Ethnic differences in how patients experience cancer pain have been reported.1–5 African American cancer patients, in particular, have been reported to present with later stage disease than Caucasian cancer patients, have worse clinical characteristics at presentation, and to have worse prognosis than white cancer patients.5–8 Furthermore, their pain is reported to be more likely to be underestimated and undertreated.6, 7, 9, 10 Cleeland et al.11 reported a striking finding that patients treated in ethnic minority settings were three times more likely to be under-medicated than patients seen in non-minority settings.
Although very little is known about African American cancer patients’ pain experience, the few studies among them that have been done indicated that their cancer pain experience is unique and somewhat different from that of other ethnic groups. African American cancer patients tend to report severe pain and have many concerns about pain management.12–14 Many African American cancer patients were reported to view pain as an indicator of cancer.15, 16 Some studies have reported significant differences in pain management between African Americans and other ethnic groups.17 Stoicism, concerns about possible addiction to opioid medications, and the development of tolerance were identified as factors influencing cancer pain management among African Americans.12 Difficulties with communication and a reluctance to complain of pain were also reported as other factors influencing pain management.12
African Americans’ pain experience was also linked to attitudes toward cancer itself. Fatalistic ideas 18–20 and pessimism about the potential to prevent and cure cancers21 have been reported. Fears about the impact of cancer on personal relationships have also been identified and have rendered African American women reluctant to seek treatment.20, 22 Some African American women are also reported to associate a stigma with cancer, due to a belief that cancer is contagious.20, 22 Dependence on religious beliefs in cancer survival has been frequently reported among African American cancer patients.10, 23 Despite these findings, there is still more to discover about this population’s pain experience through in-depth qualitative investigations, and most of these studies were conducted among cancer patients with a specific type of cancer (e.g., breast cancer or prostate cancer) in a limited geographical area, thus limiting their ability to be generalized.
The purpose of the study reported in this paper was to explore the pain experience of African American cancer patients using an online forum. Since African Americans have been reported to stigmatize cancer 20, 22 and online forums have been reported to provide a more comfortable forum for some people to discuss sensitive personal health issues,24 we thought that an online forum would work better to help them disclose their experiences, compared with traditional face-to-face focus group discussion. An online forum could still allow African American cancer patients, even in different geographical areas, to communicate and exchange their experiences and opinions, while still preserving some anonymity.25
A feminist perspective was used to theoretically guide the research process. A feminist perspective can guide both qualitative and quantitative studies, and it has unique focuses. 26 Usually, feminism is regarded as providing a singular and unified framework for analysis, but it has pluralistic perspectives including liberal, essentialist, radical, Marxist, socialist, and postmodern feminism.27
Despite these variances, the commonalities that run through them comprise the current feminist perspective.28 First, the feminist perspective prioritizes research participants’ own views, perspectives, opinions, interests, and experiences.29 Thus, in the study reported in this paper, we tried to prioritize research participants’ own views, perspectives, opinions, and experiences. Second, the feminist perspective emphasizes shortening the distance between researchers and research participants and mutual creation of data by observer and object of study.29–31
Third, the feminist perspective emphasizes the examination of diverse gender-specific and ethnic-specific situations, environments, and contexts of people’s daily life that may influence research phenomenon itself and societal and cultural views on the phenomenon.32 For this study, it was assumed that inadequate cancer pain management among African American patients would not only come from pure biology, but also from patients’ continuous interactions with their environment. For example, an African American woman, who depends on God in every aspect of her life, might not report pain until it becomes really serious and intolerable, accepting it as the positive intention of God that she learns something through the experience. If her health care provider in the U.S. health care system does not participate in this contextual understanding with her, s/he might just think that the patient does not need pain medication, and the health care provider would have made decisions about cancer pain management based only on current standardized practice guidelines that rarely consider this aspect of culture, of the patient’s interpretation of her experience. This kind of situation resulting in the possible under-medication of African Americans’ cancer pain comes from cultural differences in interactions between African American cancer patients and their health care providers, or from just not considering African American women’s views and attitudes toward cancer pain.
Fourth, the feminist perspective views gender as a significant characteristic that interacts with other factors such as race, ethnicity, and class in order to structure societal relationships.33 Thus, for this study, we considered gender and ethnicity as significant factors that circumscribe African American cancer patients’ pain experience. Finally, feminists view bias as a misplaced term and emphasize that researchers need to be reflective about their views during the research process. 34 Feminists believe that biases can be turned into resources if researchers are sufficiently thoughtful about the research phenomenon. Thus, we tried to reflect on our research phenomenon through biweekly research meetings, group discussions on issues raised during the research process, and memo writing during the data collection and analysis process.
Methods
This study was a qualitative online forum, conducted with 11 African American cancer patients. The study was approved by the Institutional Review Board of the institution where the authors are affiliated, and was conducted as part of a larger study on cancer pain experience among multiethnic groups of cancer patients. Findings about White cancer patients and Asian American cancer patients, as well as quantitative findings on ethnic differences in cancer pain experience among four major ethnic groups in the U.S., can be found elsewhere. 35–37
Samples
Eleven self-identified non-Hispanic African American cancer patients were recruited from among 109 African American cancer patients of the larger study’s Internet survey who were recruited using a convenience sampling method through both Internet (e.g., Internet cancer support groups for African Americans) and real community settings (e.g., traditional in-person community cancer support groups for African Americans). Originally, 21 African American cancer patients agreed to participate in the online forum, but only 11 actually participated in the online forum. Considering that six to ten participants are usually thought to be adequate for a focus group 38, we decided that this sample size was enough for this qualitative online forum study. Moreover, there were no significant differences in sociodemographic characteristics of the participants who participated through the end of the online forum and those who dropped out during the online forum. A plausible reason for the low retention rate would be changes in participants’ health status. In several cases, participants reported that they could not continue with the forum due to relapses of their diseases, imminent admission to hospitals, and changes in their treatment modalities. Another possible reason would be losing track of usernames and passwords. As reported among White cancer patients,35 cancer patients tended to have problems in remembering user IDs and passwords to allow entry to the online forum. Indeed, in several cases, participants asked to retrieve their user IDs and passwords. Thus, we infer that some participants might choose to stop their participation rather than asking for their user IDs and passwords over and over again.
Participants were included if they were self-reported cancer patients, at least 18 years of age, could read and write English, and whose ethnic identity was non-Hispanic (N-H) African American. Table 1 summarizes their sociodemographic characteristics. The average age was 46.45 years (SD=6.91). All were women, although we had invited African American men to the online forum. Also, all of them were US-born (100%). About 64% of the participants were college graduates or had graduate degrees, 64% were employed, and 100% had a religion. The average annual family income was $48,276 dollars (range: $2,720–$150,000/SD=48,071.83). Eighty two percent of the participants had breast cancer; one person had lung cancer; and one person had thyroid cancer. Fifty five percent of the participants were in Stage II; and 55% used combined treatment modalities for their cancer. Eighty two percent of the participants were not taking pain medication.
Table 1.
Sociodemographic characteristics of the participants (N=11)
| Characteristics | N (%) | Characteristics | N (%) |
|---|---|---|---|
| Age | Gender | ||
| Mean (SD) | 46.45 (6.91) | Women | 11 (100) |
| Men | 0 (0) | ||
| Education | Religion | ||
| High-school | 2 (18.2) | Protestant | 2 (18.2) |
| Partial college | 2 (18.2) | Others | 9 (81.8) |
| College graduates | 5 (45.5) | Annual Family Income: | $48,276 |
| Graduate degree | 2 (18.2) | Mean (SD) | (SD=48,071.83) |
| Employment | US Born | ||
| Employed | 7 (63.6) | Yes | 11 (100) |
| Unemployed | 4 (36.4) | No | 0 (0) |
| Income Satisfaction | Usage of Pain Medication | ||
| Totally insufficient | 1 (9.1) | Yes | 2 (18.2) |
| Somewhat insufficient | 6 (54.5) | No | 9 (81.8) |
| Sufficient for essentials | 3 (27.3) | ||
| More than sufficient | 1 (9.1) | ||
| General Health | Previous Medical Treatments | ||
| Unhealthy | 2 (18.2) | Radiation only | 1 (9.1) |
| Healthy | 9 (81.8) | Chemotherapy only | 3 (27.3) |
| Combined | 6 (54.5) | ||
| Others | 1 (9.1) | ||
| Primary cancer Site | Stage of Cancer | ||
| Breast | 9 (81.8) | 0 | 1 (9.1) |
| Lung | 1 (9.1) | I | 0 (0) |
| Thyroid | 1 (9.1) | II | 6 (54.6) |
| III | 2 (18.2) | ||
| Unknown | 1 (9.1) | ||
| Missing | 1 (9.1) |
To increase the retention rate of the online forum, the research team adopted several strategies. One strategy was to establish bonds between participants and researchers through respectful and trustworthy Internet interactions using culturally-matched moderators for the forum. A monetary incentive ($50 gift certificates) was used to retain participants, and bimonthly email newsletters and email greeting cards for U.S. holidays were also sent out to the participants. There were fluctuations in the participants’ response rates to each topic throughout the 6-month period, but the newsletters and email cards boosted the response rates; immediately after they were sent out, the number of messages posted by the participants increased noticeably.
Instruments: Online Forum Topics
To administer the online forum, nine topics on cancer pain experience were posted serially. Table 2 summarizes the topics. With each topic, several prompts were used to guide participants’ understanding and discussion of the topics. The research team developed the topics and prompts; an expert panel of oncology researchers reviewed them; and the topics were modified based on the expert review and pilot-tested among nine cancer patients. 39
Table 2.
The topics for the online forum
| Topics on Cancer Pain Experience
|
|
Data Collection Procedures
Upon getting participants’ agreements to participate in the online forum, the research team contacted participants and asked them to register at the online forum site. During the registration process, they were asked to choose usernames and passwords. Then, they were asked to choose pseudonyms to use during the online forum, to protect participants’ real identities. When a total of 21 participants registered, the forum was initiated by inviting participants to visit the forum site and introduce themselves to each other. Then, the moderator asked participants to discuss forum topics one by one (one to two topics per month). The online forum site had a message board where participants could initiate a new thread, post a new message, and respond to messages posted by others. Participants could post discussion messages about the topics at their convenience in any form (such as stories, conversations, or responses to others’ messages). The online forum site was secured by monitoring participants’ visits and using the prearranged password protection. The forum was administered for six months, only 11 participants were retained, and two research members were involved as moderators in the online forum administration. A total of 119 messages were posted, and each participant posted an average of 10 messages (range: 1–27 messages) throughout the 6-month period.
Data Analysis
The data were analyzed using thematic analysis from the first week of data collection. A code book was made based on the line-by-line coding process, and categorization was done using the code book. Transcripts were directly printed out from the online forum site, and were thoroughly read and re-read for line-by-line coding. Content and context analysis played the major roles during the categorization process. After creating the categories representing the codes, linkages among the categories were made, and themes that represent the linkages were extracted while trying to find culture-specific cancer pain experience of African American cancer patients. Contextual factors including health status, financial status, families’ responses and roles, stability of their daily lives, and social support networks were considered and their impacts on cancer pain experience were explored. During this analysis process, reading and re-reading transcripts were done continuously as an ongoing check-and-balance system to get more abstract and refined ideas about African American cancer patients’ pain experience. Throughout the analysis process, three research team members were involved: two moderators of the online forum doing the line-by-line coding and developing the code book; and the third one reviewing the transcripts with the code book to confirm the codes. Then, all three did categorization, and then met to discuss and agree on the categories that each of them developed.
Rigor of the Study
As mentioned above, the study presented in this paper was theoretically guided by a feminist perspective. Thus, to ensure the strength of this study, the feminist standards of rigor in research suggested by Hall and Stevens29 were used: dependability, reflexivity, relevance, credibility, and adequacy. Dependability can be ensured through examining the methodological and analytic decision trails created throughout the research process. 29 To create dependability, we examined methodological and analytic issues and concerns during the online forum through group discussion and documenting conclusions. Reflexivity happens through keeping a chronological research diary, memos, and field notes.29 Throughout the data collection and analysis process, research team members kept memos to ensure reflexivity. Relevance is a criterion determining the appropriateness and significance of research by checking whether research questions address research participants’ concerns and whether the answers to these questions serve women’s interests and improve the conditions of women’s lives.29 Credibility is achieved when participants themselves perceive the research findings as their own.29 During the last month of the online forum reported in this paper, to ensure credibility and relevance of the study, participants were asked to provide feedback to researchers on a message board on the project website. Finally, adequacy can be achieved when researchers continuously question, discuss, and think through research methods, goals, research questions, design, scope, analysis, conclusions, and impact of the study within the social and political environment.29 In the study reported in this paper, to ensure adequacy of the study, the research team had written memos related to concerns and issues raised during the recruitment, data collection, and data analysis process, and had biweekly group discussion on their concerns and issues.
Findings
There were four themes identified through analyzing the online forum data among African American cancer patients. First, participants viewed cancer as a challenge in life that they should fight against. Second, cancer pain was differentiated from ordinary pain because cancer was stigmatized in their culture. Third, the participants, who were all women, were culturally raised to be strong, and this cultural heritage inhibited participants from expressing pain and seeking help with pain management. Finally, participants echoed that, after the diagnosis of cancer, their perspectives of life had been changed positively. Each theme is discussed in detail as follows.
A Challenge in Life
Some of the participants mentioned that African Americans in general perceived cancer as a death sentence, as a frightening, terminal disease with no hope of survival for those stricken. Yet, the majority of participants also viewed cancer as a challenge in life that God allowed them to have in order to test their faith and to help others conquer cancer also. One participant expressed this belief with the following words:
A survivor once told me that 90% of your healing comes from your mind set and at that point in time I began to claim my healing through Christ Jesus. Don’t get me wrong I take this journey serious however I believe that I am healed and that God has a divine purpose for my life. And if I can help someone out who is going through what I have been through then it makes it worth while. Believe me that it does get easier. You just got to hold on.
As a way of giving less power to cancer during their fight against the disease, participants tried to talk about cancer as little as possible. Subsequently, cancer pain was rarely discussed among the participants. The following statements from two participants showed their different views on cancer. One participant said:
Most African American culture views cancer as a death sentence. Also Cancer is viewed, more as terminal and constant and ongoing with no certainty of its end. I have lung cancer. In the black community the survival rate is low. Partly because a lot of people ignore signs that are related to it and when they are finally diagnosed it’s too late. When I was diagnosed, and when I finally told a few people…many shied away from me. I now realize that a lot of them probably thought that my chances weren’t good and didn’t know what to say to me.
Another participant said:
Cancer means challenge. Either I’m going to beat it or it’s going to beat me. I consider cancer as an invasion. It’s like an unwanted visitor that won’t leave on its own. You give off clues that you want them to leave but they just don’t get it. Your body fights all the symptoms as hard as it can but yet it still lingers. To get rid of the visitor you have to come up with a plan. I try to use the word as little as possible and when I do I spell it with a small “c” to give it less power.
Stigmatized Cancer Pain
Participants differentiated cancer pain from other ordinary pain (e.g., toothache, headache, sinus pain, etc). Since cancer was regarded as a death sentence and stigmatized in African American culture, the participants also viewed cancer pain as a stigmatized condition that should not be expressed in public or to strangers. Two participants said:
In my culture, there are still a lot people that don’t talk about cancer. Most people in my family don’t handle pain very well. I believe the differences in the pain from everyday illnesses have to do with the stigma that goes along with cancer. People believe that there may not be a chance for survival.
I sensed that some people thought it was something to be ashamed of. I didn’t see it like that. I have always felt that if I sensed that something was wrong, I wanted to find out as quickly as possible and deal with it and try to offset its onslaught. We as African-Americans need to be more open about health issues and share experiences in order to help each other.
Most participants viewed cancer pain as a natural part of cancer that could not be avoided in the pathological process of the disease. Thus, to these participants, cancer pain meant little chance of survival, a frightening thing, and eventually terminal. One of the participants talked about her pain as follows:
Cancer means to me there is something not right in my body. Pain to me means that my body is not the proper form. I view cancer pain as being frightening, due to the severity of the illness.
Strong as African American Women
Many participants mentioned that, in their culture, women in particular were educated and encouraged to be strong to survive. Even when they had pain, they did not want to express pain openly in front of others because they did not want to be labeled a “whiner or complainer”. One woman said:
I am a 44 year old black woman. I grew up in an all black community. I think that within the black community… we don’t always openly express our pain. Sometimes we are so busy being strong for other people that we don’t want to come off as a whiner and complainer. We don’t want to come off as being weak to others. We don’t like to be labeled as hypochondriacs. I think that from an early age we are taught that you should have faith. Instead of constantly complaining about illness and pain, we have been taught to just have faith and it will be and all will be well.
Participants showed stoic attitudes toward cancer pain, possibly due to these cultural attitudes towards womanhood. Rather than taking pain medication, they chose to endure pain as well as they possibly could. Two participants mentioned:
I think that part of our culture has taught us that we must be strong. That we can make it through anything. In regards to my pain, I think that sometimes I even find me convincing myself that it is not as bad as it is. It’s something that has been embedded in us from a young age.
Being a female means that I am strong and have to handle pain. In most cases, I don’t take medication for pain unless it persists.
Participants also placed their own needs behind other family members’ needs because they believed that they, as mothers, should give priority to their families and put their health last. This identification as mothers also influenced participants’ pain management. One participant said:
Many women in my culture are mostly family oriented, strong women who take care of everyone from the husband to the family pet and put our health and well being last. That’s not good if we do find a lump we have put off further medical attention because we are too busy…
Changes in Perspectives
Most participants mentioned that, after the cancer diagnosis, their views on life have changed in a positive way: they began not to take anything for granted and to appreciate life itself. Two participants said:
The biggest change was my attitude. After dealing with the physical changes I became grateful. I realized that I could have been worst off then I actually was. I dealt with changes by expecting that even though my body went through physical changes, it didn’t effect who I was.
Having cancer has changed my life so drastically that I can not write it in words. It’s made me appreciate life more. I don’t take anything for granted. I thank God for every new day he allows me to see. Cancer has opened my eyes. I’ve learned who is really there for me. I’ve learned not to sweat the small stuff and to choose my battles. Sometimes, I get depressed over it, but I don’t usually allow myself to stay in that state long. I always remember how blessed I am.
These changes in participants’ perspectives also related to their concerns about cherished family members, especially their children. As they went through the cancer diagnosis and treatment process, they became more concerned about their family members, and they tried to make better decisions for their family members. One participant said:
Going through cancer has given me a new lease on life. I view things differently. I try to make better decisions regarding me and my daughter. I cherish all my friends and family, not to mention myself.
In the process of changing their perspectives, spirituality was the most influential factor. Many participants mentioned that, through faith in God, they learned how to appreciate life and cope with cancer. Participants also frequently mentioned that they got emotional comfort and managed fear by praying and reading the Bible. Two participants reflected on their spiritual experiences as follows:
When I first found out I had breast cancer, I didn’t know how to react. I was home that day and when the doctor told me that [the] biopsy was positive. I wanted to cry, but had no tears. I just figured this is something I’ll have to deal with. Everyone that has gone through it before me gave me one word to live by, “positive.” And that word along with GOD and my supporters has brought me through this.
I know that I thank God for taking me through this cancer journey. It helps me appreciate what is really important in my life…I read the Daily Bread, and the Upper Room to encourage myself, that I would live and get through the cancer experience. My fear of cancer was diminished due to the belief of God.
Discussion
The findings reported in this paper support the idea that the pain experience of African American cancer patients is unique, and that there is a tendency to under-medicate because of cultural beliefs and views related to cancer pain. While some study findings agree with previous findings among African American cancer patients, others add new information to the current literature on cancer pain experience of African Americans. The first theme, “a challenge in life,” is somewhat different from previous findings on African American cancer patients’ views on cancer, which were dominantly pessimistic and fatalistic.18–21 Indeed, studies have reported that cancer is stigmatized as a death sentence among African Americans and that African American cancer patients believe that it is their fate to get cancer. However, findings reported in this paper indicated that a majority of the study participants viewed cancer as a challenge to fight against, which actually agrees with findings among White cancer patients reported in the current literature; many studies indicated White cancer patients viewed cancer as a challenge to overcome and a time to exert control over their own bodies and lives.40, 41
The second theme, “stigmatized cancer pain,” showed how African Americans differentiated cancer pain from ordinary pain. Since participants viewed cancer pain as a natural part of cancer, a condition that led those around them to avoid or condemn them, they stigmatized cancer pain itself and did not disclose or express their pain to others. Also, since cancer brought cancer pain to them, they felt fear when they had cancer pain. Participants thought that cancer pain indicated the seriousness or progression of the disease. This theme affirms findings of previous studies among African American cancer patients. As mentioned above, previous studies indicated that some African American women stigmatized cancer because they thought cancer was contagious.20, 22 Also, it was reported that African Americans viewed cancer as God’s punishment for improper behavior, not living according to His will, or as the work of the devil.42 The studies also reported fears about the impacts of cancer on personal relationships, making African American women reluctant to seek treatment.20, 22 The second theme of “stigmatized cancer pain” also agrees with previous studies reporting that ethnic minority groups stigmatize cancer itself because of their beliefs that cancer is a genetic disease or a transmittable disease.43, 44 However, this finding does not agree with that among White cancer patients who view cancer as a chronic disease and as a challenge that they eventually need to control. 35, 40, 45
The third theme of “strong as African American women” agrees with the literature on African American matriarchal culture. African American women have been reported to be largely single parents and heads of households charged with the care of small children. 46 Consequently, the roles of these women have been and continue to be that of leadership and strength within the family. Hill46 posited that this matriarchal family arrangement can be traced back to the days of slavery, when men were sold off to other plantations, leaving women behind to care for their families and the slaveholders’ families. This matriarchal culture influenced African-American women to be stoic to pain. Participants of the study, all women, viewed that African American women were raised to be strong and not to be “whiners and complainers” in their culture. Also, participants mentioned that as mothers, they should be strong and place the needs of their families, especially their children, paramount in their lives. This attitude toward family affected African American women’s pain experience: expressions of weakness, including expressions of pain, were not viewed favorably in African American culture. This finding agrees with the findings of Guidry et al. 47 among African American women of placing highest priority on their families’ needs over their own needs47 and of strong kinship and reliance on family. 47 Furthermore, although the underlying reasons would be different, this finding among African American women agrees with that among Hispanic and Asian women cancer patients. 48–52
The final theme, “changes in perspective,” agrees with findings on the adjustment process of White cancer patients reported in the literature, which has been reported frequently as the experience of all cancer patients’ disease process. 40, 41 In the study reported in this paper, African American participants’ attitudes toward life changed throughout the disease process, and participants began to view everything in a positive way and appreciate the current moments of their lives. Spirituality was found to play an important role in the participants’ coping process, which is consistent with the findings of previous studies among African American cancer patients. 53–55
The changes in perspectives among African American cancer patients, however, need to be interpreted differently from those of White cancer patients. The changes in White cancer patients’ perspectives are based on individualism that emphasizes independence, autonomy, self-reliance, uniqueness, achievement orientation, and competition.56 In other words, the changes in their perspectives are based on the assumption that patients should have control of their own bodies and health. Consequently, the changes in White cancer patients’ perspectives lead them to control their own bodies and lives. However, the changes in perspectives among African American cancer patients have their bases in collectivism emphasizing the welfare of their families.57 In other words, the changes in African American cancer patients’ perspective lead them to be more concerned about their family members, especially their children, during the process of their disease; not to make their family members, relatives, and close friends worry about them; and to appreciate everything that has been provided to them. These changes in perspectives might make African American cancer patients choose to tolerate pain as much as they possibly could because they would not want to make their family, relatives, and close friends worry about them. Spirituality may also play an important role in diverting or tolerating cancer pain during this process.
Conclusion and Implications
The study reported in this paper explored the cancer pain experience of African Americans. The findings indicated that although many African American cancer patients may regard cancer as a terminal disease with no hope for treatment or cure, most participants in this study also considered cancer a challenge in life to be overcome. The findings also indicated that African American cancer patients stigmatized cancer pain while differentiating it from other ordinary pain from daily lives. The African American cultural value of “being strong” inhibited participants from expressing pain and seeking help for pain management. Finally, the findings indicated certain changes in perspectives among African American cancer patients during the disease process, which might make them tolerate pain through praying to God and reading the Bible. Based on the findings, we suggest the following for future research on cancer pain experience of African American cancer patients.
First, since the study reported in this paper was an online forum among African American cancer patients recruited through both Internet and real settings, the participants might not fully represent all African American cancer patients. The reason that the first theme of the study reported in this paper was a little bit different from previous studies among African American cancer patients might come from the fact that the participants of this study were recruited through both Internet and real settings. As studies have reported, cancer patients contacted and recruited through Internet settings might be more highly educated cancer patients with higher incomes.39, 58 Further studies among diverse groups of African American cancer patients are needed for development of a more comprehensive knowledge base on the pain experience of African American cancer patients.
Second, although a number of studies have been conducted on African American cancer patients’ experience, very little still is known about their cancer pain experience. The second, third, and fourth themes of the study reported in this paper echoed that African American cancer patients tended to be under-medicated due to the stigmatized nature of cancer pain, culturally prescribed stoic attitudes to pain, and heavy reliance on spirituality with changes in perspectives. These findings certainly raise an important health care issue for this specific group of cancer patients: inadequate cancer pain management. Further studies on African American cancer patients’ pain experience with a focus on cultural attitudes toward cancer pain are necessary to fully understand the reasons for the inadequate cancer pain management and to provide direction for cancer pain management with this population.
Third, the findings supported that African American cancer patients were more concerned about their family members, especially their children, than their own needs, including the needs for pain management, during the process of their disease. Despite recent findings that African American women gave higher priority to their families’ needs over their own needs and that African Americans had strong senses of kinship in their families,47 very little is still known about the influences of family on African Americans’ cancer pain experience. Thus, studies on this topic are needed to develop more culturally sensitive strategies for pain management of African American cancer patients.
Finally, findings supported that the online forum worked well among African American cancer patients. Yet, as described above, it was difficult to retain participants who originally agreed to participate in the online forum. Health/illness situations of the participants kept changing and they might be forgetting user IDs and passwords. Furthermore, participants tended to be a selected group of African American cancer patients who were highly educated with high incomes. Thus, researchers who want to use online forums, especially African American cancer patients, need to carefully consider the costs and benefits of using the online forum among African American cancer patients.
Supplementary Material
References
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