him or her during the nights at the hospital. Sometimes, the sleeping child fumbled for physical contact with the parent and thus woke the parent in the middle of the night. When this happened, the child returned to sleeping peacefully after parental presence was verified. Sometimes, both parents stayed at the child's side, and sometimes, they alternated. The reasons for this were both practical and emotional; in the latter case, it was due to one parent's inability to be close to the child at that moment, secondary to their own emotional reactions to the child's illness. In those situations, the parent staying with the child was regarded as the one with emotional strength to care for the child. When it was not possible for either parent to be with the child, they arranged for a friend to come and stay with the child: “And I told her that Steven was going to stay with her, while we were away. And she knows him, he's fun, so they enjoyed themselves while he was there.”

Parental Handling of Fear in Children With Cancer Being Sensitive and Adaptable Another aspect of handling of the child's fear was being sensitive to the child's needs and leaving decisions to the child whenever this was reasonable: “So she was the one to decide. Whatever was reasonable for her to decide about, she was allowed to decide about.” Sensitivity to the child's needs and concerns was described as being a natural part of the parental role. The child did not even have to express his or her needs; the parent could foresee them as parent and child were so close to each other. The parents described how they adapted themselves to reduce fear or other feelings of uneasiness in their child and thereby gave a sense of control to the child. When the child expressed preferences regarding what to eat or what to do during the day, the parents adapted to the child's wishes. This was exemplified by descriptions of serving the same food every day for a week or the child and the parent watching the same video over and over again. The parents spoke about how they tried to help the child find meaning and to help endure the illness and treatment that was causing fear. They also described how they adapted to the child's needs in terms of staying close and talking to the child if he or she wanted to talk but accepting silence if that was what was preferred. Another aspect of adaptability was responding to the child's wishes of how and when to undergo medical examinations or treatments, as well as facilitating various distractions that the child liked during the procedure (e.g., blowing bubbles or giving the child a particular kind of cookie, chocolate, or chewing gum). The parents also spoke about the child being the one to decide which parent should accompany the child to the hospital and being the one to decide what the parent could and could not ask the professionals about: “I had to ask for her permission before I put my questions to the professionals. Sometimes I had to argue: ‘But Patricia, look, I have to ask, 'cause this can't be right. I have to ask!’” The parents' knowledge of their own child allowed them to adapt to prevent the occurrence of fear by choosing the right time to perform certain procedures, such as changing the wound dressing when the child was not too tired and upset. The parent also spoke about preparing the child in an individual way before different medical procedures, such as taking the opportunity of the journey to the hospital to talk through with the child exactly what was going to happen when arriving at the clinic or showing the child pictures from a previous hospital visit to explain what was going to happen the next day. The parents described how they expected the professionals to adapt to the child's needs to alleviate fear or feelings of uneasiness. Paving the Way To prevent or alleviate fear, the parents “paved the way” for the child. They said that at times the manner of the professionals (nurses, physicians, or laboratory technicians) made their child fearful. In such situations, the parents described themselves as protecting the child from the

321 professionals to prevent fear or feelings of uneasiness. The parents furthermore described how they had assured the child that they would take action if necessary to calm him or her when having anticipatory fear related to some professional's manner. Examples were given of situations where the parents had asserted the child's wish to have a different nurse take care of the child on a certain shift. The parents also revealed how they tried to influence the child's care by arguing for what they thought to be in the child's best interests and in accordance with the child's needs: And I told them that the subcutaneous access wasn't working and asked them to finger prick her instead. I knew she wasn't at all afraid of that. But no, they continued, they tried over and over again. Once they continued for more than two and a half hours.

There were also accounts of giving information to the child's friends, classmates, and teachers, as well as to the professionals at the hospital, regarding different issues that they found to be important to make it easier for the child. As blisters in the mouth could cause fear related to food and drink intake, some parents had participated in the decision to insert a percutaneous enterogastric feeding tube to alleviate the risk of having to use force to feed the child or to make oral medication easier to administer: “And we never regretted the decision to let her have a PEG.…We felt that if we can help her by letting her have one, then it is a relief for her not to have to be forced to eat or take medication.” The parents also gave descriptions of administering local anesthetic cream before intravenous cannulation and adjusting the size of Band-Aids so that the child would be caused as little discomfort or pain as possible when pulling them off: “You made them as small as possible.” To alleviate discomfort and fear related to pain caused by constipation, the parents learned the optimal dosage of medication for their child; they spoke of the happiness they felt when it worked out. The parents also spoke about making it easier for the child to keep in contact with friends and school by accompanying the child to school on certain occasions that were believed to be particularly important, such as the first day of a semester, or when they were afraid that the child would lose a best friend. They also arranged birthday parties or invited other children to their home to play with the child. In making these arrangements, the parents took into account the risk of infections or other harm, such as the child being fatigued, and balanced this against the benefit to the child's emotional well-being. Offering Consolation The offering of consolation took place both in the health care setting and outside the hospital. The parents spoke about trying to help their child to keep up her spirits: Cause you have to recharge your spirits now and then, 'cause otherwise there's just misery. And I believe this recharging of batteries is much more important than

322 people might think.…So I've learned this over these years; you have to find fun experiences, so you can forget all the sadness.

The parents assured their child that they would do anything within their power to try to make the illness trajectory as endurable as possible by always remaining present and by doing their child's favorite activities. One example of the latter was bringing one of the child's friends to the hospital and announcing the friend's presence via walkie-talkie from outside the hospital ward. Other examples included going for an outing in the neighborhood, feeding the birds, going skiing, going swimming, or making other trips with the family: “Whenever possible, we have gone away to summer resorts.” The parents described talking to their child about there being a place called heaven where the dead lives on and about praying together with the child on a regular basis. They also spoke about creating a secure atmosphere and making the child think of something other than what was upsetting them, for example, by playing with a toy. Offering consolation was also described in terms of playing and joking with the child even about the thing that was upsetting them, for example, the loss of his or her hair. The parents described how they minimized the importance of side effects such as hair loss by talking about the positive effects for the child; for example, pointing out that friends pulling his or her hair was now impossible; that he or she was now like grandpa, who had no hair either; that he or she looked cool; and that he or she did not like doing his or her hair anyway. Creating a normalized atmosphere for the child, in which the parents tried to maintain routine activities, was also mentioned as a way of making the child feel comfortable: Well, in my opinion, Shelly wouldn't benefit from me talking about her illness all the time. 'Cause I believe that she'll feel better if I try to behave as usual, chatting with people and the like, although I'm very much aware that she's not well.

In relation to the hospital setting or the illness itself, the parents spoke about assuring the child that the treatment would cure him or her and that there were alternative treatments to use if the first one did not have the expected effect. The parents also spoke about offering consolation when they were trying to calm down and distract the child during medical procedures by playing, occupying the child by talking about other things, by using a toy or blowing bubbles, or by singing certain songs over and over again: We sang, we sang, and it was the same song over and over again.…We sang it on any occasion, when she was having an injection, having any treatment, whatever she was meant to do, when she was going to sleep.…Our job was to sing and do these movements with our hands. Then she was, it was our way of distracting her.

The parents talked about leaving it to the professionals to perform scary procedures so that they could focus on

A. Anderzén-Carlsson et al. comforting the child, for example, leaving it to the professionals to administer an enema instead of administering it themselves. The parents tried to maintain a positive attitude, and they tried to help the child to view the illness, treatment, and side effects from a positive perspective. This was done by assuring the child that the hospital examination would work out just fine and praising him or her as a “good boy” or “good girl.” They also described trying to offer some positive experiences to the child in connection with visits to the hospital. This could be done as a reward after the treatment or as an incentive mentioned in advance. Having an ice cream, going shopping, going to the café, or getting a toy were among the treats mentioned: “You'll get an ice cream if you just undergo this test.” Facilitating Knowledge Preparing the child for what was going to happen was mentioned as a means of alleviating fear related to medical procedures. Some prepared their child in more detail, whereas others just gave a brief description of what was going to happen. The parents described this kind of preparation as being made in an honest and gentle way but also with the aim of calming the child down. Preparation took place in a dialogue with the child by answering the child's questions, using photos from previous experiences, and reading storybooks related to what the child was about to undergo: And that was pretty good, we have been reading the book, what's its name, Curious George. He had swallowed a piece from a jigsaw puzzle, and they had to x-ray him. So we'd read that book quite a few times.…So, I believe it was good that we had prepared him [for the x-ray] by using the book, he then recognized and was familiar with the situation.

It was seen as important to be able to give explanations for the child's concerns to alleviate fear. Helping the child to articulate questions to the professionals was also mentioned as a means of reducing fear. Instead of threatening the child, the parents tried to motivate him or her to take medication. The parents spoke about explaining to the child why certain things had to be done and what could result if the treatment regimens were not followed. Sometimes, motivating the child was performed in collaboration with the professionals at the hospital. The parents said that they had been given a special set of pedagogical magnetic symbols by the hospital, which they used in play with their child as means of explaining the illness. The magnetic kit was also used to explain the need for medication and to explain that the child would become bald due to the treatment. The parents also spoke about reading special books on the same topics together with their child. Shielding This subtheme covered the various handling methods aimed at protecting the child from being upset and frightened. It was often connected with matters that aroused

Parental Handling of Fear in Children With Cancer strong parental emotions. To not frighten the child, the parents tried to keep their feelings to themselves without showing their fear or sadness in front of the child, but they were not always able to achieve this goal. To some degree, they avoided talking to the child about the seriousness of the illness or about other children passing away. Other children's deaths were revealed in terms of no more pain or suffering for the dead child: Well, I explained that she had died [a friend of the daughter]. Maria [the daughter] got upset, and well, we hadn't told her that cancer could be fatal, and 'cause I didn't want her to be worried and scared, I told her about it in the same breath yet at the same time reminded her that her friend was sometimes sad and in pain when they met and that Maria's own cancer had been removed. And she accepted that.

Another example of avoiding upsetting the child was given; one parent told of concealing the truth of what the child had undergone as she knew that the child feared the injection that she had been given during anesthetic. The parents also spoke about having a vigilant attitude toward comments from the child's friends regarding the child's baldness. When the parents recognized comments or actions relating to the baldness, they confronted the friends by talking about it in a disarming way to prevent fear and feelings of uneasiness in their child. Parental Limitations Two kinds of parental limitations were described by the parents. The first was the limitations the parents experienced in their parental responsibility of protecting their child from suffering and in their ability to fully share the child's experience. The second was the limitations that the parents put on their child to give some boundaries and thereby some kind of normality and security. The parents revealed that it was beyond their power to protect the child from some of the things that caused fear or feelings of uneasiness. The child's despair over hair loss was particularly hard to find any consolation for. The parents described themselves as having had the feeling that there must be alternative ways of performing the treatment and thereby questioning the necessity to continue when witnessing their child's fear related to medical treatment. They described themselves as doing everything they could to make it easier for the child but also realizing that the child had to undergo the procedure. Despite the child's crying and objections and need for physical restrain, parents felt that sometimes there were no alternatives. On some occasions, they had to be the ones to physically restrain the child so that the professionals could perform their tasks: “The overall feeling was, oh God, do they [the professionals] really have to do this? But they have to, so it was just a matter of holding still, you know.” Sometimes, the parents felt unable to support their child because they themselves were so shocked by the situation. They expressed an acceptance of some of

323 their limitations, such as them not being the ones to decide who to be the child's primary nurse for a certain shift and also that it was impractical for the child to have anesthesia for some treatments. The parents described having to admit to the child that they could not fully share his or her feelings. Still, they told the child that because they had been by the child's side throughout the illness, they did have some understanding of what he or she had gone through emotionally. The parents expressed the wish that there would be a professional available to address the child's mental health needs as the parents found it difficult to deal with those feelings and concerns. In addition, although the parents played with their child, they could not substitute for the missing friends. The parents also spoke of occasions when they did not completely respond to the child's wishes but instead instituted limitations. For example, the parents redirected the child's fear response, thinking of another strategy more appropriate such as quickly rather than slowly removing the child's Band-Aids. Another reason for setting limitations was that leaving the child to decide everything was seen as a disservice to her: “…the child cannot be the one to decide whether to go to the hospital or not. If you have an appointment, you just have to go there.” The parents also described how they sometimes physically distanced themselves from the child by using housework as a means of extending the child's access to them.

Using Parental Authority to Maintain the Child's Physical Health Acting in an Assertive Way Under some circumstances, the parents coped with the child's fear without taking the child's will or fear into consideration. Examples were given of situations in the hospital setting where the parents themselves had to use physical restraint with their child, such as when he or she was undergoing diagnostic treatments. In other situations, the parents felt that there was no room for negotiating, even if this caused the child fear or feelings of uneasiness, such as taking tablets or going to the hospital for checkups or treatment: “…and if she didn't want to do it, I said you have no choice.” At times, there were also things that the parents insisted that the child should undergo in the home setting regardless of his or her fear, such as changing wound dressings or making the child eat something.

Discussion The aim of this study was to gain a deeper understanding of how parents of children with cancer handle fear in their children. The findings of this study will be discussed in relation to previous studies conducted and selected philosophical literature.

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Parents stated that taking care of the child, staying close, and offering love and care were only natural for them. This parental perspective has similarities with the Danish philosopher Løgstrup's (1997) writings about natural love. Previously, parents of children with cancer have expressed a wish to be seen as experts with their children's care, to participate in their care (Williams, 1992), to comfort their child (Young et al., 2002), and to prepare him or her for medical procedures (Martinson et al., 1999; Yeh, 2003; Young et al., 2002). Parental handling of fear may be considered a dimension of their natural love and care for their child, as described in the focus groups. Because of the cancer, this natural love and care had somehow been extended to also incorporate care related to the illness (Young et al., 2002). Løgstrup (1997) has stated that mercy is a spontaneous utterance of life, something that is “activated” when a fellow human being is sensed to be in need. The Swedish theologian Erik Blennberger (1999) described mercy as a classical argument for giving care and defines it as being synonymous with humanity: Humanity and mercy means that we notice other human beings' needs and suffering. The other person becomes a fellow being, for whom we have a responsibility, based on sympathy and maybe also compassion. This responsibility does not depend on the other's performances or dignity in any respect (p. 40).

Although the parents did not explicitly use the word compassion when speaking about their children being afraid and enduring frightening procedures, their stories revealed compassion and recognition of the child's needs and suffering. Hence, one possible interpretation is that, by handling the child's fear, the parents were showing mercy. In providing care, parents indicated that they were motivated to act in the best interest of their child by responding to their child's needs. On a comprehensive level, this can be interpreted as mercy, as described earlier. It can also be related to Løgstrup's (1997) description of the responsibility inherent in human nature to answer the ethical

Figure 1

demand of the other person. This demand is always present. It is unspoken and should not be confused with expectations or wishes but should rather be seen as an obligation to take a stand for what is seen as best for the other person. This standpoint should be the basis for action, even if it is in conflict with the other person's expectations or wishes. The fulfillment of one's own needs is considered secondary to responding to the needs of others. Parents concerned with the best interest of the child strived to respond to the child's need for security and the child's physical and emotional well-being despite their own feelings of despair. The handling of fear can be sometimes be seen as illustrating an ethical dilemma for the parents, according to a definition by Beauchamp and Childress (2001, p. 10): “Circumstances in which moral obligations demand or appear to demand that a person adopt each of two (or more) alternative actions, yet the person cannot perform all the required alternatives.” This definition seems to illustrate the parental dilemma related to focusing on the security and well-being of the child to minimize the child's fear or facilitating the maintenance or restoration of their child's health status which can increase child's level of fear. This ethical dilemma seemed to cause a breaking point in the parents' choice of handling methods, which is illustrated by the two themes in Figure 1. Within the two themes, different priorities were given for dealing with the child's fear. When using parental authority to maintain physical health was in focus, alleviating the child's fear was given a lower priority than that when the focus was on striving for the security and well-being of the child. This reasoning has similarities with the findings of Woodgate (2003), who revealed that “although parents of children with cancer wanted their children to be psychologically and physically comfortable, having their child survive cancer took priority over reducing their child's short-term suffering” (p. 144). During the illness trajectory, the parents offered consolation to the child in many different ways. Research on professional caring has revealed that consolation has two

Parental handling of the child's fear: Caring in the best interests of the child.

Parental Handling of Fear in Children With Cancer sides; one is caring consolation, and the other is non-caring consolation. In caring consolation, the professional carer genuinely shares the experience with the one suffering. In non-caring consolation, the professional carer is more distanced, and the consolation can be seen as a kind of “first-aid consolation”—that is, consolation that eases the situation for the suffering person in the short-term but not in the long run (Roxberg, 2005). These two faces of consolation seem to be transferable to the parents' offering of consolation. Caring consolation was predominant within the narratives, for example, when the parents were trying to help their child to keep his or her spirits up or assuring the child that they would always remain present. However, noncaring consolation was also present, for example, when the parents praised the child as a “good boy” or “good girl” when undergoing medical procedures or when trying to minimize the importance of hair loss. The Finnish nurse–philosopher Katie Eriksson stated that compassion is the pure source of caring and that a person's own suffering prohibits compassion (Eriksson, 1994). On the basis of this reasoning, it is possible that what we have interpreted as non-caring consolation could be a result of the parents themselves suffering so much because of the child's illness and suffering that compassion was almost impossible. Hence, the parents were unable to share the child's fear and instead tried to soothe it by means of non-caring consolation, such as when they joked with the child about losing her hair and thereby tried to minimize the importance of the hair loss.

Methodological Considerations Previous literature has illuminated that there are differences in mothers' and fathers' concerns regarding being a parent of a child with cancer (Yeh, 2003), and fathers of children with cancer have previously been reported as not knowing how to handle their child's experiences (Chesler & Parry, 2001). We found that being able to recruit both genders for participation in this study was valuable. Although the intent was not to compare the two genders' narratives, the different focus-group discussions indicated that there are differences in perspectives, which we emphasize should be further investigated in future studies. Fifteen parents ended up participating in the study. For ethical reasons, the 19 who declined to be interviewed were not asked to explain the reasons for their standpoint (Polit & Beck, 2004). Even so, some of the parents gave various explanations, for example, their child experienced no fear, they wished to leave the cancer experience behind, or the timing of the interviews was not good. As the children of the parents in this study were at various different time points from the onset of cancer (Table 1), it is reasonable to believe that the narratives of the interviewees provide a wide representation of different methods of fear handling and care. As previous literature has pointed out fear in different phases of the illness trajectory (Clunies-Ross & Lansdown, 1988; Haase & Rostad, 1994; Kvist, Rajantie, Kvist, & Siimes, 1991; Woodgate et al.,

325 2003), it seemed important to collect information from the different phases. It could be regarded as a limitation that only two parents participated in one of the interview sessions as according to the literature this is regarded as an insufficient number of participants (Krueger & Casey, 2000; Morgan, 1997; Wibeck, 2000). During this interview, the researchers felt that the two participants were mainly communicating with the researchers, which is not the aim of a focus-group interview (Morgan, 1997; Wibeck, 2000). However, when listening to the taped interview, it was possible to trace an interaction between the two participants, and therefore it seemed appropriate to include the interview in the study despite the possibly insufficient number of participants. A basic assumption is that participants in focus groups are interested in sharing and comparing their ideas and experiences (Morgan, 1997; Wibeck, 2000). The researchers felt that all the interviews in this study revealed a great willingness to share both satisfying and emotionally difficult experiences. It is important to keep in mind that the intention of a phenomenological hermeneutical method is to reveal truths about being in the world. As it is believed that the whole truth cannot ever be fully understood, possible meanings are searched for (Lindseth & Norberg, 2004). Although the purpose of a qualitative study such as this is not to generalize (Polit & Beck, 2004), on the basis of the researchers' clinical experience, it seems plausible that the results from this study are transferable to groups of children and adolescents other than those with cancer. For example, in clinical praxis, parents of children with other chronic diseases have described how their parental efforts are to a certain degree about striving for well-being and security for their child but that there is a point where other values have priority.

Conclusion and Clinical Implications This study has shown that parents utilize many strategies when handling their child's fear. The parents are not always certain of the optimal handling of the fear. Still, they act out of what they believe to be the best for their child. Our interpretation is that the parents' care of their child with cancer, including the handling of the child's fear, is based on natural love and mercy and that the parents are acting in the best interest of the child and thus answering the ethical demand placed on them. Our findings also highlight that there seems to be a breaking point in the parents' care; up to this breaking point, the parents give priority to their child's well-being and the feeling of security in fighting the fear, but after passing this breaking point, the handling of fear is given a lower priority, and maintenance of the child's physical health becomes more important. This breaking point is not absolute. Health care professionals therefore need to be vigilant to recognize when the individual parents are at the point of needing help. The professionals should in their daily work try to acquaint themselves with the areas which the parents find especially difficult to be able to support them in an individual way. For

326 example, if the child is in need of physical restraint during a physical examination, they should determine if the parents wish to be the ones to restrain their child or to support their child while the child is restrained by staff. This study might create reflections among professionals about similar situations and about the importance of keeping in mind that parents not only are in need of support but also are also valuable recourses in the care of their child, and it is important to confirm them as such. Further examination of parents' needs for support in handling their child's fear is warranted, and yet another important topic for further investigation is to explore what support the children themselves prefer when they experience fear during treatment of cancer.

Acknowledgments This research was supported by grants from The Swedish Children's Cancer Foundation, The Research Committee at Örebro County Council, and Nyckelfonden at Örebro University Hospital. We wish to thank the parents who participated in this study by generously sharing their experiences with us. We also wish to thank Karin Gustafsson, Monika Hagman, and Agneta Lundin for their help with coordination; Maria Ekholm for transcribing the text; and Erica and Bo Anderzén for revising the English.

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