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research-article2014

JPOXXX10.1177/1043454214521693Journal of Pediatric Oncology Nursing 31(3)Ångström-Brännström and Norberg

Article

Children Undergoing Cancer Treatment Describe Their Experiences of Comfort in Interviews and Drawings

Journal of Pediatric Oncology Nursing 2014, Vol. 31(3) 135­–146 © 2014 by Association of Pediatric Hematology/Oncology Nurses Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043454214521693 jpo.sagepub.com

Charlotte Ångström-Brännström, RNT, PhD1 and Astrid Norberg, RN, PhD1,2

Abstract Children with cancer often undergo a long course of treatment, described as painful, and associated with feelings of discomfort and need of comfort. The aim of this descriptive interview study was to investigate how children, aged 3 to 9 years, undergoing cancer treatment describe their experience of comfort. The children were interviewed and asked to make drawings. Data were content analyzed and four themes were constructed—enduring discomfort, expressing discomfort, finding comfort, and comforting others. The findings show that the children endured discomfort during treatment, and were sometimes able to express it. They found comfort especially from their family and from hospital staff. The children also described that they comforted family members. The findings are in accordance with previous research about children’s and adults’ accounts of comfort. An incidental finding is that parents were surprised when they listened to the children’s accounts of their experience of discomfort and comfort and achieved a better understanding of their children. Keywords cancer, children, comfort, endurance, family, hospital staff, interview

Introduction To be diagnosed and live with cancer affects a child’s whole life—physically, psychologically, and socially. Children often experience pain, fear, and worry from the disease, treatment-related pain, and side effects of drugs (Hildenbrand, Clawson, Alderfer, & Marsac, 2011). Children with cancer who have had to endure invasive and strenuous treatment have described illness as a horrible experience (Griffiths, Schweitzer, & Yates, 2011). Their experiences vary with their developmental stage (Kane & Primomo, 2001; Koopman, Baars, Chaplin, & Zwinderman, 2004). They can experience changes in physical appearance, boredom, inactivity, sadness, frustration, and anger, and also being separated from and missing their family and home, friends, and sometimes pets (Hildenbrand et al., 2011; Horstman & Bradding, 2002; Hopia, Tomlinson, Paavilainen, & Åstedt-Kurki, 2005). The children’s families are also affected and are described as experiencing a crisis that affects them all (Hildenbrand et al., 2011). Morse (2001) describes that people in traumatic situations often oscillate between endurance and emotional suffering. To endure means control of emotions to save energy. Emotional suffering occurs when people release their emotions, for example, by crying. During

endurance, they cannot experience comfort as they can during emotional suffering. When children experience suffering, discomfort, or distress, they need comfort. Comfort can be regarded in a neutral way as absence of discomfort and more positively as more than absence of discomfort (Kolcaba & DiMarco, 2005). Research has shown that children can be comforted in various ways: being touched (Chang, 2001), looking at or reading a book, listening to a story, playing (Devereaux-Jordan, 1997; Haiat, Bar-Mor, & Shochat, 2003), being close to and spending time with parents and being held on their lap (Kankkunen, VehviläinenJulkunen, Pietilä, & Halonen, 2003; Pölkki, Pietilä, & Vehviläinen-Julkunen, 2003). Parents of ill children cared for at home or in hospitals expressed in interviews that their presence was essential in relieving distress for their children during cancer 1

Umeå University, Umeå, Sweden Ersta Sköndal University, Stockholm, Sweden

2

Corresponding Author: Charlotte Ångström-Brännström, RNT, PhD, Department of Nursing, Faculty of Medicine, Umeå University, SE 901 87 Umeå, Sweden. Email: [email protected]

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treatment (Kars, Duijnstee, Pool, van Delden, & Grypdonck, 2008; Ångström-Brännström, Norberg, Strandberg, Söderberg, & Dahlqvist, 2010). Parents described that music therapy comforted children with cancer when in hospital (Barrera, Rykov, & Doyle, 2002). Nurses often can effectively distract children and get them to hold on and tolerate a difficult situation a little longer (Proctor, Morse, & Khonsari, 1996). Morse (2000) found that trusting the nurse is important to obtain comfort. Nurses in pediatric settings work hard to get to know children and to develop trusting relationships with them by learning about the children’s condition and treating them as persons (Bricher, 1999; Espezel & Canam, 2003; Horstman & Bradding, 2002). The staff members are involved in painful and frightening procedures for children; they use a range of strategies to gain the confidence and cooperation of the children. Establishing trust takes time and honesty is reported as important (Bricher, 1999). The need to carry out painful procedures and at the same time trying to maintain trusting relationships with children is contradictory. Trust is seen as important by pediatric nurses, but occasionally breaking trust becomes necessary when completing a procedure (Bricher, 2000). Relationships with children with chronic illness can span years. When nurse and child know each other, they sometimes can continue their conversation at each hospital stay, meaning that they proceed where they left off (Bricher, 1999). Ångström-Brännström, Norberg, and Jansson (2008) studied experiences of comfort among children aged 4 to 10 years with chronic illnesses. The children found comfort when being physically close to their family, when feeling safe and secure at the hospital ward, and when they felt that nurses were there for them. Some of the children described that they comforted their parents and siblings. When Cantrell and Matula (2009) retrospectively studied childhood cancer survivors’ experiences of being cared for and comforted by pediatric nurses, they found that childhood cancer survivors found physical and emotional comfort from nurses’ caring acts. Nurses’ truthful explanations, their clinical competence, and, being seen as an individual, not as a patient, provided comfort to them (Cantrell & Matula, 2009). When hospitalized children aged 5 to 18 years heard reassuring words from nurses, they experienced comfort (Schmidt et al., 2007). Children with cancer reported that relationships with family, hospital staff, pets, and friends had a positive impact on them (Griffiths et al., 2011). Carnevale and Gaudreault (2013) examined 3- to 17-year-old children’s experiences of critical illness. They found that sources of comfort for the children included parents, visitors, friends, stuffed animals, entertainment, and play. Comfort has been described as an incidental finding in some studies that did not aim to describe comfort. In their

study, Horstman and Bradding (2002) interviewed and asked children to make drawings about their views on professionals and information given during care. They found that the children, 6 to 10 years old, commonly expressed fear and anxiety. The children thought that nurses should be able to see when they needed help and they regarded nurses as comforters. Woodgate (2006) interviewed 12- to 18-year-old adolescents with cancer about important social support during cancer treatment. She found that the adolescents wanted support from the health care team, from special friends, and from their family. They found comfort from others being there, some of which also carried out some type of act that helped the adolescents to feel better, by distraction and thinking of something else. Comfort from parents is described by Björk, Nordström, and Hallström (2006) in an observational study of children with cancer younger than 7 years, during hospitalization. No surveys about comfort as experienced by children with cancer were found. We found only one study about comfort as narrated by very young children (ÅngströmBrännström et al., 2008). Therefore, the present study can contribute new insights into the life world of young children with cancer. Children undergoing cancer treatment are faced with long hospital stays and treatments, and they need comfort when they are in pain, scared, and tired. What is it that children with cancer consider to comfort them? Thus, the aim with the study was to investigate how children undergoing cancer treatment describe their experience of comfort.

Method Participants and Setting Ten families with a child, aged 3 to 9 years, diagnosed with cancer, admitted to a pediatric oncology ward in a hospital in northern Sweden, were asked to participate in the study that included interviews with the parents reported by Ångstrom-Brännström, Norberg, Strandberg, Söderberg, and Dahlqvist (2010), nurses (will be reported elsewhere), and the children. One family declined participation. Four girls and 5 boys who were diagnosed with cancer and had undergone their initial treatment for cancer took part in the study. They were receiving chemotherapy, and the goal was cure. The children were diagnosed with leukemia (n = 5) and solid tumors (n = 4). Initially, children and their parents spent most of their time in hospital, but later they could spend more time at home, that is, between treatments.

Procedure and Ethical Considerations The parents were given written and oral information about the study when their child was admitted to

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Ångström-Brännström and Norberg hospital for treatment by a nurse on the ward. When the parents agreed, their names were forwarded to the first author (CÅB) who met with them and provided further information about the voluntary nature of participation and that they and their children would continue to receive all services, even if they did not participate in the study. The information also stated that if they chose to participate, they were free to withdraw during the interviews without stating a reason. They were ensured confidentiality and anonymous presentation of the findings. After this information, they were given time to decide whether to participate or not. Nine children of parents that had consented to participate also gave their assent to participate after they had been given simplified information. Seven children assented to having drawings published. The study was approved by the Ethics Committee of the Medical Faculty, Umeå University, Umeå, Sweden (05-017M).

Data Collection Personal interviews were performed with the children by CÅB, who met each child together with a parent twice before the interview took place. At the first meeting, she informed them about the study, the second time, CÅB, the child, and the parent got to know each other, and the third time, the child was interviewed. The parents were invited to stay during the interview and all but two did. The questions were open-ended and concerned the children’s experiences of comfort: Please, tell me about a situation when you needed comfort. Please, tell me about a situation when you felt comforted. When you need comfort (like when you are sad, or in pain) who or what is it that can comfort you?

Follow-up questions were asked, such as, “What do you mean? Please, tell me more about that! What did you think?” The tape-recorded interviews lasted 20 to 60 minutes. A secretary transcribed the interviews verbatim and CÅB checked the transcription against the tapes. The children and their parents together decided when it was appropriate to interview. They decided time and place and sometimes short breaks were needed. During the interview, the language was adjusted and simplified to the children’s age and vulnerability. As they were very ill and tired, the interviews were short and CÅB avoided making them feel too burdened. In spite of this, children and parents wanted to proceed with the interviews. To enhance communication, CÅB asked the children to make a drawing about comfort (Carter & Ford, 2013). All children were allowed to choose papers, pencils, crayons, water colors, and felt-tipped pens, respectively,

and decided themselves how they wanted to depict comfort in their drawings. During and after the interview, CÅB discussed the drawings in simple language with each child to understand what the child meant (Driessnack, 2005). Some of the parents that overheard the interview with their child explained that they were stunned when listening to what their child said. The children talked about experiences that they never talked about before, for example, the importance of having the parents close and the importance of nurses’ caring acts—issues that parents had not asked about. The parents said they had taken things for granted; they thought that they knew what their children thought.

Data Analysis An inductive qualitative content analysis was performed inspired by Graneheim and Lundman (2004). The transcribed interviews were read through several times to get a sense of the content. Then the interview text was divided into meaning units comprising sentences or phrases with similar meaning. The meaning units were condensed, coded, and compared. According to differences and similarities, four themes were constructed— Enduring Discomfort, Expressing Discomfort, Finding Comfort, and Comforting Others. The labeling of the themes was inspired by Morse (2001). During the analysis process both authors reflected on the text and discussed the interpretation until they reached agreement. In the next step, the authors looked at the drawings in relation to each child’s interview and his or her discussion with CÅB about the drawing. Last, they sorted drawings to illustrate themes. Thus, the findings were triangulated (Patton, 2002).

Findings Below, we first show one or more drawings about the themes and then we illustrate them from the children’s descriptions in the interviews.

Enduring Discomfort The children expressed their difficult situation and enduring discomfort in the interviews and in the drawings. Drawings.  A 5-year-old girl painted this drawing (Figure 1) depicting her jumping on a trampoline. She was undergoing treatment and suffered from the side effects of that treatment. Her hands were stiff and she could not use a pencil, but she was able to paint with watercolors. She told CÅB about the drawing: “I am jumping on the trampoline. Your see here’s my trampoline at home . . . I really want to go home . . . A lot!” While she was talking, she

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Figure 1.  Figure 2. 

started to cry. She was missing home, wanting to see her father and brother and to see her friends. Figure 2 shows a drawing made by a 4-year-old boy. He explained that he often drew bears. The bear is on the left side (outline of a bear), and in the middle there is a tree (black and green). The bear lives in the wood. The boy talked about it as dangerous and explained that he took his gun and shot it. Another two children who also made drawings of monsters (dinosaurs) decided to keep their drawings. Interviews.  In the descriptions of discomfort, children were concerned with longing for home, longing for their parents who stayed at home with siblings, having pain, going through painful and scary treatments, and seeing their parents’ worries. The main sources of help to endure discomfort were family, hospital staff, and self. When the children had to undergo different kinds of examinations and treatments or when doing something they found unpleasant, they mentioned various distractions as helping. One of the children said, “I’m a little afraid of the tests . . . you know, I usually scream owww, but then I usually sit on my mother’s lap . . . It hurts, but then my mother said, ‘think about that film we saw.” It was comforting to be read to. “Sometimes she (Mommy) reads to me. From a book we are reading, and then I think of other things.” Children appreciated when parents were able to distract them so they did not have to consider what was going on and did not see what happened, for example, the insertion of a port needle. All children mentioned using toys and playing games. They frequently played with their parents when they had to spend long hours in bed or in their room during treatment. Play was described as an activity that counteracts boredom. All children described that being close to parents helped them. To feel their parents’ physical closeness, sitting on their lap, and holding their hand meant that the

children felt secure and gained comfort in situations that became frightening, such as, for example, during blood tests. One girl said, “I sit on my mother’s lap, and if I cry, she can comfort me. She sits and then she hugs me. She talks, and tells me everything will be OK.” Another help to endure that the children described, was the hospital staff. One girl, who stayed in hospital for a long time said: “. . . you should comfort children so they don’t get sad. Children in the hospital can get sad sometimes.” Children most often mentioned nurses. Nurses who explained and informed the children about various treatments and procedures, what kind of medication they had, and other things related to treatment, were regarded as being kind. Children appreciated when explanations and information were combined with humor. They described talking with nurses during procedures and treatments and appreciated small conversations. Children sometimes described help to endure discomfort as something very concrete and material, such as applying a Band-Aid to a sore or having a signal button at the bedside. Applying a Band-Aid to the sore helped ease the pain and the button by the bed meant security and ability to call for help. Children knew that the nurses were at their side, ready to give them a hand. All they had to do was push the button.

Expressing Discomfort Drawings.  A 5-year-old boy, who only made drawings in black and brown colors when he was very ill, explained that he started to paint with light colors when he was feeling better (Figure 3). Interviews.  The children were faced with treatment; they had to endure examinations and different kinds of procedures, such as spinal taps and blood tests. They had no

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Figure 3. 

choice, and often expressed it as painful and scary, although they were carefully informed and knew what was going to happen. One girl talked about her fear: “When I have to take many tests or examinations. . . I usually cry, but it goes over quickly . . .” All children talked about being sad, crying, and screaming. To be able to express feelings openly and show that they experienced fear or pain, was a way to handle fear and made them feel better. A girl said, “Yeah, it hurts a lot (the needle). Sometimes, they put a needle in my finger, and sometimes in my arm or the port.” She was frightened and expressed that despite Emla she found it very painful. “Yes . . . because when they put in the needle, it still hurts even though I get Emla.” She went through the same procedure over and over again and every time she cried and screamed. Crying and screaming became a way to handle pain and fear.

Finding Comfort Drawings.  The girl who made the drawing in Figure 4 was 4 years old. She described her experience of the hospital stay. In the middle of the drawing, there is a square, with a door and a watch (a circle) which is the room where she was isolated. She had to stay in her room because of risk of infection. She said that she found comfort from her mother and father (to the left) who were staying with her, playing, and she said she was longing for home, the house to the right.

Figure 4. 

The boy who made the drawing in Figure 5 was 5 years old. While he painted, with some help from his father, he said the whole family comforted him during treatment: mother, father, brother, and a puppy. “They are here with me.” The boy found comfort from his family, who spent as much time as they could together, at the hospital and at home. The drawing in Figure 6 was made by a 6-year-old girl. Her arm had been amputated and she lost her hair during treatment. She had to learn to write and draw with the other hand. The drawing shows how she looked before treatment, with arms and long, beautiful hair. She told CÅB about her aunt, who often came to visit her in the hospital. The girl found comfort from seeing her. Her aunt always suggested something fun to do and they had secrets no one else knew of. The drawing shows the girl (left side) standing close to her aunt and the aunt’s children. They are at home, talking and going for a walk, the sun is shining and the girl is happy. The same girl, 6 years old, also drew a story about enduring discomfort, expressing discomfort, and finding comfort. She explained that the story is about her. It is about a princess, with long hair, nicely dressed, “Story of

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Figure 5. 

Figure 6. 

the princess in the blueberry forest.” The 5 drawings are shown in Figure 7A-E. Figure 7A shows the house where the princess lives, a castle with crowns. She lives in the castle with her family. The next drawing (Figure 7B) depicts the nice princess, happy and smiling, with long hair and two arms. Figure 7C shows the princess. She wakes up and finds out that she had been bewitched. She did not look like she did before and she did not recognize herself. Her body had changed and she saw big lumps. She felt unhappy and did not know what to do. The next figure (Figure 7D) shows how she desperately cried when she looked in the mirror. The last drawing (Figure 7E) shows that she turns back to her normal self again, and the story ended happily. Interviews.  The main sources of comfort were family, hospital staff, other children at the hospital, and self.

All children had one or both parents staying on the ward during treatment and their presence comforted. No matter how difficult their experience was, a parent’s presence always seemed to comfort. Children described that they experienced glimpses of comfort while being helped to endure discomfort. A girl said: “Mommy usually comforts me when I’m sad. Then I stop crying, but I don’t get happy, but it feels better anyway.” Another child said, “But my mother was with me, so she comforted me and hugged me and talked and told me that I just have to try to stand it.” One of the girls mentioned that she found comfort when her mother gave her a massage when treatment caused her pain and worry: “She (mother) gives me massage.” A way to find comfort mentioned by a boy was “to touch mommy’s ears and hair.” Siblings were also described as comforters. Children missed their siblings when on the ward. They waited for their siblings to visit them. The children’s usual everyday contact with siblings could not be sustained, but a visit meant comfort, someone to play with and to do something fun with, and was an experience that meant a lot. One girl said that she found comfort when she was “sleeping close to my little baby brother.” Children talked about grandparents who visited them in hospital, kept in touch, and spent time together with them. One girl said, “Grandpa is my best friend. He can always come and be with me (at home or in the hospital).” He assisted with practical tasks and accompanied her during care at home and in the hospital. One of the children had a close relationship with her grandparents and spent time with them. She found comfort from being close to them and they showed great concern and cared for her. Grandparents’ and other close relatives’ caring and participating in the children’s daily life comforted the children. At home, one girl stayed with her grandparents for a while when she was susceptible to infection and described doing things like going fishing and being outdoors. She said, “Grandpa and grandma can always comfort me.” Some of the children said that “being together with the whole family” comforted and made them think of other things than the disease. Nurses being kind were described as comforting: “One nurse is very kind. I love to see her because she is very kind . . . she comforts me.” At bedside, the children found comfort when nurses took time and talked with them: “When she talks with me she comforts me. She comes to my room and is sitting there talking to me . . . I tell her about school and my friends and she listens. She is here (at the ward) almost every time that I am here.” Some of the children said that when their parents could not stay, they could “spend time with the nurses.” Continuity, seeing the same nurse many times, seemed to strengthen the children’s trust in the nurses. It was

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Figure 7. 

comforting when nurses sometimes talked for a while or played with the children. Children found comfort from playing. They played together with other children on the ward. They frequently went to the play therapy unit, where they had access to toys and played with them, played games, and played about medical themes. They also engaged in arts and crafts together with other children and the staff working there. Children played by themselves in bed or in their room. They often brought their own toys to the hospital. Using

stuffed toys and blankets was described as self-comforting. One girl said, “I want to have my own toys. I play with the doll. . . . I play with my doll if my mommy isn’t here.” A boy described using his sister’s stuffed toys and sleeping in her bed when he felt sad and needed comfort. One of the boys explained that he comforted himself by using his toy dogs (stuffed dogs). He said: “If no one can comfort me, I comfort myself.” He had named those dogs after his favorite nurses at the ward. All children had stuffed toys (dog, bear) or another toy (doll), or a blanket that they used for comfort during the hospital stay.

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Another child mentioned that he “found comfort when watching TV and playing games on the computer.” A girl who just had learned to read, found comfort when she read to herself. Other various techniques of distraction mentioned were to “think about the dog at home,” longing for and looking forward to doing something, for example, wood carving and sledging and “thinking about going home.” Sleeping and resting were other ways to find comfort, and one of the girls said that “everything is much better afterwards.”

Comforting Others The children experienced their parents’ sadness and crying during the hospital stay. They saw their parents being worried and scared. Some of the children mentioned that they comforted family members. One girl comforted her parents when they were sad. She said, “I often comfort my mother and father, but mostly my mother when she cries. . . with a hug.” A girl said that she comforted her parents, most often her mother, by embracing her. Another said that she comforted her little brother “by giving him a toy and by staying close to him.” Some of the children said that by talking they were able to comfort family members.

Discussion In this study, children undergoing cancer treatment described in their own words and from their own perspective how they experienced discomfort during hospital stay, and what they found comforting. An incidental finding was that when parents listened to their children’s accounts during the interviews some were stunned as they had not understood their children’s experiences of discomfort and comfort before. The children’s drawings, together with the interviews, provided them a deeper understanding of the children’s experiences. Four themes were constructed— Enduring Discomfort, Expressing Discomfort, Finding Comfort, and Comforting Others. The findings show that the children derived help to endure discomfort from their family, hospital staff, and other children by being distracted in various ways. They also could distract themselves. The children described being able to express their discomfort as a relief. They found comfort especially by being close to parents and other family members. Comforting others also comforted them. The reciprocal nature of comfort was evident as all children found comfort by comforting family members; parents found comfort by comforting their ill children (Ångström-Brännström et al., 2010). The children found help to endure by distraction. They mentioned playing, watching TV, playing games, playing

with toys, and reading a book. Also thinking of home, the dog at home, and parents, distracted them. Distraction has been found effective in helping children cope with medical procedures and hospitalization by reducing fear, anxiety and distress, and providing comfort (Dahlquist et al., 2002; Lu et al., 2011; Windich-Biermeier, Sjoberg, Conkin Dale, Eshelman, & Guzzetta, 2007). In their study, Windich-Biermeier et al. (2007) found that parents of children with cancer who took an active part in distracting their child during a procedure benefitted from doing so, and they were eager to encourage their child to use distraction. By taking an active role, parents felt that they were able to help their child, who in turn made the parents more content and enabled them to feel that they had an important task to fulfill. The study by Lu et al. (2011) shows that parents found that their company and the use of soothing techniques, like massage and warm baths, comforted their child in pain. The cause of pain was not eradicated, but the parents’ actions brought comfort to the children. This could be expressed using Morse’s (2001) terminology that the children got help to endure discomfort. In this study, the children expressed feelings of discomfort verbally and nonverbally (in Morse’s [2001] terms, emotional suffering). They expressed pain and worry, and they talked about what was frightening both in interviews and in drawings; they reported being sad, crying, and screaming. It was evident that the children in our study expressed feelings to show their need for comfort and also found comfort in expressing feelings of pain, fear, and despair. Expressing feelings was also described by Hildenbrand et al. (2011) as a way to release emotional reactions when feeling sad and anxious. In their study, Lu et al. (2011) found that parents of children suffering from cancer said the key to detecting pain in their children was through observing behavioral manifestations. Young children can have difficulty expressing feelings in words; it is therefore important to be aware of both verbal and nonverbal cues that indicate pain, for example (McPherson & Thorne, 2000). Children use their creativity to communicate. In this study, the children’s drawings became a way to tell us about the children and their experiences. As mentioned earlier, young children have a limited vocabulary and may have difficulty finding the right words. It is often easier for them to express their feelings by drawing. Several studies support that drawing helps children do this, and that drawings are good tools to communicate with children, access young children’s thoughts, and facilitate emotional expression (Madden, Mowry, Gao, Cullen, & Foreman, 2010; Trollvik, Nordbach, Silén, & Ringsberg, 2011; Wellings, 2001). Ultimately, drawing can work as a release that gives children an opportunity to express and handle feelings and can comfort them

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Ångström-Brännström and Norberg (Ångström-Brännström, 2010). According to Wellings (2001), care can even be hindered by young children’s inability to express feelings verbally, and drawing can help children to communicate and express experiences of their treatment. Thus, it seems important to facilitate children’s communication of their feelings about illness and treatment in order to give them the best care. Some children in this study made drawings depicting predators (dinosaurs and bears) as did a dying boy (Ångström-Brännström, Dahlqvist, & Norberg, 2013). According to Bertoia (1993), young children can experience fear and see illness as a “monster,” and some form of threat. By drawing the threat, the child can exercise some control and talk about his or her fear. When used insightfully, and with respect and understanding about children’s ways to express themselves, drawings together with interviews can provide rich data (Carter & Ford, 2013). The children described that they wanted parents, siblings, and other relatives close to provide comfort by staying by their side on the ward. The children’s desire for closeness was clearly expressed in this study. This is in line with findings by Björk et al. (2006), Woodgate (2006), and Ångström-Brännström et al. (2008) that closeness to parents and family, talking, and caring are comforting. When children and parents interact, the children see their parents as a secure base, helping them to endure, and think that the situation is less dangerous. In turn, parents of children undergoing cancer treatment said that they found comfort when being close to their child; they described this as being “one” with their child (Ångström-Brännström et al., 2010). The findings from this study support the need for reciprocal closeness between parents and their children, which helps both parties to endure discomfort and also comforts both. The findings show that the children got help to endure discomfort and found comfort from grandparents, who they regarded as close family. They explained that grandparents comforted them. Reasonably, grandparents played a vital role for the family by being able to spend time on the ward and by making themselves available. In their study, Moules, Laing, McCaffrey, Tapp, and Strother (2012) found that grandparents of children with cancer put their own lives on hold and tried to just be there for the sick child and the family. They helped preserve a semblance of normalcy for all family members by just being there. Another interesting finding of the study is that besides needing comfort themselves, children undergoing cancer treatment also comforted their family members. In fact, the ability to do so seemed to be a source of comfort to them, as is also reported by Ångström-Brännström et al. (2008). In the present study, the children talked about comforting their parents and siblings by talking, hugging, being close, and by providing toys. The children found it

natural and obvious to comfort a family member who needed comfort. When comparing this study with our study of children with chronic illnesses (Ångström-Brännström et al., 2008), the similarities are obvious. The children described finding comfort from their family, nurses, their own toys, playing, drawing, and comforting others. The only finding that differs is that children with chronic illnesses described finding comfort when feeling at home on the ward, which was not reported in this study. This can be explained by the fact that the children with chronic illnesses had spent more time at the hospital, and the children with cancer had just started treatment and did not “feel at home” at the ward. Childhood cancer is considered to be a chronic illness. As survival rates improve, more children are now living with cancer rather than dying from it (Cantrell, 2007). The story about the princess in the blueberry forest can be seen as a personal narrative. The girl said the story was about her, it was her story. She described being ill, having lumps on her body, crying, and not recognizing herself. The story ended happily and she was cured. Art expression can provide children with the potential to tell their story and to talk about their experiences, thoughts, and feelings through visual images (Carter & Ford, 2013; Driessnack, 2005). It is interesting that children described feeling comforted in quite similar ways as those used by adults, such as a sense of feeling at home (Rasmussen, Jansson, & Norberg, 2000; Ångström-Brännström et al., 2010;), being emotionally close to another trusted person (in communion; Norberg, Bergsten, & Lundman, 2001; ÅngströmBrännström et al., 2010;), in distractions (Dahlqvist, Söderberg, & Norberg, 2008), and by comforting others (Brännström, Ekman, Boman, & Strandberg, 2007). The fact that children and adults describe being comforted so similarly may be seen as a prereflective experience of an integrated body (Morse, Bottorff, & Hutchinson, 1994). Children and adults are both just human beings when in need of comfort.

Methodological Considerations When interviewing children, CÅB saw them as partners, contributing their thoughts and perspectives on the experiences of comforting. The children were young; they suffered from symptoms of the disease and treatment and did not have enough strength to participate in long interviews. As young children can have difficulty in expressing themselves, CÅB arranged to meet with each child and parent before the interview took place, and during these meetings she informed herself about their cognitive and emotional development. Furthermore, she was not a staff member.

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By showing interest and listening carefully, CÅB tried to create a climate where the children were seen as experts on their own experiences, felt free to talk, and were encouraged to tell their story. The children seemed to enjoy being interviewed, making drawings and talking about their experiences. They were surprised when they were asked for an interview and some of them said, “Do you want to talk with me, not my mother/father?” They talked with great insight and enthusiasm about the meaning of their drawings and what they thought about them. The interviews and drawings provided interesting data and allowed the children to freely express preverbal experiences and thoughts. Drawings can be seen as a “language,” and a developmentally appropriate form of communication, especially for young children who lack the cognitive abilities to verbally express themselves (Carter & Ford, 2013). To achieve trustworthiness (Patton, 2002) at the end of each interview, intersubjective validation was obtained by asking the children to explain the meaning of the drawing and clarify the content (Carter & Ford, 2013; Driessnack, 2005). The authors discussed all steps of the analysis as well as the literature to obtain agreement (Graneheim & Lundman, 2004; Morse, Barrett, Mayan, Olson, & Spiers, 2002). The fact that, except in two cases, a parent was present during the interview probably contributed to making the interview situation safe for the child. The possibility that the parents’ presence during the interview affected the children’s responses cannot be excluded, but as the parents reported that they were stunned by their children’s statements, we regard the data as trustworthy.

Conclusion All interviewed children undergoing treatment for cancer expressed experiences of discomfort and comfort in interviews and drawings. They emphasized closeness to family members as important for enduring discomfort and finding comfort. Their accounts were like previously reported accounts of children as well as of adults. Thus, we conclude that comfort appears to be a basic human phenomenon that should facilitate the creation of a more egalitarian relationship between adults (parents, staff) and children.

Implications for Practice According to the children in this study, grandparents, parents, siblings, other children, and the children themselves seem to be the most important comforters. Nurses also play a vital role as comforters during treatment. Their kindness, and the information they provide, combined with humor, and the fact that the same nurse met with the child many times comforted the children. For nurses it is important to

be aware of their role and to facilitate parents’ participation in care. They also need to assess each child’s individual experience of discomfort and need of comfort. Children in the hospital should have easy access to paper, crayon, pencils, and water colors if they want to draw and paint. When talking to children in the hospital, drawings can enhance communication and help the child express feelings and thoughts about the illness and treatment, thereby taking the child’s opinion and thoughts into account. Acknowledgments We are very grateful to all children who participated in the study and so generously shared their experiences and to assistant professor Lilian Jansson who helped us plan the study.

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study was funded with grants from the Swedish Child Cancer Foundation.

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Author Biographies Charlotte Ångström-Brännström, RNT, PhD, is an assistant professor at the Department of Nursing, Faculty of Medicine, Umeå University, Umeå, Sweden. Astrid Norberg, RN, PhD, is Professor Emerita at the Department of Nursing, Faculty of Medicine, Umeå University, Umeå, Sweden and the Palliative Research Center, Ersta Sköndal University College, Stockholm, Sweden.

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