Nurses' Experiences of Spiritual Communication with Seriously III Children

Abstract

Objective:

The goal of this study was to explore nurse experiences in communication with children about spiritual topics in order to develop training in this area.

Background:

Although spiritual care is essential in pediatric palliative care, few providers receive training about communication with ill children about spirituality.

Methods:

Researchers developed a brief survey to prompt nurses to reflect on pediatric palliative care experiences that included spiritual discussions. Nurses attending training courses voluntarily submitted stories. Qualitative data were thematically analyzed by members of the research team, consisting of two researchers with expertise in palliative care, spirituality, and communication and two expert pediatric palliative care clinicians.

Results:

Nurses' spiritual conversations with children revealed that children question God and the reason for their illness, have a desire to talk about the afterlife as a way of understanding their limited lifespan, and to share descriptions of an afterlife, in these cases described as heaven. Nurses conveyed the importance of being present and engaging in spiritual communication with children.

Discussion:

Communication training is needed and should prepare providers to respond to a child's spiritual questioning, assist parents when the child initiates discussion about the afterlife, and help parent and child understand the spiritual meaning of their illness. Chaplains serve as spiritual care experts and can help train nurses to screen for spiritual distress, have greater competence in spiritual communication, and to collaborate with chaplains in care. Quality palliative care is incomplete without attention to spiritual care.

Introduction

Caring for seriously ill or dying patients is an immensely challenging role for nurses, and this care becomes even more complex when the patient is a child. Beyond the need for excellent pain or symptom management, palliative care has established the need for whole person care inclusive of spiritual care. The National Consensus Project guidelines for quality palliative care include Spiritual, Religious, and Existential Care as one of the eight essential domains.¹ The spiritual needs of ill children and their families include the need for religious rituals, to reframe hope, to enhance the transcendental nature of meaning-making of the child's illness, to explore the meaning of their child's life and death, and for bereavement care.² Although the inclusion of pediatric palliative care increases spiritual communication at the end of life,³ little is known about spiritual communication with ill children.

Pediatric palliative care has included recognition of the spiritual needs of children and families, including spiritual and existential needs. Chaplains are the spiritual care experts, whereas nurses are the professionals across settings and their shifts are most often at the bedside to hear spiritual concerns. Nurses play a vital role in referring to chaplaincy. Numerous studies have documented family struggles with understanding why children should endure serious illnesses and die, the grief experiences of children and their families, and various models of providing quality care.^4–6 Investigators have explored needs across settings from neonatal ICU's, oncology settings, chronic illness pediatric care, trauma, emergency settings, and care at home. Across these studies, there is consistent recognition of spiritual care, as families often rely on faith in God, religion, or spirituality to cope with the cascade of medical decision making for their ill child.⁷ These needs vary widely as influenced by diverse cultures, religious beliefs, and values.

Despite the ubiquitous nature of spirituality throughout pediatric care, the predominant focus of palliative care communication in pediatric settings has centered on shared decision making between parents and clinicians,^8,9 with an emphasis on the skills of the clinician to provide information and to allow families to express their wishes for the child's quality of life.^9,10 The communication skills of healthcare providers are important to parents of ill children.⁸ Families report wanting to hear medical news from a trusted source, someone with whom they have an established relationship, and in a manner that is sensitive and caring.² Sensitive and honest communication is crucial when caring for an ill child, as the quality of communication influences whether or not parents perceive they are getting quality care for their child.⁸ Recently, nurse communication that includes the nurse talking to the deceased child after death as the body is prepared was reported as a way of providing spiritual support. This type of communication recognizes the spiritual presence of the deceased child, de-medicalizes the child's death, and reinforces continued relationship bonds with the child that will assist in bereavement.¹¹

Communication skills training has been recognized as a major component of pediatric palliative care; however, little is known about appropriate content for a curriculum that includes spiritual care communication. Although the nurse has been identified as the key team member with whom parents most often communicate,⁸ spiritual communication is one of the most difficult areas of communication for nurses. Even very experienced nurses who are confident in discussing goals of care, advance directives, and death have reported great anxiety in discussing spiritual, religious, or existential concerns.¹² Nurse-initiated discussions about spiritual concerns with patients and family members are uncommon,¹³ and nurses are likely to transition to another topic in response to caregiver- or patient-initiated spiritual communication.¹⁴ There are many available online resources related to spirituality (including George Washington Institute for Spirituality and Health, the Pain Resource Center at City of Hope, and Healthcare Chaplaincy) to guide conversations about spirituality, and nurses often turn to the team chaplain to fortify their own spiritual needs and process their clinical experiences.¹⁵ This is especially profound in pediatric contexts, as strategies for addressing burnout and compassion fatigue include spirituality, recognizing self-vulnerability, and attending to personal spiritual needs.¹⁶ The goal of this study was to understand the experiences of nurses with ill children about spirituality to develop communication training in this area.

Methods

Surveys were distributed to attendees at three End-of-Life Nursing Education (ELNEC) courses conducted in 2015. Attendees were predominantly registered nurses or advanced practice nurses in clinical roles. The surveys asked attendees to relate their experiences with seriously ill and dying children and their families, involving spiritual aspects of the illness journey. In addition, nurse experiences derived from an earlier study, supported by the Fetzer Foundation, were culled for themes and passages related to spiritual care and ill children. Given that surveys were voluntarily completed during clinical education settings, demographic information was not collected.

Data analysis

Qualitative responses were transcribed and inductively analyzed by using an iterative process of theme analysis.¹⁷ First, members of the research team, including researchers and pediatric expert clinicians, independently read all of the transcripts and identified unrestricted sections of text, suggesting a theme. Next, research team members met to integrate individual coding and came to consensus through discussion by connecting, collapsing, or associating coding to establish and finalize themes. Quotes were then extracted to illustrate themes.

Results

Four major themes emerged from experiences shared by 30 nurses who completed a voluntary survey while attending a continuing education course. The themes reflect the content of spiritual communication with ill children. Each theme is summarized next followed by a summary of nurses' perception of their role in spiritual communication with ill children and their families.

Spiritual questioning

Nurses shared that ill children have questions about faith and spirituality, often with an “extra element of time-limitedness” to find answers. Across the stories shared, children questioned why they were facing the end of life and wondered whether the God they were taught to believe in was a “just” God. Ill children posed a myriad of questions to their nurses about God, faith, and their place in the universe. Key questions commonly asked by ill children included: Why do bad things happen if God is good? Am I going to die? What does God want me to do? Why did all of this happen? One nurse noted that even though older children are better able to verbalize their beliefs and questions than younger children, that despite age or life stage, children inherently articulate their spiritual awareness that becomes visible as part of their illness journey.

Compared with other members of the healthcare team, nurses described being best positioned to get to know the child and his/her sense of spirituality, thus making them ideally positioned to address the child's spiritual questioning and refer to chaplaincy. This role includes acting as an intermediary when a child's spiritual journey and belief system differ from those of his or her parents. Nurses considered it critically important to address these differences for the benefit of both the ill child and the family, but they cautioned that providers must allow the time to get to know the child and his or her beliefs before acting as the intermediary in this delicate process.

Discussing the afterlife

Discussions about the afterlife were common, as nurses shared how ill children had an innate understanding and awareness that their lifespan was limited. The afterlife was sometimes viewed as part of nature, such as a child's post-death appearance as a butterfly or dolphin. In one instance, a sick child had made good friends with other sick children in the hospital. They formed a community, and some of the children served as role models, mentors, and even tutors for the other children in the hospital. As a group, the ill children shared a belief that they would reunite on the other side; they spoke of awaiting each other's arrival, having welcoming parties, and helping each other cross over. Ill children discussed the afterlife without fear, sadness, or pain.

Children also discussed the afterlife by speaking of or reacting to greetings from those who had already passed away, who now reappear in nature, in dreams, or through voices or visitations to guide them to the afterlife. In one instance, a young child told his grandpa that he was going to play with the angels. The grandfather asked how he was going to play with the angels and where. The young boy responded by pointing to an area in the room and said, “They're right there, Grandpa.” Angels played a key role in the child's bridge to and belief in the existence of an afterlife and were described by children as their guardians. Nurses noted that the child's belief in an afterlife often preceded acceptance by the adults, particularly parents and grandparents. The nurse's role involved acknowledging the child's belief and helping parents understand the child's visions.

Sharing descriptions of heaven

Visions were also central to descriptions about heaven, another prevalent spiritual communication topic shared between nurses and ill children. Children commonly talked about meeting others who have died as evidence that heaven existed. Ill children spoke of meeting grandparents, friends, and even siblings whom they had not known existed. In one case, there had been a premature death in the family and the now ill child reported that he or she had seen their grown brother or sister “while they were gone (to God/Jesus),” even though the child had not previously been told about the deceased sibling. The children spoke of heaven without any fear. Nurses perceived that these accounts served to reassure parents that even though their child's death would be very hard to accept, the child's belief in heaven made them comfortable and unafraid. Nurses reported that this seemed to give parents peace in the midst of a very painful journey.

Heaven was also discussed as a place where the child would go first and await their parents' passage to “the other side.” One nurse recalled an experience with a 14-year-old boy who had CF and loved trains. She shared: “When he was dying he had the caboose in his hand: When his mom asked ‘Why the caboose and not the engine?’—he said ‘I'm the engine—I'm leading the way—I'm saving you the caboose so you can follow me later.’” Children appeared to have an awareness of the dying process, and descriptions of heaven revealed a lack of fear of dying. In one instance, a nurse remembered a young girl telling her father the evening before her death: “Daddy, Daddy, can you see it? It's so beautiful, it's so beautiful … I feel like I am floating just like they told me I would … this is fun.” Another nurse shared the story of a young boy who, in the final hours of his life, began to say the names of the deceased children who were waiting for him. The nurse recalled that the young boy described: “They're preparing a party for me.” Descriptions of heaven by ill children included joining deceased family members and/or the child's communication with an invisible presence, both of which were reported by nurses as spiritual communication that gave parents comfort and a peaceful understanding that their child would not journey alone.

Hearing God's call

Spiritual communication with ill children included direct talk about God, and nurses recalled children's experiences hearing God's call and talking about leaving with God. In one instance, a child asked his parents' permission to go to God. Another nurse shared how a young girl who had been nonresponsive for many days, surrounded by 50 or so family members, suddenly sat “bolt upright and said aloud in a firm voice, ‘Can you all be quiet? God is calling me and telling me how to find him and I can't hear him, you are too loud.’” She lay back down and died shortly thereafter. In another example, a very ill 17-year-old young man, confined to bed with very limited ability to move, awoke from a dream and told his mother that God had sent “the bus” to take him away and asked his mother for permission to leave. She replied that it was not hers to give, but rather God would determine the right time for his departure. Nurses emphasized that talk about God was influenced by the child's and family's culture, rituals, and traditions and that quality care attended to spiritual needs as defined by the child and their family.

Role of nursing

First and foremost, nurses believed that ill children had spiritual needs and that it was important to nourish the child's spirit by being with them and acknowledging their experiences. Nurses emphasized being present for and with the children and their families and available to pray with them. One nurse remarked that it did not matter whether he or she personally believed in the child's visions or beliefs, emphasizing instead the importance of listening and supporting the children who heard the voices, believed in angels or the afterlife, through dreams, visions, or audible calls that they could hear in the present. Another cautioned that to discount children's beliefs in angelic encounters may take away very real comfort and support for the child when it is needed the most.

Nurses viewed spiritual communication with ill children as vital to “helping them across the river as gently as we can.” Others described this other world as the “thin grey line,” poignantly explaining “that almost imperceptible line between worlds … the place where we leave one and enter the next … a permeable membrane … a place of passage … an open door … opened a fraction of an inch … I have learned that each child's spirit takes that step.” For the children and for the families, nurses are present, with angels, miracles, voices, and their loved ones, to escort them on the illness journey. Nurses described that they did not need to speak or do anything at all for their patients, except be by their side and be present.

Finally, nurses highlighted that they themselves had to be spiritually available. They understood the need to take the time in their personal lives to give themselves the space to explore their own spirituality and develop their own awareness, so that they could encourage, nurture, and guide spiritual awareness in others. One nurse so aptly said, “The ability to draw on previous life experiences/personal spirituality is critical to meeting the needs of patients and families.”

Discussion and Conclusion

It has been previously noted that communication training for providers working with ill children is needed,⁸ and this study demonstrates a need for curriculum to include spiritual care topics. Rather than being distinct, the major themes identified earlier appear repeatedly and they blend to create a unique view that children in their final stages of life shared—that the end of life was near, that the reason for God's placing them in this position was unclear but that God had a plan, that God/angels/dead loved ones were calling them to this place beyond, a place of comfort in heaven or an afterlife without pain or sadness, with angels and previously deceased loved ones ready to escort them to this other side where they would await their parents without pain, suffering, or fear.

The central focus on end of life as a context for spiritual communication, as found in this study, corroborates prior research illustrating that end-of-life communication during pediatric palliative care includes the initiation of talk about death and dying with both parents and the ill child as well as the team's assistance in facilitating these discussions between parent and child.³ Nurses' experiences shared here are also similar to bereaved parents' accounts of communication with dying children. Parents recalled that communication about death was often initiated by the child and included talk about friends and family who had died as well as talk about life after death.¹⁸

Nurses' experiences illustrate the importance of communication skills to assess and respond to spiritual needs of children. These experiences reveal opportunities to listen to spiritual experiences as a way of offering comfort to children facing serious illness and death and to support parents and families as they hear the spiritual experiences of the child. A nurse's lack of ability to engage in communication about spiritual topics may contribute to health inequities, as research has shown that non-white parents have greater faith-based and overall spirituality than white parents.⁷ Concern about spiritual care communication with patients and families by nurses has been shown to be greater if the patient or family is from a religious background different from their own.¹² Chaplains can provide valuable expertise in responding to diverse cultural and religious beliefs and can be a resource for nurses.

Although nurses in this study identified prayer as a form of spiritual support for child and family, prior research has found that nurses are the least likely to pray with the patient or family member as a spiritual support intervention.¹⁹ Prayers vary and can include simple dialog/communication with God or a higher power, a personal plea, submitting to God, or praying for others.²⁰ There is extensive literature regarding important issues related to prayer by clinicians and the ethical and professional issues to be addressed. Nurses in this study identified that prayer was in response to a child or a family request for praying and was never initiated by the nurse.

Finally, it is important to note that the study was limited to the experiences of nurses, thus representing their perspectives of the child's experiences. The participants were nurses attending a palliative care course and, thus, may represent nurses with greater knowledge and experience than other pediatric nurses in this area. Experiences are also recalled events and, thus, are more likely to include the nurse's words rather than actual words spoken by children. Information on the cultural and religious/spiritual background of the children and parents involved were not consistently shared by nurses in recalling their experiences, further limiting our understanding of this complex layer of communication and spirituality. Overall, a cultural bias may be present in the data, as experiences predominantly centered on discussions about heaven, God/Jesus, and angels.

Still, the content of communication shared by nurses about spiritual communication with children illustrates areas for a communication training curriculum. Based on this study, communication training should include ways to respond to a child's spiritual questioning, how to engage in a discussion of afterlife, and how to facilitate discussions about heaven between child and family. Although prior research has found that nurses encourage parents to talk to their deceased children,¹¹ findings in this study suggest that nurse training in presence, mindfulness, and listening is also needed. Spiritual communication training may be offered as a continuing education program and should include faculty with expertise in chaplaincy, nursing, and communication. Chaplains serve as spiritual care experts and can help train nurses to screen for spiritual distress, to have greater competence in spiritual communication, and to collaborate with chaplains in care.

Footnotes

Acknowledgments

The authors wish to thank the nurses who participated in this study. They also thank Ellen Friedmann for editorial assistance.

Author Disclosure Statement

No competing financial interests exist.

References

National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care Third Edition: www.nationalconsensusproject.org. 2013.

Stevenson

, Achille

, Lugasi

. Pediatric palliative care in Canada and the United States: A qualitative metasummary of the needs of patients and families. J Palliat Med, 2013; 16:566–577.

Kassam

, Skiadaresis

, Alexander

, Wolfe

. Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team. Pediatr Blood Cancer, 2015; 62:1409–1413.

Battista

, LaRagione

. Pediatric hospice and palliative care. In: Ferrell

, Coyle

, Paice

(eds): Oxford Textbook of Palliative Nursing, 4th ed. New York: Oxford University Press, 2015, pp. 851–893.

Wolfe

, Hinds

, Sourkes

. The language of pediatric palliative care. In: Wolfe

, Hinds

, Sourkes

(eds): Textbook of Interdisciplinary Pediatric Palliative Care. Philadelphia, PA: Elsevier Saunders, 2011, pp. 3–6.

Davies

, Brenner

, Orloff

, et al. Addressing spirituality in pediatric hospice and palliative care. J Palliat Care, 2002; 18:59–67.

Knapp

, Madden

, Wang

, et al. Spirituality of parents of children in palliative care. J Palliat Med, 2011; 14:437–443.

Coad

, Patel

, Murray

. Disclosing terminal diagnosis to children and their families: Palliative professionals' communication barriers. Death Stud, 2014; 38:302–307.

Singh

, Raj

, Paschal

, Hussain

. Role of communication for pediatric cancer patients and their family. Indian J Palliat Care, 2015; 21:338–340.

10.

Crozier

, Hancock

. Pediatric palliative care: Beyond the end of life. Pediatr Nurs, 2012; 38:198–203, 227; quiz 4.

11.

Forster

, Windsor

. Speaking to the deceased child: Australian health professional perspectives in paediatric end-of-life care. Int J Palliat Nurs, 2014; 20:502–508.

12.

Malloy

, Virani

, Kelly

, Munevar

. Beyond bad news: Communication skills of nurses in palliative care. J Hosp Palliat Nurs, 2010; 12:166–174.

13.

Wittenberg

, Goldsmith

, Neiman

. Nurse perceived communication challenges and roles on interprofessional care teams. J Hosp Palliat Nurs, 2015; 17: 257–262.

14.

Ellington

, Reblin

, Ferrell

, et al. The Religion of “I Don't Know.”. Omega, 2015; 72:3–19.

15.

Wittenberg-Lyles

, Oliver

, Demiris

, et al. Communication dynamics in hospice teams: Understanding the role of the chaplain in interdisciplinary team collaboration. J Palliat Med, 2008; 11:1330–1335.

16.

Melvin

. Historical review in understanding burnout, professional compassion fatigue, and secondary traumatic stress disorder from a hospice and palliative nursing perspective. J Hosp Palliat Nurs, 2015; 17:66–72.

17.

Vaismoradi

, Turunen

, Bondas

. Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nurs Health Sci, 2013; 15:398–405.

18.

Jalmsell

, Kontio

, Stein

, et al. On the child's own initiative: Parents communicate with their dying child about death. Death Stud, 2015; 39:111–117.

19.

Kisvetrova

, Klugar

, Kabelka

. Spiritual support interventions in nursing care for patients suffering death anxiety in the final phase of life. Int J Palliat Nurs, 2013; 19:599–605.

20.

Narayanasamy

, Narayanasamy

. The healing power of prayer and its implications for nursing. Br J Nurs, 2008; 17:394–398.