“I’m not a spiritual person.” How hope might facilitate conversations about spirituality among teens and young adults with cancer

Abstract

Context

Supporting patients’ spiritual needs is central to palliative care. Adolescents and Young Adults (AYAs) may be developing their spiritual identities; it is unclear how to navigate conversations concerning their spiritual needs.

Objectives

To (1) describe spiritual narratives among AYAs based on their self-identification as religious, spiritual, both, or neither; and, (2) identify language to support AYA spiritual needs in keeping with their self-identities.

Methods

In this mixed-methods, prospective, longitudinal cohort study, AYAs (14–25 years-old) with newly diagnosed cancer self-reported their “religiousness” and “spirituality.” One-on-one, semi-structured interviews were conducted at 3 time-points (within 60 days of diagnosis, 6–12, and 12–18 months later), and included queries about spirituality, God/prayer, meaning from illness, and evolving self-identity. Post-hoc directed content analysis informed a framework for approaching religious/spiritual discussions.

Results

Seventeen AYAs (mean age 17.1 years, SD=2.7, 47% male) participated in 44 interviews. Of n=16 with concurrent survey-responses, 5 (31%) self-identified as both “religious and spiritual,” 5 (31%) as “spiritual, not religious,” 1 (6%) as “religious, not spiritual,” and 5 (31%) as neither. Those who endorsed religiousness tended to cite faith as a source of strength, whereas many who declined this self-identity explicitly questioned their pre-existing beliefs. Regardless of self-identified “religiousness” or “spirituality,” most participants endorsed quests for meaning, purpose, and/or legacy, and all included constructs of hope in their narratives.

Conclusions

AYA self-identities evolve during the illness experience. When words like “religion” and “spirituality” do not fit, explicitly exploring hopes, worries, meaning, and changing life perspectives may be a promising alternative.

Introduction

Exploring and supporting patient and family religious and spiritual needs is a central tenet of palliative care.¹ Indeed, the associations between religious/spiritual support and improved patient well-being are well established.^2–4 Unfortunately, evidence-based guidelines for how to provide religious/spiritual support have been limited, in part because the definition, operationalization, and measurement of religiousness and spirituality have been inconsistent.^2,4–7 Recent recommendations suggest, at a minimum, universal assessments of patient-reported spirituality.⁸

This is particularly important for Adolescents and Young Adults (AYAs) who are already at risk for inferior physical and psychosocial outcomes due to their concurrent developmental struggles with identity-development, autonomy, and existential meaning.⁹ Very few studies have explored AYA religious/spiritual perspectives, and those that have predominantly included patients who already identify as religious.^10–12 To our knowledge, no studies have explored the perspectives of AYAs who decline to label themselves as “religious” or “spiritual,” and no formal recommendations exist regarding how to meet their (perhaps unrecognized) spiritual needs.

We conducted a post-hoc analysis of longitudinal interview data from a cohort of AYAs with cancer in a geographical area where religiousness and spirituality are not predominant in day-to-day culture.¹³ Our objectives were to: (1) describe spiritual narratives among AYAs based on their self-identification as religious, spiritual, both, or neither; and, (2) identify language to support AYA spiritual needs in keeping with their self-identities.

Methods

Participants

The “Resilience in Adolescents and Young Adults” study was a multicenter, prospective, longitudinal mixed-methods study investigating patient-reported resilience and associated outcomes among AYAs with cancer.^14–18 This analysis includes data from the subset of n=17 participants treated at a single site (Seattle Children’s Hospital) who participated in semi-structured, 1:1 interviews at the time of their cancer-diagnosis, and 6–12 and 12–18 months later. Eligible participants were 14–25 years of age at the time they were diagnosed with a malignancy requiring immediate multi-agent systemic chemotherapy. Patients with central nervous system (CNS) tumors were excluded because their anticipated treatment trajectories (surgery, radiation, and later chemotherapy) were distinct from other cancer-types. All consecutive eligible participants diagnosed between December/2012 and July/2013 were approached; written informed consent (ages 18 and older) or assent with parental consent (ages 14–17) was obtained in accordance with the local Institutional Review Board.

Quantitative data

All participants completed comprehensive surveys at the time of enrollment. These included questions about demographics (age, sex, race, religion), plus two items to assess patient-reported religiousness and spirituality: “How religious do you consider yourself to be?” and, “How spiritual do you consider yourself to be?” To integrate AYAs’ interpretation of these terms, “religious” and “spirituality” were not defined. Response options were: Very/Somewhat/A little/Not at all. We categorized respondents who endorsed “somewhat” or “very” as self-reported religious or spiritual (and not religious or not spiritual, otherwise).

Qualitative data

Qualitative interviews were conducted in person (without parents present) by a single trained investigator (A.R.R.) at the patient’s preferred location (private interview rooms adjacent to outpatient clinics or private hospital rooms during inpatient stays). Each interview lasted 30–90 minutes and included open-ended questions eliciting expectations, beliefs, and worries about cancer, plus participant-identified strengths and challenges.¹⁴ Probe questions included: (a) “Do you consider yourself a spiritual person?” (b) “How has this experience changed your relationship with God?” and, (c) “Why do you think this has happened to you?” If/When any patient specifically endorsed faith, God, or prayer, the interviewer asked, “What do you pray for?”

Data analyses

Transcripts were transcribed verbatim and de-identified. Three independent coders (K.S.B, T.T., and A.R.R.) were blinded to quantitative patient-reported “religiousness” and “spirituality.” For context, coders’ backgrounds included training in health services research (K.S.B., A.R.R.), bioethics (K.S.B, T.T., A.R.R), general pediatrics (T.T., A.R.R.), and pediatric oncology (A.R.R.). Furthermore, interviewer/coder A.R.R. shared a clinical relationship with all patients as one of their attending oncologists.

Qualitative analyses included three steps. First, we used directed content analysis to identify all instances of religiousness or spirituality. Both terms were defined a priori based on published suggestions: Religious=endorsing an organized system of beliefs, practices, and symbols designed to facilitate closeness to the transcendent or the Divine¹⁹; Spirituality=endorsing a search for meaning and purpose (with or without reference to the Divine).²⁰

Second, during the initial round of coding, it became clear that many of the “religious” and “spiritual” statements were intertwined. Although social science research has deliberately separated these two constructs in recognition that religious institutions may be separate from both modern social life and individual transcendent experiences, most Americans identify as both spiritual and religious.^21,22 This makes it difficult to separate the labels. Furthermore, healthy adolescents rarely distinguish between religiosity and spirituality, and “religious” AYAs place more emphasis on the spiritual aspects of their faith than traditional practices.^23,24 For these reasons, we acknowledged that many comments could have been dual-coded and opted to report frequency data under a merged “religious or spiritual” theme in an additional round of coding (Table 1).

Table 1.

Main coding schema, construct definition, and sample quotes

Theme	A priori definition	Sample quotes
Religiousness	Endorsing an organized system of beliefs, practices, and symbols designed to facilitate closeness to the transcendent or the Divine19	“I pray for my loved ones. Everyone, like, everyone that I love. Which is a lot of people but I—I just pray that they’re happy.” (1001) “Well, my family’s always been strong Christians, so – for many, many generations – and understanding – seeing that sort of faith over so many people when you’re young – I guess you don’t really understand at all. By then being put in situations where you ask for a prayer, with very little understanding that you have to have faith, if you want to believe it. It’s more real for me” (1003) “I prayed for my big sister because I want—she’s also had a hard time in a different way, not being upset but kind of just not talking.” (1013)
Spirituality	Endorsing a search for meaning and purpose (with or without reference to the Divine)20	“This entire thing has just taught me that death is so real and that it’s not to be messed around with really. But at the same time it’s taught me that life is so worth it. I feel like the benefits I’m gonna’ get from going through all this stuff is completely gonna’ outweigh how much misery it’s brought me.” (1001) “I don’t know what I think. I think that—I think there might be a higher power, but I don’t like him if there is one……But it’s weird ‘cause if—‘cause there’s weird connections everywhere, you know? I dunno. It’s confusing” (1008) “Because I’m not ever gonna’ know why this happened. I mean maybe in years from now when I look back, but if I thought about it right now, like, why did this happen then I—I want to think, like, oh well I wanted time so I got time. And now I have time to make this cool blog and I have a reason to, you know create a nonprofit group and start a charity and, like, make my own jobs and do whatever I want.” (1014)
Hope	Endorsing a comforting, life-sustaining belief that a personal and positive future exists for oneself and others25	“Well, think of your family who loves you, think about the life you have ahead of you. You know, you—in—in my case, if they only have one leg too it’s like yeah, oh well, it’s a bummer. But, you know, honestly, prosthetic isn’t gonna ruin your life. You know, you still have friends, you still have family, you still have options.” (1004) “I get a second chance to live……I’m sure I’ll do plenty of the same things. You know, sometimes you’ll spend too much time in the library focusing on school, sometimes I’ll spend too much time focusing on friends. You know? But, you know, there’s—there’s all those little things you’d always said you’d get around to doing that I just—I’m—I’m going to do.” (1010)

Legend: After first round coding and due to overlap in participant content for codes of “religiousness” and “spirituality,” these terms were merged into a single code

Also during the initial round of coding, all three coders noted a high prevalence of “hope” in the text. Here, “hope” was defined as the endorsement of a comforting and/or life-sustaining belief that a personal and positive future exists for oneself or others.²⁵ Because this construct was related to our objective of identifying how AYAs describe their existential journeys during illness, the second round of content analysis integrated “hope” as an additional construct of interest (Table 1).

Third, after agreeing upon the above coding schema, we conducted a final round of coding to complete: (a) deductive analysis to quantify frequencies of “religious/spiritual” and hopeful narratives; (b) inductive analysis to examine what was expressed under each theme and if AYAs’ self-identities corresponded to spiritual narratives.^26,27 We anticipated that, regardless of self-identity, spiritual questioning would be prevalent.

At all stages of qualitative analysis, discrepancies between coders were cataloged and discussed until consensus was reached. Through an iterative process of triangulation, coded data were analyzed using thematic network analysis to identify the main themes and how they relate to each other.²⁷ Themes were discussed with the rest of the research team to further refine and synthesize concepts into organizing networks.

Quantitative and qualitative data were merged as follows. First, data were summarized descriptively. For quantitative data, summary statistics included the number and percentage of participants self-defining themselves as “religious” or “spiritual.” We chose to respect AYAs’ self-determinations, regardless of their corresponding qualitative narratives. For example, if a participant’s survey stated he was “not religious,” but his interview suggested a struggle with God, we still maintained his self-label. Pairwise correlations assessed associations between named religious denomination, self-reported “religiousness,” and “spirituality” (Stata 14.0 software system, College Station, Texas). For qualitative data, we determined the raw count and corresponding frequencies of coder-determined religious/spiritual, and hope-related comments. We collated all AYA-endorsements of prayer to summarize their content. Second, we sorted transcripts based on AYA self-reported “religiousness” and “spirituality” to identify emblematic examples of religious/spiritual, or hope-related comments when stratified by patient-reported identity as “religious not spiritual,” “spiritual not religious,” both or neither. Third, we used thematic data to inform a framework for approaching discussions of religious and spiritual perspectives with AYAs.

Results

Participant Characteristics

The recruitment, participation, and attrition of this study have been presented elsewhere.^14–18 Briefly, 17 of 18 participants invited to participate in interviews completed 44 interviews over 3 time-points, with >100 hours of transcript-data. Twelve completed all three interviews; attrition was mostly due to treatment complications and death. Their mean age was 17.1 (±2.7); 8 (47%) were male, the most common diagnoses were sarcoma, acute leukemia, and lymphoma (Table 2). The majority (82%) were non-Hispanic White.

Table 2.

Self-reported patient characteristics at study entry (n=17)

Patient Number	Age (years)	Sex	Race/Ethnicity	Diagnosis	Religion	Self-identified “Religious”*	Self-identified “Spiritual”*
1001	19	Male	Mixed	Ewing sarcoma	Christian	Yes	Yes
1002	17	Male	White	ALL	None	No	No
1003	17	Male	White	Osteosarcoma	Christian	Yes	Yes
1004	19	Male	Mixed	Osteosarcoma	None	No	Yes
1006	15	Male	White	Ewing sarcoma	Christian	Yes	No
1007	14	Female	White	Ewing sarcoma	Christian	Yes	Yes
1008	15	Female	White	Hodgkin Lymphoma	(missing)	No	No
1009	14	Male	White	AML	(missing)	No	No
1010	21	Female	White	AML	Christian	Yes	Yes
1011	14	Male	White	Lymphoblastic Lymphoma	(missing)	No	Yes
1012	17	Male	White	Synovial Sarcoma	(missing)	(missing)	(missing)
1013	17	Female	White	Osteosarcoma	Christian	No	Yes
1014	20	Female	White	ALL	Roman Catholic	No	Yes
1015	14	Female	White	ALL	Open-minded	No	No
1016	19	Female	White	ALL	Christian	No	No
1017	23	Female	Mixed	Hodgkin Lymphoma	None	No	Yes
1018	15	Female	White	Osteosarcoma	None	Yes	Yes
	Mean yrs (SD)	N (%)	N (%)	N (%)	N (%)	N (%)	N (%)
	17.1 (2.7)	Male: 8 (47) Female 9 (53)	Non-Hispanic White: 14 (82) Hispanic: 1 (6) Other: 2 (12)	Sarcoma: 8 (47) Acute Leukemia: 6 (36) Lymphoma: 3 (18)	Christian: 7 (54) None: 4 (31) Roman Catholic: 1 (8) Other: 1 (8)	Yes: 6 (38) No: 10 (62)	Yes: 10 (63) No: 6 (37)

Legend:

^*Categorization based on response to 4-point Likert scale where “very” or “somewhat” religious/spiritual was defined as being “religious” or “spiritual,” respectively. ALL: Acute Lymphoblastic Leukemia; AML: Acute Myelogenous Leukemia

Eight participants identified a religious denomination including one who labeled herself as “open-minded” (write-in label, Table 2). Six (38%) identified as “religious,” and 10 (63%) considered themselves to be spiritual. More specifically, 5 identified as both “religious and spiritual,” 5 as “spiritual, not religious,” 5 as neither, and only 1 as “religious, not spiritual.” Having a named religious denomination was moderately associated with self-reported spirituality (r=0.40, p=0.03), but not with self-reported religiousness (r=0.22, p=0.2). Self-reported religiousness and spirituality were only moderately correlated with each other (r=0.52, p=0.001).

Qualitative Content: Religion, Spirituality, and Prayer

Religious statements included themes of interconnecting with God, interconnecting with others and the church, and prayer. When mentioned, prayer and the church community were seen as sources of strength and social support. Spirituality statements tended to reflect existential questioning, fatalistic beliefs, and intangible healing powers (e.g., mind-body connections or the wellness imbued by supportive loved ones).

Seven participants reported a practice of prayer. When asked “what do you pray for,” answers consistently reflected concern for other loved ones. For example, one young man said, “I pray for my family a lot. I…I worry about them.” A young woman said, “I prayed for the first time in like, two years. I prayed for my mom. That she could stay strong for my sister.” Yet another young woman said, “When I was first diagnosed, I’d hurt a lot of people by being diagnosed. People were crying, people were sad. My dad, you know, the look on his face when he found out was heart-breaking. I pray for them.” In no case did a participant endorse prayer for him or herself, including for his or her survival or another positive cancer outcome.

Self-reported identities of religiousness and spirituality and corresponding narratives

Participants who self-identified as “religious” (either with or without concurrent “spirituality”) tended to be forthcoming about support and meaning drawn from their faith (Table 3). In contrast, some who explicitly denied being “religious” still spoke about God with negative connotations: “Sometimes I just look up and say, like, how much more are you gonna’ give me?” or, “…If he’s there, you know, he kinda really screwed my life over” (Table 3). Another participant stated, “I used to call myself a Christian or whatever. You know, I believed you have to do good in order to go to heaven. And, um, when I found out I had cancer, I was really mad because I don’t kill people, I don’t steal, I don’t do drugs, I don’t do any of that…I was really angry. Why would this happen to me?”

Table 3.

Sample quotes from participants based on self identification as “religious” and/or “spiritual”

Participant-identified characteristics (N=17)	Religious/Spiritual Quotes	Hope Quotes
Both Religious and Spiritual (n=5)	“I think everything happens for a reason, and I personally—I attend church regularly and all that, you know…I think—like, personally I think God actually, like, as crazy as it might sound, I think he did this for a reason. This is definitely for a reason. I think I’ve maybe figured that reason out, but there’s a long road to go. So I’m sure I’ll learn a lot more.” (1001)	“I have more to do in life. I know I’m gonna’ get through this. It’s gonna’ be a crazy story to tell. And I’m—I’m gonna’ get through it basically.” (1001)
	“HE has a will for me. HE’s gonna’ take care of me. Even—even though I have cancer, but that doesn’t mean anything” (1003)	“I admit that a few times, I was losing hope, just ready to give up at the end of each one, and I’d say that looking long term, it will get better. Or, it will end, and you will have – something will be better than your current situation – which is – cancer is the bottom.” (1003)
	“Well whenever things are rough I can just pray” (1010)	“I’m gonn’a be a survivor. So I don’t think I really worry about death or anything… I get a second chance to live.” (1010)
	“‘cause usually I think it’s, like, karma……I mean I can’t really think of something, like, where I did, like, really wrong for me to, like, get cancer.” (1018)	“My dad and I were talking about it and he was saying how if you can survive cancer I’m pretty sure you can do anything…And then I was like oh, well yeah I guess that’s true.” (1018)
Religious, but not Spiritual (n=1)	“But this is just—this is something that happens ‘cause your cells or something. So, I don’t think that this is karma or anything. I haven’t done anything extremely bad in my life that” (1006)	“I mean, there is a better side. I’ll probably live longer and I’ll get this cancer out of my body.” (1006)
Spiritual, but not Religious (n=5)	“I guess I wasn’t really scared, um, I dunno—I kinda—you’d think the opposite but— if you believe more in God you’d be less scared of death because you’re good so you’d go to heaven—I dunno. I—I believe a lot less in that now because, you know, he kinda—if he—if he’s there, you know, he kinda really screwed my life over.” (1011)	“When—when it’s over I think it’ll be just great….. But I’ll definitely enjoy everything more and appreciate everything more. Not take everything for granted like everybody else.” (1011)
	“I dunno, sometimes I just look up and say, like, how much more are you gonna’ give me?” (1013)	“Okay, I can do this. I’m prepared for next time I know that I’m gonna’ make it thought it.” (1013)
	“So, it’s not like there was anyone to blame or – I’m never gonna’ know why or whatever, so I just choose to rather think – well it’s because you know, I’m a stronger person like I could fight it, you know? I needed to learn from it or whatever, like I choose to see it that way because I don’t know how else to live with it.” (1014)	“But I never felt like I would never be happy again, I knew that it was just that chunk. Like I just have to get through this part and like, I’ll be ok.” (1014)
	“I believe in positive energy. Uhm – I feel that your mind’s connected to your body, and if throughout the whole thing, if you can stay as positive as you can, it keeps you – it keeps your spirits up, it keeps you strong throughout all of it.” (1017)	“And I was just like, this is not going to be the end all. Like, this isn’t it. And I was like, there is so much more to my life, I still have so much more to do” (1017)
Neither Religious nor Spiritual (n=5)	“I’ve never been a real spiritual person at all so it’s not like…this is God’s will he did this for a reason. I just feel it’s just—it just happens.” (1002)	“I’m more mature now, so hopefully that will stick.” (1002)
	“I don’t know. I don’t know what I think. I think that—I think there might be a higher power, but I don’t like him if there is one.” (1008)	“But I think I’ll tell people that my story is I had cancer, but I survived. And that’s a story for a lot of people” (1008)
	“I’m what you would call agnostic. And so I don’t believe that like, God himself gave this to me to overcome, but it might be something. Something may have said, ‘hey, get off your high horse’” (1015)	“I just think of people before me that have gotten over it. And thinking of them is like, well, they had it and they’re fine now. They’re going about their days like – like everyone else, and they’re good. So, thinking about them and how they’re good now gives me confidence too.” (1015)
	“I’m kind of religioned out” (1016)	“Looking forward to things [helps me]. When you’re coming in every single day…I feel like that was good.”

Other participants who denied being “religious” declined to identify or articulate specific beliefs (Table 3). For example, one young man said, “There’s not really too much to think about ‘cause when you die, you die. Whether there’s a new beginning or, you know, you turn into a spirit…whatever happens is whatever happens.”

The majority of participants endorsed being “spiritual” (with or without religiousness). These participants shared struggles with existential questions about why this had happened to them, how it had changed their worldviews, or what they could (or should) learn from their experiences. One participant who identified as “spiritual, not religious” said, “I’m never gonna’ know why [this happened] or whatever…I choose to see it that way because I don’t know how else to live with it” (Table 3).

The only group who did not consistently endorse existential questioning or a search for meaning was the group who identified as neither “religious” nor “spiritual.” Where some in this group still questioned faith (“there might be a higher power, but I don’t like him if there is one”), more common narratives were agnostic (Table 3). Participants in this group tended also to provide concrete answers to the probe about “why this has happened to you.” For example, they said things like, “it’s just bad luck,” or “it’s biology.”

Qualitative Content: Hope

Regardless of religious/spiritual self-identity, hope comments were consistent across all participants, and tended to reflect future directions and/or beliefs about future state-of-being (Table 3). These could be abstract (“I’m gonna be a survivor”), reflective of lessons learned (“…if you can survive cancer, I’m pretty sure you can do anything,”) as well as suggestive of a corresponding search for purpose (“There is so much more to my life, I still have so much more to do.”).

Coding Frequencies

Coders identified 164 religious/spiritual codes among 33 (75%) of 44 interviews, corresponding to an average of 5 per interview (when codes were present) or fewer than 4 per interview (among all 44 conducted interviews, including those where no codes were present). In contrast, hope codes were present in all 44 interviews, with a total of 555 total identified, corresponding to an average of approximately 13 per interview.

At each time-point, religious/spiritual comments were less common than hope comments (Figure 1). For example, at the first time-point (T1, time of enrollment and within 60 days of new cancer diagnosis), participants shared an average of 15 hope-oriented thoughts per interview, compared to 5 religious/spiritual thoughts. Similar patterns were seen at subsequent time-points, where participants reported an average of 11–12 hope-oriented thoughts compared to 2–4 religious/spiritual thoughts per interview. There were fewer total hope statements with each successive interview; however, later interviews were also shorter in duration than first interviews.^14–16

Figure 1.

Average (per interview) counts of Religious/Spiritual statements combined and hope statements with AYA participant at each of three time points (T1 = within 60 days of diagnosis of cancer, T2 = 6–12 months after T1, T3 = 12–18 months after T1).

Participants who identified as spiritual (with or without religiousness) more commonly shared hopeful statements during their interviews. For example, those who called themselves “religious and spiritual” included an average of 18 hope statements during the first interview. Those calling themselves “spiritual, but not religious” reported an average of 21 hope statements during the same interview. In contrast, those who declined being spiritual (”religious but not spiritual,” or “neither religious nor spiritual”) reported an average of 9 and 7 hope statements during the first interview, respectively.

Conceptual Framework for Navigating Discussions with AYAs

Taken together, AYAs did not consistently use words like “religious” and “spiritual” in their self-identifies. Most (but not all) who explicitly endorsed religious and/or spiritual beliefs seemed willing to engage in discussion and share their perspectives. Those identifying as spiritual (with or without corresponding “religiousness”) endorsed an ongoing search for meaning or purpose, although they sometimes struggled to articulate their needs and perspectives in the absence of a religious doctrine.

Those who declined an identity of “religious” or “spiritual” were either truly agnostic or wrestling with negative religious coping (e.g., they were angry with God or disenchanted with their faith). They often resisted discussion of these concepts altogether.

In contrast, all participants used some language of hope, often in the same context as spirituality. In other words, hope codes frequently captured AYAs’ perspectives about why cancer had happened, what they would learn from the experience, who they would become afterwards, and how it would help them navigate their current existential questioning (Figure 2).

Figure 2. Conceptual framework for navigating discussions of religion, spirituality, and hope with teens and young adults who do/do not immediately endorse Religious/Spiritual (R/S) beliefs.

Legend. Italicized phrases are sample questions to use in conversation. Note that this framework does not necessarily reflect a single discussion; rather, it may be used to navigate ongoing discussions spanning screening, spiritual history-taking, and assessments of religious/spiritual supportive needs.

Discussion

In this retrospective mixed-methods analysis, we aimed to identify common language and corresponding tools to help support the spiritual journeys of AYAs with serious illness like cancer. We found that self-identification as “religious” was less common than self-identification as “spiritual.” When AYAs endorsed prayer, the prayers tended to reflect concerns for others, rather than for the patients, themselves. Regardless of how AYAs identified with “religious” and “spiritual” terms, most described aspects of existential questioning. Furthermore, explicit comments about religion & spirituality using common definitions were rare, but all participants included constructs of hope in their narrative. For these reasons, “hope” may be a helpful tool for navigating discussion.

These findings represent important early suggestions for how healthcare staff may navigate discussions about religion and spirituality with AYAs, especially when AYAs do not endorse a particular religion or (perhaps transiently) reject their faith. Moreover, AYAs are at a critical developmental age where self-identity, relationships to larger communities, and existential opinions are in flux. Clinicians must be fluent in their dialogue and terminology, at once respecting an AYA’s developing autonomy and perspectives, while also remembering that spiritual needs are common, even when not explicitly articulated.

Whereas most American adults identify with a specific religious group, healthy American teens may not.^22,28 Regardless of identified religious denominations, both groups endorse personal spiritual perspectives. However, very few studies describing religious/spiritual perspectives have been conducted specifically among AYAs with serious illness.^4,6 Evidence from our and another study suggests spiritual considerations are common, and include questions of “why me?” and “what will happen to me?”¹⁰ Evidence also suggests AYAs are highly concerned about how their illness will affect others.²⁹ Indeed, all participant-endorsed prayers in our study were about loved ones. AYAs are unsure about their own evolving views and ideas, and may be vulnerable to fears, concerns and guilt during their own existential journey.⁹ While some with serious illness express wisdom beyond their years, others may display spiritual regression and develop negative coping strategies.⁹ Finally, hopeful patterns of thought have been associated with AYA spiritual well-being.^24,28 In our sample, those who already identified as “spiritual” (with or without religiousness) seemed to share hopeful thoughts more frequently than those who did not. It follows that directly querying a patient’s hope may be a universal avenue towards spiritual support.

Recognizing spiritual perspectives and associated existential questions is a well-established component of whole person palliative care.¹ Yet, even with evidence supporting the links between spiritual support and improved patient-centered outcomes, evidence-based guidelines regarding how to provide this support successfully is limited.² There is also lack of clarity regarding who is most appropriate to provide spiritual support, and when.^8,30 For example, two-thirds of parents of seriously ill children say they would be comfortable discussing their religious/spiritual beliefs with chaplains, compared to only one-third who say the same about discussing beliefs with medical staff.³⁰ In our experience, AYAs may not appreciate the value of chaplain support and even decline it, particularly when they are questioning their own religious/spiritual perspectives. In such cases, medical staff need basic tools to begin exploring patient spiritual needs while they continue to encourage chaplain involvement. Furthermore, over 70% of adults want to discuss these concepts with their physicians and nurses, and parents are more likely to want to share their beliefs with medical staff when their child is seriously ill.^30,31 Indeed, evidence suggests that medical team spiritual support (from physicians, nurses, as well as chaplains) can have powerful impacts in patient quality of life and decision-making at the end of life.³²

One barrier to engaging in these conversations may be that medical clinicians lack the words to do so. Spiritual screening and assessment is not a typical part of medical training and has remained a taboo topic from the perspective of health-care staff.^33,34 Our findings suggest there are simple (and perhaps universally endorsed) terms which may help medical providers talk to teens and young adults as “spiritual generalists.” Namely, rather than depend on words like “religion” and “spirituality,” try exploring hopes, worries, meaning, and changing life perspectives. Then, the “spiritual specialists” like chaplains and community faith leaders can explore barriers and evolving meanings behind words like “God” and “religion.”

There are several limitations to these findings. First, we conducted our interviews at a single center with limited racial/ethnic and religious diversity, a wide age-range, and only non-CNS malignancies. As such, the views of this sample may not be generalizable to other populations of AYAs with serious illness. Conversely, the fact that this study captures the views of agnostic and “non-religious” youth is novel. The findings raise important hypotheses about associations between self-identity, spiritual coping, and hope.

Second, this analysis was conducted post-hoc and therefore may not fully represent the breadth of participant’s religious and spiritual perspectives. Questions in this domain were largely “probe” questions; they were not queried consistently or in extensive detail, precluding longitudinal analyses of perhaps changing perspectives. Also, because the primary focus of our interviews was “resilience,” the finding that hope was predominant may be an artifact of how we directed participants’ narratives, rather than reflective of their spiritual journeys.

Third, the interviewer (A.R.R.) had dual roles as a clinician-provider and researcher; these relationships may have biased participant-willingness to share personal perspectives. Fourth, our proposed conceptual framework has not been tested in clinical settings and warrants additional research, practice, and revision to be successfully implemented.

Lastly, we assessed self-identified “religiousness” and “spirituality” at the time of enrollment. We acknowledge these self-identities may have been either transient or objectively inaccurate. For example, many who declined to be called “religious” were clearly struggling with the implications of their cancer diagnosis on prior religious views. Likewise, many who stated they were not “spiritual” still endorsed an existential crisis. We chose to respect AYA’s self-identities without question, even if they seemed incongruent. Lastly, we cannot determine how perspectives changed (for better or for worse) in concordance with participant narratives. How participants self-identified at the beginning does not necessarily reflect how they self-identified at the end. Still, we chose to develop a framework that takes AYAs where they are when we meet them, regardless of background or ongoing religious/spiritual struggle. In so doing, the framework honors emerging AYA-identities and language, while still allowing for exploration of key religious and spiritual coping needs.

We believe this framework provides a starting point for what may be difficult conversations for both clinicians and AYA patients. When AYAs decline or actively resist words like “religion,” “God,” or “spirituality,” clinicians can help them navigate their illness journey by asking about hopes and fears. At a minimum, we must remember that AYAs, like most people, are searching for meaning and purpose in life.

Abbreviations

AYA

Adolescent and Young Adult