**Symptoms Management and Quality of Life**

Ayşe Gürol and Sevinç Polat

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Additional information is available at the end of the chapter

http://dx.doi.org/10.5772/67300

#### **Abstract**

**Introduction:** Children with cancer experience serious difficulties due to the diagnosis, the hospitalization, the symptoms that accompany the long and exhausting treatment process. Unrelieved symptoms related to either cancer or chemotherapy also lead to poorer quality of life, including increased distress and negatively impact healing process. The families of children with cancer often try the complementary and alternative medicine (CAM) to reduce their children's experience of physical discomfort.

**Methods:** The following sources of published reviews have been consulting: PubMed, The Cochrane Library, and Web of Science. Databases were queried from inception to August 2016. Our inclusion criteria were (i) studies both published in English and between June 1, 2010 and June 31, 2016; (ii) assessment of symptom management and quality of life; and (iii) application of CAM to children with cancer.

**Results:** In this review, the most commonly used intervention methods were massage, exercise, music and android programs, and yoga, rehabilitation program, art therapy, and reiki therapy. The most commonly evaluated these outcomes: pain, anxiety, fatigue, nausea, sleep, and quality of life in the articles.

**Conclusion:** National and international collaborations among researchers, policy maker, pharmacist, and clinicians will facilitate the regulated use of effective CAM therapies in pediatric oncology.

**Keywords:** pediatric oncology, symptoms management, quality of life, evidence-based practices, complementary, alternative medicine

© 2017 The Author(s). Licensee InTech. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

#### **1. Introduction**

Cancer and its treatment are stressful, and they reduce the quality of life of cancer patients and their families [1]. Children with cancer experience serious difficulties due to the diagnosis, the hospitalization, the symptoms that accompany the long and exhausting treatment process. As a matter of fact, children with cancer receiving chemotherapy often experience painful conditions such as mucositis and peripheral neuropathy. Unrelieved symptoms related to either cancer or chemotherapy also lead to poorer quality of life, including increased distress and negatively impact healing process [2]. Prevention of symptoms of cancer and side effects of treatment is expected to contribute positively to treatment by increasing the quality of life of children [3].

Children with cancer experience physical symptoms, including pain, and mental symptoms, anxiety [1]. One of these symptoms is also sleeping problems. Sleep disturbances persist in cancer survivors and can cause depression, pain, fatigue, and decrements in quality of life beyond the time of cancer treatment [4, 5]. Sleep problems were often present in a combination of different symptoms [5]. Pain is a common symptom during cancer diagnosis and treatment and may come from painful procedures, disease progression, or impingement of nerves, tissues, or organs from tumors at any stage of the cancer progression [6]. Pain is an unpleasant and subjective experience that involves sensory, affective, cognitive, social, and behavioral components; it is a major cause of human suffering and loss of quality of life [7]. In children and adolescents with cancer, the feeling of fatigue characterized by physical, mental, and emotional components is increasingly observed during and after cancer treatment [8–10]. In addition, many cancer survivors report continued fatigue that adversely impacts their quality of life [8]. Oral mucositis is considered one of the major debilitating side effects of cancer therapy (chemotherapy and radiotherapy). Oral mucositis also impacts on children and adolescents' quality of life and their mood status [11]. Cancer affects to quality of life of children and adolescents with cancer. It has changed their daily physical activities, relationships with their family and friends, emotional well-being, and coping with the symptoms. Throughout this period, pediatric patients suffer from multiple physical and psychological symptoms like pain, fatigue, nausea, to feelings of sadness, worrying, and irritability [12].

The families of children with cancer often try CAM to reduce their children's experience of physical discomfort [1]. Complementary and alternative medicine (CAM), which is not considered as a part of traditional medicine, can be defined as a various medical health care systems, practices, and products. Nowadays, among the most known and applied CAM methods are acupuncture, aromatherapy, osteopathy, yoga, massage, and various herbal supplements [1, 13, 14]. According to the National Center for Complementary and Alternative Medicine (NCCAM), there are three broad categories of CAM: natural products, spiritual care (mindbody), and treatments based on body manipulation [14]. CAMs use in children with cancer has increased worldwide in the last years. The reported frequency of its use varies from 30 to 84% in different surveys [15]. It is important to identify and control symptoms in order to increase quality of life and reduce morbidity. Furthermore, there is some evidence that reduction in symptoms may improve future psychosocial functioning [16].

It has been suggested that the use of CAM, as a component of a healthy lifestyle, may support survivors of childhood cancer in coping with many of these long-term complications and chronic health problems [17]. CAM treatments are mostly used to decrease the side effects of cancer treatment [18, 19].

Complementary and alternative medicine is a method used for supporting the conventional treatment. The main objective in preferring these methods is to increase quality of life and reduce symptoms. CAM therapies have been proven effective for symptoms such as pain, nausea, vomiting, and mucositis [3]. The qualitative and quantitative studies are assessed CAM therapies in these symptom management. But, there is paucity of convincing scientific evidence to support practice of CAM therapies in pediatric cancer patients.

### **2. Methods**

**1. Introduction**

36 Pediatric Cancer Survivors

of children [3].

Cancer and its treatment are stressful, and they reduce the quality of life of cancer patients and their families [1]. Children with cancer experience serious difficulties due to the diagnosis, the hospitalization, the symptoms that accompany the long and exhausting treatment process. As a matter of fact, children with cancer receiving chemotherapy often experience painful conditions such as mucositis and peripheral neuropathy. Unrelieved symptoms related to either cancer or chemotherapy also lead to poorer quality of life, including increased distress and negatively impact healing process [2]. Prevention of symptoms of cancer and side effects of treatment is expected to contribute positively to treatment by increasing the quality of life

Children with cancer experience physical symptoms, including pain, and mental symptoms, anxiety [1]. One of these symptoms is also sleeping problems. Sleep disturbances persist in cancer survivors and can cause depression, pain, fatigue, and decrements in quality of life beyond the time of cancer treatment [4, 5]. Sleep problems were often present in a combination of different symptoms [5]. Pain is a common symptom during cancer diagnosis and treatment and may come from painful procedures, disease progression, or impingement of nerves, tissues, or organs from tumors at any stage of the cancer progression [6]. Pain is an unpleasant and subjective experience that involves sensory, affective, cognitive, social, and behavioral components; it is a major cause of human suffering and loss of quality of life [7]. In children and adolescents with cancer, the feeling of fatigue characterized by physical, mental, and emotional components is increasingly observed during and after cancer treatment [8–10]. In addition, many cancer survivors report continued fatigue that adversely impacts their quality of life [8]. Oral mucositis is considered one of the major debilitating side effects of cancer therapy (chemotherapy and radiotherapy). Oral mucositis also impacts on children and adolescents' quality of life and their mood status [11]. Cancer affects to quality of life of children and adolescents with cancer. It has changed their daily physical activities, relationships with their family and friends, emotional well-being, and coping with the symptoms. Throughout this period, pediatric patients suffer from multiple physical and psychological symptoms like

pain, fatigue, nausea, to feelings of sadness, worrying, and irritability [12].

tion in symptoms may improve future psychosocial functioning [16].

The families of children with cancer often try CAM to reduce their children's experience of physical discomfort [1]. Complementary and alternative medicine (CAM), which is not considered as a part of traditional medicine, can be defined as a various medical health care systems, practices, and products. Nowadays, among the most known and applied CAM methods are acupuncture, aromatherapy, osteopathy, yoga, massage, and various herbal supplements [1, 13, 14]. According to the National Center for Complementary and Alternative Medicine (NCCAM), there are three broad categories of CAM: natural products, spiritual care (mindbody), and treatments based on body manipulation [14]. CAMs use in children with cancer has increased worldwide in the last years. The reported frequency of its use varies from 30 to 84% in different surveys [15]. It is important to identify and control symptoms in order to increase quality of life and reduce morbidity. Furthermore, there is some evidence that reducThe following sources of published reviews have been consulting: PubMed, The Cochrane Library, and Web of Science. We prepare search filters and consult databases to be accessed. The search strategy used the following subject headings and text words: "complementary and alternative therapy," "pediatric," "cancer," "quality of life," and "symptom." The search was limited to studies including children age zero to 18 years. Databases were queried from inception to August 2016.

Our inclusion criteria were (i) studies both published in English and between June 1, 2010 and June 31, 2016; (ii) assessment of symptom management and quality of life; and (iii) application of CAM to children with cancer.

Articles were excluded at different levels (title, abstract, or full article) based on the following exclusion criteria: all clinical trials published in a language other than English, not published as a full article, animal trials, clinical trials that only involved adults, population not cancer, descriptive studies that were only conducted on the use of complementary therapy and symptoms, case studied and case series, pilot studies, reviews, book chapters, and letters to the editors and commentaries.

The literature investigations were evaluated according to inclusion/exclusion criteria. Then, after a preliminary test, in which their abstract had been searched detailed, the articles were included in the study.

#### **3. Results**

**Figure 1** illustrates the flow of article selection. A total of 274 articles were identified by the search strategy. Abstracts and titles were initially screened for eligibility. These articles were assessed by the inclusion/exclusion criteria at the different levels of exclusion and yielded a total of 47 articles. Among the 277 articles, 230 (83%) did not meet eligibility criteria. Full text review resulted in 13 articles that were not research studies, 2 articles that included populations other than children and leaving a total of 11 studies included in the review. A total of 20 articles met inclusion criteria and were included in the review (**Table 1**). The articles were published between 2010 and 2016. **Table 1** provides an overview of the studies reviewed, including identified articles, type of intervention, aged group, assessment used measures, and outcomes.

**Figure 1.** Flow diagram of study identification and selection.



than children and leaving a total of 11 studies included in the review. A total of 20 articles met inclusion criteria and were included in the review (**Table 1**). The articles were published between 2010 and 2016. **Table 1** provides an overview of the studies reviewed, including identified articles, type of intervention, aged group, assessment used measures, and outcomes.

**Figure 1.** Flow diagram of study identification and selection.

Barry et al. [22] 11 children and adolescents

Madden et al. [23] 50 children and adolescents

Nguyen et al. [24] 40 children and adolescents

Yeh et al. [25] 22 children and adolescents

Chamorro-Viña et al. [26] 24 children and adolescents

Mehling et al. [21] 23 children and adolescents

da Cunha Batalha and

38 Pediatric Cancer Survivors

Mota [7]

aged 6–13 years

aged 2–18 years

aged 7–12 years

aged 0–18 years

aged 5–18 years

aged 5–18 years

aged 10–18 years

52 children and adolescents

**Articles Aged group Type of intervention Outcomes**

Music Distress ↓

Anxiety ↓

Anxiety ↓ Heart rate ↓ Respiratory rate ↓

Nausea ↓ Fatigue ↓ Depression ↓ Burden symptom ↓ Anxiety (no change)

Creative art therapy Pain ↓

Music Pain ↓

Physical exercise Fatigue ↓

Massage acupressure Pain ↓

Massage Pain ↓

Exercise Quality of life ↑

**Table 1.** The effects of complementary and alternative therapy in studies of children and adolescents with cancer.

Characteristics of the 20 articles included in this review are summarized in **Table 1**. The most commonly used intervention methods were massages (six articles), exercise (six articles), music and android programs (every two articles), and yoga, rehabilitation program, art therapy, and reiki therapy (every one article). The most commonly evaluated these outcomes: pain, anxiety, fatigue, nausea, sleep, and quality of life in the articles. However, in some studies [4, 20, 21], CAM utilization was not effective.

#### **4. Discussion**

A systematic review of 20 studies of complementary alternative intervention in pediatric oncology patients reported that such interventions are feasible and safe, effects on the symptoms and quality of life. Positive effects were also identified on the pain, sleep, anxiety, nausea, fatigue, quality of life, overall activity levels, and specific aspects of physical function.

It has been reported that the majority of pediatric cancer patients suffer from pain and other symptoms by the World Health Organization. In addition, children with cancer are at high risk for the incidence of symptoms that occur in the treatment process and reduce the quality of their life [2]. Also, whole medical systems are accepted as forms of CAM established on comprehensive systems of theory and practice [36]. Increasingly, parents of children with cancer are requesting the use of CAM therapies on the control of symptoms. CAM therapies increase the patient's and family's feelings of control on their symptoms and develop an understanding of active participation and partnership with the health care provider throughout the healing process [37]. Despite the dozens of pediatric CAM utilization studies, important knowledge gaps continue to persist in this field. CAM is not a static concept and can vary greatly from culture to culture [38]. The decision to use CAM in a child or adolescent with cancer requires consideration of the risks and benefits of the proposed therapy balanced with the developmental needs of the patient and the preferences of the family [39].

CAM consists of four domains, that is (a) mind-body medicine (e.g., meditation, imagery, prayer, art, and music); (b) biologically based practices (e.g., herbs, foods, and vitamins); (c) manipulative and body-based practices (e.g., massage, chiropractic, or osteopathic manipulation); and (d) energy medicine (e.g., Reiki, therapeutic touch, and magnetic fields) [36]. Although this integrative review endeavored to identify all CAM interventions used to manage procedure-related pain, anxiety, distress, and quality of life in children and adolescents undergoing cancer treatment, the only two categories of CAM therapies, manipulative and body-based practices and energy medicine, have been studied in regard to procedure-related symptoms and quality of life in the pediatric oncology population. Of note, other types of CAM therapies, including biologically based therapies (such as herbs, foods, and vitamins), energy therapies (such as acupuncture), and mind-body medicine, have been used for management of nonprocedural cancer-related symptoms (e.g., pain, nausea) and quality of life in children and adolescents with cancer [39]; however, none of these CAM therapies were identified as having been studied in the context of relief of procedure-related symptoms and quality of life in children or adolescents with cancer. Unfortunately, the past 5 years have seen little improvement in the reporting of pediatric CAM utilization data on the children with cancer. Although sample size varied substantially, the largest proportion of studies had ≤50 participants.

Our review had several limitations. In particular, our review includes a focus on pediatric cancer patients, and we only evaluated articles published in the last 5 years, accessed full text articles.

#### **Disclosures and acknowledgements**

No funding was received for this review, and there are no financial conflicts of interest associated with this manuscript.

#### **Author details**

**4. Discussion**

40 Pediatric Cancer Survivors

of the family [39].

participants.

articles.

A systematic review of 20 studies of complementary alternative intervention in pediatric oncology patients reported that such interventions are feasible and safe, effects on the symptoms and quality of life. Positive effects were also identified on the pain, sleep, anxiety, nausea, fatigue, quality of life, overall activity levels, and specific aspects of physical function.

It has been reported that the majority of pediatric cancer patients suffer from pain and other symptoms by the World Health Organization. In addition, children with cancer are at high risk for the incidence of symptoms that occur in the treatment process and reduce the quality of their life [2]. Also, whole medical systems are accepted as forms of CAM established on comprehensive systems of theory and practice [36]. Increasingly, parents of children with cancer are requesting the use of CAM therapies on the control of symptoms. CAM therapies increase the patient's and family's feelings of control on their symptoms and develop an understanding of active participation and partnership with the health care provider throughout the healing process [37]. Despite the dozens of pediatric CAM utilization studies, important knowledge gaps continue to persist in this field. CAM is not a static concept and can vary greatly from culture to culture [38]. The decision to use CAM in a child or adolescent with cancer requires consideration of the risks and benefits of the proposed therapy balanced with the developmental needs of the patient and the preferences

CAM consists of four domains, that is (a) mind-body medicine (e.g., meditation, imagery, prayer, art, and music); (b) biologically based practices (e.g., herbs, foods, and vitamins); (c) manipulative and body-based practices (e.g., massage, chiropractic, or osteopathic manipulation); and (d) energy medicine (e.g., Reiki, therapeutic touch, and magnetic fields) [36]. Although this integrative review endeavored to identify all CAM interventions used to manage procedure-related pain, anxiety, distress, and quality of life in children and adolescents undergoing cancer treatment, the only two categories of CAM therapies, manipulative and body-based practices and energy medicine, have been studied in regard to procedure-related symptoms and quality of life in the pediatric oncology population. Of note, other types of CAM therapies, including biologically based therapies (such as herbs, foods, and vitamins), energy therapies (such as acupuncture), and mind-body medicine, have been used for management of nonprocedural cancer-related symptoms (e.g., pain, nausea) and quality of life in children and adolescents with cancer [39]; however, none of these CAM therapies were identified as having been studied in the context of relief of procedure-related symptoms and quality of life in children or adolescents with cancer. Unfortunately, the past 5 years have seen little improvement in the reporting of pediatric CAM utilization data on the children with cancer. Although sample size varied substantially, the largest proportion of studies had ≤50

Our review had several limitations. In particular, our review includes a focus on pediatric cancer patients, and we only evaluated articles published in the last 5 years, accessed full text Ayşe Gürol1 \* and Sevinç Polat2 \*


#### **References**


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[8] Aghabati, N., Mohammadi, E., & Pour Esmaiel, Z. (2010). The Effect of Therapeutic Touch on Pain and Fatigue of Cancer Patients Undergoing Chemotherapy. Evidence-

[9] Tomlinson, D., Hinds, P. S., Ethier, M. C., Ness, K. K., Zupanec, S., & Sung, L. (2013). Psychometric Properties of Instruments Used to Measure Fatigue in Children and Adolescents With Cancer: A Systematic Review. Journal of Pain and Symptom

[10] Tomlinson, D., Diorio, C., Beyene, J., & Sung, L. (2014). Effect of Exercise on Cancer-Related Fatigue: A Meta-Analysis. American Journal of Physical Medicine & Rehabilitation,

[11] Qutob, A. F., Gue, S., Revesz, T., Logan, R. M., & Keefe, D. (2013). Prevention of Oral Mucositis in Children Receiving Cancer Therapy: A Systematic Review and Evidence-

[12] Huijer, H. A. S., Sagherian, K., & Tamim, H. (2013). Quality of Life and Symptom Prevalence as Reported by Children with Cancer in Lebanon. European Journal of Oncology Nursing,

[13] Bishop, F. L., Prescott, P., Chan, Y. K., Saville, J., von Elm, E., & Lewith, G. T. (2010). Prevalence of Complementary Medicine Use in Pediatric Cancer: A Systematic Review.

[14] Poder, T. G., & Lemieux, R. (2014). How Effective Are Spiritual Care and Body Manipulation Therapies in Pediatric Oncology? A Systematic Review of the Literature. Global Journal

[15] Turhan, A. B., & Bör, Ö. (2016). Use of Herbs or Vitamin/Mineral/Nutrient Supplements by Pediatric Oncology Patients. Complementary Therapies in Clinical Practice, 23, 69–74.

[16] Dupuis, L. L., Ethier, M. C., Tomlinson, D., Hesser, T., & Sung, L. (2012). A Systematic Review of Symptom Assessment Scales in Children with Cancer. BMC Cancer, 12(1), 430. [17] Ndao, D. H., Ladas, E. J., Bao, Y., Cheng, B., Nees, S. N., Levine, J. M., & Kelly, K. M. (2013). Use of Complementary and Alternative Medicine Among Children, Adolescent, and Young Adult Cancer Survivors: A Survey Study. Journal of Pediatric Hematology/

[18] Adams, D., Spelliscy, C., Sivakumar, L., Grundy, P., Leis, A., Sencer, S., & Vohra, S. (2013). CAM and Pediatric Oncology: Where Are All The Best Cases?. Evidence-Based

[19] Karalı, Y., Demirkaya, M., & Sevinir, B. (2012). Use of Complementary and Alternative Medicine in Children with Cancer: Effect on Survival. Pediatric Hematology and

[20] Hooke, M. C., Garwick, A. W., & Neglia, J. P. (2013). Assessment of Physical Performance Using the 6-Minute Walk Test in Children Receiving Treatment for Cancer. Cancer

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42 Pediatric Cancer Survivors

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Complementary and Alternative Medicine, 2013, 6 p.


#### **Chapter 4**

## **The Forgotten Children**

Christopher Kuo and Paul M. Kent

Additional information is available at the end of the chapter

http://dx.doi.org/10.5772/67042

#### **Abstract**

[33] Miladinia, M., Fakharzadeh, L., Zarea, K., & Mousavi Nouri, E. (2016). Anxiety Control in the Iranian Children with Chronic Leukemia: Use of a Non-drug Method. International

[34] Müller, C., Krauth, K. A., Gerß, J., & Rosenbaum, D. (2016). Physical Activity and Health-Related Quality of Life in Pediatric Cancer Patients Following A 4-Week Inpatient

[35] Susan E. Thrane, Scott H. Maurer, Dianxu Ren, Cynthia A. Danford, Susan M. Cohen. Reiki Therapy for Symptom Management in Children Receiving Palliative Care A Pilot Study. American Journal Hospice and Palliative Medicine, (First Published 10 Jul 2016), February 7, 2016, http://journals.sagepub.com/doi/full/10.1177/1049909116630973. [36] NCCAM. CAM Basics. 2007. Retrieved April 21, 2009, from http://nccam.nih.gov/health/

[37] Sencer, S. F., & Kelly, K. M. (2007). Complementary and Alternative Therapies in

[38] Surette, S., Vanderjagt, L., & Vohra, S. (2013). Surveys of Complementary and Alternative Medicine Usage: A Scoping Study of the Paediatric Literature. Complementary Therapies

[39] Landier, W., & Alice, M. T. (2010). Use of Complementary and Alternative Medical Interventions for The Management of Procedure-Related Pain, Anxiety, and Distress in Pediatric Oncology: An Integrative Review. Journal of Pediatric Nursing, 25(6), 566–579.

Pediatric Oncology. Pediatric Clinics of North America, 54(6), 1043–1060.

Rehabilitation Program. Supportive Care in Cancer, 24:3793–3802.

Journal of Pediatrics, 4(1), 1225–1231.

44 Pediatric Cancer Survivors

whatiscam/overview.htm.

in Medicine, 21, S48–S53.

The "forgotten children" of pediatric cancer are the siblings. There is a dearth of literature published on the effects of cancer on the siblings' psychosocial state. Despite significant improvements made in the survival of pediatric cancer patients, the psychosocial health of the siblings remains the same. The siblings' need for support and understanding continue to go unnoticed. The aim of this chapter is to shed light on the roles siblings play in the pediatric cancer trajectory, as well as to recognize the emotional and psychological toll they endure through the experience of diagnosis, treatment, survival, and bereavement as the "forgotten children."

**Keywords:** forgotten children, siblings of children with cancer, pediatric cancer, psychosocial, siblings cancer trajectory

#### **1. Introduction**

"*I was the one that had to convince my parents to let Stanley stop all curative treatment. It was traumatic. To feel like you're giving up, but obligated to do what your dying brother asks, and to realize that his time was up. It wasn't the palliative service or his primary oncologist's job to do it. It was my job. I was the only one that could get through to our parents, and 'til this day I still remember… telling our parents that it's time to let go*."

The three common themes of siblings of childhood cancer include changing lives, intense feelings, and unmet needs [1]. The sibling bond is one of the most powerful and lengthy connections across a lifetime [2]. It is a source of unconditional love mixed with rivalry. Siblings shape each other's identity. Thus, understanding how pediatric cancer can affect healthy siblings is fundamental to the patient's psychosocial care. The siblings of children with cancer are often missed or neglected and known as the "forgotten children" [3–5].

In the late 1980s, the emotional disorders in siblings of children with chronic illnesses were a new focus in the literature [4]. Following these studies were reports focusing specifically on siblings of pediatric cancer patients. Carpenter et al. [6] designed one of the earlier studies to utilize camping programs to address and investigate how siblings of children with cancer were feeling. In 1999, guidelines were established by the International Society of Pediatric Oncology (SIOP) working committee on psychosocial issues in pediatric oncology to provide assistance to siblings of children with cancer [7]. The guidelines addressed different domains of cancer trajectory such as diagnosis, treatment, relapse, and completion of treatment. The authors hoped to involve siblings of children with cancer throughout their siblings' experiences with cancer [7]. However, two decades later, many of these issues they sought to address, such as the feelings of isolation, lack of involvement, and lack of understanding, continue to exist [2].

Pediatric cancer is a disparate illness experience from adult cancer and elicits different approaches in families. The burdens of pediatric cancer include the long-term psychosocial effects, compromised social well-being on the child and the family, chronic medical conditions, and the mental and financial drain upon the families [8]. The initial diagnosis of childhood cancer brings a significant level of distress to the entire family, with the death of a child as the most traumatic experience a family suffers [2].

Caring for a child with cancer is extremely demanding and stressful. Due to the intimate and personal emotional connections of family caregivers, the burdens they face are unequivocally different than those faced by pediatric oncologists or the patient. In addition, family caregivers often unconsciously share the unyielding burden of cancer with the ill child. Throughout treatment, the focus inevitably is on the ill child, leaving the siblings in a vulnerable position [2]. Published literature remains scarce on the psychosocial distress of siblings. These circumstances highlight the need to address pediatric cancer through the siblings' perspective.

#### **2. Body**

#### **2.1. Diagnosis**

#### "*Seeing him there made me think*, '*Why is it him? Why is it not me?*' [9]."

From the moment the diagnosis is given, until their death, siblings of children with cancer are unmoored. Cancer affects patients and families both emotionally and physically [10]. From the time of diagnosis to treatment, survivorship, recurrence, and palliation, the incidence of patient's emotional distress ranges from 35% to 45% [11–13]. Psychological distress has become the "sixth vital sign" in cancer care; however, there is little existing research focusing on the "sixth vital sign" of the siblings [10].

Family dynamic is always disrupted when a child is diagnosed with cancer. During diagnosis, families are hurled into chaos and haunted by complex medical language, life-or-death decisions, and emergency admissions of unknown duration [8]. Parents face loss of employment, divorce/separation, relocation of home, and often decide not to have more children [14]. Siblings become overwhelmed with the lack of support and burden of the unknown. Regardless of age, siblings are often forced to take on roles that exceed their maturity level. They are expected to take on adult responsibilities and decision-making roles, such as caring for the family, becoming financially independent, and making informed medical decisions for the ill sibling [15]. Siblings may also act as the mediator between parents who may disagree about treatment or otherwise face marital difficulties. Ultimately, these myriad roles may lead to intrusive thoughts and conflicting emotions such as anger, jealousy, fear, loneliness, or guilt [16].

"*It was exhausting, to say the least, to try to live a normal life. To continue to go to my classes pretending that everything was okay, while deep down inside everything was crumbling apart. Stanley just got diagnosed with cancer. I had to make sure my parents were mentally and emotionally stable. I had to make sure I was there for Stanley, my parents and my younger brother. I was trying my best to hold everything together. Ironically, everything was falling apart, yet no one could tell from the outside*."

#### *2.1.1. Isolation*

In the late 1980s, the emotional disorders in siblings of children with chronic illnesses were a new focus in the literature [4]. Following these studies were reports focusing specifically on siblings of pediatric cancer patients. Carpenter et al. [6] designed one of the earlier studies to utilize camping programs to address and investigate how siblings of children with cancer were feeling. In 1999, guidelines were established by the International Society of Pediatric Oncology (SIOP) working committee on psychosocial issues in pediatric oncology to provide assistance to siblings of children with cancer [7]. The guidelines addressed different domains of cancer trajectory such as diagnosis, treatment, relapse, and completion of treatment. The authors hoped to involve siblings of children with cancer throughout their siblings' experiences with cancer [7]. However, two decades later, many of these issues they sought to address, such as the feelings of isolation, lack of involvement, and lack of understanding,

Pediatric cancer is a disparate illness experience from adult cancer and elicits different approaches in families. The burdens of pediatric cancer include the long-term psychosocial effects, compromised social well-being on the child and the family, chronic medical conditions, and the mental and financial drain upon the families [8]. The initial diagnosis of childhood cancer brings a significant level of distress to the entire family, with the death of a child

Caring for a child with cancer is extremely demanding and stressful. Due to the intimate and personal emotional connections of family caregivers, the burdens they face are unequivocally different than those faced by pediatric oncologists or the patient. In addition, family caregivers often unconsciously share the unyielding burden of cancer with the ill child. Throughout treatment, the focus inevitably is on the ill child, leaving the siblings in a vulnerable position [2]. Published literature remains scarce on the psychosocial distress of siblings. These circumstances highlight the need to address pediatric cancer through the siblings' perspective.

From the moment the diagnosis is given, until their death, siblings of children with cancer are unmoored. Cancer affects patients and families both emotionally and physically [10]. From the time of diagnosis to treatment, survivorship, recurrence, and palliation, the incidence of patient's emotional distress ranges from 35% to 45% [11–13]. Psychological distress has become the "sixth vital sign" in cancer care; however, there is little existing research focusing

Family dynamic is always disrupted when a child is diagnosed with cancer. During diagnosis, families are hurled into chaos and haunted by complex medical language, life-or-death decisions, and emergency admissions of unknown duration [8]. Parents face loss of employment, divorce/separation, relocation of home, and often decide not to have more children [14]. Siblings

continue to exist [2].

46 Pediatric Cancer Survivors

**2. Body**

**2.1. Diagnosis**

as the most traumatic experience a family suffers [2].

"*Seeing him there made me think*, '*Why is it him? Why is it not me?*' [9]."

on the "sixth vital sign" of the siblings [10].

The "forgotten children" are isolated from support systems both inside and outside the family [3–5]. The siblings may become self-centered, lonely, and envious of diverted parental attention. Their distress stems from the changes in family dynamics and routine; concerns over the cause and outcome of the illness; observing their sibling's suffering; and feelings of unworthiness, guilt, anger, sadness, and rejection [17–21]. Compared with siblings of children with other chronic illnesses, siblings of children with cancer endure more emotional distress and adaptive difficulties [22].

The difference between patient and caregiver psychological distress varies over time [23]. There is significantly more distress on the caregiver when the patient is receiving treatment initially. However, 1–2 months after initiating treatment, patients report more distress than their caregivers [23]. During their treatment course, siblings experience progressive physical and emotional demands, while the healthcare team tends to the patient. However, as time progresses, the psychological distress between the patient and the siblings becomes the same. SIOP recommends that early intervention with siblings should be implemented to prevent the initial development of psychological distress [7, 23].

"*I remember Stanley was brought to the ED once due to shortness of breath. I got a call from my mom yelling that I need to be there immediately. That night felt like an eternity. I thought he was going to die. I didn't want to let him go, and I wasn't ready. It happened so quickly. Ever since then, I worry if every day is the last day for him*."

The lack of attention to the siblings is shown in the discrepancy between survivor-parent and sibling-parent reports of health-related quality of life (HRQL) [24]. Survivors reported higher HRQL than parent-proxy reports, whereas siblings reported lower HRQL than parent-proxy reports, suggesting that parents often see their child who survived cancer as doing worse than their child without a history of cancer, although both the survivor and sibling report similar HRQL [24]. This discrepancy between parents' report and siblings' own report of their physical, emotion, and social well-being reflects on the inherent parental bias that siblings are always "fine," thereby requiring less attention than their sick child [24].

Children need to develop competencies across a number of areas as they grow. Yet siblings of children with cancer are often limited to their engagement in daily activities, such as leisure and peer relationships. Infants and toddlers are most at risk for behavioral or emotional problems as they interpret the changes in the family as rejection [25]. Many younger siblings (age, 7–11) have impaired emotional/social and decreased quality of life even 2 years after the cancer diagnosis. Others have reported that adolescent siblings appear to be more at risk for adjustment difficulties [26].

Guggemos et al. [27] compared 14 siblings of children diagnosed with cancer with matched control group of 18 children age 6–12 and discovered that 2 weeks after the cancer diagnosis, siblings of children with cancer displayed more guilt or shame, avoided displaying interpersonal conflicts, showed problems of dysregulation, and had significantly more elements of disruptions, destruction and themes of dissociation. The well siblings have a tendency to manipulate and control the situation and the interviewer by changing the rules of play, which reflects their confusion and fear of losing control over the course of the story [27]. It is suggested that shortly after diagnosis, siblings showed clear reactions of intrapsychic adjustment that may be prognostic for the later development of mental illness [27]. All siblings described a sense of shock, fear, uncertainty, and loneliness following the diagnosis of cancer [9].

"*I started drinking and partying but never got in trouble. I would be blackout drunk and driving home… So there, I think, I wanted somebody to ask me, 'How are you doing?*' *but nobody ever did* [15]."

#### **2.2. Treatment phase**

Through being a sibling-caregiver, siblings have been reported to develop unique ways of being in the world, consisting of three themes revolving around the family: committing to keeping the family together, being present, and enduring sadness [28]. One of the most common experiences that siblings have during treatment is the disintegration of their normal life routine. The continual shift of family's focus to the child with cancer forces the healthy siblings to experience chaos and disorder in their personal and family life [29].

During the treatment phase, siblings often undergo an emotional roller coaster, experiencing a mixture of positive and negative emotions: the initial feelings of fear and uncertainty continue to linger, their lives revolve around their siblings' suffering, and family life remains in limbo [9].

"*Her [warning sign] is temperatures and infections. We always have a bag packed. We are always prepared to leave* [9]."

"*I don't plan anything; I don't; I haven't for years. We go from day to day- that's the only way I can make it work. If I plan for anything further than 2–3 days in advance, it doesn't work. It never seems to work, and I just don't bother anymore* [30]."

During treatment, siblings often have inadequate information about details of the cancer. The family may withhold information due to concerns of sibling's young age and their own limited understanding [29]. Younger siblings (6–10 years old) might not comprehend the gravity of the disease until they witness the alopecia, fatigue, weight loss, and other physical changes of their siblings [29]. These siblings can be emotionally trapped, and their peers are too young or naïve to understand cancer and death. Eventually, the siblings cultivate inexpressible sentiments, and end up internalizing the negative emotions.

A study by Prchal and Landolt. [31] showed that at school, siblings are frequently bombarded with questions regarding the ill child's condition and diagnosis from their teachers and classmates. Siblings ultimately preferred to volunteer the information about their ill sibling's condition instead of being forced to report. Many siblings put up a facade of normalcy to avoid discussing their sibling's condition and to avoid pity, which may make them uncomfortable.

"*Well, everyone at school came to me and asked how my brother was doing. Even the teachers kept asking. And after a while I thought, why do they always have to come and ask me?* [31]"

"*Eventually, I started lying to the question 'how many siblings do you have?*' *just to avoid discussing the fact that my brother has cancer. I hate that question and I hate having to talk about Stanley's cancer. I hate anticipating the sympathetic stares just because Stanley has cancer. Not a lot of people knew Stanley had cancer. I was living a double life*."

Older siblings (11–18 years old) may be able to look after their brother or sister with sympathy [29]. However, they may also experience learning difficulties at school and have diminished peer interactions [29]. Siblings may also experience a mix of empathy, worry, anger, jealousy, and a loss of self-esteem [29]. Despite these difficulties, several studies have shown that the "forgotten children" may transcend the chaos [29], reporting strengthened relationships with their ill brother/sister, deep appreciation for time spent together, a desire to do more together whenever possible, and they continue to uphold a positive attitude when assisting with family matters [9, 29]. Siblings become more mature and sensible, independent, and able to help with family routines and household duties [29]. They develop an impeccable sense of resilience, sympathy, and love for others [29]. Many siblings reconstruct their roles as the sick brother's or sister's protector, constantly facing unpleasant situations with an optimistic outlook and making efforts to reconstruct the family order [29]. They learn that "being present" was essential to their peace of mind [28]. They balance solitude and abandonment with a need for belonging and intimacy in the family [29]. Maintaining family cohesiveness becomes the focus during the treatment phase.

#### **2.3. Survivorship**

Children need to develop competencies across a number of areas as they grow. Yet siblings of children with cancer are often limited to their engagement in daily activities, such as leisure and peer relationships. Infants and toddlers are most at risk for behavioral or emotional problems as they interpret the changes in the family as rejection [25]. Many younger siblings (age, 7–11) have impaired emotional/social and decreased quality of life even 2 years after the cancer diagnosis. Others have reported that adolescent siblings appear to be more at risk for

Guggemos et al. [27] compared 14 siblings of children diagnosed with cancer with matched control group of 18 children age 6–12 and discovered that 2 weeks after the cancer diagnosis, siblings of children with cancer displayed more guilt or shame, avoided displaying interpersonal conflicts, showed problems of dysregulation, and had significantly more elements of disruptions, destruction and themes of dissociation. The well siblings have a tendency to manipulate and control the situation and the interviewer by changing the rules of play, which reflects their confusion and fear of losing control over the course of the story [27]. It is suggested that shortly after diagnosis, siblings showed clear reactions of intrapsychic adjustment that may be prognostic for the later development of mental illness [27]. All siblings described a sense of shock, fear, uncertainty, and loneliness following the diagnosis of cancer [9].

"*I started drinking and partying but never got in trouble. I would be blackout drunk and driving home… So there, I think, I wanted somebody to ask me, 'How are you doing?*' *but nobody ever did* [15]."

Through being a sibling-caregiver, siblings have been reported to develop unique ways of being in the world, consisting of three themes revolving around the family: committing to keeping the family together, being present, and enduring sadness [28]. One of the most common experiences that siblings have during treatment is the disintegration of their normal life routine. The continual shift of family's focus to the child with cancer forces the healthy sib-

During the treatment phase, siblings often undergo an emotional roller coaster, experiencing a mixture of positive and negative emotions: the initial feelings of fear and uncertainty continue to linger, their lives revolve around their siblings' suffering, and family life remains in limbo [9]. "*Her [warning sign] is temperatures and infections. We always have a bag packed. We are always* 

"*I don't plan anything; I don't; I haven't for years. We go from day to day- that's the only way I can make it work. If I plan for anything further than 2–3 days in advance, it doesn't work. It never seems to* 

During treatment, siblings often have inadequate information about details of the cancer. The family may withhold information due to concerns of sibling's young age and their own limited understanding [29]. Younger siblings (6–10 years old) might not comprehend the gravity of the disease until they witness the alopecia, fatigue, weight loss, and other physical changes of their siblings [29]. These siblings can be emotionally trapped, and their peers are too young

lings to experience chaos and disorder in their personal and family life [29].

adjustment difficulties [26].

48 Pediatric Cancer Survivors

**2.2. Treatment phase**

*prepared to leave* [9]."

*work, and I just don't bother anymore* [30]."

With improved survival, late adverse outcomes of treatment have become more prevalent, posing a new challenge for the family caregivers [32]. As patients gradually transition into survivorship, the roles and demands of caregivers change [33]. The early transition can be uncertain and overwhelm families with a sense of uncertainty about the future [33]. The family may ruminate on the thought of recurrence or a secondary malignancy. Unfortunately, studies on sibling caregivers in these transitional periods have not been done.

During the course of cancer, siblings center activities around their ill sibling. They relinquish valued personal activities, relationships, and opportunities. Once treatment is over, some siblings have an extremely difficult time restoring normalcy. Past relationships may no longer exist; friends, social support, and opportunities may have moved on [33]. Siblings have a strong desire to reintegrate back to a normal life but often end up establishing a new normal instead.

In contrast to the transition period, studies have been done on sibling caregivers after treatment completion. In 2015, Guggemos et al. [27] reported that siblings of children with cancer at the end of treatment continue to display dysregulative behaviors and continue to remain at risk. Several studies have reported that siblings of young cancer survivors have more negative psychological distress (e.g., fear, worry, anger), more posttraumatic stress, and poorer quality of life compared to controls [34, 35]. In contrast, a 1995 study of 60 siblings of cancer survivors measuring psychosocial adjustment found that after treatment, siblings adjusted well with no major differences in psychosocial functioning compared to peers with healthy siblings [4, 36, 37]. They hypothesized that after treatment, siblings are able to distance themselves from the cancer experience, whereas survivors continue to confront the disease [4].

#### *2.3.1. Posttraumatic growth*

It has been theorized that after the traumatic experience with cancer, individuals will achieve posttraumatic growth (PTG). PTG is defined as developing resilience from a previous trauma, perceiving benefits from it and developing beyond the original level of psychological functioning [38]. Siblings have been reported to experience less PTG than parents but did experience similar levels of PTG to the survivors [39]. Older siblings were found to utilize more active coping strategies such as actively seeking social support [39]. The longer it had been since the original cancer diagnosis, the less avoidant coping strategies and more positive life satisfaction were present [39]. PTG after cancer experience stimulates the development of five themes, making sense of cancer experience, appreciation of life, greater self-knowledge, positive attitude toward family, and a desire to pay back society [40]. The experience of being a part of their siblings' cancer experience triggers an existential challenge of life, which leads to a search for meaning or purpose to life. Ultimately, siblings may make up their own meaning in order to resolve or make sense of the tragedy [40]. They may live by the carpe diem philosophy, living more consciously and able to put things in perspective [40]. Currently, more studies are needed to establish a general consensus on the psychological effects of siblings during the survival stage.

#### **2.4. Bereavement**

Although the survival of childhood cancer has approached near 80% due to treatment advances [41], many cancers remain terminal at the time of diagnosis (i.e., intrinsic pontine glioma), or the state of science has stagnated for decades with no increase in survival (i.e., osteosarcoma) [8]. Many of the patients ultimately succumb. The cancer journey initially begins with the hope for cure or remission. Yet the optimism often plateaus as the families eventually realize that the hope may become one for a comfortable ending [8].

#### *2.4.1. Communication*

Studies have shown very poor communication with siblings regarding the death of their brother/sister. In the last 24 hours before the loss, 43% of the siblings reported getting no information about the impending death of their siblings from a family member, while 70% were not informed by one of the healthcare professionals [42]. Additionally, it was not until <24 hours before their brother's/sister's death that the sibling understood their death intellectually (53%) and emotionally (76%) [42]. Eighty-four percent reported that nobody talked to them about what to expect when their brother/sister was dying, and these siblings showed significantly higher levels of anxiety up to 9 years later compared with those who knew what to expect [42]. More than one-fourth did not want to discuss their siblings' death, while onethird wished they had talked more with their families about it [33]. Cancer-bereaved siblings report lower self-esteem, sleep disturbances, and lower levels of maturity 2–9 years after the sibling's loss in comparison with non-bereaved siblings [43]. A nationwide survey in Sweden exploring siblings' experiences of their brother's/sister's cancer death found persistent levels of anxiety 2–9 years later [42].

#### *2.4.2. Death aftermath*

In contrast to the transition period, studies have been done on sibling caregivers after treatment completion. In 2015, Guggemos et al. [27] reported that siblings of children with cancer at the end of treatment continue to display dysregulative behaviors and continue to remain at risk. Several studies have reported that siblings of young cancer survivors have more negative psychological distress (e.g., fear, worry, anger), more posttraumatic stress, and poorer quality of life compared to controls [34, 35]. In contrast, a 1995 study of 60 siblings of cancer survivors measuring psychosocial adjustment found that after treatment, siblings adjusted well with no major differences in psychosocial functioning compared to peers with healthy siblings [4, 36, 37]. They hypothesized that after treatment, siblings are able to distance themselves from the cancer

It has been theorized that after the traumatic experience with cancer, individuals will achieve posttraumatic growth (PTG). PTG is defined as developing resilience from a previous trauma, perceiving benefits from it and developing beyond the original level of psychological functioning [38]. Siblings have been reported to experience less PTG than parents but did experience similar levels of PTG to the survivors [39]. Older siblings were found to utilize more active coping strategies such as actively seeking social support [39]. The longer it had been since the original cancer diagnosis, the less avoidant coping strategies and more positive life satisfaction were present [39]. PTG after cancer experience stimulates the development of five themes, making sense of cancer experience, appreciation of life, greater self-knowledge, positive attitude toward family, and a desire to pay back society [40]. The experience of being a part of their siblings' cancer experience triggers an existential challenge of life, which leads to a search for meaning or purpose to life. Ultimately, siblings may make up their own meaning in order to resolve or make sense of the tragedy [40]. They may live by the carpe diem philosophy, living more consciously and able to put things in perspective [40]. Currently, more studies are needed to establish a general consensus on the psychological effects of siblings

Although the survival of childhood cancer has approached near 80% due to treatment advances [41], many cancers remain terminal at the time of diagnosis (i.e., intrinsic pontine glioma), or the state of science has stagnated for decades with no increase in survival (i.e., osteosarcoma) [8]. Many of the patients ultimately succumb. The cancer journey initially begins with the hope for cure or remission. Yet the optimism often plateaus as the families

Studies have shown very poor communication with siblings regarding the death of their brother/sister. In the last 24 hours before the loss, 43% of the siblings reported getting no information about the impending death of their siblings from a family member, while 70% were not informed by one of the healthcare professionals [42]. Additionally, it was not until

eventually realize that the hope may become one for a comfortable ending [8].

experience, whereas survivors continue to confront the disease [4].

*2.3.1. Posttraumatic growth*

50 Pediatric Cancer Survivors

during the survival stage.

**2.4. Bereavement**

*2.4.1. Communication*

During the time of death, some siblings described that death came so rapidly that they weren't able to be there [42]. Those that were present at the time of death expressed gratitude and closure, including a sense of relief as death alleviated further suffering [42]. Shortly after death, however, some siblings felt emptiness and guilt that they were the ones still alive [42].

Siblings 12 years bereaved (mean age of 26 years) reported higher illegal drug and alcohol use during the year immediately after their sibling's death than before their sibling's diagnosis but then eventually returned to baseline [44]. Additionally, a similar trajectory was observed with anxiety and depression scores consistent with high distress in those who were unprepared for their sibling's death, unable to say goodbye and had not worked through their grief [44]. Twelve years later, 88% of respondents reported that the loss of sibling continued to affect their daily lives, 12% negatively, 45% positively, and impacted their education and career choices [44]. Although the majority of bereaved siblings have not worked through their grief, most siblings ultimately recover from the cancer experience without residual psychological distress [45].

van der Geest et al. [46] studied parental perceptions of bereaved sibling's well-being. They found that 43% of parents reported that siblings at home experienced a lot of distress in the period immediately before and after the death of the sibling and 46% reported continued negative consequences even after 5 years [46]. This correlates to Rosenberg et al.'s [44] report that during the immediate period surrounding loss, siblings experience severe emotional trauma, but majority ultimately normalize after 12 years.

Time, communication, and consistent support during the bereavement phase may allow siblings to heal. Furthermore, equivalent to PTG in survival stage, positive outcomes upon bereavement were also reported, such as better communication (36%), more maturity (43%), more kindness (45%), and more confidence than peers in their age (17%) [44].

#### **2.5. Interventions/support**

Since 1999, guidelines have been established to address siblings' needs; however, many of the recommendations relied on the parents, and on supportive services, which typically are not established in the hospital system (psychosocial support programs, sibling support group, and parent support groups), which make these guidelines unrealistic [7]. Interestingly, majority of the published perspectives on siblings are through pediatric oncology nursing journals, and pediatric oncology nurses often rate the utility of psychosocial screening tools higher than pediatric oncologists and social workers [47]. In 2005, the National Institute for Health and Clinical Excellence (NICE) in the United Kingdom developed guidance for healthcare professions to address siblings of children with cancer [48]. NICE suggested structured psychosocial assessment at significant time points throughout the cancer trajectory such as at diagnosis, treatment, relapse, and bereavement [48]. Although NICE guidelines are helpful, it is unknown if they are being utilized. The NICE guidelines parallel a report from the Institute of Medicine in the United States, which emphasized that the efforts to improve biopsychosocial health of children with cancer should be extended to members of their family [49]. Between 1990 and 2012, various organizations attempted to create standards, guidelines, and consensus reports regarding pediatric psycho-oncology care (**Tables 1**–**3**). However, rarely do these published reports specifically address siblings as a separate entity from "family" Of children with cancer, even though there is an understanding that siblings have a unique cancer experience. Additionally, between 1990 and 2009, publications on the experiences of siblings of children with cancer grew dramatically [34]. Various qualitative and quantitative studies have been published, but little has changed since these reports. Siblings continue to be the "forgotten children" in the family, and their needs remain unmet.

Currently, there is no standardized tool designed for healthcare professionals (HCPs) to screen for psychosocial needs in pediatric cancer [50]. Available comprehensive screening tools are listed in **Table 4**. Psychosocial Care Checklist (PCCL) is a tool developed to address this gap [51]. The results indicated that oncologists and nurses do not seem to have the same awareness of psychosocial problems in the family compared to the social workers [50].

#### *2.5.1. Intervention*

One of the earliest interventions developed for siblings of children with cancer was peer support camp [6]. Camp as a therapeutic intervention has been utilized in various chronic diseases such as diabetes, asthma, renal disease, and cancer. However, camps in pediatric oncology have mainly focused on the child with cancer and rarely on the "forgotten children." Although camps for siblings do exist, the majority of them are for bereaved siblings [52]. Sidhu et al. [2] developed therapeutic peer support camp as an intervention for siblings of 8–13 years of children with cancer on active treatment. Siblings who attended the camp reported lower levels of distress, decreased isolation, decreased anxiety, improved social competence, and greater social acceptance [2]. Through camp, siblings had significant reduction in the fear of cancer, manifested through improved knowledge of cancer and its treatment [2].

#### *2.5.2. What siblings want*

Lovgren et al. [53] conducted a nationwide survey of bereaved siblings answering open-ended question about what advice they would give to healthcare professionals (HCPs) working with pediatric cancer patients and their families. The commonly reported advice was related to the siblings' wish for support regardless of their age [53]. They wanted insight into their own feelings in relation to their family and information about their sibling's disease and care [53]. Siblings also wished for support groups, activities, someone to talk to, and asked HCP to not give up trying to offer help [53]. Surprisingly, the "little things" were just as meaningful, such as when HCPs offered them a game, a sticker, a snack, or a hug [53].

and parent support groups), which make these guidelines unrealistic [7]. Interestingly, majority of the published perspectives on siblings are through pediatric oncology nursing journals, and pediatric oncology nurses often rate the utility of psychosocial screening tools higher than pediatric oncologists and social workers [47]. In 2005, the National Institute for Health and Clinical Excellence (NICE) in the United Kingdom developed guidance for healthcare professions to address siblings of children with cancer [48]. NICE suggested structured psychosocial assessment at significant time points throughout the cancer trajectory such as at diagnosis, treatment, relapse, and bereavement [48]. Although NICE guidelines are helpful, it is unknown if they are being utilized. The NICE guidelines parallel a report from the Institute of Medicine in the United States, which emphasized that the efforts to improve biopsychosocial health of children with cancer should be extended to members of their family [49]. Between 1990 and 2012, various organizations attempted to create standards, guidelines, and consensus reports regarding pediatric psycho-oncology care (**Tables 1**–**3**). However, rarely do these published reports specifically address siblings as a separate entity from "family" Of children with cancer, even though there is an understanding that siblings have a unique cancer experience. Additionally, between 1990 and 2009, publications on the experiences of siblings of children with cancer grew dramatically [34]. Various qualitative and quantitative studies have been published, but little has changed since these reports. Siblings continue to be the "forgotten children" in the family, and their needs remain unmet. Currently, there is no standardized tool designed for healthcare professionals (HCPs) to screen for psychosocial needs in pediatric cancer [50]. Available comprehensive screening tools are listed in **Table 4**. Psychosocial Care Checklist (PCCL) is a tool developed to address this gap [51]. The results indicated that oncologists and nurses do not seem to have the same awareness of psychosocial problems in the family compared to the social

One of the earliest interventions developed for siblings of children with cancer was peer support camp [6]. Camp as a therapeutic intervention has been utilized in various chronic diseases such as diabetes, asthma, renal disease, and cancer. However, camps in pediatric oncology have mainly focused on the child with cancer and rarely on the "forgotten children." Although camps for siblings do exist, the majority of them are for bereaved siblings [52]. Sidhu et al. [2] developed therapeutic peer support camp as an intervention for siblings of 8–13 years of children with cancer on active treatment. Siblings who attended the camp reported lower levels of distress, decreased isolation, decreased anxiety, improved social competence, and greater social acceptance [2]. Through camp, siblings had significant reduction in the fear of cancer, manifested through improved knowledge of cancer and its

Lovgren et al. [53] conducted a nationwide survey of bereaved siblings answering open-ended question about what advice they would give to healthcare professionals (HCPs) working with

workers [50].

52 Pediatric Cancer Survivors

treatment [2].

*2.5.2. What siblings want*

*2.5.1. Intervention*


**Table 1.** Published standards addressing pediatric cancer population.


**Table 2.** Published guidelines addressing pediatric cancer population.

Information regarding the disease is often intentionally left out to the siblings by parents or HCP. Yet siblings felt that information should be given continuously by the HCPs during treatment, progression, and prognosis [53]. Siblings pointed out that their own needs for information often differed from those of their parents and they had a right to be given information that their parents refused to take in [53]. It was important for HCPs to remain realistic and honest, focus on the bright moments, and promote happiness and hope even during times of suffering [53].

Since 2013, "sibling supporters" have been available to provide support to siblings at six pediatric oncology units in Sweden [54]. They are resource persons whose main task is to see the siblings of those who become sick [54]. They participate in various activities together, listen to their narratives, and are present during the time of illness, survivorship, and bereavement [54]. They facilitated opportunities for similar siblings to meet each other, to discuss things that a sibling was unable to say or understand, and to facilitate conversations with parents and professionals [54]. They were also able to remain positive and create outings for siblings outside the hospital that disassociate them from sickness and death [54].

"*In the hospital, there wasn't really anywhere for siblings to go…I think there needs to be a [designated] place for siblings to go, people for them to talk to* [9]."

Siblings are exceptionally vulnerable to Post-Traumatic Stress Disorder (PTSD) during the initial months after diagnosis [44, 46]: in the first 2 months, 23% and 43% of siblings have full and partial DSM-IV PTSD, respectively [16, 44, 46]. With early psychological intervention,


**Table 3.** Published consensus addressing pediatric cancer population.

Information regarding the disease is often intentionally left out to the siblings by parents or HCP. Yet siblings felt that information should be given continuously by the HCPs during treatment, progression, and prognosis [53]. Siblings pointed out that their own needs for information often differed from those of their parents and they had a right to be given information that their parents refused to take in [53]. It was important for HCPs to remain realistic and honest, focus on the bright moments, and promote happiness and hope even during

Guidelines for assistance to siblings of children with cancer

Structuring psychosocial care in pediatric oncology oriented to specific phases of medical treatment of pediatric cancer patients, specifically focusing on the importance of multidisciplinary teams and the role of psychosocial

Improving outcomes in children and young people

Guidelines published for the support of adolescents and young adults living with cancer and their families

professionals

with cancer

**What did it address? Did it address specifically** 

**to siblings?**

siblings

family

siblings

Yes [7]

No, addressed family as a whole and discussed family-oriented care, but never directly addressed

Yes, addressed siblings but still focused mainly on the

No, addressed family as a whole and discussed family-oriented care, but never directly addressed

**Reference**

[66]

[48]

[67]

Since 2013, "sibling supporters" have been available to provide support to siblings at six pediatric oncology units in Sweden [54]. They are resource persons whose main task is to see the siblings of those who become sick [54]. They participate in various activities together, listen to their narratives, and are present during the time of illness, survivorship, and bereavement [54]. They facilitated opportunities for similar siblings to meet each other, to discuss things that a sibling was unable to say or understand, and to facilitate conversations with parents and professionals [54]. They were also able to remain positive and create outings for siblings

"*In the hospital, there wasn't really anywhere for siblings to go…I think there needs to be a [designated]* 

Siblings are exceptionally vulnerable to Post-Traumatic Stress Disorder (PTSD) during the initial months after diagnosis [44, 46]: in the first 2 months, 23% and 43% of siblings have full and partial DSM-IV PTSD, respectively [16, 44, 46]. With early psychological intervention,

outside the hospital that disassociate them from sickness and death [54].

*place for siblings to go, people for them to talk to* [9]."

times of suffering [53].

**Year published Guidelines** 

54 Pediatric Cancer Survivors

1999 International Society

2000 Researchers at the

2005 National Institute for

2012 National

(SIOP)

**established by**

of Pediatric Oncology

University of Bonn

Health and Clinical Excellence (NICE)

Comprehensive Cancer Network (NCCN)

**Table 2.** Published guidelines addressing pediatric cancer population.


**Table 4.** Comprehensive screening tools for siblings of children with cancer.

siblings reported better psychosocial well-being, better medical knowledge and better social support, but no statistical correlation with acute anxiety or PTSD [16].

Open age-appropriate communications with siblings regarding the possibility of the ill child dying and giving them a chance to say goodbye can provide comfort and closure. Serious psychological issues are rare with the involvement of palliative care [55]. Siblings need guidance on what to expect [29].

"*The moment it came out [diagnosis], I could only think of the fact that my brother could die* [31]."

"*He was [unreasonably] demanding. Sometimes he wanted sausages with ketchup and all sorts of things at 1 o'clock in the morning, and during a certain phase, he got aggressive very fast* [31]."

Bereavement follow-up after the death of a child has been recommended as a standard of care in pediatric oncology [56]. Lichtenthal et al. [56] recommend that a member of the healthcare team should contact the family after a child's death to assess family needs, to identify those at risk for negative psychosocial sequelae, to continue care, and to provide resources for bereavement support. It has been suggested that pediatric palliative care clinicians have an ethical duty of "nonabandonment," to care for the families of children with life-threatening conditions through their illness and times of bereavement [57]. Perhaps, these recommendations should be adopted for the siblings of children with cancer also.

A standard of care for siblings of children with cancer should also be established [58]. Parents and professionals should be advised about tools and therapies to meet siblings' unmet needs (**Table 4**) [58]. These should include psychoeducation, coping and prevention strategies, as well as assessment and treatment of psychopathology spanning diagnosis to bereavement[58].

#### **3. Conclusions**

The scope of medical care for pediatric oncology should extend beyond the control of cancer to the psychosocial care of the child and siblings' family [50]. Standard guidelines, established since the 1990s [7, 48, 49], are rarely implemented as the standard of care. Barriers from implementing them include predisposing factors, enabling factors, and reinforcing factors (**Table 5**) [59].


**Table 5.** Barriers for pediatric oncologists in implementing psychosocial communication.

In North America's pediatric cancer centers, early psychosocial screening is neither consistently nor systematically conducted and/or documented [60]. It is imperative that physicians are aware of the psychosocial issues that exist within the family, as these issues could identify critical factors that may affect the medical treatment and family cohesiveness [50]. PCCL is a promising screening tool that could assist with enhancing HCPs' awareness of the psychosocial issues for the child with cancer and his/her family [50].

Siblings endure various distresses throughout the different stages of cancer trajectory. Although their voices are gradually being heard, the complexity of the roots of their distress requires meticulous attention to dissect and unravel. The goal is to ultimately have a supportive and therapeutic system in place to assist the siblings during their times of distress.

Research on the psychosocial well-being for siblings of children with cancer remains limited. Consistencies with screening and supportive interventions continue to be lacking. A standardized screening tool with early interventional services should be implemented, such as PCCL and sibling supportive camps. Additionally, interdisciplinary awareness of the siblings' psychosocial issues should be increased in order to shed light to their invisibility. The goal is to remember the "forgotten children."

### **Acknowledgements**

siblings reported better psychosocial well-being, better medical knowledge and better social

Open age-appropriate communications with siblings regarding the possibility of the ill child dying and giving them a chance to say goodbye can provide comfort and closure. Serious psychological issues are rare with the involvement of palliative care [55]. Siblings need guid-

"*The moment it came out [diagnosis], I could only think of the fact that my brother could die* [31]."

"*He was [unreasonably] demanding. Sometimes he wanted sausages with ketchup and all sorts of things at 1 o'clock in the morning, and during a certain phase, he got aggressive very fast* [31]."

Bereavement follow-up after the death of a child has been recommended as a standard of care in pediatric oncology [56]. Lichtenthal et al. [56] recommend that a member of the healthcare team should contact the family after a child's death to assess family needs, to identify those at risk for negative psychosocial sequelae, to continue care, and to provide resources for bereavement support. It has been suggested that pediatric palliative care clinicians have an ethical duty of "nonabandonment," to care for the families of children with life-threatening conditions through their illness and times of bereavement [57]. Perhaps, these recommenda-

A standard of care for siblings of children with cancer should also be established [58]. Parents and professionals should be advised about tools and therapies to meet siblings' unmet needs (**Table 4**) [58]. These should include psychoeducation, coping and prevention strategies, as well as assessment and treatment of psychopathology spanning diagnosis to bereavement[58].

The scope of medical care for pediatric oncology should extend beyond the control of cancer to the psychosocial care of the child and siblings' family [50]. Standard guidelines, established since the 1990s [7, 48, 49], are rarely implemented as the standard of care. Barriers from implementing them include predisposing factors, enabling factors, and reinforcing factors

In North America's pediatric cancer centers, early psychosocial screening is neither consistently nor systematically conducted and/or documented [60]. It is imperative that physicians

Enabling factors Lack of consultation time, assessment skills and systems, skills to intervene, role

Predisposing factors Lack of knowledge, training, beliefs and attitudes, self efficacy

definition Reinforcing factors Lack of feedback, rewards, negative consequences

**Table 5.** Barriers for pediatric oncologists in implementing psychosocial communication.

support, but no statistical correlation with acute anxiety or PTSD [16].

tions should be adopted for the siblings of children with cancer also.

ance on what to expect [29].

56 Pediatric Cancer Survivors

**3. Conclusions**

(**Table 5**) [59].

**Barriers Examples**

In loving memory of Stanley Kuo and Sammy Kuo, this chapter is dedicated to Cody Kuo, Amy Chen, Peggy Chen, Angel Chiang, and all the siblings affected by cancer. Special thanks to Jeff Ording.

#### **Author details**

Christopher Kuo¹ and Paul M. Kent²\*

\*Address all correspondence to: paul\_kent@rush.edu

1 Rush Medical College, Chicago, IL, United States

2 Division of Pediatric Hematology/Oncology, Department of Pediatrics, Rush University Medical Center, Chicago, IL, United States

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