This convergent parallel mixed-methods research study aimed to explore participants’ lived experiences with hope during cancer treatments and survivorship. Comments about hope were consistent across all participants and tended to reflect future directions or a future state of being. Codes about hope were frequently related to perspectives about why cancer happened and its impact on who they become and their ability to navigate their existential questions. Spirituality spontaneously emerged as a concept participants linked to their conceptualization of hope during cancer treatments and survivorship. Participants expressed their views on spirituality through descriptions of experiences when hope was crucial in their lives. Several participants included religious and spiritual content in their written narratives which emerged through using words such as God, Jesus, and faith. Participants gave their narratives titles such as Journeying with Jesus; Faith, Hope, and Family; Reborn Again; and Faith in God. This section further discusses the subthemes and synthesizes them with current literature.
Participants described faith in multiple contexts, such as faith in God, and faith that God was in control and would not abandon them. Religious statements included themes of interconnectedness with God, others, the church, and prayer. Prayer and church community are mentioned as sources of strength and social support. Participants shared struggles with existential questions about why cancer happened and how their experiences changed their worldviews. Previous literature has linked spirituality and religion to an external locus of control. Recognizing an external locus of control (e.g., a higher power) may help patients disassociate themselves from their illness and relinquish control and their concerns to God, thereby alleviating existential distress [9]. Alternatively, people who pray for guidance may feel empowered and experience a sense of agency or control, which may promote coping with anxiety and depression [4].
Several participants described God as a perpetual resource whom participants could invoke for multiple purposes. Individuals who believe in a higher power and engage in spiritual practices invest significant effort to make supernatural beings such as a higher-power real [35]. Participants described praying to God to request protection, strength, and endurance. Some participants endorsed complaining or releasing their concerns to God and having faith they will be taken care of because of God’s grace. A faith-based relationship in which one feels beloved by a higher power becomes a social relationship, comparable to conversing with a friend, and may help individuals feel calmer [35]. For example, one participant stated “I would always say a prayer right before receiving chemotherapy. I would not feel the side effects because I would just relax and go to sleep.” (P2). Prayer is a metacognitive activity which may attend to a person’s inner experiences and promote a focus on positivity and the release of distracting or distressing thoughts [36].
Hispanic patients receiving treatment for cancer are more likely to use prayer and other spiritual or religious practices and rituals to cope with serious illness experiences compared to Asian or White Americans [10]. For example, in a study sample of hematopoietic stem cell transplant survivors [10] the Hispanic participants were significantly younger and reported greater spiritual well-being than the non-Hispanic participants. Additionally, those participants operationalized spiritual well-being as inner peace, harmony, and faith in a higher power which provides comfort and strength during adversity. These findings suggest Hispanic cancer survivors may possess an important trait or resource for resilient coping. Therefore, spiritual well-being may be an important construct to explore in younger samples of Hispanic cancer survivors such as AYAs.
Participants expressions of gratitude to God were unsolicited findings in the study. Expressing gratitude promotes diversion of thoughts from experiences which are going poorly to experiences which are going well [36]. This type of cognitive reframe was apparent in the data as participants contrasted experiencing a life changing event with a second chance or new opportunities for life. Positive emotions like gratitude are potential predictors of improved health outcomes such as physical and emotional well-being during serious illnesses such as cancer [37]. Gratitude can be intentionally cultivated, and its expression is associated with increased empathy, optimism, and energy levels. A positive relationship between spirituality and gratitude has been previously discussed in serious illness literature [38–39]. Participation in an organized religious community may provide social support and elicit gratitude [42]. This is consistent with our participants’ description of deriving support from faith based and AYA communities.
Supporting the spiritual needs of AYAs is central to care during cancer treatments and survivorship care. AYAs are in a crucial developmental stage in which their social and spiritual identities, existential beliefs, and relationships to larger communities are in flux [3]. The best way to navigate conversations about AYAs’ spiritual needs is unclear. AYAs who have difficulty deriving personal meaning from their lived experiences during cancer treatments and survivorship may benefit from a chaplain consult [41]. AYAs living with cancer may benefit from obtaining a spiritual history and/or adding a spiritual screening to their care [42]. Also, inquiries about AYAs’ hopes may be reframed into discussions about their existential concerns and support needs. These may be valuable ways to provide spiritual support to AYAs who prefer to avoid discussions about religion or spirituality.
Although innovative, our virtual recruitment methods impose multiple limitations which impact the data’s interpretation. First, potential differences in activity and engagement in cancer survivorship care may exist between sample participants and those who did not participate. These differences limit the transferability of our findings to the Hispanic American AYA cancer survivor population. Second, we can only trust the participants legitimately met the inclusion criteria and were truthful about their lived experiences. Third, some participants were raised in different countries in Central America which informs their worldviews and relationship to healthcare. These variabilities limit the research team’s understanding of cultural nuances in the data. The interview questions may have resonated differently with participants based on their worldviews and lived experiences. Fourth, this study did not contain tools which measure spiritual well-being or indices or spirituality.