Good death for children with cancer: a qualitative study

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1 Japanese Journal of Clinical Oncology, 2015, 45(4) doi: /jjco/hyu223 Advance Access Publication Date: 26 January 2015 Original Article Original Article Good death for children with cancer: a qualitative study Yoshinori Ito 1,2, Toru Okuyama 1,2, Yasuhiko Ito 3, Michi Kamei 3, Tomohiro Nakaguchi 1,2, Koji Sugano 1,2, Yosuke Kubota 1, Nobuhiro Sakamoto 2, Shinji Saitoh 3, and Tatsuo Akechi 1,2, * 1 Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, 2 Division of Psycho-oncology and Palliative Care, Nagoya City University Hospital, Nagoya, and 3 Department of Pediatrics and Neonatology, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan *For reprints and all correspondence: Tatsuo Akechi, Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan; Division of Psycho-oncology and Palliative Care, Nagoya City University Hospital, 1 Kawasumi Mizuho-cho, Mizuho-ku, Nagoya, Aichi , Japan. takechi@ med.nagoya-cu.ac.jp Received 12 November 2014; Accepted 23 December 2014 Abstract Objective: This study aims to explore the characteristics of a good death for children with cancer. Methods: A total of 10 pediatric cancer survivors, 10 bereaved family members and 20 medical professionals participated in in-depth interviews. Qualitative content analysis was performed on the transcribed data obtained from semi-structured interviews. Results: Thirteen characteristics including unique and specific for children of a good death were identified: (i) sufficient opportunities to play freely, (ii) peer supporters, (iii) continued access to the patient s usual activities and relationships, (iv) assurance of privacy, (v) respect for the patient s decisions and preferences, (vi) a sense that others acknowledge and respect the patient s childhood, (vii) comfort care to minimize distressing symptoms, (viii) hope, (ix) not aware of the patient s own impending death, (x) constant dignity, (xi) strong family relationships, (xii) no sense of being a burden to family members and (xiii) good relationships with medical staffs. Conclusions: This study identifies important characteristics of a good death for children with cancer. These findings may help medical staffs provide optimal care for children with cancer and their families, enabling them to achieve a good death. Key words: good death, palliative care, end-of-life care, pediatric cancer, psycho-oncology Introduction While treatment of pediatric cancer has been progressing in recent years and current 5-year survival of most types of pediatric cancer is over 70% (1), 20 30% of pediatric cancer patients cannot be cured and forced to be facing death. Actually cancer is one of the most common causes of death by disease in children younger than 15 years in most developed countries including Japan. It is not doubtful that providing optimal supportive and palliative care as well as appropriate active anticancer treatment is essential for good pediatric oncology practice. But what are the goals of palliative care for incurable pediatric cancer patients? One notion is that achievement of good death is one of the most important goals. Because death is inevitable for these patients, considering the better death must be more productive, and therefore contribute better dying process. A good death can be defined as one that is free from avoidable distress and suffering for patients, families and caregivers; in general accord with patients and families wishes; and reasonably consistent with clinical, cultural and ethical standards in terminal illnesses (2). The Author Published by Oxford University Press. All rights reserved. For Permissions, please journals.permissions@oup.com 349

2 350 Good death for children with cancer Several attempts have been made to embody this concept in terminally ill cancer patients (2 5). Across the studies, several common characteristics of a good death could be identified, namely, freedom from distressing symptoms; dying in a favorite place; good relationships with family members and medical staffs; a feeling that the dying person s life is complete; maintained dignity; preparation for death; and some form of contribution to others. On the other hand, demographic characteristics, especially life stage, and culture can influence patients ideas of a good death (4 6), and it is easily assumed that these characteristics, which were identified in studies of adult patients, do not apply to pediatric patients directly. Few empirical studies have investigated the question of what constitutes a good death for pediatric cancer patients. Hendrickson and McCorkle (7) have reviewed and summarized previous findings and suggested some potentially relevant factors for a good death for pediatric cancer patients including age-appropriate participation, personal style, quality of life, preparation for death, aspects of care, legacy and impact on survivors. However, they have commented that the most relevant limitation is that the analysis involved in the interpretation of studies was based on data from adults or commentaries made by adults. Thus, there is a strong need to clarify the actual components regarding good death for pediatric cancer patients using more appropriate methods that reflect empirical evidence. Furthermore, findings clarifying the concept of a good death among pediatric cancer patients are crucial for providing optimal comprehensive cancer care for children with cancer and their families. The purpose of the present study is to identify the components of a good death for children with cancer by using a qualitative method. Patients and methods Design and setting This study involved a qualitative content analysis of interview data and was conducted in a Nagoya City University Hospital in Japan. Because our discussions had concluded that interviewing dying pediatric cancer patients directly about their experiences was neither feasible nor ethical, the current study sampled a mixed population of subjects composed mainly of three types: survivors of childhood cancer, bereaved parents who had lost a child to pediatric cancer, and medical staffs comprising pediatric oncologists, nurses, palliative care physicians, clinical psychologists, music therapists, teachers in hospital schools and rehabilitation staff with extensive experience caring for pediatric cancer patients. Regarding the medical staff participants, we consulted such variety of staffs because many types are involved in the care of pediatric cancer patients, even in the dying phase (8 10). Participants and procedures Childhood cancer survivors were selected on the basis of the following inclusion criteria: 18 years of age or older, diagnosed with cancer at age 15 or younger, 5 years after cancer treatment has elapsed and ability to communicate in Japanese for the interview. The exclusion criteria were as follows: severe mental or cognitive disorder and disqualification by their own oncologist. Bereaved parents who met the following criteria were included in this study: parents who had lost a 16-year-old or younger child to pediatric cancer, a half year after their child has died and able to communicate in Japanese for the interview. The exclusion criteria were as follows: severe mental or cognitive disorder or disqualification by their child s oncologist. Medical staffs included in this study had at least 2 years of experience in pediatric cancer care. The researchers consecutively identified potential participants with a diagnosis of pediatric cancer and bereaved family members of childhood cancer patients from electronic medical records. Based on data extracted from these records, the researchers checked potential participants eligibility with pediatric oncologists and sampled potential survivor participants continuously during outpatient visits. Potential bereaved family members who were sampled retrospectively and consecutively from the beginning of this study were telephoned by the researchers. Then, the researchers met with each potential participant and explained this research. Finally, 10 pediatric cancer survivors, 10 bereaved parents and 20 medical staffs participated in the study. No subjects refused to participate in the study. Written consent was obtained from each participant after a thorough explanation of the purpose and method of the study had been provided. This study was approved by the Institutional Review Board and Ethics Committee of the Nagoya City University Graduate School of Medical Sciences, Japan, and was conducted in accordance with the principles laid down in the Helsinki Declaration. Data collection Interview procedure Semi-structured interviews were conducted by the principal investigator (Y.I.) between July 2012 and March The participants were asked to recall fully, their real experiences and the images of dying that they had received, after which, the interviews followed comprising a predetermined series of open-ended questions such as the following: If you were a child with incurable cancer, what would be the most desirable or best thing for you to do? What would desirable care look like on a physical, psychological or social level? These questions were determined through discussion among the researchers and based on those used in previous studies investigating a good death for adult cancer patients (2,5). The participants were asked to respond freely to each question. The interviewer listened sympathetically and without interruption, considering his/her mental condition. The interview was conducted in a quiet room to protect the participant s privacy. Approximately half an hour to one hour was allotted per participant. Analysis All interviews were audiotaped and transcribed verbatim. Qualitative content analysis (11) was performed on the transcribed data. First, two researchers (Y.I. and K.Y.) read through each interview several times. Working independently, they extracted all statements related to the study topic from the interview transcripts and determined the meaning of each. They then discussed their findings and jointly grouped the transcripts into categories and subcategories. All processes in the analysis and all categories and subcategories were approved through discussion with an experienced palliative care/ psycho-oncology expert (T.A.). Results Characteristics of the participants Data were obtained from 40 participants, including 10 cancer survivors, 10 bereaved family members of pediatric cancer patients and 20 medical staff members (Table 1). The median duration of each interview was 21 min (range: min). Components of a good death A total of 513 codes were identified from all interviews and 71 subcategories were extracted. These were eventually summarized into 13

3 Jpn J Clin Oncol, 2015, Vol. 45, No Table 1. Participant demographics (N = 30) Sample characteristic Survivor (n = 10) Bereaved parent (n = 10) Medical staff (n = 20) Median age, years (range) 23.5 (18 31) 37.5 (32 55) 39.5 (25 67) Gender, n (%) Male 6 (60) 3 (30) 10 (50) Type of cancer, n (%) Leukemia 5 (50) 5 (50) Brain tumor 2 (20) 2 (20) Musculoskeletal tumor 2 (20) 2 (20) Lymphoma 1 (10) Hepatoblastoma 1 (10) Median time under 1.5 (0.5 4) 2 ( ) medical treatment, years (range) Median age of onset 9.5 (6 14) 7 (0.8 11) (years) Median age at death 9(3 15.9) (years) Median length of 6(2 37) professional career (years) Type of occupation, n (%) Nurse 8 (40) Doctor 7 (35) Pharmacist 1 (5) Clinical psychologist 1 (5) Physiotherapist 1 (5) Music therapist 1 (5) Teacher of hospital school 1 (5) components of a good death (Table 2) as follows: (i) sufficient opportunities to play freely, (ii) peer supporters, (iii) continued access to the patient s usual activities and relationships, (iv) assurance of privacy, (v) respect for the patient s decisions and preferences, (vi) a sense that others acknowledge and respect the patient s childhood, (vii) Comfort care to minimize distressing symptoms, (viii) hope, (ix) not aware of the patient s own impending death, (x) maintaining dignity, (xi) strong family relationships, (xii) no sense of being a burden to family members and (xiii) a good relationship with medical staffs. These 13 components can be sorted into two major categories: the first containing components that are unique and specific to the pediatric setting (Components 1 6), and the second containing components that are universally applicable for cancer patients irrespective of age (Components 7 13). Sufficient opportunities to play freely This component is comprised of six subcategories, each referring to various elements of play or freedom that can be achieved even in an inpatient setting. In a hospital setting, many activities are often forbidden to children because of their serious physical condition. But I think that a child can enjoy and have valuable experiences if he/she is provided with opportunities for playing actively and freely depending on his/her physical conditions (Case 34, medical staff, sixties, female) Subcategory (6). Peer supporters This component is comprised of four subcategories that relate to peer supports on children with cancer. My son told me that he had a chance to make good friends in the hospital school. They empowered each other, and these peers always encouraged him. Of course, he could not meet with his school friends in the hospital, but he was happy to get to know his peers in the hospital. Having close friends is essential even in hospital. (Case 15, bereaved parent, thirties, female) Subcategory (10). Continued access to the patient s usual activities and relationships This component is comprised of six subcategories that relate to maintaining continuity of life. The most important thing is that each child in the hospital can live just as he/she usually does at home. (Case 1, survivor, thirties, male) Subcategory (11). Assurance of privacy This component is comprised of four subcategories all related to the environment that patients having private time with their families. I wanted to meet my brothers in addition to my parents. I was allowed to meet my father and mother in the hospital, but not my brothers because of the risk of getting an infection from them. (Case 5, survivor, twenties, female) Subcategory (17). Respect for the patient s decisions and preferences This component is comprised of seven subcategories covering topics such as the explanation of medical information at each pediatric patient s level of understanding and shared decision making with pediatric patients. If a child is competent, all information about cancer should be provided. Then, the best treatment should be administered based on careful consideration of the child s preferences. (Case 29, medical staff, thirties, male) Subcategory (24). A sense that others acknowledge and respect the patient s childhood This component is comprised of nine subcategories related to understanding the mind of the child, especially the adolescent. I think that it is normal for a child to be angry and to cry [when faced with sickness and death]. It is important not to force him/ her to stop crying but to accept his/her emotions. Acceptance of achild s emotions, rather than contradicting his/her experience, is essential for good care. (Case 22, medical staff, twenties, female) Subcategory (27). Comfort care to minimize distressing symptoms This component is comprised of six subcategories that relate to palliative distress. Taking pills seemed to be an overwhelming and distressing event for my child. I remember asking the nurse not to administer the pills to my child every night. (Case 2, bereaved parent, twenties, female) Subcategory (41). Hope This component is comprised of three subcategories, each referring to hope. In addition, this component includes not being lied to about one s medical condition. I would not want to be told untrue information. But I would like to ask the medical staff to help me maintain hope. (Case 33, medical staff, thirties, female) Subcategory (42).

4 352 Good death for children with cancer Table 2. Components of a good death for a child with cancer Items 1. Sufficient opportunities to play freely (1) Freedom to relax restrictions (2) Sufficient time for recreation (3) Sufficient time to relax (4) Having a room to play freely (5) Ability to satisfy my curiosity to act freely (6) Ability to move my own body freely 2. Peer supporters (7) Access to peer supporters (8) Being told the truth and being given a chance to grieve when another patient has died (9) Being listened to when I want to talk (10) Chances to share a sense of accomplishment or joy with others 3. Continued access to my usual activities and relationships (11) Time to spend at home (12) Ability to pursue my daily activities (13) Chances to meet with friends who understand my situation (14) Being treated normally, not as a special case (15) Being able to go to school to study (16) Maintaining my friendships in spite of the changes the disease brings 4. Assurance of privacy (17) Enough time alone with my family (18) Private space and time (19) An environment in which everyone understands my situation 5. Respect for my decisions and preferences (20) Communication that is appropriate to my age and physical condition (21) Honesty when communicating bad news (22) Ability to choose my treatment based on symptom management or lifestyle (23) Adequate explanation of the need for each test or treatment and the ability to consent (24) Discussion of the pros and cons of each treatment, according to my level of understanding (25) Ability to leave decisions about my treatment to family members or oncologists when I cannot make them myself (26) Deciding for myself when I am able 6. A sense that others acknowledge and respect my childhood (27) Understanding of my negative emotions such as outbursts of anger or misbehavior (28) Consideration of my feelings about loss of hair due to chemotherapy (29) Sympathizing with me even when I cannot express my concerns fully (30) Being worried about my condition when I am distressed (31) Listening to my feelings when I want to talk (32) Knowing that my medical staff are interested in me by how they speak to me (33) Understanding when I lash out in anger at my family even though I love and appreciate them (34) Praise rather than scolding (35) No patronizing or excessively encouraging treatment 7. Comfort care to minimize distressing symptoms (36) Freedom from pain and physical distress (37) Avoiding painful tests and treatments (38) Comfort and care (39) Reassurance about tests and treatments (40) Care and gentleness when painful parts of my body must be touched (41) Avoiding unnecessary internal medicines or injections 8. Hope (42) Honest communication and hopeful attitudes (43) Encouragement of my making plans for the future (44) Being informed about all positive changes in physical status 9. Not aware of my own impending death (45) No knowledge that my condition is incurable (46) Ability to lose myself in an activity that I enjoy (47) Chances to talk about something other than illness or treatment (48) No sense that I am weakening or losing autonomy 10. Constant dignity (49) Independence in my daily activities (50) Not being treated as a child, but being listened to as an adult would be listened to (51) Respect for my values (52) A feeling that I can contribute to others 11. Strong family relationships (53) Presence of my family at my side when I am anxious

5 Jpn J Clin Oncol, 2015, Vol. 45, No (54) A united family (55) Support from my family (56) Cherishing memories with my family (57) Good relationships with siblings (58) Good relationships between my family (59) Wanting my family not to tell me a lie (60) Not being told any bad news by my family member 12. No sense of being a burden to family members (61) Feeling that my parents do not worry about me excessively (62) Feeling that my parents are not inconvenienced by me (63) Not seeing my parents excessively sad or upset (64) Seeing my parents happy and smiling 13. Good relationships with medical staff (65) Medical staff who take the time and trouble to play with me (66) Medical staff who are reliable (67) Medical staff who do their best (68) Care that is optimal for my condition (69) Friendly relationships with medical staff (70) A clear sense that I am well cared for (71) Medical staff who sometimes visit my room when I am lonely Not aware of the patient s own impending death This component is comprised of four subcategories and is related to avoiding the fear of death. I appreciated when nurses spoke to me about things other than my disease and treatment. These were very precious times for me to as it helped me escape from and avoid constantly thinking about my cancer and treatment. (Case 8, survivor, thirties, female) Subcategory (47). Constant dignity This component is comprised of four subcategories, each referring to the maintenance of autonomy or dignity. The subcategory of not being treated as a child falls within this category. I appreciated when adults treated me as a whole and independent person even I was actually a child. Even shy children feel encouraged to confide their profound emotions to such adults. (Case 25, medical staff, twenties, female) Subcategory (50). Strong family relationships This component is comprised of eight subcategories on the topic of relationships with family. Relationships with siblings form a unique subcategory within this category. I remember one dying patient aged 4 or 5 years telling his mother, Buy something for my brother when his family asked if there was anything he wanted. Even at such a young age he thought of his family first, waiting patiently for what he himself wanted. (Case 37, medical staff, thirties, female) Subcategory (57). No sense of being a burden to family members This component is comprised of five subcategories that relate to feeling guilty about the impact of one s sickness on one s family, especially parents. The important thing for me is that my parents do not experience suffering. (Case 37, medical staff, thirties, female) Subcategory (61). Good relationships with medical staffs This component is comprised of seven subcategories concerning the relationship with the medical staff. This result indicates that pediatric cancer patients have particularly close relationships with staffs, even closer than those of adult cancer patients. I hope that medical staff members treat children with some indulgence. An experience that had an impact on me was that the nurse played with me and listened to me even when she was busy with her work. (Case 2, survivor, twenties, female) Subcategory (65). Discussion This is the first study to examine what constitutes a good death for a child with cancer. We found that there are 13 relevant components of a good death. As mentioned above, these 13 components seem to fall into two main categories: those that are specific to the pediatric cancer setting and those that are universal characteristics of a good death at any age. One of our unique findings that had not been revealed in previous studies was the importance of play as a relevant factor in a good death. In recent years, play has been recommended as a means of distracting children from invasive treatments and/or reducing fear of painful diagnostic testing (12), promoting communication (13) and improving adherence to the medication schedule (14), especially in pediatric anticancer treatment settings. In the field of child psychiatry, however, play therapy is widely used as a psychotherapeutic technique and is considered to be useful in ameliorating various types of psychological distress and/or clinical symptoms (15,16). Considering that children are generally immature and have a limited capacity to communicate verbally, play with others, including medical staffs, can be a useful alternative to verbal communication and an essential element of care for pediatric cancer patients. Medical staffs should be advised to proactively encourage play when caring for terminally ill pediatric cancer patients. Second, our results indicate the importance of peer supporters. This finding implies that providing patients with appropriate environments where they are able to connect meaningfully with their peers is another important factor in achieving a good death. Although some previous studies have investigated the influence of peer support on children with cancer, focusing primarily on its psychological effects among pediatric cancer survivors, there have been no consistent results (17 19). These findings may be inconsistent because these studies have included healthy children as well as children with cancer as peers. On

6 354 Good death for children with cancer the other hand, the present study has shown that an effective peer is another child suffering from cancer: pediatric cancer patients seem to place a high value on the presence of other children with cancer. This suggests that peers, namely, children with cancer bearing experiencing a similar situation like fighting cancer, can be an important resource for social support for pediatric cancer patients. This may be partly due to the fact that pediatric cancer is not a common disease for children, so that patients are likely to feel isolated or lonely (20). Third, our results demonstrate the relevance of having a normal life, since they reveal that Continued access to the patient s usual activities and relationships is an important component of a good death. This finding is not surprising given that anticancer treatments, including chemotherapy for pediatric cancer, usually keep patients in the hospital for long periods of time, causing them to experience serious isolation from their normal community (21). This finding is supported by one previous study (22) in which the authors pointed out that children who are facing death have typically already lost their former identity and social role, as these are usually obtained from social relationships. Thus, it is essential to support patients in maintaining their preexisting relationships in their community. A previous study has already shown the relevance of connection with the preexisting community for pediatric cancer patients (23). Similarly, our findings suggest that it is essential to help terminally ill pediatric cancer patients preserve their ties with their friends and family outside the hospital. Together, these three findings suggest the importance of providing an environment that is as similar as possible to patients ordinary lives, so that pediatric cancer patients can play and socialize normally until their death. In addition, these results also strongly suggest the relevance of creating an environment where pediatric cancer patients can pursue school activities or participate in hospital recreation programs even at the terminal stage. It is interesting to note that several components that are suggested as essential for pediatric cancer patients have also repeatedly been identified as important components of a good death for adult cancer patients (2,4,5). It should be noted that the sense of preparation for death and the sense of completion of life, both of which have been consistently indicated as essential elements of a good death among adult patients, and which have been suggested to be important in previous studies on pediatric patients (7), were not identified as important in our study. This result may be attributed to the interaction between specific age and cultural differences. The factor of specific age may not be surprising considering that these are not very compatible with childhood and that a child s concept of death and life is very different from an adult s (24,25). It is believed that the acquisition of the concept of death is related to various factors but especially to cognitive development (26 28). Human development is categorized into several stages, but it lasts throughout the lifespan, so that patients of every age must be able to integrate their current psychosocial development stage into their lives even when they are dying. Previous research investigating what constitutes a good death for adult patients has generally focused on patients 60 years or older; in patients of that age, according to E.H. Erikson, the appropriate stage of psychosocial development is called ego integrity (29). Additionally, it has been suggested that terminal cancer patient in Japan may be more likely to wish that they were unaware of their impending death (4,6). On the other hand, our finding also endorses the components of Respect for my decisions and preferences. Considering that several Western studies suggest that talking about end-of -life issues between terminal cancer children and medical staff is common in actual clinical setting (30 32), medical staffs and children should continue to discuss the issues of end of life while respecting unawareness of the children regarding their impending deaths. Thereby, given the aforementioned importance of continued access to the patient s usual activities and relationships, our findings suggest that it is essential to provide appropriate care that helps patients be unaware of the fact that they are dying until the last moment, so that they can progress in their current psychosocial development stage while maintaining their interpersonal relationships from early in the course of illness in order to achieve a good death. It should be emphasized that it is essential to provide terminally ill pediatric cancer patients with a healthy social environment, typically, one like normal school life, in addition to providing general and optimal palliative care focusing on patients physical and psychological distress. This will serve the important purpose of promoting normal psychosocial development. In addition, the present findings suggest that individually tailored care should be provided depending on each patient s developmental phase and that medical staffs should strive to understand children s behavior and how it is influenced by their complex and ambivalent emotions in addition to providing highquality general and universal palliative care. There are several limitations for the current study. One is that none of the participants was actually dying pediatric cancer patients; accordingly, findings may not actually reflect their voices. Additionally, the sample size was small; the participants were recruited from a few specific institutions only, which may have produced institutional bias. The present study also has strengths, however, including the fact that this is the first empirical study to use a sample of participants with various viewpoints on pediatric cancer medical settings, including pediatric cancer survivors and bereaved family members. This study identified 13 potentially important components of a good death for a child with cancer, some of which are specific to pediatric cancer patients. These findings may help medical staffs provide optimal care for children with cancer and their families, helping them to achieve a good death. Funding This study was supported in part by a grant-in-aid for Kidani Memorial Trust Cancer Treatment Project. Conflict of interest statement None declared. References 1. National Cancer Institute. Surveillance epidemiology and end results. 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