March 2010 Article of the Month
This month's article selection is by Chaplain John Ehman,
University of Pennsylvania Medical Center-Penn Presbyterian, Philadelphia PA.
Morse, E. E. and O'Rourke, K. "Spirituality of Childhood Cancer Survivors" Journal of the Society for Integrative Oncology 7, no. 4 (Fall 2009): 146-154.
SUMMARY and COMMENT: This month's article is noteworthy because its principal author, Elizabeth E. Morse, is a chaplain (--the Spiritual Care Coordinator at South Lake Hospital, Clermont, FL), because it provides a good overview of research on spirituality and childhood cancer survivors, and because it suggests many avenues for future work in an area of limited study but of burgeoning importance. The piece grew out of an epidemiology certificate program in which Chaplain Morse was enrolled. Kathleen O'Rourke is a professor of epidemiology at the University of South Florida.
Morse and O'Rouke state at the outset: "As survival rates for childhood cancer reach approximately 80%, it is essential to continue to seek means to better understand their experiences and to support their needs" [p. 146].
The purpose of this review is to examine studies that have investigated spiritual growth, coping, and frame of mind throughout the experiences of childhood cancer survivors. Studies of the spirituality of children and of childhood cancer survivors are both relatively uncommon. Those reviewed in this article contribute to the conceptualization of spirituality in children and point to the benefits of including spiritual paradigms in the ongoing support of childhood cancer survivors. [p. 146]
From a literature search, ten research articles are identified and are summarized neatly in a table [pp. 148-150] giving information about the sample, purpose, research design, outcome measures/data sources, and findings/conclusions for each study. This is an invaluable summary for anyone interested in the subject. [For the original abstracts of these articles, see Related Items of Interest, below.] The authors also comment on the themes of the studies, focusing especially on hope and spiritual well-being, but noting other "core concepts of children and adolescents' sense of spirituality" such as "understanding, meaning and coping, …and an identification of a 'sense of spirit' or psychospirituality throughout the cancer journey," as well as "how children with cancer used spiritual strategies for coping and how these responses related to their psychosocial adjustment" [p. 147, but see generally pp. 147, 151-152].
Among the findings of the studies summarized which may have implications for survivors' spirituality:
- adolescents' development of a "self-sustaining process" through which they gain a sense of hopefulness
- the importance of "hoped-for objects" for adolescents during the initial six-months of treatment
- an association between employing hopefulness as a coping strategy and self-esteem in female adolescents
- the value of keeping a positive mind-set for many adolescents
- the need of "keeping the spirit alive," with spirit being perceived by children and their families as "(1) a particular mindset or state of mind. (2) a force within or a need to persevere, (3) a passion or wonder for living, and (4) a need to feel connected"
- the role of "a 'process of thriving' that was understood as 'positive life change that involves psychospiritual growth and is based on the meaning that survivors make out of their cancer experience"
The article concludes with a discussion of the research generally and in terms of needs for future work [--see pp. 152-153]. Suggestions for continuing study include investigations of the following, especially in the context of the themes of spirituality and spiritual growth.
The authors also point out the need for the development of measures in all of these areas.
- the process of achieving hope and patterns of specific hopes over successive time periods
- how processes like the "process of thriving," the "self-sustaining process," the "process of keeping the spirit alive" may be related to one another
- children's sense of spirit and how health care providers may support them in this
- coping along the continuum of cancer survivorship
- adolescents' understanding of concluding treatment
- spiritual practices and beliefs as a strategy for coping amid different diagnoses and treatments
- long-term dynamics of thriving, healing, and coping in cancer survivors
- resilience and its relation to hopefulness
- the importance of connection with others
- the role of a sense of transcendence, peace, joy, creativity, beauty and play
- role of the family
This article offers more in the way of food for thought than concrete guidance about spirituality and childhood cancer survivors, but it raises significant ideas and should be basic reading for chaplains working with children and adolescents and with oncology patients of all ages. It also holds up an example of how one clinical chaplain is finding the exploration of published research to be valuable for her own professionalism.
Suggestions for the Use of the Article for Discussion in CPE:
This month's article would seem to be of special interest to chaplains in pediatric hospitals, but for those in other settings it could provide an opportunity to invite into their CPE discussion a pediatric chaplain. Discussion could focus on ways in which illnesses like cancers may affect childhood/adolescent developmental processes, with implications for issues in adulthood. The particular theme of hope could be a focus [--see esp. pp. 147 and 151], and students could consider how that stands in relation to spirituality, in light of the authors' conceptualization of spirituality [--see p. 147]. Since the article is brief, and since it offers a good feel for the studies it describes, perhaps each student could pair their reading with one of the ten studies highlighted by Morse and O'Rourke; to expand the overall discussion. Finally, of the many suggestions for future research, which ones most capture students' attention --that may be telling of students interest for future research-related article discussions and may also indicate areas for student research projects.
Related Items of Interest:
I. The 10 studies identified in our featured article -- and summarized in Table 1 on pp. 148-150 -- are the following:
Cantrell, M. A. and Conte, T. [College of Nursing, Villanova University, Villanova, PA]. "Enhancing hope among early female survivors of childhood cancer via the Internet: a feasibility study." Cancer Nursing 31, no. 5 (Sep-Oct 2008): 370-379. [(Abstract:) The purpose of this research was to establish the feasibility of delivering the Hope Intervention Program (HIP) using a Web-based design among 6 female survivors of childhood cancer. The HIP is an 8-week program to foster and promote hope. Each session of the HIP has specific focus, goals, and activities that offer opportunities for participants to share and discuss issues of importance to them. The HIP was delivered online with the use of educational software that included Web cameras and voice and text chat capabilities. Feasibility was evaluated by examining how easily and effectively the software and hardware technology could be used to deliver the HIP and if meaningful dialogue and interactions among the study participants and the nurse interventionist could occur online. The evaluation of this study suggested that using a Web-based approach was effective in the delivery of the intervention, as evidenced by participants' evaluation of the program and their descriptive comments that reflect that the online sessions promoted intimate, meaningful human-to-human interactions to foster hope and build a trusting relationship among and between group members. The results of this study suggest that Web-based psychosocial nursing interventions for survivors of childhood survivors are feasible for nurse researchers to conduct.]
Cantrell, M. A. and Lupinacci, P. [College of Nursing, Villanova University, Villanova, PA]. "A predictive model of hopefulness for adolescents." Journal of Adolescent Health 35, no. 6 (Dec 2004): 478-485. [(Abstract:) PURPOSE: To develop a predictive model of hopefulness using the variables of age, gender, and self-esteem among a sample of adolescents with cancer and a sample of healthy adolescents. METHODS: Forty-five healthy adolescents were individually matched with 45 adolescents with cancer on the basis of gender and age. Of the 90 subjects included in this study, 48 were male and 42 were female; half of the males (n = 24) and half of the females (n = 21) had cancer. Perceived level of self-esteem was measured using the Coppersmith Self-Esteem Inventory (SEI), and their degree of hopefulness was measured with the Hopefulness Scale for Adolescents (HSA). Data were analyzed using the Statistical Analysis System (SAS) Version 8. RESULTS: Adolescents' perceived level of self-esteem and hopefulness did not differ by gender or disease status. Patients with cancer had a significantly higher mean hopefulness score than healthy subjects (p = .031), and those adolescents with cancer did not have a lower perceived sense of self-esteem than healthy adolescents. The correlation coefficients between SEI and HSA were statistically significant for females with cancer, r = 0.723 (p < .001) and for healthy females, r = 0.676 (p < .001). In contrast, the correlations between SEI and HSA for males were not statistically significant. A model was constructed to predict a subject's hopefulness score that included the variables of self-esteem (p < .001), gender (p = .001), disease status (p = .005), and the interaction between self-esteem and gender (p = .002). CONCLUSIONS: The findings of this study demonstrate that hopefulness is a coping strategy used by female adolescents, both healthy and ill, that is closely related to their perceived sense of self-esteem.]
Hendricks-Ferguson, V. [Barnes-Jewish College of Nursing, St. Louis, MO]. "Hope and spiritual well-being in adolescents with cancer." Western Journal of Nursing Research 30, no. 3 (Apr 2008): 385-401; with discussion on pp. 402-407. [(Abstract:) This study examines the relationships of hope and spiritual well-being (SWB)--and its dimensions, religious well-being (RWB) and existential well-being (EWB)--to time since diagnosis among adolescents with cancer. A descriptive cross-sectional design was used. The sample of 78 adolescents diagnosed with cancer was recruited from two pediatric oncology clinics. Adolescents in the first two time periods reported significantly higher levels of SWB, RWB, and EWB than those in subsequent time periods. Hope did not significantly vary over time. Hence, time since diagnosis may influence adolescents' levels of SWB and its dimensions during the cancer experience. Adolescents' use of SWB, RWB, and EWB as coping resources should be examined in longitudinal studies from diagnosis through survivorship.]
Hendricks-Ferguson, V. [Barnes-Jewish College of Nursing, St Louis, MO]. "Relationships of age and gender to hope and spiritual well-being among adolescents with cancer." Journal of Pediatric Oncology Nursing 23, no. 4 (Jul-Aug 2006): 189-199. [(Abstract:) The purpose of this study was to examine hope and spiritual well-being, with its 2 dimensions of religious well-being and existential well-being, as they relate to age and gender among adolescents with cancer. A cross-sectional design was guided by the conceptual framework, Adolescent Psychosocial Adaptation to the Cancer Experience. A total of 78 adolescents with a diagnosis of cancer were enrolled from 2 pediatric oncology clinics. Middle adolescents (15-17 years of age) reported higher religious well-being than late adolescents (18-20 years of age). Middle-adolescent boys were more hopeful than were early adolescent boys (13- 14 years of age). Also, girls were more hopeful and reported higher spiritual well-being than age the boys. Developmental phase and/or gender may influence adolescents' levels of hope, spiritual well-being, religious well-being, and existential well-being as they cope during the cancer experience. The nurse should consider developmental phase and gender when planning interventions to foster hope and spiritual well-being in adolescents' adaptations to the cancer experience.]
Hinds, P. S. and Martin, J. [St. Jude Children's Research Hospital, Memphis, TN]. "Hopefulness and the self-sustaining process in adolescents with cancer." Nursing Research 37, no. 6 (Nov-Dec 1988): 336-340. [(Abstract:) The purpose of this study was to explore, using grounded theory, the process through which adolescents with cancer move to achieve hopefulness. The sample, 58 adolescent oncology patients, had varying diagnoses and were in different stages of treatment. Data were collected through interviews, observations, and review of health care records. A subset of 11 adolescents was interviewed to validate study findings. Four sequential concepts (cognitive discomfort, distraction, cognitive comfort, and personal competence) emerged to represent the process adolescents experience to achieve hopefulness. The overall organizing construct, induced from the four core concepts, was labeled self-sustaining and defined as a natural progression adolescents who are experiencing serious health threats move through to comfort themselves and to achieve competence in resolving health threats. Results indicated adolescents are able to initiate effective and preferred strategies to achieve hopefulness and competence in resolving health threats.]
Hinds, P. S., Quargnenti, A., Fairclough, D., Bush, A. J., Betcher, D., Rissmiller, G., Pratt, C. B. and Gilchrist, G. S. [St. Jude Children's Research Hospital, Division of Patient Care Services, Memphis, TN]. "Hopefulness and its characteristics in adolescents with cancer." Western Journal of Nursing Research 21, no. 5 (Oct 1999): 600-616; with discussion on pp. 617-620. [(Abstract:) Hopefulness in adolescents with cancer serves critical functions related to the adolescents' sense of well-being and commitment to treatment. Given these critical functions, it is important to determine the essential characteristics of hopefulness, which include the degree and dynamism of hopefulness and the nature and attributes of hoped-for objects. The purposes of this two-site study were to describe the degree and dynamism of hopefulness at four time points during the first 6 months of adolescents' treatment for newly diagnosed cancer, to identify and describe the adolescents' hoped-for objects, and to evaluate potential relationships between the characteristics of hopefulness and patient gender, age, diagnosis, and time point in treatment. Seventy-eight adolescents completed the Hopefulness Scale for Adolescents, the Hopelessness Scale, and the Hopefulness Interview Question at each time point. Hopefulness scores were higher and hopelessness scores substantially lower than reported in other tested samples. Adolescents identified a total of 57 different hopes. Differences by age, gender, and diagnosis were found.]
Parry, C. and Chesler, M. A. [University of Colorado Health Sciences Center, Denver, CO]. "Thematic evidence of psychosocial thriving in childhood cancer survivors." Qualitative Health Research 15, no. 8 (Oct 2005): 1055-1073. [(Abstract:) Advances in medical treatment for childhood cancer have resulted in dramatically increased survival rates and a growing population of long-term survivors. Until recently, researchers reported primarily negative psychosocial sequelae of childhood cancer. Emergent conceptual frameworks propose that the assumption of pathology or long-term deficits in functioning might obscure an understanding of the full range of outcomes. Using qualitative interview data (N = 50), the authors explore how cancer can lead to positive psychosocial outcomes, including thriving. The findings suggest that processes of coping, meaning making, and psychospiritual growth are intimately related to long-term psychosocial well-being. The results suggest that in the aftermath of a trauma such as childhood cancer, many outcomes are possible, including thriving.]
Ritchie, M. A. [College of Nursing, Villanova University, Villanova, PA]"Self-esteem and hopefulness in adolescents with cancer." Journal of Pediatric Nursing 16, no. 1 (Feb 2001): 35-42. [(Abstract:) Increased survivorship in childhood cancer has raised questions about adolescents' psychosocial functioning during the treatment experience and long-term adaptation as cancer survivors. This descriptive correlation study examines the relationships among the stages of adolescence, gender, self-esteem, and hopefulness in a sample of 45 adolescents with cancer. The perceived level of self-esteem was measured by using the Coopersmith Self-Esteem Inventory; the amount of hopefulness was measured by using the Hopefulness Scale for Adolescents. Mean scores for self-esteem and hopefulness were comparable to normative data reported for healthy adolescents on each scale. Perceived level of self-esteem and hopefulness did not significantly differ between boys and girls overall; early, middle, and late adolescents; or between boys and girls within each stage of adolescence. A stepwise multiple regression analysis showed self-esteem and the early stage of adolescence accounted for 27.3% (R2 = .306) of the variance in hopefulness scores. Self-esteem was the most significant predictor (F = 12.456, p = .001), explaining 20.7% of the variance (R2 = .225, p = .001). This study contributes to nursing the knowledge of the psychosocial response and the treatment experience in adolescents with cancer. These results can be used in future research to develop and test nursing actions that can influence a perceived sense of self-esteem and hopefulness and potentially allow for continued psychosocial development and effective coping among these adolescents during treatment and into survivorship.]
Weekes, D. P. and Kagan, S. H. [Department of Family Health Care Nursing, School of Nursing, University of California, San Francisco] "Adolescents completing cancer therapy: meaning, perception, and coping." Oncology Nursing Forum 21, no. 4 (May 1994): 663-670. [(Abstract:) PURPOSE/OBJECTIVES: To explore and describe adolescents' experiences and associated changes in coping strategies during the time period from three to six months before cancer therapy completion to six months after completion. DESIGN: Exploratory, descriptive, longitudinal, qualitative design using grounded theory techniques. SETTING: Pediatric oncology outpatient clinics in the San Francisco Bay area and British Columbia. SAMPLE: 13 adolescents undergoing cancer therapy. METHODS: Semistructured interview conducted at four points in time (three to six months prior to completion of chemotherapy, at time of completion, three months after completion, and six months after completion). Subjects' responses were tape-recorded, transcribed verbatim, and analyzed using constant comparative techniques. FINDINGS: Themes emerged from the data in three categories: meaning and perception of the experience of completing cancer therapy (task accomplishment, movement toward a normal life); coping strategies before completion of therapy (positive thinking, not thinking about treatments, "busy-ness," reinterpretation, and "philosophical stance"); and coping strategies after completion of therapy (negotiation, cognitive reliving, selective forgetting). CONCLUSIONS: Completion of cancer therapy is an event that is uniquely perceived by adolescents, and they employ different coping strategies before and after completion. IMPLICATIONS FOR NURSING PRACTICE: Knowledge of adolescents' experiences of completing chemotherapy will assist nurses in offering support to the patient as well as to the parents who must support their child. Further longitudinal studies with larger samples are needed, as are studies comparing and contrasting the views of the adolescents and the parents.]
Woodgate, R. L. and Degner, L. F. [Faculty of Nursing, Helen Glass Centre for Nursing, University of Manitoba, Winnipeg, Canada].
"A substantive theory of Keeping the Spirit Alive: the Spirit Within children with cancer and their families." Journal of Pediatric Oncology Nursing 20, no. 3 (May-Jun 2003): 103-119. [(Abstract:) Despite increasing survivorship, childhood cancer is nonetheless still a very traumatic phenomenon. Children and families must confront many new stressors and challenges. Understanding what families experience is essential if pediatric oncology nurses hope to provide sensitive and comprehensive care. To help discover meaningful descriptions and interpretations of families' experiences with childhood cancer, process-oriented qualitative research needs to be undertaken. A longitudinal qualitative study guided by the philosophy of interpretive interactionism was conducted to arrive at an understanding of childhood cancer from the children's and families' perspectives. A theoretical purposive sample of 39 families residing in western Canada participated. Children (4(1/2)-to-18 years of age) with a variety of cancer diagnoses and their families (parents and siblings) participated. Data collection methods included formal and informal interviewing and participant observation. Data were analyzed by the constant comparative method of grounded theory and analysis of illness narratives. Although the original intent of this study was to focus on the children's cancer symptoms, the children and families could not easily separate their cancer symptom experiences from the whole cancer experience and all its associated "rough spots." They first needed to talk about the overall cancer experience, which led to the development of the study's first substantive theory--Keeping the Spirit Alive: The Spirit Within. This substantive theory provided an understanding of how children and families used the process of keeping the spirit alive in response to them having to experience the phenomenon of the cancer: "getting through all the rough spots." Description of this theory is the focus of this article. Ways that nurses can assist children and families in maintaining a sense of spirit are presented.]
II. Other articles regarding spirituality and survivors of childhood cancer that were published after our featured article went to press:
Jones, B. L., Volker, D. L., Vinajeras, Y., Butros, L., Fitchpatrick, C. and Rossetto, K. [University of Texas at Austin School of Social Work and School of Nursing, Austin TX; Department of Pediatric Oncology, University of New Mexico, Albuquerque, NM; Dell Children's Medical Center of Central Texas, Austin, TX; and Communications Department, Boston College, Boston, MA]. "The meaning of surviving cancer for Latino adolescents and emerging young adults." Cancer Nursing 33, no. 1 (Jan-Feb 2010): 74-81. [The researchers interviewed nine Latino adolescents and young adults. "The results of this pilot study highlight the importance of family, community, communication, and faith for Latino adolescent cancer survivors. The 7 original themes that emerged for this population were gratitude, humor/positive attitude, empathy for younger children with cancer, God/faith, cancer happens for a reason/cancer changed my life, familial support, and staff relationships." (p. 79) "Faith was an important part of coping for many of the young people interviewed. For some, this faith was a return to an earlier belief system…. For others, God had been an integral part of their lives, and that connection grew in this crisis…. For others, their families' beliefs helped them as well…. …A number of participants stated that cancer affected their faith…." (p. 77)]
Michel, G., Taylor, N., Absolom, K. and Eiser, C. [Department of Psychology and University of Sheffield Medical School, Sheffield; and St. James's Institute of Oncology, Leeds, UK]. "Benefit finding in survivors of childhood cancer and their parents: further empirical support for the Benefit Finding Scale for Children." Child: Care, Health & Development 36, no. 1 (January 2010): 123-129. [While this article mentions spirituality explicitly only in passing, the subject of benefit-finding is well connected to the spirituality & health literature. (Abstract:) Background: Diagnosis of a life-threatening condition has been linked to post-traumatic stress. However, only recently has it been acknowledged that positive outcomes including post-traumatic growth or benefit finding may also occur. The aim of our study was to extend previous work describing benefit finding among survivors of childhood cancer, by determining the contribution of demographic and medical variables and associations between child benefit finding and parent post-traumatic growth. Methods: Survivors of any child cancer (leukaemia, central nervous system or solid tumour; age 12-15 years; completed treatment >2 years) were recruited from routine follow-up clinics and asked to complete questionnaires [Benefit Finding Scale for Children (BFSC), quality of life (QOL), post-traumatic stress (PTS), illness perception and optimism]. Parents completed parallel measures to describe their own post-traumatic growth (PTG), QOL, PTS and illness perception. Results: Forty-eight survivors and parents completed questionnaires (response rate: 81%). The BFSC showed good internal reliability (alpha = 0.91). Diagnosis of leukaemia, greater optimism and reports that the illness still affects their life today were associated with higher scores on the BFSC among survivors themselves. For parents, perceptions of how much the illness still affects them emotionally was associated with PTG. There was no association between children's benefit finding and parents' PTG. Conclusions: The BFSC is a useful and reliable instrument to assess positive outcomes after cancer in children. The extent to which survivors are optimistic and perceive on-going effects of the illness on their daily lives is significantly associated with the ability to find benefit after end of treatment.]
Servitzoglou, M., Papadatou, D., Tsiantis, I. and Vasilatou-Kosmidis, H. [Great Ormond Street Hospital for Children, London, UK]. "Quality of life of adolescent and young adult survivors of childhood cancer." Journal of Pediatric Nursing 24, no. 5 (Oct 2009): 415-422. [Among the findings of his study of quality of life of Greek survivors of childhood cancer are these comments on Spiritual Functioning: "Survivors reported that, following the experience of disease, certain aspects of their life, such as physical health, self-confidence, or interest for other people, had improved. In their open answers, they particularly mentioned their 'sympathy for sick children.' There were significant differences between groups in how they defined and rated priorities in life. Health was considered as the highest priority among survivors, whereas family was the highest priority for controls." (p. 419)]
[ADDED 3/22/10]: Shepherd, E. J. W. and Woodgate, R. L. "Cancer survivorship in children and young adults: a concept analysis." Journal of Pediatric Oncology Nursing 27, no. 2 (March-April 2010): 109-118. [The article contains a handful of references to spirituality. See pp. 114-115. (Abstract:) Survivorship has been described in a variety of ways. Understanding how survivorship is applied in the context of childhood cancer survivors is important to the practice of pediatric nursing because it will offer nurses new possibilities for providing guidance, support, and assistance in enhancing outcomes for childhood cancer survivors and their families. Accordingly, the purpose of this article is to provide a conceptual framework that will assist nurses in their efforts to attain the common goal of successful survivorship in childhood cancer survivors. The method of concept analysis developed by Walker and Avant is used. The result is a definition of survivorship that is relevant and useful for research and clinical practice in pediatric oncology.
Zebrack, B. [University of Michigan School of Social Work, Ann Arbor, MI]. "Developing a new instrument to assess the impact of cancer in young adult survivors of childhood cancer." Journal of Cancer Survivorship 3, no. 3 (Sep 2009): 174-180. [This article presents initial psychometric testing of an Impact of Cancer survey with 64 young adults aged 18-39 years who had been treated for a pediatric malignancy. Among the instrument's 82 items is: "Having had cancer makes me think about or question my religious faith, faith in God or a higher power." Other items include "Having had cancer makes me think about or question my religious faith, faith in God or a higher power," "I wonder why I got cancer," "I wonder why I survived and others do not," "I am afraid to die," and "Good things have come out of having had cancer." (--see p. 178-179)]