Spiritual Care in Pediatric Oncology


Wondered whether God had abandoned me [felt abandoned]

Felt punished by God for my lack of devotion [felt responsible for own predicament]

Wondered what I did for God to punish me [felt responsible for own predicament]

Questioned God’s love for me [questioned lovability and worth/value]

Wondered whether my church had abandoned me [felt abandoned by or outside caring community]

Decided the Devil made this happen [attributed evilness of situation to outside influence]

Questioned the power of God [questioned concept of providence]



Overall, the research supports the importance of religion and spirituality on several fronts: (1) Many patients and families are religious and/or spiritual and would like their faith addressed in their healthcare; (2) many patients and families have religious and/or spiritual needs related to illness that could affect mental health, but go unmet; (3) patients and families, during times of hospitalization, are frequently isolated from their supporting communities; (4) religious and spiritual beliefs affect medical decision making and may conflict with treatments; and (5) religion and spirituality influence healthcare in the community. Additionally, the Joint Commission expects religious and spiritual needs and desires to not be ignored in the healthcare setting (The Joint Commission, Standard R1.01.01.01).



Religion and Spirituality in Pediatric Settings


An article in pediatrics titled Spirituality, Religion, and Pediatrics: Intersecting Worlds of Healing reported that religion and spirituality play important roles in shaping the way families live their lives and therefore may have broader implications for children’s health (Barnes et al. 2000). This may impact everything from how parents seek healthcare for their children or turn to religious and spiritual healing therapies, to specific ways that children cope with multiple aspects of their health and illness or loss. Yet the paper noted that pediatricians and other healthcare providers may be uncomfortable addressing what they assess to be negative aspects of religion or spirituality affecting the health of a child, rather than the important and varied role religion and spirituality play in the ongoing well-being of a child and their family (Barnes et al. 2000). In a paper by Purow et al. (2011), it is noted that spiritual beliefs play an important role in providing comfort and support for children with cancer and their families.

Guidelines for integrating spiritual and religious resources into pediatric practice are listed in Table 18.2:


Table 18.2
Guidelines for integrating spirituality and religious resources into pediatric settings (Barnes et al. 2000)























Anticipate the presence of religious and spiritual concerns

Develop self-awareness of your own spiritual history and perspectives

Become broadly familiar with the religious worldviews of the cultural groups in your patient population

Allow families and children to be your teachers about the specifics

Build strategic interviewing skills and ask questions over time

Develop a relationship with available chaplaincy services

Build a network of local consultants

Refer to family-preferred spiritual care providers

Listen for understanding rather than for agreement or disagreement


Children as Spiritual and Religious Beings


Most of the tools used to explore what is significantly spiritual or religious in a person’s life are adult models. Children frequently experience their spirituality and religion both physically and temporally; for them, this is not so much a cognitive construct or a rational explanation of the irrational as it is purely experiential. Children will respond to their experiences from within their developmental capacity. Spirituality at every age can be transforming as well. Therefore, it is important to have some basic understanding of what the basic developmental tasks, strengths, and distresses are of each major age group.


The Spiritual Life of Young Children


For preschoolers (ages 3–6), awe and trust remain a large part of their experience, but storytelling is becoming compelling for them. They begin to take some responsibility for family rituals such as prayers at meal or bedtime; they will initiate them, remind elders when they haven’t been observed, and are very intrigued with creating their own rituals. If they are learning the stories of their family’s faith system, or the stories of meaning as the family makes meaning, they are able to retell the story, insert themselves in it, and change it to make sense of their particular world.


Case Vignfoette

Christopher, a 4-year-old boy with a brain tumor, wanted the chaplain to read the story of David and Goliath every time she visited. For several days she simply read the story and observed that Christopher became calm and focused during and after hearing the story. His mother was very anxious and afraid to take a strong role in giving her son medications or helping with his mouth care. Christopher had learned his regimen and saw to it that it was followed. He appeared to percevie himself as David facing the Goliath of his disease. Not only did he “live” this story, he was able to articulate it when the chaplain asked him what he liked most about it. “David was very brave, even when other people were afraid [perhaps like his mother?]. He said to Goliath, ‘you can’t beat me’ and he believed it.”


The Spiritual Life of School-Age Children


When ill or hospitalized, the young school-age child (6–10-year-olds) can feel the sense of letting one’s team down, one’s parents down, and one’s self down. A child also may come to feel that he or she has let down his or her religious and spiritual community. For example, some faith traditions place heavy obligations on members for their own healing (“If you have enough faith, you will be healed”), are intolerant of sincere expressions of fear or doubt (“You aren’t supposed to question God,” or fixate on a higher power that is overly punitive. This may compound a child’s feelings of shame and guilt.

The child may live in two separate worlds. One is a logical, “schooled” world of work, organized play, and peer involvement. The other is a private world of imagination, which is still largely mythical and analogical. These worlds are not contradictory for school-age children; rather they are examples of how children experiment with both sides of their brain as they seek a way for logic and myth to be combined and recombined. They use stories to gather and shape their fantasies.


Case Vignette

A chaplain was visiting with Steven a 7-year-old boy with Ewing sarcoma and they talked about the story of Jonah and the Big Fish. As they speculated about Jonah’s thoughts and feelings, Steven made connections to his own experiences. He understood what it felt like to be in a scary, isolated place. He recognized the fear that goes with being carried along on a journey he did not choose, the outcome of which is uncertain. He knew that, in a situation like Jonah’s, one might just wonder what God is up to.

For the later elementary to middle school-age child (11–13 years old), this is a time for rites of passage: for example, first communion, confirmation, youth group, and bar/bat mitzvahs. In addition, the symbols of the faith community have real power and majesty: the ark, the Cross, and the Qur’an. Children use these symbols and turn them over, not only in their hands but also in their psyches, looking for meaning and/or imbuing them with special authority and effectiveness as the following case illustrates.


Case Vignette

In the oncology playroom, Robert, a 12-year-old Christian boy with sarcoma, was fashioning popsicle sticks into an “X” shape on top of a square piece of foam. The chaplain said,

“Hi, Robert. What are you making today?”

“Don’t you know what this is? It’s a God-thing!”

“A God-thing?”

“Yes. Where they put Jesus and he died.”

“Oh, a cross.”

“Yeah. He died.”

“That’s true.”

“They put nails in him.”

“That’s true, too. It must have hurt a lot.”

“Nope! He could get away anytime he wanted!”

Prayers, rituals, blessings, and even cursing can be very powerful for school-age children. Salma, an 11-year-old Muslim girl with rhabdomyosarcoma, was in the hospital during Ramadan. Although younger than the required age for fasting, she wanted to participate in the daily fast. It was a spiritual discipline that she felt deepened her relationship with Allah and increased her potential for healing. Nutrition services were concerned about her health and did not want her to fast. The chaplain met with Salma and her parents and nutritionist to create a plan that would honor her religious beliefs while meeting her nutritional requirements. The team agreed that if Salma was willing to take liquids during the day, she could eat a meal before dawn and after dusk and still meet her nutritional needs.

School-age children judge very quickly and may want people to be punished for breaking the rules of justice as they perceive them. This plays out spiritually when a child feels that God isn’t playing fair and should be held accountable. It is important for spiritual caregivers to listen to the questions and comments of the ill or dying child. It is often more vital to listen than to talk. Children in this age group will ask questions about matters they want to understand. They are not necessarily “comforted” by being put off or given “nice” answers. They can also have “unfinished business.” It may be as simple as a school project or as complex as making up for some real or imagined fault. These are all spiritual tasks.


The Spiritual Life of Adolescents


Decision-making is based on what the adolescent considers important. This is very much a part of their spiritual character and struggle. There is a great deal happening in an adolescent’s life including navigating family, friends, school, society, media, and technology and perhaps religion and spirituality. If spirituality and faith are going to have meaning for the adolescent, it needs to be in a way that helps them organize their worldview and establish their own identity.

Often, the experience in personal relationships drives how adolescents perceive unifying values. Teenagers will often be drawn into faith and spiritual groups because of defining values which seem utopian to the adolescent or, if not utopian, certainly pervasive and “true.” The lure of cults can be very powerful during this developmental stage. These values simply “are” to the adolescent and they frequently do not examine them closely or reflect upon how they “work” or do not “work” in their lives or in the world. Teenagers develop ideologies they may hold to with determination. When they disagree with the values of another, it is often perceived as a difference in the sort of person one is and not based on a difference of ideas. Adolescents will identify and adhere to authority that they deem to have personal worth or is valued by their peers. A spiritual challenge faced at this age is that the expectations and evaluations of others, the values themselves, and the traditions either from the past or created specifically to meet adolescents’ needs and desires can become so internalized, even made sacred, that their personal autonomy, judgment, and drive to act might be jeopardized. Also, any betrayal by a “worthy” authority or peer can lead to despair.

Physical changes that result from illness or injury can also lead to profound spiritual distress, though the underlying spiritual issue may be masked by an obvious physical concern. Adolescents receiving chemotherapy are often traumatized by the physical changes they anticipate and undergo. Teenage girls frequently voice special concerns about hair loss. This may be for them a spiritual dilemma as well as a physical one. A fear of feeling “different” or “embarrassed” in front of peers is real enough. But sometimes the distress is rooted in spiritual questions: “Am I still the same person I was before this change occurred?” “Am I more than my body?” “To what degree has the love and acceptance I’ve known been related to my appearance?” As they anticipate hair loss, many adolescent girls seek out natural-looking wigs; at the time certain they will never allow themselves to be caught without it. But later, many girls lay the wigs aside to walk proudly, and baldly, into the world. Perhaps the underlying spiritual questions have been answered. “I am a loved and valued person because of who I am and not because of how I look.” “I have supportive and loving people in my life, no matter what.”

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Oct 31, 2016 | Posted by in PEDIATRICS | Comments Off on Spiritual Care in Pediatric Oncology

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