Introduction
African Americans experience a greater burden from cancer with higher levels of advanced stage disease and mortality rates when compared to other US racial/ethnic groups (American Cancer Society, 2016). In 2012, the death rate for all cancers combined was 24% higher in black men and 14% higher in black women than in white men and women (American Cancer Society, 2016). The greater burden from cancer also influences a lower life expectancy experienced among African Americans when compared with whites (ie, 72.3 vs. 76.7 years for men and 78.4 vs. 81.4 years for women; American Cancer Society, 2016). Family members of cancer patients also suffer with psychological distress reaching moderate to severe levels (Gotze et al., Reference Gotze, Brahler and Gansera2016; Ullrich et al., Reference Ullrich, Ascherfeld and Marx2017), a lack of social support (Busolo & Woodgate, Reference Busolo and Woodgate2015; Kuo et al., Reference Kuo, Chou and Chen2017), and other negative feelings associated with grief (Nappa et al., Reference Nappa, Lundgren and Axelsson2016). In addition, there might be concerns related to issues around the quality of care delivered (Rhodes et al., Reference Rhodes, Xuan and Halm2012), including the management of pain and suffering (Devik et al., Reference Devik, Hellzen and Enmarker2016; Kim et al., Reference Kim, Hwang and Hwang2017).
Research examining end-of-life and bereavement experiences among African American cancer patients and their family members has generally focused on issues related to treatment decision-making (Smith-Howell et al., Reference Smith-Howell, Hickman and Meghani2016), hospice use (LoPresti et al., Reference LoPresti, Dement and Gold2016; Sharma et al., Reference Sharma, Cameron and Chmiel2015), and the quality of care delivered (Rhodes et al., Reference Rhodes, Xuan and Halm2012). Although limited, evidence suggests that family members with strong religious values and beliefs are likely to have improved communication and trusting relationships with healthcare providers and therefore less decisional regret (Smith-Howell et al., Reference Smith-Howell, Hickman and Meghani2016) and less distress during discussions focused on palliative and hospice care (Johnson et al., Reference Johnson, Hayden and True2016). However, the end-of-life and bereavement experience among African Americans is best understood within the context of their religious culture and the beliefs embedded in that tradition.
Spirituality has provided a means for African Americans to communicate their struggles and fears to God, to express their belief in the promise of a future life free of pain and suffering, to encourage each other during adversity, and to maintain a positive sense of self (Cone, Reference Cone2002; Raboteau, Reference Raboteau1978). Moreover, African Americans affiliated with traditional Black Protestant traditions tend to be grounded in certain religious beliefs (Pew Research Center, 2016). For example, members of this faith believe with absolute certainty that God exists, rely on their religion as a source of guidance, believe that scripture passages are the word of God that should be taken literally, and believe in the existence of heaven and hell (Pew Research Center, 2016). Thus, with a life-threatening cancer diagnosis, this strong religious culture may emphasize beliefs in miracles and physical healing (Campbell et al., Reference Campbell, Williams and Orr2011; Hamilton et al., Reference Hamilton, Moore and Johnson2013a; LoPresti et al., Reference LoPresti, Dement and Gold2016) and ultimately that God gives life and therefore has the final say in when life ends (Hamilton et al., Reference Hamilton, Moore and Johnson2013a; LoPresti et al., Reference LoPresti, Dement and Gold2016).
Research that focuses on the influence of the strong cultural religious tradition on the end-of-life and bereavement experience from the perspectives of African American family members is limited. In comparison to whites, African Americans are more likely to believe in God and life after death in heaven (Pew Forum, 2016), a place that is free of pain and suffering (Cone, Reference Cone2002). Yet, in comparison to whites, African Americans are less likely to use palliative care (Hazin & Giles, Reference Hazin and Giles2011) and more likely to request care in a hospital setting (Campbell et al., Reference Campbell, Williams and Orr2011) that is aggressive in spite of the burden placed on families (Johnson et al., Reference Johnson, Kuchibhatla and Tulsky2008; LoPresti et al., Reference LoPresti, Dement and Gold2016; Wicher & Meeker, Reference Wicher and Meeker2012). This competing reality of the end-of-life care and the cultural tradition of relying on one's religion and spirituality is likely a great source of conflict and distress among African Americans. The findings in this report will contribute to an understanding of the ways in which African American family members make sense of the death of a loved one from cancer and the ways in which healthcare providers may support this population during times of grief and bereavement.
Methods
In this report, we used a qualitative descriptive design including criterion sampling, open-ended semistructured interviews, qualitative content analysis (Hsieh & Shannon, Reference Hsieh and Shannon2005), and quantitative descriptive analysis (Tabachnick & Fidell, Reference Tabachnick and Fidell2013). Approval for this study was obtained from the Institutional Review Board of the University of North Carolina at Chapel Hill.
Participants
The interviews included in this report are from 19 African American men and women residing in the southeastern United States. To be eligible, participants must have been African American ethnicity by self-report, at least 18 years old but younger than 89 years of age, and had the experience of the death of a family member attributed to cancer. Participant interviews for this report were drawn from a larger sample that targeted participants with known religious affiliations and therefore likely to use religious practices in their daily lives.
Procedures
The first author conducted all participant interviews. Interviews lasted from 15 to 45 minutes and were conducted in the privacy of participants’ homes. Participants were given a $30 gift card for each interview. All interviews were conducted between 2013 and 2014.
In the parent study, participants were asked to talk about whether and how they used religious songs, scriptures, and prayers in response to stressful life events such as the death of a family member or their own experience with a life-threatening illness. All participants were asked to respond to three open-ended questions: “Can you recall a time in your life that was particularly stressful for you?” “Tell me about a religious song, scripture, or prayer that helped you during that time,” and “Tell me how that song, scripture, and/or prayer helped you during that time.” Follow-up questions included: “Can you recall how you were feeling when you used that song or scripture, or prayer?” and “Tell me why you used that particular song, scripture, or prayer.” The focus of this report is on ways in which bereaved family members responded to follow-up questions regarding the death of a family member and their use of spirituality to make sense of their loss.
Strategies to Enhance Rigor
All interviews were conducted in the privacy of participants’ homes with only the interviewee and first author present. Participants were encouraged to freely express issues and experiences related to their self-identified stressful life event and spirituality. Interviews were audio- or videotaped and later transcribed verbatim, with the first author and a research assistant reviewing each transcript for accuracy. Member checking was conducted with members of the target population and clergy during the process of data collection and drafting of this report to validate the interpretation of findings, generation of themes, and accuracy of conclusions. The first and second authors independently read selected quotes related to bereavement from transcripts for the purpose of arriving at clarity and agreement of definitions of emerging themes for the categories related to making sense of loss. These coded themes were uploaded into SPSS v. 24 and quantitative methods were used to determine the frequency of themes occurring among these participants. Intercoder reliability was conducted using data coded from a random sample of 10 (53% of the total sample) transcripts with the first and fourth authors. Cohen's kappa was calculated and deemed moderate to perfect (0.57, 0.61, 0.77, 1.00, 0.77; Burla et al., Reference Burla, Knierim and Barth2008).
Data Analysis
To content-analyze the data, a table was initially constructed to organize each participant's responses by category of text reported that related to thoughts and feelings associated with his or her experience with the patient before and after death. These categories were labeled using texts drawn from religion, theology, and from the participants’ narrative responses.
Results
Participant Characteristics
The 19 participants identified as having the stressful event of a family member death from cancer were an average age of 53.6 years (SD = 20.7). Participants were primarily women (n = 16, 84.2%), married (n = 8, 42.1%), had completed high school (n = 17, 89.0%), were employed (n = 8, 42.1%), affiliated with a Baptist Church (n = 10, 52.6%), and lived in rural areas (n = 12, 63.2%; Table 1).
Demographic characteristics of study participants
Type of Cancer Diagnoses Reported
Participants most frequently (n = 6, 32%) reported that the doctor told them the patient's diagnosis was just “cancer.” Specific type cancer diagnoses included: pancreatic (n = 3, 16%), breast (n = 3, 16%), lung (n = 2, 11%), esophageal (n = 1, 5%), brain (n = 1, 5%), leukemia (n = 1, 5%), and stomach (n = 1, 5%). This report includes responses from two family members of one deceased patient.
Relationship to Family Member
Participants also reported their relationship to the individual that died. Relationships to deceased family members included a mother (n = 7, 37%), sister (n = 3, 16%), husband (n = 2, 11%), father (n = 1, 5%), grandmother (n = 1, 5%), grandfather (n = 1, 5%), brother (n = 1, 5%), aunt (n = 1, 5%), and cousin (n = 1, 5%). In the next section, we discuss the themes that emerged from the interviews and the frequency with which these themes occurred. In the following sections, we illustrate with brief quotations from participants of how they made sense of the loss of their family member.
Making Sense of the Loss Themes
The 19 participants included in this report were family members that discussed the ways in which they made sense of their loss within the context of their spiritual beliefs. The themes that emerged from these interviews and the frequency with which they occurred among these 19 participants included: Ready for life after death (n = 9, 47.4%), I was there (n = 8, 42.1%), I live to honor their memory (n = 8, 42.1%), God's wisdom is infinite (n = 7, 36.8%), and God prepares you and brings you through (n = 7, 36.8%). Participants’ interviews could have resulted in more than one theme.
Ready for Life After Death
Among these participants, death was believed to be a temporary state, that their loved one would transition to a future eternal life. Consistent with traditional Black Protestant religious beliefs, God has promised a heavenly home that is free of the experience of pain and suffering that may accompany advanced stage cancers. For participants in this report, it was important to have the assurance that the patient had a relationship with God and lived a life that would ensure a continued life in heaven. One 84-year-old widowed woman whose mother had died from cancer recalled the exact moment her mother died and found comfort in knowing that her mother was “ready to go home.”
When my mother died I was upset about it… but mother kept saying ‘I want to go home’, … and then the day that she died, I was upstairs talking to her and she said ‘oh there you are’ … she had been wanting to see me. …and she was telling them that she wanted to see me before she died… and I said mother if you want to go home, I will help take care of [name omitted] and I will be with [name omitted] … .and she said okay and she closed her eyes and a tear came out of her eye and she was gone. And so I was calm and peaceful after she died because I knew she was ready …
One 49-year-old married woman talked about the deaths of her mother and sister from cancer and how she found comfort in the belief in life after death and her perspective of death as a temporary state:
… and they [others] look at the end part of it but for myself it was more of watching her transition because of my faith … One of my favorite scriptures is John:14, Let not your heart be troubled because if you believe in God, believe in me, He says in my fathers’ house are many mansions and if it were not so, He would not have told us. And He has gone to prepare a place for us and … He will come back and receive us and those are the promises and that is what I relied on… the belief that these things are temporal, just temporary. This is not the end…
I Was There
Being physically present during the death was important. Participants talked about being there before the patient's death and feeling helpful or helpless. When able to “be there,” family members sang hymns and recited Bible verses to their loved one. On the other hand, participants not physically present during the transition thought about their absence in ways that gave them inner peace. One 54-year-old divorced woman talked about being there and helping to distract her dying mother with a hymn when she was in pain:
Blessed Assurance is one of the songs when my mother was dying of cancer, and she was in so much pain. We would sing—she, and I, and my sister would sing Blessed Assurance and that song would bring her so much comfort. That was her favorite hymn.
The second quote from a 62-year-old married woman is a reminder of how some individuals might be fearful of being in the presence of the dying.
… at least I was able to be there to do what I could but especially to be there ‘cause I seen the time when I wasn't able to be there ‘cause I was afraid to be around sick people, really scared to be around sick people.
Although some participants were physically there and able to help, others described a sense of helplessness when their loved one was dying. They were physically there, a witness to the suffering, yet not able to do anything. One 62-year-old married man described his most stressful life event of watching his father die of a cancer that was incurable; no treatment was available. He had this to say:
The most stressful event that I have suffered was being with my father when he died, watching him die, and knowing there was nothing nobody could do to help him … cancer had set in throughout much of his body, and there was nothing they could do for him. And today's time they might have been able to help him some, but at that time, the medical field was not that far advanced, so they had, there was nothing they could do but send him back to the house and watching him suffer like that, it was hard on me … .
I Live in Honor of Their Memory
Participants spoke of ways in which the death of their loved one was a motivator for them to continue with life, to achieve some life goal, or live a better life in honor of the deceased patients’ memory. A commitment to a better life in honor of the deceased was possibly a form of spirituality as transpersonal connectedness; living a life according to God's purpose (Reed, Reference Reed1992). One 25-year-old man made sense of his loss through a belief that his grandfather and God would want him to continue living life to the fullest.
We were close… He [the grandfather] was always supportive, always caring, he showed me a bunch of love. I learned a lot from him, a lot of things by communicating; a lot of things by observation… He lived his entire life so I can't have this dark cloud over my life which I hope to live to the fullest extent that he did, if not even further. I can't wallow in the past or in sorrow because I lost a loved one. I got to keep living because that's what he would want me to do. That's what God wants us to do you know.
Living in honor of their memory was also a form of spirituality and intra- and interpersonal connectedness to self and the deceased (Reed, Reference Reed1992). That is, participants found meaning and a sense of inner purpose through a life lived in honor of the deceased loved one (Reed, Reference Reed1992). An 18-year-old woman and first-year college student recalled her efforts to excel in high school as a way to remember her aunt:
Well, I just remember being really, really sad about [name omitted], I just felt kind of depressed about that. But that kind of gave me the drive to do better in school, because [name omitted] always called me “brainiac” or “smarty pants” or something along those lines, an endearment. It was kind of disguised as an insult. So I was like ‘You know what, I'm going to do really good,’ so … I decided I wanted to be valedictorian … I remember when I got it … and I was like ‘Yep, I did it’.
In another example of intra- and interpersonal connectedness, participants carried out the patient's legacy through assuming family, church, or work roles of the deceased. A 62-year-old married man, who was 15 or 16 when his father died, assumed the role of “man of the house” when his father died.
I knew that I had to get out and help provide for the household. At that time there wasn't much jobs for women especially black women at that time, and there wasn't that much money to be made, and when I did get a job, I got a job in a factory, and the minimum wage at that time, I think was three dollars and hour, and that was big money and so I did what I did to help provide for the family.
God's Wisdom Is Infinite
Participants had faith in God's omnipotence, absolute power, and limitless knowledge. Participants may have been socialized in their formative years to believe that “everything happens for a reason” and that when death happens “God knows best.” One 25-year-old single man described this reasoning when talking about the death of his grandfather from pancreatic cancer.
… But I always kind of have it ingrained in the back of my head, God doesn't make mistakes. I was told at a young age that everything happens for a reason. My parents were always telling me ‘don't worry about things you can't change because if you could change it you wouldn't have to worry about it.’ So that kind of gave me peace. Not immediately but after a while it kind of gave me peace knowing that hopefully he made it to a better place and this was something that was out of my control.
Acceptance in God's wisdom to know what is best was not always immediate. One 36-year-old divorced woman articulated her initial anger at God for taking her mother from her despite her prayers for healing. This participant described how over time, she came to accept that her mothers’ death was a part of God's plan.
I would be in her hospital room and I'm like God heal my mom. … you get to bargaining with God, I'm like if you heal my mom I'm going to walk straight. I'm going to do this, I'm going to do that. When she died I was devastated and angry because I'm like God I told you I was going to give my life to you if you would heal her but she's gone and I'm here and I'm alone… But in regards to the healing I know now to be absent from the body is to be present with the Lord. And I know now healing comes in a lot of forms and fashion and sometimes healing is on the other side. Sometimes you don't receive healing here on this Earth. Sometimes your healing doesn't come until you are present with God… Because He took her, He healed her… I didn't understand it [initially] because I thought it [healing] was going to be with her being here [on earth].
God Prepares You and Brings You Through
Participants spoke of their faith and trust that God would be there to get them through the pain of their loss and keep them going. Participants relied on God for someone to talk to because some family, friends, and fellow church members could be judgmental and not understand the pain of their loss. Some participants also believed that earlier traumatic events prepared them for the current loss. These participants believed that if God was there to support them through previous adversities, then He would do it again. One 65-year-old widow described an earlier stressful life event that prepared her for the death of her sister from breast cancer:
You know, they always say that you need somebody to talk to, but I guess my thing is that I don't trust people enough to spill my guts…but I can tell Jesus. No matter what I can tell Him, and He is going to understand, and that He is not going to judge me about what I'm thinking or what I say at that time… so it's like when [name omitted] was in prison, and I had to raise the kids by myself. I didn't understand why I was alone. But then after he [name omitted] died I could understand that He [God] was just preparing me for what was going to happen later on in life. So now I can just go through because I'm used to being on my own.
Discussion
The findings of this report extend what is known of ways in which family members of the deceased African American cancer patient use religious beliefs and spirituality to make sense of end-of-life and bereavement experiences. A consideration for: Ready for life after death; I was there to help; I live to honor of their memory; God's wisdom is infinite; and, God prepares you and brings you through, enabled these participants to make sense of their loss through their religious beliefs and spirituality, turning a potentially negative event into one that was positive and mental health promoting.
Ready for life after death exemplified the importance of participant's spirituality as a future life with God and, therefore, temporal state of death. Participants found peace and comfort in knowing and accepting that the deceased was “ready to go home,” had a relationship with God, and had the assurance that life was possible after death in Heaven. African Americans affiliated with historically Black Protestant traditions believe with certainty that God exists and in the existence of an afterlife in Heaven (Pew Research Center, 2016). In other studies, African American family members have engaged in religious activities such as singing hymns, reading Biblical scriptures, and praying as a way of preparing for the patients’ death, but participation in these religious activities also provided the assurance that the patient was “ready” for life after death in Heaven (Hamilton et al., Reference Hamilton, Moore and Johnson2013a, Reference Hamilton, Sandelowski and Moore2013b; Johnson, Reference Johnson1993). A readiness to “go home” is also consistent with reports on patients with incurable cancers whose desires at the end of life were to be at peace with God, for their families to be prepared for their death, and to participate in religious activities (Delgado-Guay et al., Reference Delgado-Guay, Rodriguez-Nunez and De la Cruz2016; Hampton et al., Reference Hampton, Hollis and Lloyd2007). Historically, African Americans have adopted a spirituality that emphasizes the belief in a life after death where deceased loved ones would be seen again (Jones, Reference Jones1993; Raboteau, Reference Raboteau1978; Walker, Reference Walker1979). Perhaps knowing the deceased was “ready to go home” was important because the home of reference is Heaven, a place where loved ones would be seen again (Johnson, Reference Johnson1993). However, the majority of African Americans affiliated with historically Black Protestant traditions also believe Heaven is a place rewarded to the faithful; where good people go (Jones, Reference Jones1993; Raboteau, Reference Raboteau1978; Walker, Reference Walker1979). Therefore, given this belief, it is not surprising that family members would be concerned with knowing that their loved one had a relationship with God and indeed “ready to go home.”
The theme I was there exemplified a connectedness interpersonally (to the deceased and other family members) and possible obligation to help one another in need, which is another dimension of spirituality that enabled these participants to make sense of their loss (Hamilton & Sandelowski, Reference Hamilton and Sandelowski2003; Lawson & Thomas, Reference Lawson and Thomas2007; Young et al., Reference Young, Nadarajah and Skeath2015). In palliative care research, inpatients with incurable cancers have expressed the desire for their family's presence, to say goodbye, but not be a burden (Delgado-Guay et al., Reference Delgado-Guay, Rodriguez-Nunez and De la Cruz2016). However, the findings from this report suggest the dynamic, governing nature through which these obligations are fulfilled. As these participants suggest, their ability to “be there to help” might be heavily influenced by the patient's desires. Patients ultimately decide when and to whom they will disclose information about their illness (Hamilton et al., Reference Hamilton, Moore and Powe2010). Patients will also make requests for other family members to continue family, work, or social roles or continue individual life goals. In other research, African American cancer patients have preferred to not be in the presence of family or friends who treated them with pity or as if they were lepers (Hamilton et al., Reference Hamilton, Moore and Powe2010). Participants in this report remembered that their presence or absence was desired by the deceased or at the request of other family members. Ultimately, the family members’ presence was dictated by the deceased patient's wishes or consistent with overall family needs and values.
Although the finding of Living in honor of their memory is not particularly novel, participants found a way to honor the deceased through acting on educational and life goals. Excelling in school, starting a business, and making improvements to one's character on a spiritual level were evident in these participant interviews. Our findings are consistent with other research conducted among cancer survivors in which positive outcomes were in the form of enhanced social support (Litzelman et al., Reference Litzelman, Blanch-Hartigan, Lin and Han2017). Cancer patient and family caregiver dyads have experienced personal growth, improved relationships, acceptance (Cheng et al., Reference Cheng, Sit and Cheng2016; Li et al., Reference Li, Lin and Xu2017; Mosher et al., Reference Mosher, Adams and Helft2017), and enhanced personal strength in caregivers during bereavement (Kim et al., Reference Kim, Carver and Schulz2013). However, to our knowledge this is the first study to extend findings focused on finding benefit and keeping legacies of bereaved individuals after a cancer diagnosis to include excelling in educational and life goals for the family member (Foster et al., Reference Foster, Gilmer and Davies2009; Keim-Malpass et al., Reference Keim-Malpass, Adelstein and Kavalieratos2015).
When participants trusted in God's infinite wisdom, they eventually came to understand and accept the timing and circumstances of their loved one's death. When trusting in God's infinite wisdom, participants let go of worries or anxieties related to the outcome. However, accepting death as part of God's will was a process that was not immediate, but that generally occurred over months or even years. During this process, participants initially questioned God and felt let down when prayers for healing were unanswered. Historical and religious literature has documented that African Americans have accepted that God is in control of all issues related to life and death; has wisdom beyond mortals and ultimately does what is best for His children (Cone, Reference Cone2002; Raboteau, Reference Raboteau1978). Moreover, African Americans affiliated with historically Black Protestant traditions tend to accept text from the Holy Bible as God's word literally and are therefore likely to accept suggestions to trust in the Lord and to have faith that He knows best (Pew Research Center, 2016).
A reliance on God to support and Bring them through is another dimension of spirituality and connectedness to God that is consistent with research conducted with African American elders, cancer patients, and family members (Coats et al., Reference Coats, Crist and Berger2015). African American cancer patients with curable disease and their family members have described having faith that God would provide the support and necessary strength to get through the situation (Sterba et al., Reference Sterba, Burris and Heiney2014; Torres et al., Reference Torres, Dixon and Richman2016). Participants in this report believed that God permitted previous tragedies that later provided the necessary strength, assurance, and perseverance through the death of their loved one (Cone, Reference Cone2002). Praying for healing and strength is an important aspect of the African American cancer experience for patient and family member (Washington, Reference Washington1995). However, for these participants, prayers during bereavement were a means to talk to God about their sorrows and pains. The ability to talk to God was important because support might have otherwise not been available (Washington, Reference Washington1995).
An examination of interviews focused on religious practices in response to stressful life events was a useful strategy to understand the ways in which spirituality enabled family members to make sense of the loss of a loved one to cancer; however, we note a few limitations to this approach. Because the primary focus of the original interviews was for another purpose, there is the chance that other topics specifically related to end of life and palliative care were missed. Participants in this study were not necessarily designated caregivers who likely had a different relationship with the deceased. Finally, the lack of participants that are not religiously affiliated is a limitation. However, 87% of African Americans in the United States are affiliated with Black Protestant traditions and the religious culture of those faith-based institutions (Pew Research Center, 2016).
Conclusions
Our findings support that even during bereavement, spirituality is important in the lives of African Americans. Admittedly, participants struggle with and even question their beliefs in bereavement but still hold fast to the basic belief in God and the control He has over issues related to life and death. The findings in this report can be used to inform healthcare providers to better support and address the needs for support of African American family members during end-of-life and bereavement experiences.
