Spirituality in young adults with end-stage cancer: a review of the literature and a call for research

Cancer is one of the top five leading causes of death for young adults ages 18 to 34 (1). Around 80% of young adults with cancer will survive, but 20% will not (2). Patients with cancer experience depressive symptoms at a significantly higher rate than healthy individuals, which may be compounded with the additional threat of imminent death (3,4). As patients attempt to cope with a diagnosis of a life-threatening illness, it is common to encounter thoughts, questions, and fears related to death (5). Some questions posed by patients include: “When will I die?”, “What does death feel like?”, and “Does my life have meaning?” (5). One way that has been shown to reduce distress in patients with life-limiting illness is deriving meaning and purpose from life (6). Spirituality is an avenue through which meaning and purpose can be attributed through a higher power or inter/intrapersonal connections (7). Research in palliative care settings suggest that while not all people are religious, everyone is spiritual, particularly those nearing the end of life (5). Palliative care physicians position that to neglect spirituality is to neglect an essential component of patient care (8). This assertion has sparked growing interest in the way spirituality can help patients adjust to the reality of death (9).

Studies in palliative care settings find that spiritual wellness can aid in psychological, social, and physical healing (10-12). While adults with cancer express a desire for additional attention to spiritual wellness (8,13), little is known about whether young adults with cancer have these same requests. Spiritual coping in young adulthood, especially young adults nearing the end of life, has been underrepresented in the literature. The investigative nature of this research may be aided by developmental theory, which can be a helpful framework when examining developmental variations. Understanding spiritual development in healthy young adulthood will yield insights into future research and intervention of young adults with end-stage cancer.

Spiritual development theory

To begin, young adulthood represents a time of identity exploration, deepening of relationships, and experimentation with what the world has to offer (14). There may exist a tension within families and in a young adult’s sense of identity formation as they struggle to deal with issues of dependence and independence (15). For those dealing with cancer, the element of uncertainty and role confusion is heightened (16). In addition to these experiences, young adults are moving through spiritual development milestones.

The topic of spiritual development has been a difficult construct to study (17). Fowler’s stage of faith development was one of the first empirical investigations into this topic (18). Before presenting these stages, a definition of terms is in order. Spiritual development represents the way that people move to a place of self-transcendence, meaning that they become connected to something bigger than themselves (17). Religion refers to the way people observe the beliefs and rituals of a religious group (19). Religion can be considered as one part of spirituality, but at its foundation, spirituality is far more encompassing (20). Fowler’s use of the word faith does not refer to following a set of beliefs, but to how all humans from different backgrounds construct meaning to the self and the world (18,21).

Beginning with adolescence, according to Fowler’s faith development theory (18,22), the time of adolescence signifies synthetic-conventional faith. Fowler (18) asserted that adolescents are adamant about establishing their identity, beliefs, and values. Even though adolescents have developed the ability to think logically and abstractly, they tend to find difficulty in relating to those that live according to different values, since they tend to consider their own beliefs to be universal truths (23,24).

After adolescence, however, faith development is dependent on one’s ability to move beyond his or her own cultural assumptions (23). Should people progress, as not all do, they may experience various stages of faith development: the individual-reflective stage, characterized by an ability to think critically about one’s previously held values and how they may or may not inform one’s current individual beliefs; the conjunctive stage, marked by the capacity to acknowledge the multiplicity of belief systems and an understanding that a paradox exists in these multiple truths; or the universalizing stage, an exceptional stage where one is committed to the inclusiveness of all beings (18,22).

Faith development theory asserts that spirituality is indeed a process of development and that spiritual development beyond adolescence is not absolute (23,25). Thus, the question arises of whether young adults with terminal cancer would seek spiritual exploration. Research suggests that this may be the case, since spirituality confers many benefits even for healthy young adults (26-29). The experiences of young adult cancer survivors, while not facing the reality of death in the immediate moment, may help to gain insights into the spiritual development of those with end-stage cancer.

The effects of cancer on psychosocial and spiritual functioning in young adult cancer survivors

Research shows that the diagnosis of cancer in young adulthood can arrest normal development (30). Young adults with cancer face a relinquishing of independence in adopting a sick role, fewer platonic and romantic relationships with peers, isolation, and a delay in education (16). They also report less personal, role, and cognitive growth, and deficits in social functioning (30). The detriments to psychosocial and spiritual functioning are well documented, but other studies have found positive changes (31).

One study sought to identify changes in the spiritual perspectives of young adults undergoing blood and bone marrow transplants (32). Through interviews with 12 patients, they found themes centered around questions such as, “why me” and “what will happen to me” prior to their transplant procedure. One year after the transplant, the six remaining participants indicated a shift in their perspective. The interviews suggested themes of life having a purpose, having a renewed strength in their faith, and believing that they were chosen to experience this for a reason. However, researchers did not ask participants what they believed contributed to these changes in spiritual perspectives. Therefore, the precipitants of these changes cannot be determined. They may be due to increased spiritual support or knowing they had a better prognosis of recovery. Research finds that young adults with cancer begin by having deficits in well-being compared to health young adults, but report an enhanced state of well-being as the time since diagnosis increases (33). Since those with end-stage cancer will not have the chance to experience a life post-illness, it is unknown whether they too report an enhanced state of well-being.

A review of nine studies examining spirituality and religion in adolescents and young adults with cancer does not help to fill this gap (34). Even though spirituality was found to be important for adolescents with cancer, there appeared to be conflicting findings about whether spirituality differed with age, gender, and length of time since diagnosis, with some research noting that there are differences (35,36) and other research finding no differences (37). Conclusions from this review are diminutive. Among the nine studies reviewed, none sampled young adults above the age of 22 and the mean age of participants in all studies was below 18. Considering that children under 18 are still under the guidance of their parents, it would be difficult to compare these findings to those of young adults, many of whom are in a more mature stage of cognitive development and may lead more independent lives. A deeper understanding of the meaning of spirituality in the context of their illness and lived experience was only reviewed in one case study using diary data (38). Finally, previous samples are limited to a Christian perspective, leaving questions about the importance of spirituality for people of other religious or non-religious traditions, unanswered.

Studies state that adverse circumstances can initiate an awareness of spirituality (23,39). Fowler himself stated that unexpected life events and adversity can initiate the development of faith (18). Longitudinal research supports this claim by finding that negative life events at an early age promote greater spiritual development (40). Young adults with terminal cancer have a greater likelihood of developing depression (4) and are less likely to use mental health services compared to their older and younger counterparts with cancer (41). These findings suggest that a diagnosis of cancer could initiate spiritual development in young adults. These studies also indicate that while spirituality could serve as a protective factor, the increased likelihood of depressive symptoms and lack of adequate support could inhibit their psychosocial spiritual well-being.

The need for further research

Small, homogeneous samples have limited the extent to which conclusions can be drawn about spiritual development in young adults with life-threatening cancer. Yet, this information could have great influence in clinical practice, theory, and future interventions with this population. Palliative studies of adolescents and adults tend to exclude the experiences of young adults in their mid to late twenties (42). Knowledge of the spiritual landscape of young adults with cancer may impact the way physicians and nurses approach the dying process with young adults. Providing developmentally appropriate psychosocial spiritual care to young adults, instead of subsuming them under the classification of adolescents or adults, may help them to feel seen and heard (43). Additionally, few studies have researched spirituality in the context of spiritual development theory (23), especially in relation to the unique experiences of those facing an early death. Further research could provide preliminary evidence for how the various faith stages cope with adverse circumstances. Finally, identifying whether young adults experience spiritual/existential distress may spark interventions involving existential therapies, which have shown initial success in alleviating psychopathology and increasing self-efficacy in physically ill populations (44).

The developmental period of young adulthood is fraught with uncertainty and characterized by attempts to solidify their identity apart from parental figures and embark on their own journey through life (15). Young adults with cancer must resolve these conflicts while facing a shortened lifespan and unfortunately there is a paucity of research focusing on this issue. Thus, examining the spiritual experiences of young adults facing death from cancer would be a fruitful area of study.

Acknowledgements

None.

Footnote

Conflicts of Interest: The author has no conflicts of interest to declare.

References

1. Jemal A, Siegel R, Xu J, et al. Cancer statistics, 2010. CA Cancer J Clin 2010;60:277-300. [Crossref] [PubMed]
2. Bleyer A, O’Leary M, Barr R, et al. Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including SEER incidence and survival: 1975-2000. Bethesda, MD: National Cancer Institute, NIH 2006.
3. Edwards A, Pang N, Shiu V, et al. The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a meta-study of qualitative research. Palliat Med 2010;24:753-70. [Crossref] [PubMed]
4. van’t Spijker A, Trijsburg RW, Duivenvoorden HJ. Psychological sequelae of cancer diagnosis: A meta-analytical review of 58 studies after 1980. Psychosom Med 1997;59:280-93. [Crossref] [PubMed]
5. Sulmasy DP. Spiritual issues in the care of dying patients: “…It’s okay between me and God JAMA 2006;296:1385-92. [Crossref] [PubMed]
6. Joseph S, Linley PA. Positive adjustment to threatening events: An organismic valuing theory of growth through adversity. Rev Gen Psychol 2005;9:262-80. [Crossref]
7. Dalmida SG, Holstad MM, Dilorio C, et al. The meaning and use of spirituality among African American women living with HIV/AIDS. West J Nurs Res 2012;34:736-65. [Crossref] [PubMed]
8. Puchalski CM. Spirituality and the care of patients at the end-of-life: an essential component of care. Omega (Westport) 2007-2008;56:33-46. [Crossref] [PubMed]
9. Gomez-Castillo BJ, Hirsch R, Groninger H, et al. Increasing the number of outpatients receiving spiritual assessment: A pain and palliative care service quality improvement project. J Pain Symptom Manage 2015;50:724-9. [Crossref] [PubMed]
10. Jim HSL, Pustejovsky JE, Park CL, et al. Religion, spirituality, and physical health in cancer patients: A meta-analysis. Cancer 2015;121:3760-8. [Crossref] [PubMed]
11. Mako C, Galek K, Poppito SR. Spiritual pain among patients with advanced cancer in palliative care. J Palliat Med 2006;9:1106-13. [Crossref] [PubMed]
12. Park CL, Edmonson D, Hale-Smith A, et al. Religiousness/spirituality and health behaviors in younger adult cancer survivors: Does faith promote a healthier lifestyle? J Behav Med 2009;32:582-591. [Crossref] [PubMed]
13. Ehman JW, Ott BB, Short TH, et al. Do patients want their physicians to inquire about their spiritual or religious beliefs in they become ill? Arch Intern Med 1999;159:1803-6. [Crossref] [PubMed]
14. Erikson EH. Identity: Youth and crisis. New York: Norton, 1968.
15. Arnett JJ. Emerging adulthood: A theory of development from the late teens through the twenties. Am Psychol 2000;55:469-80. [Crossref] [PubMed]
16. Suris JC, Michaud PA, Viner R. The adolescent with a chronic condition. Part I: Developmental issues. Arch Dis Child 2004;89:938-42. [Crossref] [PubMed]
17. Benson PL, Roehlkepartain EC, Rude SP. Spiritual development in childhood and adolescence: Toward a field of inquiry. App Dev Sci 2003;7:205-13. [Crossref]
18. Fowler JW. Stages of faith. New York: Harper Collins, 1981.
19. Mattis JS, Jagers RJ. A relational framework for the study of religiosity and spirituality in the lives of African Americans. J Community Psychol 2001;29:519-39. [Crossref]
20. Hodge DR. The intrinsic spirituality scale: A new six-item instrument for assessing the salience of spirituality as a motivational construct. J Soc Serv Res 2003;30:41-61. [Crossref]
21. Parker S. Measuring faith development. J Psychol Theol 2006;34:337-48.
22. Fowler JW. Faith development and pastoral care. Philadelphia: Fortress Press, 1987.
23. Cartwright KB. Cognitive developmental theory and spiritual development. J Adult Dev 2001;8:213-20. [Crossref]
24. Fowler JW, Dell ML. Stages of faith from infancy through adolescence: Reflections on three decades of faith development theory. The handbook of spiritual development in childhood and adolescence 2006:34-45.
25. Vachon M, Fillion L, Achille M. A conceptual analysis of spirituality at the end of life. J Palliat Med 2009;12:53-9. [Crossref] [PubMed]
26. Cotton S, Larkin E, Hoopes A, et al. The impact of adolescent spirituality on depressive symptoms and health risk behaviors. J Adolesc Health 2005;36:529. [Crossref] [PubMed]
27. Cotton S, Zebracki K, Rosenthal SL, et al. Religion/spirituality and adolescent health outcomes: A review. J Adolesc Health 2006;38:472-80. [Crossref] [PubMed]
28. Kirk CM, Lewis RK. The impact of religious behaviours on the health and well-being of emerging adults. Ment Health Relig Cult 2013;16:1030-43. [Crossref]
29. Rew L, Wong YJ. A systematic review of associations among religiosity/spirituality and adolescent health attitudes and behaviors. J Adolesc Health 2006;38:433-42. [Crossref] [PubMed]
30. Monteiro S, Torres A, Morgadinho R, et al. Psychosocial outcomes in young adults with cancer: emotional distress, quality of life and personal growth. Arch Psychiatr Nurs 2013;27:299-305. [Crossref] [PubMed]
31. Parry C, Chesler MA. Thematic evidence of psychosocial thriving in childhood cancer survivors. Qual Health Res 2005;15:1055-73. [Crossref] [PubMed]
32. Ragsdale JR, Hegner MA, Mueller M, et al. Identifying religious and/or spiritual perspectives of adolescents and young adults receiving blood and marrow transplants: a prospective qualitative study. Biol Blood Marrow Transplant 2014;20:1242-7. [Crossref] [PubMed]
33. Jörngården A, Mattson E, von Essen L. Health-related quality of life, anxiety and depression among adolescents and young adults with cancer: A prospective longitudinal study. Eur J Cancer 2007;43:1952-8. [Crossref] [PubMed]
34. McNeil SB. Spirituality in adolescents and young adults with cancer: A review of the literature. J Pediatr Oncol Nurs 2016;33:55-63. [Crossref] [PubMed]
35. Hendricks-Ferguson V. Relationships of age and gender to hope and spiritual well-being among adolescents with cancer. J Pediatr Oncol Nurs 2006;23:189-99. [Crossref] [PubMed]
36. Hendricks-Ferguson V. Hope and spiritual well-being in adolescents with cancer. West J Nurs Res 2008;30:385-401. [Crossref] [PubMed]
37. Tebbi CK, Mallon JC, Richards ME, et al. Religiosity and locus of control of adolescent cancer patients. Psychol Rep 1987;61:683-96. [Crossref] [PubMed]
38. Flavelle SC. Experiences of an adolescent living with and dying of cancer. Arch Pediatr Adolesc Med 2011;165:28-32. [Crossref] [PubMed]
39. Hamilton DM, Jackson MH. Spiritual development: Paths and processes. J Instructional Psych 1998;25:262.
40. Wink P, Dillon M. Spiritual development across the adult life course: Findings from a longitudinal study. J Adult Dev 2002;9:79-94. [Crossref]
41. Zebrack BJ, Block R, Hayes-Lattin B, et al. Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer 2013;119:201-14. [Crossref] [PubMed]
42. Taylor EJ, Petersen C, Oyedele O, et al. Spirituality and spiritual care of adolescents and young adults with cancer. Semin Oncol Nurs 2015;31:227-41. [Crossref] [PubMed]
43. Wiener L, Weaver MS, Bell CJ, et al. Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer. Clin Oncol Adolesc Young Adults 2015;5:1-18. [PubMed]
44. Vos J, Craig M, Cooper M. Existential therapies: A meta-analysis of their effects on psychological outcomes. J Consult Clin Psychol 2015;83:115-28. [Crossref] [PubMed]