564397
research-article2015
JPOXXX10.1177/1043454214564397Journal of Pediatric Oncology NursingMcNeil
Article
Spirituality in Adolescents and Young Adults With Cancer: A Review of Literature
Journal of Pediatric Oncology Nursing 1–9 © 2015 by Association of Pediatric Hematology/Oncology Nurses Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043454214564397 jpo.sagepub.com
Sharon B. McNeil, RN, MS, CPON1
Abstract Purpose: Spirituality and religion have been found to have a positive impact on adults with cancer, but these concepts have not been well examined in adolescents and young adults (AYA) with cancer. AYA often question and struggle with their religious and spiritual beliefs, so it is not clear if spirituality and religion have the same positive impact on this age group. The purpose of this review of literature was to examine the research that has been conducted in spirituality in AYA with cancer. Methods: The review covered the years from 1980 to present. The terms cancer, adolescents, and young adults as well as the phrases spirit* and relig* were used to capture the different variations of words. Nine articles were found that explored spirituality and religiosity in AYA with cancer. Results: This review highlighted the need for clarifying the terms used in describing the concept. This lack of continuity in terms makes it difficult to compare the studies. The methods used to measure spirituality are varied. Implications for Practice: Pediatric oncology nurses need to be sensitive to the spiritual needs of their patients. This can be accomplished by keeping an open line of communication and ensuring uninterrupted time to pray or read scriptures. Because of the variety of ways to express spirituality, the important first step is to ask what spirituality means to them. Keywords spirituality, religion, adolescents and young adults, cancer
Introduction Spiritual care is one area where nurses often feel uncomfortable in providing care. This may be due to lack of time, lack of education, or feeling uncomfortable with the topic (Kristeller, Zumbrun, & Schilling, 1999; Richardson, 2012; Surbone & Baider, 2010). Nurses may feel that they are not the right health care team members to provide religious care, be unsure if allowed by hospital policy, or may be afraid of insulting their patients or families (Balboni et al., 2013; Surbone & Baider, 2010). There is evidence to support the fact that for adults, spirituality is linked to better quality of life, hope, and patient satisfaction (Balboni et al., 2013; Reynolds, 2008; Richardson, 2012; Surbone & Baider, 2010). Research has shown that adult patients appreciate the opportunity to share their spiritual beliefs with their health care providers (Surbone & Baider, 2010). Sharing beliefs can be helpful in increasing understanding of both the family and staff, especially if their beliefs are different from traditional beliefs in a community as in the case of Jehovah’s Witnesses (McNeil, 1997). This increased understanding can lead to a better rapport between the patients and nurses and can result in higher patient satisfaction.
Spiritual care has been recognized as an important part of care. The Joint Commission on Accreditation of Healthcare Organizations has mandated that spiritual care be assessed for patients in hospitals among other settings (Hodge, 2006). The Association of Pediatric Hematology Oncology Nurses recommends that spiritual traditions be assessed at time of diagnosis as well as during ongoing care (Nelson & Guelcher, 2014). The purpose of this review was to examine the spirituality literature in adolescents with cancer and provide an overview of adolescent faith development. There has been an explosion of interest and research on the topic of spirituality over the past 20 years (Clarke, 2006; Martsolf & Mickley, 1998). With this increased interest in how religion and spirituality affects health, researchers have struggled to define spirituality. Attempts to clarify spirituality have been the subject of concept analysis in the fields of theology, psychology, and nursing (Buck, 2006; Ellison, 1
University of South Florida, Tampa, FL, USA
Corresponding Author: Sharon B. McNeil, University of South Florida, Tampa, FL, USA. Email: [email protected]
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
2
Journal of Pediatric Oncology Nursing
1983; Greenwald & Harder, 2003; Hill & Pargament, 2003; Lazenby, 2010; Martsolf & Mickley, 1998; Sessanna, Finnell, & Jezewski, 2007; Vachon, Fillion, & Achille, 2009). The elements of spirituality most commonly identified in these analyses include the following: transcendence, a search for meaning or purpose in life, a connection with others, and a personal belief system (Hill & Pargament, 2003; Lazenby, 2010; Martsolf & Mickley, 1998; Vachon et al., 2009). Transcendence is described as an “experience and appreciation of a dimension beyond self” (Martsolf & Mickley, 1998, p. 294). One of the difficulties in discussing the concept of spirituality is that the concepts of religion, religiosity, and religiousness are associated with and at times used interchangeably with spirituality. Some researchers have sought to distinguish the concepts by limiting the concept of religion to the beliefs or doctrine espoused by a religious community (Koenig, 2004; Mueller, 2010; Rubin, Dodd, Desai, Pollock, & Graham-Pole, 2009). In this separatist view, spirituality is viewed as a search for meaning or purpose in life and not connected with a particular religious community or doctrine (Buck, 2006; Kim & Esquivel, 2011; Nixon & Narayanasamy, 2010). It is possible for patients to be spiritual, but not identify themselves as religious. A critical review of spirituality literature shows that the broader, more generic definitions of spirituality are favored by nurse researchers, whereas theological and other researchers favor a definition that combines both religious and spiritual elements (Clarke, 2009). Lazenby (2010) argues that spirituality and religion are the same concept and separates a different concept of Religions that discusses formalized religious organizations. In a review of nursing spirituality literature, Reinert and Koenig (2013) argue that a wider view of spirituality that includes religion is more beneficial in assisting nursing in developing appropriate interventions. Other researchers discovered that a majority of adult participants in their study did not appreciate the nuances and distinctions that researchers had ascribed to either spiritual or religious and instead described themselves as both spiritual and religious (Zinnbauer et al., 1997). In a qualitative study of spirituality in healthy adolescents, a similar lack of distinction between spirituality and religion was noted (Spurr, Berry, & Walker, 2013). Adolescents in that study were asked to describe spirituality and answers varied with some adolescents stating that “spirituality was having something to believe in” (p. 226) without a specific religion or God, but others believed that God was central to spirituality (Spurr et al., 2013). In addition to a lack of clarity as to what constitutes spirituality, there is no consensus as to how to measure spirituality. Measures to quantify spirituality have been as simple as church attendance and participation in a religious
community, but have also included investigator developed questions and psychometrically tested tools (Ellison, 1983; Holder et al., 2000; Rostosky, Danner, & Riggle, 2007; Sessanna, Finnell, Underhill, Chang, & Peng, 2011). Religion can have a positive or negative impact on both mental and physical health. Negative impacts of religion include the refusal of treatments such as blood transfusions and immunizations, stopping life-saving treatment, and failing to seek medical care (Koenig, Larson, & McCullough, 2001). Children can see illness as a punishment from God or as a punishment for real or perceived sins (Steen & Anderson, 1995). Positive impacts of religion include greater well-being, hope and optimism, more purpose and meaning in life as well as higher levels of social support (Koenig, 2004). Spirituality and religion have been found to have a positive impact on adults with cancer but these concepts have not been wellexamined in adolescents with cancer (Brady, Peterman, Fitchett, Mo, & Cella, 1999; Kandasamy, Chaturvedi, & Desai, 2011; Moadel et al., 1999; Thune-Boyle, Stygall, Keshtgar, & Newman, 2006).
Adolescent Faith Development As adolescents grow from childhood to adulthood, their faith and spiritual beliefs also grow and change (Fowler, 1981). In his theory of faith development, Fowler (1981) described faith as “our way of finding coherence in and giving meaning to the multiple forces and relations that make up our lives” (p. 4) and states that faith is not always religious. Faith development, like cognitive development, is described in stages for Fowler’s theory. Fowler (1981) found most adolescents to be in the synthetic–conventional faith stage. During this stage, the influence of peers, the media, and society compete with the family for influencing faith formation. Experiences, both positive and negative, may cause adolescents to examine their faith and question the faith and beliefs of their family or family system. This exploration may lead them to form their own personal faith and set of beliefs and either reject or confirm traditional beliefs of their parents (Fowler, 1981; Fowler & Dell, 2004; Ozorak, 1989).
Spirituality in Adolescents With Cancer While there are few studies that examine spirituality in children and adolescents with cancer (HendricksFerguson, 2006, 2008; Kamper, Van Cleve, & Savedra, 2010; Tebbi, Mallon, Richards, & Bigler, 1987), there are several qualitative studies exploring the experiences of adolescents with cancer that discuss aspects of spirituality (Flavelle, 2011, Suzuki & Beale, 2006; Wilson, Mazhar, Rojas-Cooley, DeRosa, & Van Cleve, 2011;
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
3
McNeil Table 1. Studies Found in Review of Literature. Study
Purpose
Flavelle (2011) Hendricks-Ferguson (2006) Hendricks-Ferguson (2008) Kamper, Van Cleve, and Savedra (2010) Spilka, Zwartjes, and Zwartjes (1991) Suzuki and Beale (2006) Tebbi et al. (1987) Wilson et al. (2011) Woodgate and Degner (2003)
To describe an adolescent’s experiences of living and dying with cancer To examine Hope and Spiritual Well-Being Scores and determine if there are any differences based on age or gender To determine if Hope and Spiritual Well-Being Scores change over time and if they differ according to length of time since diagnosis To describe the responses to a Spirituality Quality of Life Interview given by children with advanced cancer To examine the role of religion in coping with childhood cancer Personal web pages of adolescents with cancer were examined for what insights they provide To examine religious beliefs and locus of control in adolescents with cancer To explore the experiences of 3 children with advanced cancer through the use of case studies To explore the experience of childhood cancer from the children and family’s point of view
Woodgate & Degner, 2003). Young adults up to the age of 22 years are included in some studies, but none specifically aimed at the young adult age group. This review presents both the qualitative exploration of the adolescent cancer experience as well as quantitative studies designed to examine spirituality in adolescents with cancer. A review of literature starting in 1980 to present was conducted using the terms cancer, adolescents, and young adults. The phrases spirit* and relig* were used to capture the different variations of words starting with those letters for a more complete review. The review was conducted from September to December 2012 with updates reviewed until March 2014. The databases searched include Medline (OVID), PubMed (NCBI), CINAHL (EBSCO), and ProQuest Dissertations and Theses (PQDT). The limits applied were English language, Adolescent: 13 to 18 years, and Young Adults: 19 to 24 years. From an initial total of 435 articles returned, 9 articles were found that explored spirituality and religiosity in adolescents and young adults with cancer in the North America (see Table 1).
Qualitative Studies Woodgate and Degner (2003) explored how the experience of having cancer affected the child and his or her family through meaningful descriptions and interpretation of their experiences. The sample consisted of 39
Sample A 15 year old with osteosarcoma 78 teens with cancer between the ages of 13 and 20 78 teens with cancer between the ages of 13 and 20 years 60 children between the ages of 6 and 17 years 118 families with children from 3 months to 18 years 21 web pages of adolescents between 14 and 22 years 28 adolescents between 10 and 23 years 3 children aged 6, 12, and 17 years 39 families with children between the ages of 4 and 18 years
families; a majority of the families were White, 2-parent families with at least one sibling. The children ranged in age from 4 to 18 years with a median age of 10 years, and a majority of the children were diagnosed with leukemia or lymphoma. A variety of data collection techniques were used over an 80-week period including direct observation, focus groups, one-on-one interviews, and journaling. Based on their findings, these researchers developed a theory to describe how the child and families used their support systems and their individual family characteristics to “keep the spirit alive” and “get through the rough spots” that comes with the cancer diagnosis (p. 108). The “spirit” is conceptualized as the mindset that helps the family deal with living with a cancer diagnosis and includes the passion for living, the “fighter within,” and the need for connectedness (p. 110). The amount and type of support used by the family as well as the family’s approach to keeping the spirit alive were found to be key elements that influenced the process. Two of the characteristics of “keeping the spirit alive” that are related to spirituality are a need to keep connected and receiving support from religion. How support was received from religion was not further defined in the article. The study was well designed with a variety of data sources. However, the small, homogenous sample makes generalizing these concepts difficult. In another study that explored the experience of being an adolescent with cancer, Suzuki and Beale (2006)
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
4
Journal of Pediatric Oncology Nursing
examined the personal web pages of adolescents with cancer. Using general Web site directories as well as home page directories with a keyword search of cancer teen and cancer survivor personal home page, the researchers searched for public Web sites created by a person with cancer between the ages of 13 and 22 years. The researchers found 21 home pages that met their criteria. The young people who created the web pages ranged in age from 14 to 22 years with an average age of 16 years. There were 11 females, 9 males, and one whose gender was not identified. A majority of the adolescents had leukemia and lymphoma. The elements of the web page were rated for the amount and frequency of entries in which cancer was discussed. Sharing their story, general cancer information, and connecting with others whose lives were touched by cancer were the most common usages of the Web sites. While the trauma and horror of the cancer treatment were described, a majority of adolescent Web sites discussed the positive consequences of having cancer and how they found meaning in their lives. One adolescent posted an essay on her spirituality and cancer, describing how her belief in God helps her through treatment while another mentioned anger at God for allowing the cancer to occur. The use of the internet for support is a growing phenomenon and appears to be one readily used by adolescents and young adults. Gathering information from the internet poses a different set of limitations since all the information gathered is self-report without any personal interaction to confirm details of the information presented. The population is poorly defined as the definition is based on the information the adolescent chooses to share. The inclusion criteria determined by the researcher limits the population to not only adolescents with cancer, but also adolescents who have the means, skills, and the interest in creating a Web site. By limiting the population to adolescents who have the skills to create their own Web site, it is possible that a larger group of adolescents with cancer who use Web sites created by others was not discovered. A third study exploring the experience of an adolescent with cancer was conducted by Flavelle (2011). She reviewed the 90-page journal kept by Ed, a 15-year-old young man diagnosed with osteosarcoma during the last 3 months of his life. He details not only his physical deterioration, but also the emotional effects of dying of cancer on him and his family. He writes poignantly about wanting to protect his younger sister from the reality of his illness as well as how he finds himself relying on his parents more and more as the time of his death grows closer. Five main themes were found in Ed’s journal: adolescent development, escape from illness, changing relationships, symptoms, and spirituality. In the beginning of the journal, Ed describes searching for meaning in life and trying to find meaning in his experience. As his death
draws closer, Ed discusses using prayer and reading his Bible as techniques of dealing with his illness and impending death. Exploring one adolescent’s experience with cancer in his own words makes for a powerful experience. Unlike the two previously discussed studies, Flavelle was not asking any questions or looking for specific information, but rather exploring the lived experience of living and dying with cancer. From of a larger study of quality of life, symptoms, and symptom management in children with advanced cancer, Wilson et al. (2011) presented the experiences of three children with advanced cancer over a 5-month period. The children in the study ranged in age from 6 to 17 years of age and the 3 highlighted children were aged 6, 12, and 17 years with 2 boys and 1 girl. The goal was to interview the children 10 times over the study period unless the child died first. All three of the children died, though one died well after the study period. The number of interviews each child participated in is not reported. The interviewers asked open-ended questions asking about the child’s day and asking what the child wanted to talk about. As part of the larger study, the children completed 9 different questionnaires that quantified their symptoms and quality of life. Although no prompts specific to spirituality were reported, all three of the children discussed spiritual issues with the researchers. The two older teens reported using prayer to ask for health and normality. One of the teens reported periods of not praying and the other reported reading her Bible as a comfort measure. The younger child was interested in questions about heaven and what heaven would be like. All three children wove spirituality into their lives and their fight with cancer, sometimes relying more heavily on spirituality than other times. The four studies together highlight the importance of spirituality in adolescents with cancer. Woodgate and Degner (2003), Wilson et al. (2011), and Suzuki and Beale (2006) found that adolescents and their families looked for meaning in life and relied on religion for support. Some of the children and adolescents reported the use of prayer and reading the Bible, but others did not describe any specific spiritual techniques used by the families. The studies had different sets of limitations. Woodgate and Degner had a small, homogenous population, but had a well-designed study with multiple data sources. Suzuki and Beale also had a small sample size that used Web sites to explore the experience of living with cancer. Using Web sites can be problematic as the narrative is self-report and there is no guarantee that any of the information is accurate. There was no interaction between the researcher and the population so none of the themes were verified with the sample. Flavelle’s study was different as it was the analysis of a particular adolescent’s journal. There was no guiding the discussion or
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
5
McNeil looking for specific information, it was whatever Ed chose to write about. Ed used prayer, Bible studies, and searching for meaning to cope with his illness. Wilson and colleagues presented three case studies that they believed typified their larger study. None of the studies can be generalized, but all of them provide some insight as to how spirituality influences the lives of children and adolescents with cancer.
Quantitative Studies In addition to the studies that explored the experience of living with cancer, five articles were found that specifically examined spirituality in adolescents and children with cancer. The concept studied was not consistent throughout the studies. One examined religiosity, one examined religion, one examined spiritual quality of life, and the final two articles examined spiritual well-being. Tebbi et al. (1987) examined religiosity and locus of control in adolescents with cancer. This study used a cross-sectional design with a convenience sample of 28 adolescents (20 boys and 8 girls) between the ages of 10 and 23 years, with an average age of 17 years. Most of the adolescents were undergoing treatment for leukemia and lymphoma, 11 had been on treatment for less than a year, 8 had been on treatment for 1 to 3 years, and 9 had been on treatment for more than 3 years. All the adolescents were Christian with a majority of them being Roman Catholic. The study used 2 tools, the Nowicki-Strickland Locus of Control Scale (Nowicki & Strickland, 1973) and the Faulkner-De-Jong Religiosity Scale (Faulkner & De-Jong, 1966). Both tools were described, but no information was given on their psychometric properties. There were no definitions provided for either locus of control or religiosity, making it difficult to determine exactly what concepts were being examined. A majority of the adolescents believed in God and most believed that religion provides security in the face of death. There was no difference in religiosity or locus of control scores based on age, gender, religion, or length of time since diagnosis. The study is limited by the small, entirely Christian sample. Spilka, Zwartjes, and Zwartjes (1991) explored the role of religion in the families of children with cancer. A total of 118 families were enrolled in the study, including 112 mothers, 81 fathers, and 66 patients. The average age of the children was 15 years and a majority of the children had leukemia or lymphoma. The participating family members were interviewed; in addition, an 8-item investigator developed tool asked about religion for the parents and a 2-item tool was used for the children. An α reliability coefficient of more than .60 for all items was reported, but no details on the construction of the tool were provided. The particulars about the interviews were not discussed so there is no information on how often the
participants were interviewed, if the parents and children were interviewed separately, or how long the interviews lasted. The study found that religion positively correlated with more closely knit families who grew closer with the cancer diagnosis. These families tended to turn inwards after the cancer diagnosis, strengthening their ties with family and close friends, but possibly ending more casual relationships. There was no information provided on the religious preference of the participants and those families who were not overly religious were not discussed. Kamper et al. (2010) used an investigator developed spiritual quality-of-life interview tool to explore spirituality in children with advanced cancer. The sample was a population of 60 children (25 boys and 35 girls) between the ages of 6 and 17 years. The study had more ethnic diversity than the other studies discussed with a population that was 52% Latino and 30% White, non-Latino. The spiritual quality of life tool is an 8 question interview guide based on a review of literature. The tool was reviewed by a panel of experts, families, and children, but no other psychometric data was provided. Each child was interviewed every 2 weeks for 5 months or until their death, resulting in a total of 374 interviews, with each child participating in between 1 and 10 interviews. The interviews were conducted by either a research associate or health care professional in the clinic, hospital, or home. When asked what made them happy, most of the children said that it was family and friends that made them happy. It was the constraints of their illness that made them unhappy. Almost 80% of the children stated that they did something to feel closer to God, the most frequent activity was praying and the thing most commonly prayed for was normalcy. There was no difference in choosing to pray or what they prayed for based on age. The parents of the children responded positively to the study and were encouraged to discover the impact of spirituality on their children. While this study population was more ethnically diverse, there was no information on the religious preference or upbringing of the children so it is not known if they were all Christian or if there was a more religiously diverse group. Whether or not the children’s answers changed over time was not assessed. While these three studies had larger samples than the qualitative studies, none had large, diverse populations. The concepts studied were different in each study. Religiosity, religion, and spiritual quality of life were the concepts studied in each study, respectively. Each study used a different tool to assess spirituality making it difficult to compare the studies. All three found high levels of spirituality, but there was no discussion on how they used their spirituality in coping with their cancer diagnosis. Hendricks-Ferguson (2006, 2008) published two studies examining hope and spirituality in adolescents with cancer. It is not clearly stated, but it appears that both
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
6
Journal of Pediatric Oncology Nursing
Table 2. Summary of the Concepts Studies. Concept Studied Spirituality Spiritual well-being Spiritual quality of life Religion Religiosity Spirit within
Study Authors
Frequency
Flavelle (2011) Suzuki and Beale (2006) Hendricks-Ferguson (2006, 2008) Kamper et al. (2010) Wilson et al. (2011) Spilka et al. (1991) Tebbi et al. (1987) Woodgate and Degner (2003)
2 2 2 1 1 1
articles discuss aspects of the same study. The population used was a sample of 78 adolescents (45 girls, 33 boys) with a median age of 16 years. Ninety-five percent of the population was White and all were Christian; 45% of them were Roman Catholic. A majority of the adolescents had leukemia or lymphoma. The study was conducted during an outpatient clinic appointment and used two tools, the Hopefulness Scale for Adolescents (Hinds & Gattuso, 1991) and the Spiritual Well-Being Scale (SWBS; Paloutzian & Ellison, 1982). The SWBS results in 3 scores, the overall spiritual well-being, existential well-being, and religious well-being. Psychometric data were included for both scales discussing the construct and content validity, reliability, the use of the tools in the population under study; Cronbach’s αs were included for all the scales. The first Hendricks-Ferguson article (2006) examined hope and spiritual well-being in relationship to the age and gender of the adolescents with cancer. The adolescents were divided into 3 age groups: early adolescence (11-14 years), middle adolescence (15-17 years), and late adolescence (18-20 years). The majority of the adolescents were in middle adolescence with 15% in early adolescence and 31% in the late phase. The middle adolescents had the highest hope and spirituality scores. The girls reported both higher hope and spirituality scores than the boys with the highest hope scores in early adolescent girls and the lowest hope scores in early adolescent boys. The overall SWBS and the existential well-being scores were not different based on the different age groups, middle adolescents scored higher on the religious well-being scale than late adolescents. Girls had higher scores on not only the SWBS but also the existential and religious well-being scales. The second Hendricks-Ferguson article (2008) examined hope and spiritual well-being in relationship to time since diagnosis in 78 adolescents with cancer. The time since diagnosis was divided into 4 groups: those diagnosed less than 1 year, 1 year to less than 2 years, 2 years to less than 3 years, and 3 years and greater. A majority of the adolescents (51%) were 3 years or more off treatment
while the rest of the adolescents were evenly distributed in the other groups. Hope scores did not differ significantly based on time since diagnosis, although the scores for those diagnosed 2 to less than 3 years were lower than the other 3 groups. The lowest spiritual well-being scores, religious well-being, and existential well-being scores were in the 2 year to less than 3 year time groups. Overall SWBS scores were the highest in those diagnosed less than 2 years, religious well-being scores were the highest in those diagnosed less than 1 year while the existential well-being scores were the highest in those diagnosed 1 to less than 2 years. While the hope scores did not vary according to the different groups, the spirituality scores did, reflecting that perhaps spirituality was more important at different points in the treatment trajectory. Overall, Hendricks-Ferguson (2006, 2008) found that spirituality scores varied with age, gender, and length of time since diagnosis, while Tebbi et al. (1987) found no difference in religiosity scores based on age or gender. Again, it is difficult to compare the studies as they examine different concepts with different measurement tools. The other two spirituality studies (Kamper et al., 2010; Spilka et al., 1991) did not examine spirituality in relationship to any demographic data, but rather how it affected the family unit or how the child used his or her spirituality to deal with a cancer diagnosis. All the studies that directly examined spirituality showed that spirituality is important to children and adolescents with cancer. Kamper et al. (2010), Wilson et al. (2011), and Flavelle (2011) mentioned specific actions taken such as prayer, reading the Bible, and meditation as methods of using their spirituality.
Summary Limitations All the studies in this review contributed to the understanding of spirituality in adolescents with cancer, but they also highlighted the issues studying the topic. The concepts examined in each study varied, as did the method of measurement of them (see Table 2). There is
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
7
McNeil Table 3. Important Points to Remember. Know your hospital or institutional policy on spirituality and religious beliefs Be respectful of the beliefs of patients and families It is acceptable to ask the meaning behind unfamiliar beliefs, religious medals, icons, or statues as long as it is done in a nonjudgmental manner If they feel comfortable doing so, it is acceptable for a health care team member to acknowledge their own beliefs if asked by a patient or family member Health care workers should never preach or attempt to impose their own beliefs on a patient or family member If a family asks the nurse to pray with them, the nurse should be respectful. It is acceptable to join in their prayer, stand with a bowed head, or respectfully decline Know what religious/pastoral care resources are available
no standard tool for measuring spirituality in adolescents, and this makes comparing studies difficult. All the studies were small studies with predominately White and Christian populations. Studies looking at a variety of adolescents from different ethnic and religious backgrounds are needed. The age ranges in the studies varied. Some studies included children as young as 6 years and the oldest participants were in their early 20s. The full range of young adults was not included in any of the studies. A majority of the adolescents and young adults had leukemia or lymphoma. While that is a common diagnosis in this age group, it would be beneficial to explore spirituality in those with other types of cancer. The SWBS is a tool that has evidence of validity and reliability in adolescents and has been used in a variety of populations. Tools that have been well tested are preferred to tools that are developed by the researchers that have no evidence of validity and reliability.
Implications for Research There is a need for both more qualitative and quantitative studies of spirituality in adolescents with cancer. Spirituality had been shown to be important to children and adolescents with cancer. Prayer, meditation, reading the Bible, attending church services, and a feeling of connectedness were all mentioned as aspects of spirituality used by the adolescents in the studies reviewed. Exploration of these themes in non-Christian and more ethnically diverse groups is needed. This information can be used to develop nursing interventions to support the children and adolescents with cancer.
Implications for Education Most nurses and other health care professionals do not have formal education regarding spirituality, but it is considered an integral part of nursing care (Cone & Giske, 2012). Staff members often feel uncomfortable or illequipped to fulfill their patients’ spiritual needs. As this review demonstrates, spirituality is important to adolescents and young adults as well as their families. Staff
nurses need education on the stages of faith development and how, as nurses, they can support their patients’ faith. The more familiar nurses are with faith and spirituality, the more comfortable they will become in dealing with spirituality.
Implications for Practice Adolescents and young adults enter the health care system with a wide variety of beliefs. As pediatric oncology nurses, it is not possible to know details about each belief system, but it is important to approach the topic with respect and sensitivity. It is important to provide the adolescents and young adults time to pursue their beliefs— this may mean time for prayer or meditation, time to read the Bible or other religious texts. Other beliefs may include the placement of amulets, statues, religious icons, or religious medals around the bed or room. One way that nurses can provide spiritual care is to ask about these items and discover what they mean to the patient. This understanding can lead to acceptance or an increase comfort level on the part of the health care staff and the patients. It is important to note that nurses should never preach to the patients or impose the staff’s beliefs on the patients and families. Supporting and respecting the spiritual and/or religious beliefs of the adolescents and young adults can be easily accomplished by the nursing staff without making either side feel uncomfortable. Based on the literature, suggestions are provided to help spark a dialogue between the nurse and patient (see Table 3). Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: American Cancer Society Grant Award Number: 117204-DSCN-09-142-01-SCN.
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
8
Journal of Pediatric Oncology Nursing
References Balboni, M. J., Sullivan, A., Amobi, A., Phelps, A. C., Gorman, D. P., Zollfrank, A., Peteet, J.R., Prigerson, H.G., Vanderweele, T. J., & Balboni, T. A. (2013). Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training. Journal of Clinical Oncology, 31, 461-467. Brady, M. J., Peterman, A. H., Fitchett, G., Mo, M., & Cella, D. (1999). A case for including spirituality in quality of life measurements in oncology. Psychooncology, 8, 417-428. Buck, H. G. (2006). Spirituality: Concept analysis and model development. Holistic Nursing Practice, 20, 288-292. Clarke, J. (2006). Religion and spirituality: A discussion paper about negativity, reductionism and differentiation in nursing texts. International Journal of Nursing Studies, 43, 775-785. Clarke, J. (2009). A critical view of how nursing has defined spirituality. Journal of Clinical Nursing, 18, 1666-1673. Cone, P. H., & Giske, T. (2012). Teaching spiritual care—A grounded theory among undergraduate nursing educators. Journal of Clinical Nursing, 22, 1951-1960. Ellison, C. W. (1983). Spiritual well-being: Conceptualization and measurement. Journal of Psychology & Theology, 11, 330-340. Faulkner, J. E., & De-Jong, G. F. (1966). Religiosity in 5-D: An empirical analysis. Social Forces, 45, 246-254. Flavelle, S. C. (2011). Experiences of an adolescent living with and dying of cancer. Archives of Pediatric & Adolescent Medicine, 165, 28-32. Fowler, J. W. (1981). Stages of faith: The psychology of human development and the quest for meaning. San Francisco, CA: Harper & Row. Fowler, J. W., & Dell, M. L. (2004). Stages of faith and identity: Birth to teens. Child and Adolescent Psychiatric Clinics of North America, 13(1), 17-33. Greenwald, D. F., & Harder, D. W. (2003). The dimensions of spirituality. Psychological Reports, 92(3 Pt 1), 975-980. Hendricks-Ferguson, V. (2006). Relationships of age and gender to hope and spiritual well-being among adolescents with cancer. Journal of Pediatric Oncology Nursing, 23, 189-199. Hendricks-Ferguson, V. (2008). Hope and spiritual well-being in adolescents with cancer. Western Journal of Nursing Research, 30, 385-401. Hill, P. C., & Pargament, K. I. (2003). Advances in the conceptualization and measurement of religion and spirituality: Implications for physical and mental health research. American Psychologist, 58, 64-74. Hinds, P. S., & Gattuso, J. S. (1991). Measuring hopefulness in adolescents. Journal of Pediatric Oncology Nursing, 8, 92-94. Hodge, D. R. (2006). A template for spiritual assessment: A review of the JCAHO requirements and guidelines for implementation. Social Work, 51, 317-326. Holder, D. W., DuRant, R. H., Harris, T. L., Daniel, J. H., Obeidallah, D., & Goodman, E. (2000). The association between adolescent spirituality and voluntary sexual activity. Journal of Adolescent Health, 26, 295-302.
Kamper, R., Van Cleve, L., & Savedra, M. (2010). Children with advanced cancer: Responses to a spiritual quality of life interview. Journal for Specialists in Pediatric Nursing, 15, 301-306. Kandasamy, A., Chaturvedi, S. K., & Desai, G. (2011). Spirituality, distress, depression, anxiety, and quality of life in patients with advanced cancer. Indian Journal of Cancer, 48, 55-59. Kim, S., & Esquivel, G. B. (2011). Adolescent spirituality and resilience: Theory, research, and educational practices. Psychology in the Schools, 48, 755-765. Koenig, H. G. (2004). Religion, spirituality, and medicine: Research findings and implications for clinical practice. Southern Medical Journal, 97, 1194-1200. Koenig, H. G., Larson, D. B., & McCullough, M. E. (2001). Handbook of religion and health. New York, NY: Oxford University Press. Kristeller, J. L., Zumbrun, C. S., & Schilling, R. F. (1999). “I would if I could”: How oncologists and oncology nurses address spiritual distress in cancer patients. Psychooncology, 8, 451-458. Lazenby, J. M. (2010). On “spirituality,” “religion,” and “religions”: A concept analysis. Palliative & Supportive Care, 8, 469-476. Martsolf, D. S., & Mickley, J. R. (1998). The concept of spirituality in nursing theories: Differing world-views and extent of focus. Journal of Advanced Nursing, 27, 294-303. McNeil, S. B. (1997). Johnny’s story: Transfusing a Jehovah’s Witness. Pediatric Nursing, 23, 287-288. Moadel, A., Morgan, C., Fatone, A., Grennan, J., Carter, J., Laruffa, G., Skummy, A., & Dutcher, J. (1999). Seeking meaning and hope: Self-reported spiritual and existential needs among an ethically-diverse cancer patient population. Psychooncology, 8, 378-385. Mueller, C. R. (2010). Spirituality in children: Understanding and developing interventions. Pediatric Nursing, 36, 197203, 208. Nelson, M. B., & Guelcher, C. (Eds.). (2014). Scope and standards of pediatric hematology oncology nursing practice. Chicago, IL: Association of Pediatric Hemato-logy/ Oncology Nurses. Nixon, A., & Narayanasamy, A. (2010). The spiritual needs of neuro-oncology patients from patients’ perspective. Journal of Clinical Nursing, 19, 2259-2370. Nowicki, S., & Strickland, B. (1973). A locus of control scale for children. Journal of Consulting and Clinical Psychology, 40, 148-154. Ozorak, E. W. (1989). Social and cognitive influences on the development of religious beliefs and commitment in adolescence. Journal of the Scientific Study of Religion, 28, 448-463. Paloutzian, R. F., & Ellison, C. W. (1982). Loneliness, spiritual well-being and the quality of life. In L. A. Peplau & D. Perlman (Eds.), Loneliness: A sourcebook of current theory, research, and therapy (pp. 224-237). New York, NY: Wiley. Reinert, K. G., & Koenig, H. G. (2013). Re-examining definitions of spirituality in nursing research. Journal of Advanced Nursing, 69, 2622-2634.
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
9
McNeil Reynolds, M. A. (2008). Hope in adults, ages 20-59, with advanced cancer. Palliative & Supportive Care, 6, 259-264. Richardson, P. (2012). Assessment and implementation of spirituality and religiosity in cancer care: Effects on patient outcomes. Clinical Journal of Oncology Nursing, 16, E150-E155. Rostosky, S. S., Danner, F., & Riggle, E. D. (2007). Is religiosity a protective factor against substance use in young adulthood? Only if you’re straight! Journal of Adolescent Health, 40, 440-447. Rubin, D., Dodd, M., Desai, N., Pollock, B., & Graham-Pole, J. (2009). Spirituality in well and ill adolescents and their parents: The use of two assessment scales. Pediatric Nursing, 35, 37-42. Sessanna, L., Finnell, D. S., & Jezewski, M. A. (2007). Spirituality in nursing and health-related literature: A concept analysis. Journal of Holistic Nursing, 25, 252-262. Sessanna, L., Finnell, D. S., Underhill, M., Chang, Y. P., & Peng, H. L. (2011). Measures assessing spirituality as more than religiosity: A methodological review of nursing and health-related literature. Journal of Advanced Nursing, 67, 1677-1694. Spilka, B., Zwartjes, W. J., & Zwartjes, G. M. (1991). The role of religion in coping with childhood cancer. Pastoral Psychology, 39, 295-304. Spurr, S., Berry, L., & Walker, K. (2013). The meanings older adolescents attach to spirituality. Journal for Specialist in Pediatric Nursing, 18, 221-232. Steen, S., & Anderson, B. (1995). Ages & stages of spiritual development. Journal of Christian Nursing, 12(2), 6-11. Surbone, A., & Baider, L. (2010). The spiritual dimension of cancer care. Critical Review in Oncology/Hematology, 73, 228-235.
Suzuki, L. K., & Beale, I. L. (2006). Personal web home pages of adolescents with cancer: Self-presentation, information dissemination, and interpersonal connection. Journal of Pediatric Oncology Nursing, 23, 152-161. Tebbi, C. K., Mallon, J. C., Richards, M. E., & Bigler, L. R. (1987). Religiosity and locus of control of adolescent cancer patients. Psychological Reports, 61, 683-696. Thune-Boyle, I. C., Stygall, J. A., Keshtgar, M. R., & Newman, S. P. (2006). Do religious/spiritual coping strategies affect illness adjustment in patients with cancer? A systematic review of literature. Social Science & Medicine, 63, 151-164. Vachon, M., Fillion, L., & Achille, M. (2009). A conceptual analysis of spirituality at the end of life. Journal of Palliative Medicine, 12(1), 53-59. Wilson, K., Mazhar, W., Rojas-Cooley, T., DeRosa, V., & Van Cleve, L. (2011). A glimpse into the lives of 3 children: Their cancer journey. Journal of Pediatric Oncology Nursing, 28, 100-106. Woodgate, R. L., & Degner, L. F. (2003). A substantive theory of Keeping the Spirit Alive: The Spirit Within children with cancer and their families. Journal of Pediatric Oncology Nursing, 20(3), 103-119. Zinnbauer, B. J., Pargament, K. I., Cole, B., Rye, M. S., Butter, E. M., Belavich, T. G., Hipp, K.M., Scott, A. B., & Kadar, J. L. (1997). Religion and Spirituality: Unfuzzying the Fuzzy. Journal for the Scientific Study of Religion, 36, 549-564.
Author Biography Sharon B. McNeil, RN, MS, CPON, is currently a doctoral student at the University of South Florida; she previously worked for more than 20 years as a pediatric oncology nurse.
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
research-article2015
JPOXXX10.1177/1043454214564397Journal of Pediatric Oncology NursingMcNeil
Article
Spirituality in Adolescents and Young Adults With Cancer: A Review of Literature
Journal of Pediatric Oncology Nursing 1–9 © 2015 by Association of Pediatric Hematology/Oncology Nurses Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043454214564397 jpo.sagepub.com
Sharon B. McNeil, RN, MS, CPON1
Abstract Purpose: Spirituality and religion have been found to have a positive impact on adults with cancer, but these concepts have not been well examined in adolescents and young adults (AYA) with cancer. AYA often question and struggle with their religious and spiritual beliefs, so it is not clear if spirituality and religion have the same positive impact on this age group. The purpose of this review of literature was to examine the research that has been conducted in spirituality in AYA with cancer. Methods: The review covered the years from 1980 to present. The terms cancer, adolescents, and young adults as well as the phrases spirit* and relig* were used to capture the different variations of words. Nine articles were found that explored spirituality and religiosity in AYA with cancer. Results: This review highlighted the need for clarifying the terms used in describing the concept. This lack of continuity in terms makes it difficult to compare the studies. The methods used to measure spirituality are varied. Implications for Practice: Pediatric oncology nurses need to be sensitive to the spiritual needs of their patients. This can be accomplished by keeping an open line of communication and ensuring uninterrupted time to pray or read scriptures. Because of the variety of ways to express spirituality, the important first step is to ask what spirituality means to them. Keywords spirituality, religion, adolescents and young adults, cancer
Introduction Spiritual care is one area where nurses often feel uncomfortable in providing care. This may be due to lack of time, lack of education, or feeling uncomfortable with the topic (Kristeller, Zumbrun, & Schilling, 1999; Richardson, 2012; Surbone & Baider, 2010). Nurses may feel that they are not the right health care team members to provide religious care, be unsure if allowed by hospital policy, or may be afraid of insulting their patients or families (Balboni et al., 2013; Surbone & Baider, 2010). There is evidence to support the fact that for adults, spirituality is linked to better quality of life, hope, and patient satisfaction (Balboni et al., 2013; Reynolds, 2008; Richardson, 2012; Surbone & Baider, 2010). Research has shown that adult patients appreciate the opportunity to share their spiritual beliefs with their health care providers (Surbone & Baider, 2010). Sharing beliefs can be helpful in increasing understanding of both the family and staff, especially if their beliefs are different from traditional beliefs in a community as in the case of Jehovah’s Witnesses (McNeil, 1997). This increased understanding can lead to a better rapport between the patients and nurses and can result in higher patient satisfaction.
Spiritual care has been recognized as an important part of care. The Joint Commission on Accreditation of Healthcare Organizations has mandated that spiritual care be assessed for patients in hospitals among other settings (Hodge, 2006). The Association of Pediatric Hematology Oncology Nurses recommends that spiritual traditions be assessed at time of diagnosis as well as during ongoing care (Nelson & Guelcher, 2014). The purpose of this review was to examine the spirituality literature in adolescents with cancer and provide an overview of adolescent faith development. There has been an explosion of interest and research on the topic of spirituality over the past 20 years (Clarke, 2006; Martsolf & Mickley, 1998). With this increased interest in how religion and spirituality affects health, researchers have struggled to define spirituality. Attempts to clarify spirituality have been the subject of concept analysis in the fields of theology, psychology, and nursing (Buck, 2006; Ellison, 1
University of South Florida, Tampa, FL, USA
Corresponding Author: Sharon B. McNeil, University of South Florida, Tampa, FL, USA. Email: [email protected]
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
2
Journal of Pediatric Oncology Nursing
1983; Greenwald & Harder, 2003; Hill & Pargament, 2003; Lazenby, 2010; Martsolf & Mickley, 1998; Sessanna, Finnell, & Jezewski, 2007; Vachon, Fillion, & Achille, 2009). The elements of spirituality most commonly identified in these analyses include the following: transcendence, a search for meaning or purpose in life, a connection with others, and a personal belief system (Hill & Pargament, 2003; Lazenby, 2010; Martsolf & Mickley, 1998; Vachon et al., 2009). Transcendence is described as an “experience and appreciation of a dimension beyond self” (Martsolf & Mickley, 1998, p. 294). One of the difficulties in discussing the concept of spirituality is that the concepts of religion, religiosity, and religiousness are associated with and at times used interchangeably with spirituality. Some researchers have sought to distinguish the concepts by limiting the concept of religion to the beliefs or doctrine espoused by a religious community (Koenig, 2004; Mueller, 2010; Rubin, Dodd, Desai, Pollock, & Graham-Pole, 2009). In this separatist view, spirituality is viewed as a search for meaning or purpose in life and not connected with a particular religious community or doctrine (Buck, 2006; Kim & Esquivel, 2011; Nixon & Narayanasamy, 2010). It is possible for patients to be spiritual, but not identify themselves as religious. A critical review of spirituality literature shows that the broader, more generic definitions of spirituality are favored by nurse researchers, whereas theological and other researchers favor a definition that combines both religious and spiritual elements (Clarke, 2009). Lazenby (2010) argues that spirituality and religion are the same concept and separates a different concept of Religions that discusses formalized religious organizations. In a review of nursing spirituality literature, Reinert and Koenig (2013) argue that a wider view of spirituality that includes religion is more beneficial in assisting nursing in developing appropriate interventions. Other researchers discovered that a majority of adult participants in their study did not appreciate the nuances and distinctions that researchers had ascribed to either spiritual or religious and instead described themselves as both spiritual and religious (Zinnbauer et al., 1997). In a qualitative study of spirituality in healthy adolescents, a similar lack of distinction between spirituality and religion was noted (Spurr, Berry, & Walker, 2013). Adolescents in that study were asked to describe spirituality and answers varied with some adolescents stating that “spirituality was having something to believe in” (p. 226) without a specific religion or God, but others believed that God was central to spirituality (Spurr et al., 2013). In addition to a lack of clarity as to what constitutes spirituality, there is no consensus as to how to measure spirituality. Measures to quantify spirituality have been as simple as church attendance and participation in a religious
community, but have also included investigator developed questions and psychometrically tested tools (Ellison, 1983; Holder et al., 2000; Rostosky, Danner, & Riggle, 2007; Sessanna, Finnell, Underhill, Chang, & Peng, 2011). Religion can have a positive or negative impact on both mental and physical health. Negative impacts of religion include the refusal of treatments such as blood transfusions and immunizations, stopping life-saving treatment, and failing to seek medical care (Koenig, Larson, & McCullough, 2001). Children can see illness as a punishment from God or as a punishment for real or perceived sins (Steen & Anderson, 1995). Positive impacts of religion include greater well-being, hope and optimism, more purpose and meaning in life as well as higher levels of social support (Koenig, 2004). Spirituality and religion have been found to have a positive impact on adults with cancer but these concepts have not been wellexamined in adolescents with cancer (Brady, Peterman, Fitchett, Mo, & Cella, 1999; Kandasamy, Chaturvedi, & Desai, 2011; Moadel et al., 1999; Thune-Boyle, Stygall, Keshtgar, & Newman, 2006).
Adolescent Faith Development As adolescents grow from childhood to adulthood, their faith and spiritual beliefs also grow and change (Fowler, 1981). In his theory of faith development, Fowler (1981) described faith as “our way of finding coherence in and giving meaning to the multiple forces and relations that make up our lives” (p. 4) and states that faith is not always religious. Faith development, like cognitive development, is described in stages for Fowler’s theory. Fowler (1981) found most adolescents to be in the synthetic–conventional faith stage. During this stage, the influence of peers, the media, and society compete with the family for influencing faith formation. Experiences, both positive and negative, may cause adolescents to examine their faith and question the faith and beliefs of their family or family system. This exploration may lead them to form their own personal faith and set of beliefs and either reject or confirm traditional beliefs of their parents (Fowler, 1981; Fowler & Dell, 2004; Ozorak, 1989).
Spirituality in Adolescents With Cancer While there are few studies that examine spirituality in children and adolescents with cancer (HendricksFerguson, 2006, 2008; Kamper, Van Cleve, & Savedra, 2010; Tebbi, Mallon, Richards, & Bigler, 1987), there are several qualitative studies exploring the experiences of adolescents with cancer that discuss aspects of spirituality (Flavelle, 2011, Suzuki & Beale, 2006; Wilson, Mazhar, Rojas-Cooley, DeRosa, & Van Cleve, 2011;
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
3
McNeil Table 1. Studies Found in Review of Literature. Study
Purpose
Flavelle (2011) Hendricks-Ferguson (2006) Hendricks-Ferguson (2008) Kamper, Van Cleve, and Savedra (2010) Spilka, Zwartjes, and Zwartjes (1991) Suzuki and Beale (2006) Tebbi et al. (1987) Wilson et al. (2011) Woodgate and Degner (2003)
To describe an adolescent’s experiences of living and dying with cancer To examine Hope and Spiritual Well-Being Scores and determine if there are any differences based on age or gender To determine if Hope and Spiritual Well-Being Scores change over time and if they differ according to length of time since diagnosis To describe the responses to a Spirituality Quality of Life Interview given by children with advanced cancer To examine the role of religion in coping with childhood cancer Personal web pages of adolescents with cancer were examined for what insights they provide To examine religious beliefs and locus of control in adolescents with cancer To explore the experiences of 3 children with advanced cancer through the use of case studies To explore the experience of childhood cancer from the children and family’s point of view
Woodgate & Degner, 2003). Young adults up to the age of 22 years are included in some studies, but none specifically aimed at the young adult age group. This review presents both the qualitative exploration of the adolescent cancer experience as well as quantitative studies designed to examine spirituality in adolescents with cancer. A review of literature starting in 1980 to present was conducted using the terms cancer, adolescents, and young adults. The phrases spirit* and relig* were used to capture the different variations of words starting with those letters for a more complete review. The review was conducted from September to December 2012 with updates reviewed until March 2014. The databases searched include Medline (OVID), PubMed (NCBI), CINAHL (EBSCO), and ProQuest Dissertations and Theses (PQDT). The limits applied were English language, Adolescent: 13 to 18 years, and Young Adults: 19 to 24 years. From an initial total of 435 articles returned, 9 articles were found that explored spirituality and religiosity in adolescents and young adults with cancer in the North America (see Table 1).
Qualitative Studies Woodgate and Degner (2003) explored how the experience of having cancer affected the child and his or her family through meaningful descriptions and interpretation of their experiences. The sample consisted of 39
Sample A 15 year old with osteosarcoma 78 teens with cancer between the ages of 13 and 20 78 teens with cancer between the ages of 13 and 20 years 60 children between the ages of 6 and 17 years 118 families with children from 3 months to 18 years 21 web pages of adolescents between 14 and 22 years 28 adolescents between 10 and 23 years 3 children aged 6, 12, and 17 years 39 families with children between the ages of 4 and 18 years
families; a majority of the families were White, 2-parent families with at least one sibling. The children ranged in age from 4 to 18 years with a median age of 10 years, and a majority of the children were diagnosed with leukemia or lymphoma. A variety of data collection techniques were used over an 80-week period including direct observation, focus groups, one-on-one interviews, and journaling. Based on their findings, these researchers developed a theory to describe how the child and families used their support systems and their individual family characteristics to “keep the spirit alive” and “get through the rough spots” that comes with the cancer diagnosis (p. 108). The “spirit” is conceptualized as the mindset that helps the family deal with living with a cancer diagnosis and includes the passion for living, the “fighter within,” and the need for connectedness (p. 110). The amount and type of support used by the family as well as the family’s approach to keeping the spirit alive were found to be key elements that influenced the process. Two of the characteristics of “keeping the spirit alive” that are related to spirituality are a need to keep connected and receiving support from religion. How support was received from religion was not further defined in the article. The study was well designed with a variety of data sources. However, the small, homogenous sample makes generalizing these concepts difficult. In another study that explored the experience of being an adolescent with cancer, Suzuki and Beale (2006)
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
4
Journal of Pediatric Oncology Nursing
examined the personal web pages of adolescents with cancer. Using general Web site directories as well as home page directories with a keyword search of cancer teen and cancer survivor personal home page, the researchers searched for public Web sites created by a person with cancer between the ages of 13 and 22 years. The researchers found 21 home pages that met their criteria. The young people who created the web pages ranged in age from 14 to 22 years with an average age of 16 years. There were 11 females, 9 males, and one whose gender was not identified. A majority of the adolescents had leukemia and lymphoma. The elements of the web page were rated for the amount and frequency of entries in which cancer was discussed. Sharing their story, general cancer information, and connecting with others whose lives were touched by cancer were the most common usages of the Web sites. While the trauma and horror of the cancer treatment were described, a majority of adolescent Web sites discussed the positive consequences of having cancer and how they found meaning in their lives. One adolescent posted an essay on her spirituality and cancer, describing how her belief in God helps her through treatment while another mentioned anger at God for allowing the cancer to occur. The use of the internet for support is a growing phenomenon and appears to be one readily used by adolescents and young adults. Gathering information from the internet poses a different set of limitations since all the information gathered is self-report without any personal interaction to confirm details of the information presented. The population is poorly defined as the definition is based on the information the adolescent chooses to share. The inclusion criteria determined by the researcher limits the population to not only adolescents with cancer, but also adolescents who have the means, skills, and the interest in creating a Web site. By limiting the population to adolescents who have the skills to create their own Web site, it is possible that a larger group of adolescents with cancer who use Web sites created by others was not discovered. A third study exploring the experience of an adolescent with cancer was conducted by Flavelle (2011). She reviewed the 90-page journal kept by Ed, a 15-year-old young man diagnosed with osteosarcoma during the last 3 months of his life. He details not only his physical deterioration, but also the emotional effects of dying of cancer on him and his family. He writes poignantly about wanting to protect his younger sister from the reality of his illness as well as how he finds himself relying on his parents more and more as the time of his death grows closer. Five main themes were found in Ed’s journal: adolescent development, escape from illness, changing relationships, symptoms, and spirituality. In the beginning of the journal, Ed describes searching for meaning in life and trying to find meaning in his experience. As his death
draws closer, Ed discusses using prayer and reading his Bible as techniques of dealing with his illness and impending death. Exploring one adolescent’s experience with cancer in his own words makes for a powerful experience. Unlike the two previously discussed studies, Flavelle was not asking any questions or looking for specific information, but rather exploring the lived experience of living and dying with cancer. From of a larger study of quality of life, symptoms, and symptom management in children with advanced cancer, Wilson et al. (2011) presented the experiences of three children with advanced cancer over a 5-month period. The children in the study ranged in age from 6 to 17 years of age and the 3 highlighted children were aged 6, 12, and 17 years with 2 boys and 1 girl. The goal was to interview the children 10 times over the study period unless the child died first. All three of the children died, though one died well after the study period. The number of interviews each child participated in is not reported. The interviewers asked open-ended questions asking about the child’s day and asking what the child wanted to talk about. As part of the larger study, the children completed 9 different questionnaires that quantified their symptoms and quality of life. Although no prompts specific to spirituality were reported, all three of the children discussed spiritual issues with the researchers. The two older teens reported using prayer to ask for health and normality. One of the teens reported periods of not praying and the other reported reading her Bible as a comfort measure. The younger child was interested in questions about heaven and what heaven would be like. All three children wove spirituality into their lives and their fight with cancer, sometimes relying more heavily on spirituality than other times. The four studies together highlight the importance of spirituality in adolescents with cancer. Woodgate and Degner (2003), Wilson et al. (2011), and Suzuki and Beale (2006) found that adolescents and their families looked for meaning in life and relied on religion for support. Some of the children and adolescents reported the use of prayer and reading the Bible, but others did not describe any specific spiritual techniques used by the families. The studies had different sets of limitations. Woodgate and Degner had a small, homogenous population, but had a well-designed study with multiple data sources. Suzuki and Beale also had a small sample size that used Web sites to explore the experience of living with cancer. Using Web sites can be problematic as the narrative is self-report and there is no guarantee that any of the information is accurate. There was no interaction between the researcher and the population so none of the themes were verified with the sample. Flavelle’s study was different as it was the analysis of a particular adolescent’s journal. There was no guiding the discussion or
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
5
McNeil looking for specific information, it was whatever Ed chose to write about. Ed used prayer, Bible studies, and searching for meaning to cope with his illness. Wilson and colleagues presented three case studies that they believed typified their larger study. None of the studies can be generalized, but all of them provide some insight as to how spirituality influences the lives of children and adolescents with cancer.
Quantitative Studies In addition to the studies that explored the experience of living with cancer, five articles were found that specifically examined spirituality in adolescents and children with cancer. The concept studied was not consistent throughout the studies. One examined religiosity, one examined religion, one examined spiritual quality of life, and the final two articles examined spiritual well-being. Tebbi et al. (1987) examined religiosity and locus of control in adolescents with cancer. This study used a cross-sectional design with a convenience sample of 28 adolescents (20 boys and 8 girls) between the ages of 10 and 23 years, with an average age of 17 years. Most of the adolescents were undergoing treatment for leukemia and lymphoma, 11 had been on treatment for less than a year, 8 had been on treatment for 1 to 3 years, and 9 had been on treatment for more than 3 years. All the adolescents were Christian with a majority of them being Roman Catholic. The study used 2 tools, the Nowicki-Strickland Locus of Control Scale (Nowicki & Strickland, 1973) and the Faulkner-De-Jong Religiosity Scale (Faulkner & De-Jong, 1966). Both tools were described, but no information was given on their psychometric properties. There were no definitions provided for either locus of control or religiosity, making it difficult to determine exactly what concepts were being examined. A majority of the adolescents believed in God and most believed that religion provides security in the face of death. There was no difference in religiosity or locus of control scores based on age, gender, religion, or length of time since diagnosis. The study is limited by the small, entirely Christian sample. Spilka, Zwartjes, and Zwartjes (1991) explored the role of religion in the families of children with cancer. A total of 118 families were enrolled in the study, including 112 mothers, 81 fathers, and 66 patients. The average age of the children was 15 years and a majority of the children had leukemia or lymphoma. The participating family members were interviewed; in addition, an 8-item investigator developed tool asked about religion for the parents and a 2-item tool was used for the children. An α reliability coefficient of more than .60 for all items was reported, but no details on the construction of the tool were provided. The particulars about the interviews were not discussed so there is no information on how often the
participants were interviewed, if the parents and children were interviewed separately, or how long the interviews lasted. The study found that religion positively correlated with more closely knit families who grew closer with the cancer diagnosis. These families tended to turn inwards after the cancer diagnosis, strengthening their ties with family and close friends, but possibly ending more casual relationships. There was no information provided on the religious preference of the participants and those families who were not overly religious were not discussed. Kamper et al. (2010) used an investigator developed spiritual quality-of-life interview tool to explore spirituality in children with advanced cancer. The sample was a population of 60 children (25 boys and 35 girls) between the ages of 6 and 17 years. The study had more ethnic diversity than the other studies discussed with a population that was 52% Latino and 30% White, non-Latino. The spiritual quality of life tool is an 8 question interview guide based on a review of literature. The tool was reviewed by a panel of experts, families, and children, but no other psychometric data was provided. Each child was interviewed every 2 weeks for 5 months or until their death, resulting in a total of 374 interviews, with each child participating in between 1 and 10 interviews. The interviews were conducted by either a research associate or health care professional in the clinic, hospital, or home. When asked what made them happy, most of the children said that it was family and friends that made them happy. It was the constraints of their illness that made them unhappy. Almost 80% of the children stated that they did something to feel closer to God, the most frequent activity was praying and the thing most commonly prayed for was normalcy. There was no difference in choosing to pray or what they prayed for based on age. The parents of the children responded positively to the study and were encouraged to discover the impact of spirituality on their children. While this study population was more ethnically diverse, there was no information on the religious preference or upbringing of the children so it is not known if they were all Christian or if there was a more religiously diverse group. Whether or not the children’s answers changed over time was not assessed. While these three studies had larger samples than the qualitative studies, none had large, diverse populations. The concepts studied were different in each study. Religiosity, religion, and spiritual quality of life were the concepts studied in each study, respectively. Each study used a different tool to assess spirituality making it difficult to compare the studies. All three found high levels of spirituality, but there was no discussion on how they used their spirituality in coping with their cancer diagnosis. Hendricks-Ferguson (2006, 2008) published two studies examining hope and spirituality in adolescents with cancer. It is not clearly stated, but it appears that both
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
6
Journal of Pediatric Oncology Nursing
Table 2. Summary of the Concepts Studies. Concept Studied Spirituality Spiritual well-being Spiritual quality of life Religion Religiosity Spirit within
Study Authors
Frequency
Flavelle (2011) Suzuki and Beale (2006) Hendricks-Ferguson (2006, 2008) Kamper et al. (2010) Wilson et al. (2011) Spilka et al. (1991) Tebbi et al. (1987) Woodgate and Degner (2003)
2 2 2 1 1 1
articles discuss aspects of the same study. The population used was a sample of 78 adolescents (45 girls, 33 boys) with a median age of 16 years. Ninety-five percent of the population was White and all were Christian; 45% of them were Roman Catholic. A majority of the adolescents had leukemia or lymphoma. The study was conducted during an outpatient clinic appointment and used two tools, the Hopefulness Scale for Adolescents (Hinds & Gattuso, 1991) and the Spiritual Well-Being Scale (SWBS; Paloutzian & Ellison, 1982). The SWBS results in 3 scores, the overall spiritual well-being, existential well-being, and religious well-being. Psychometric data were included for both scales discussing the construct and content validity, reliability, the use of the tools in the population under study; Cronbach’s αs were included for all the scales. The first Hendricks-Ferguson article (2006) examined hope and spiritual well-being in relationship to the age and gender of the adolescents with cancer. The adolescents were divided into 3 age groups: early adolescence (11-14 years), middle adolescence (15-17 years), and late adolescence (18-20 years). The majority of the adolescents were in middle adolescence with 15% in early adolescence and 31% in the late phase. The middle adolescents had the highest hope and spirituality scores. The girls reported both higher hope and spirituality scores than the boys with the highest hope scores in early adolescent girls and the lowest hope scores in early adolescent boys. The overall SWBS and the existential well-being scores were not different based on the different age groups, middle adolescents scored higher on the religious well-being scale than late adolescents. Girls had higher scores on not only the SWBS but also the existential and religious well-being scales. The second Hendricks-Ferguson article (2008) examined hope and spiritual well-being in relationship to time since diagnosis in 78 adolescents with cancer. The time since diagnosis was divided into 4 groups: those diagnosed less than 1 year, 1 year to less than 2 years, 2 years to less than 3 years, and 3 years and greater. A majority of the adolescents (51%) were 3 years or more off treatment
while the rest of the adolescents were evenly distributed in the other groups. Hope scores did not differ significantly based on time since diagnosis, although the scores for those diagnosed 2 to less than 3 years were lower than the other 3 groups. The lowest spiritual well-being scores, religious well-being, and existential well-being scores were in the 2 year to less than 3 year time groups. Overall SWBS scores were the highest in those diagnosed less than 2 years, religious well-being scores were the highest in those diagnosed less than 1 year while the existential well-being scores were the highest in those diagnosed 1 to less than 2 years. While the hope scores did not vary according to the different groups, the spirituality scores did, reflecting that perhaps spirituality was more important at different points in the treatment trajectory. Overall, Hendricks-Ferguson (2006, 2008) found that spirituality scores varied with age, gender, and length of time since diagnosis, while Tebbi et al. (1987) found no difference in religiosity scores based on age or gender. Again, it is difficult to compare the studies as they examine different concepts with different measurement tools. The other two spirituality studies (Kamper et al., 2010; Spilka et al., 1991) did not examine spirituality in relationship to any demographic data, but rather how it affected the family unit or how the child used his or her spirituality to deal with a cancer diagnosis. All the studies that directly examined spirituality showed that spirituality is important to children and adolescents with cancer. Kamper et al. (2010), Wilson et al. (2011), and Flavelle (2011) mentioned specific actions taken such as prayer, reading the Bible, and meditation as methods of using their spirituality.
Summary Limitations All the studies in this review contributed to the understanding of spirituality in adolescents with cancer, but they also highlighted the issues studying the topic. The concepts examined in each study varied, as did the method of measurement of them (see Table 2). There is
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
7
McNeil Table 3. Important Points to Remember. Know your hospital or institutional policy on spirituality and religious beliefs Be respectful of the beliefs of patients and families It is acceptable to ask the meaning behind unfamiliar beliefs, religious medals, icons, or statues as long as it is done in a nonjudgmental manner If they feel comfortable doing so, it is acceptable for a health care team member to acknowledge their own beliefs if asked by a patient or family member Health care workers should never preach or attempt to impose their own beliefs on a patient or family member If a family asks the nurse to pray with them, the nurse should be respectful. It is acceptable to join in their prayer, stand with a bowed head, or respectfully decline Know what religious/pastoral care resources are available
no standard tool for measuring spirituality in adolescents, and this makes comparing studies difficult. All the studies were small studies with predominately White and Christian populations. Studies looking at a variety of adolescents from different ethnic and religious backgrounds are needed. The age ranges in the studies varied. Some studies included children as young as 6 years and the oldest participants were in their early 20s. The full range of young adults was not included in any of the studies. A majority of the adolescents and young adults had leukemia or lymphoma. While that is a common diagnosis in this age group, it would be beneficial to explore spirituality in those with other types of cancer. The SWBS is a tool that has evidence of validity and reliability in adolescents and has been used in a variety of populations. Tools that have been well tested are preferred to tools that are developed by the researchers that have no evidence of validity and reliability.
Implications for Research There is a need for both more qualitative and quantitative studies of spirituality in adolescents with cancer. Spirituality had been shown to be important to children and adolescents with cancer. Prayer, meditation, reading the Bible, attending church services, and a feeling of connectedness were all mentioned as aspects of spirituality used by the adolescents in the studies reviewed. Exploration of these themes in non-Christian and more ethnically diverse groups is needed. This information can be used to develop nursing interventions to support the children and adolescents with cancer.
Implications for Education Most nurses and other health care professionals do not have formal education regarding spirituality, but it is considered an integral part of nursing care (Cone & Giske, 2012). Staff members often feel uncomfortable or illequipped to fulfill their patients’ spiritual needs. As this review demonstrates, spirituality is important to adolescents and young adults as well as their families. Staff
nurses need education on the stages of faith development and how, as nurses, they can support their patients’ faith. The more familiar nurses are with faith and spirituality, the more comfortable they will become in dealing with spirituality.
Implications for Practice Adolescents and young adults enter the health care system with a wide variety of beliefs. As pediatric oncology nurses, it is not possible to know details about each belief system, but it is important to approach the topic with respect and sensitivity. It is important to provide the adolescents and young adults time to pursue their beliefs— this may mean time for prayer or meditation, time to read the Bible or other religious texts. Other beliefs may include the placement of amulets, statues, religious icons, or religious medals around the bed or room. One way that nurses can provide spiritual care is to ask about these items and discover what they mean to the patient. This understanding can lead to acceptance or an increase comfort level on the part of the health care staff and the patients. It is important to note that nurses should never preach to the patients or impose the staff’s beliefs on the patients and families. Supporting and respecting the spiritual and/or religious beliefs of the adolescents and young adults can be easily accomplished by the nursing staff without making either side feel uncomfortable. Based on the literature, suggestions are provided to help spark a dialogue between the nurse and patient (see Table 3). Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: American Cancer Society Grant Award Number: 117204-DSCN-09-142-01-SCN.
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
8
Journal of Pediatric Oncology Nursing
References Balboni, M. J., Sullivan, A., Amobi, A., Phelps, A. C., Gorman, D. P., Zollfrank, A., Peteet, J.R., Prigerson, H.G., Vanderweele, T. J., & Balboni, T. A. (2013). Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training. Journal of Clinical Oncology, 31, 461-467. Brady, M. J., Peterman, A. H., Fitchett, G., Mo, M., & Cella, D. (1999). A case for including spirituality in quality of life measurements in oncology. Psychooncology, 8, 417-428. Buck, H. G. (2006). Spirituality: Concept analysis and model development. Holistic Nursing Practice, 20, 288-292. Clarke, J. (2006). Religion and spirituality: A discussion paper about negativity, reductionism and differentiation in nursing texts. International Journal of Nursing Studies, 43, 775-785. Clarke, J. (2009). A critical view of how nursing has defined spirituality. Journal of Clinical Nursing, 18, 1666-1673. Cone, P. H., & Giske, T. (2012). Teaching spiritual care—A grounded theory among undergraduate nursing educators. Journal of Clinical Nursing, 22, 1951-1960. Ellison, C. W. (1983). Spiritual well-being: Conceptualization and measurement. Journal of Psychology & Theology, 11, 330-340. Faulkner, J. E., & De-Jong, G. F. (1966). Religiosity in 5-D: An empirical analysis. Social Forces, 45, 246-254. Flavelle, S. C. (2011). Experiences of an adolescent living with and dying of cancer. Archives of Pediatric & Adolescent Medicine, 165, 28-32. Fowler, J. W. (1981). Stages of faith: The psychology of human development and the quest for meaning. San Francisco, CA: Harper & Row. Fowler, J. W., & Dell, M. L. (2004). Stages of faith and identity: Birth to teens. Child and Adolescent Psychiatric Clinics of North America, 13(1), 17-33. Greenwald, D. F., & Harder, D. W. (2003). The dimensions of spirituality. Psychological Reports, 92(3 Pt 1), 975-980. Hendricks-Ferguson, V. (2006). Relationships of age and gender to hope and spiritual well-being among adolescents with cancer. Journal of Pediatric Oncology Nursing, 23, 189-199. Hendricks-Ferguson, V. (2008). Hope and spiritual well-being in adolescents with cancer. Western Journal of Nursing Research, 30, 385-401. Hill, P. C., & Pargament, K. I. (2003). Advances in the conceptualization and measurement of religion and spirituality: Implications for physical and mental health research. American Psychologist, 58, 64-74. Hinds, P. S., & Gattuso, J. S. (1991). Measuring hopefulness in adolescents. Journal of Pediatric Oncology Nursing, 8, 92-94. Hodge, D. R. (2006). A template for spiritual assessment: A review of the JCAHO requirements and guidelines for implementation. Social Work, 51, 317-326. Holder, D. W., DuRant, R. H., Harris, T. L., Daniel, J. H., Obeidallah, D., & Goodman, E. (2000). The association between adolescent spirituality and voluntary sexual activity. Journal of Adolescent Health, 26, 295-302.
Kamper, R., Van Cleve, L., & Savedra, M. (2010). Children with advanced cancer: Responses to a spiritual quality of life interview. Journal for Specialists in Pediatric Nursing, 15, 301-306. Kandasamy, A., Chaturvedi, S. K., & Desai, G. (2011). Spirituality, distress, depression, anxiety, and quality of life in patients with advanced cancer. Indian Journal of Cancer, 48, 55-59. Kim, S., & Esquivel, G. B. (2011). Adolescent spirituality and resilience: Theory, research, and educational practices. Psychology in the Schools, 48, 755-765. Koenig, H. G. (2004). Religion, spirituality, and medicine: Research findings and implications for clinical practice. Southern Medical Journal, 97, 1194-1200. Koenig, H. G., Larson, D. B., & McCullough, M. E. (2001). Handbook of religion and health. New York, NY: Oxford University Press. Kristeller, J. L., Zumbrun, C. S., & Schilling, R. F. (1999). “I would if I could”: How oncologists and oncology nurses address spiritual distress in cancer patients. Psychooncology, 8, 451-458. Lazenby, J. M. (2010). On “spirituality,” “religion,” and “religions”: A concept analysis. Palliative & Supportive Care, 8, 469-476. Martsolf, D. S., & Mickley, J. R. (1998). The concept of spirituality in nursing theories: Differing world-views and extent of focus. Journal of Advanced Nursing, 27, 294-303. McNeil, S. B. (1997). Johnny’s story: Transfusing a Jehovah’s Witness. Pediatric Nursing, 23, 287-288. Moadel, A., Morgan, C., Fatone, A., Grennan, J., Carter, J., Laruffa, G., Skummy, A., & Dutcher, J. (1999). Seeking meaning and hope: Self-reported spiritual and existential needs among an ethically-diverse cancer patient population. Psychooncology, 8, 378-385. Mueller, C. R. (2010). Spirituality in children: Understanding and developing interventions. Pediatric Nursing, 36, 197203, 208. Nelson, M. B., & Guelcher, C. (Eds.). (2014). Scope and standards of pediatric hematology oncology nursing practice. Chicago, IL: Association of Pediatric Hemato-logy/ Oncology Nurses. Nixon, A., & Narayanasamy, A. (2010). The spiritual needs of neuro-oncology patients from patients’ perspective. Journal of Clinical Nursing, 19, 2259-2370. Nowicki, S., & Strickland, B. (1973). A locus of control scale for children. Journal of Consulting and Clinical Psychology, 40, 148-154. Ozorak, E. W. (1989). Social and cognitive influences on the development of religious beliefs and commitment in adolescence. Journal of the Scientific Study of Religion, 28, 448-463. Paloutzian, R. F., & Ellison, C. W. (1982). Loneliness, spiritual well-being and the quality of life. In L. A. Peplau & D. Perlman (Eds.), Loneliness: A sourcebook of current theory, research, and therapy (pp. 224-237). New York, NY: Wiley. Reinert, K. G., & Koenig, H. G. (2013). Re-examining definitions of spirituality in nursing research. Journal of Advanced Nursing, 69, 2622-2634.
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
9
McNeil Reynolds, M. A. (2008). Hope in adults, ages 20-59, with advanced cancer. Palliative & Supportive Care, 6, 259-264. Richardson, P. (2012). Assessment and implementation of spirituality and religiosity in cancer care: Effects on patient outcomes. Clinical Journal of Oncology Nursing, 16, E150-E155. Rostosky, S. S., Danner, F., & Riggle, E. D. (2007). Is religiosity a protective factor against substance use in young adulthood? Only if you’re straight! Journal of Adolescent Health, 40, 440-447. Rubin, D., Dodd, M., Desai, N., Pollock, B., & Graham-Pole, J. (2009). Spirituality in well and ill adolescents and their parents: The use of two assessment scales. Pediatric Nursing, 35, 37-42. Sessanna, L., Finnell, D. S., & Jezewski, M. A. (2007). Spirituality in nursing and health-related literature: A concept analysis. Journal of Holistic Nursing, 25, 252-262. Sessanna, L., Finnell, D. S., Underhill, M., Chang, Y. P., & Peng, H. L. (2011). Measures assessing spirituality as more than religiosity: A methodological review of nursing and health-related literature. Journal of Advanced Nursing, 67, 1677-1694. Spilka, B., Zwartjes, W. J., & Zwartjes, G. M. (1991). The role of religion in coping with childhood cancer. Pastoral Psychology, 39, 295-304. Spurr, S., Berry, L., & Walker, K. (2013). The meanings older adolescents attach to spirituality. Journal for Specialist in Pediatric Nursing, 18, 221-232. Steen, S., & Anderson, B. (1995). Ages & stages of spiritual development. Journal of Christian Nursing, 12(2), 6-11. Surbone, A., & Baider, L. (2010). The spiritual dimension of cancer care. Critical Review in Oncology/Hematology, 73, 228-235.
Suzuki, L. K., & Beale, I. L. (2006). Personal web home pages of adolescents with cancer: Self-presentation, information dissemination, and interpersonal connection. Journal of Pediatric Oncology Nursing, 23, 152-161. Tebbi, C. K., Mallon, J. C., Richards, M. E., & Bigler, L. R. (1987). Religiosity and locus of control of adolescent cancer patients. Psychological Reports, 61, 683-696. Thune-Boyle, I. C., Stygall, J. A., Keshtgar, M. R., & Newman, S. P. (2006). Do religious/spiritual coping strategies affect illness adjustment in patients with cancer? A systematic review of literature. Social Science & Medicine, 63, 151-164. Vachon, M., Fillion, L., & Achille, M. (2009). A conceptual analysis of spirituality at the end of life. Journal of Palliative Medicine, 12(1), 53-59. Wilson, K., Mazhar, W., Rojas-Cooley, T., DeRosa, V., & Van Cleve, L. (2011). A glimpse into the lives of 3 children: Their cancer journey. Journal of Pediatric Oncology Nursing, 28, 100-106. Woodgate, R. L., & Degner, L. F. (2003). A substantive theory of Keeping the Spirit Alive: The Spirit Within children with cancer and their families. Journal of Pediatric Oncology Nursing, 20(3), 103-119. Zinnbauer, B. J., Pargament, K. I., Cole, B., Rye, M. S., Butter, E. M., Belavich, T. G., Hipp, K.M., Scott, A. B., & Kadar, J. L. (1997). Religion and Spirituality: Unfuzzying the Fuzzy. Journal for the Scientific Study of Religion, 36, 549-564.
Author Biography Sharon B. McNeil, RN, MS, CPON, is currently a doctoral student at the University of South Florida; she previously worked for more than 20 years as a pediatric oncology nurse.
Downloaded from jpo.sagepub.com at University of British Columbia Library on November 15, 2015
