Lessons Learned in Developing a Culturally Adapted Intervention for African-American Families Coping with Parental Cancer
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- Davey, M.P., Kissil, K., Lynch, L. et al. J Canc Educ (2012) 27: 744. doi:10.1007/s13187-012-0398-0
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Prior clinical research supports the effectiveness of cancer support groups for cancer patients and their families, yet African-American families continue to be underrepresented in cancer support groups and in cancer clinical research studies. In order to fill this gap, we developed and evaluated a culturally adapted family support group for African-American families coping with parental cancer. We encountered unexpected challenges in overcoming barriers to recruitment, partnering with oncology providers, and building trust with the African-American community and African-American families coping with parental cancer. We describe actions taken during the two phases of this study and lessons learned along the way about recruiting and engaging African-American families in cancer support group studies, partnering with oncology providers, networking with the African-American community, and the importance of demonstrating cultural sensitivity to overcome the understandable historical legacy of mistrust.
KeywordsAfrican-American familiesFamily interventionParental cancer
Cancer health disparities exist among racial and ethnic minorities in the USA as African-American women have a 17 % higher rate of mortality compared to white women, and African-American men have a 34 % higher cancer mortality rate compared to their white counterparts . Despite these statistics, African-Americans continue to be underrepresented in cancer research studies . There are differences in how individuals cope with cancer across racial and ethnic groups [3, 4], suggesting that it is important to develop culturally adapted clinical interventions tailored to minority cancer patients in the USA. Moreover, the cancer experience involves the entire family and not just an individual patient coping with cancer, so there is a need to develop and evaluate more family interventions. Prior research has demonstrated the mutual benefits of including support persons such as friends and family members  in oncology psychosocial support services, yet school-age children who are coping with a parent diagnosed with cancer have often been overlooked by clinical researchers and the US healthcare system, and few interventions have been developed to target this vulnerable population . We need to develop and evaluate more culturally adapted family interventions to help minority families navigate parental cancer.
Culture shapes how families see the world, function, cope, and adapt to stressors like parental cancer. Turner and colleagues  suggest that, “the human services fields… have been guided by the ‘melting pot’ perspective, which either minimizes or denies the significance of cultural variation in prevention or intervention services.” According to the cultural variance model, different cultures and ethnicities have unique characteristics and needs because of their diverse histories and experiences and should not be studied in comparison to each other . Behavioral medicine and oncology support services tend to either minimize or deny the significance of cultural variations while developing and delivering clinical prevention or intervention programs, often overlooking the function of race, ethnicity, and culture in problem occurrence, prevention, and treatment . More emphasis needs to be placed on how family members are interconnected and mutually influence each other and on how culture is essential in their lives to better help diverse families cope with cancer.
Although there are many psychosocial services available to cancer patients in the USA, most have not been culturally adapted for African-American and other minority cancer patients . African-Americans are underrepresented in cancer clinical research studies because of (1) a lack of awareness about research, (2) a lack of access to cancer trials, (3) fear and mistrust, (4) cultural beliefs, and (5) racial and ethnic discrimination [9–12]. It is very important to understand the historical context of African-Americans and their understandable mistrust of clinical researchers because of a long history of exploitation, a lack of knowledge about research and the informed consent process, lack of cultural sensitivity of oncology staff, potential stigma for participants, and financial and structural barriers [10, 11]. Consequently, African-Americans and other minority patients tend to not utilize psychosocial support services such as cancer self-help groups because of an understandable mistrust of providers, perceived lack of cultural sensitivity, and institutional and structural barriers to recruitment and participation [9–12].
Churches are safe places where African-Americans historically have gone to and continue to go for social support [3, 7, 10–12]. It is important to recognize and respect senior pastors, partner with community liaisons, respect the mission of the church, and establish open communication in order to build collaborative partnerships with the African-American community . Although African-Americans may be more amenable to utilizing cancer support services if they are provided within the more familiar church environment, we need to also sensitize oncology providers to be more attuned to the needs of African-American patients. It is essential for healthcare providers to provide culturally sensitive treatment by asking patients about the importance of religion and church-related instrumental and emotional support [3, 4, 7, 12]. Developing culturally adapted family oncology support services could help remove some of these barriers for minority cancer patients and their families because culturally sensitive cancer support programs may encourage more interest in the utilization of cancer support services either outside or inside of the church.
In order to fill this gap, we developed and evaluated a culturally adapted family support group for African-American families coping with parental cancer. We describe actions taken during the two phases of this study and lessons learned along the way about recruiting and engaging African-American families in cancer support group studies, partnering with oncology providers, networking with the African-American community, and the importance of demonstrating cultural sensitivity in order to overcome the understandable historical legacy of mistrust. We want to note that the two studies described in this paper were approved by the appropriate ethics committee and have been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helskinki. Additionally, all parents and school-age children gave their informed consent prior to their inclusion in the studies.
Pilot Phase I: Cultural Adaptation of the Model
Two years before the 2-year pilot study (2008–2009), we conducted six focus groups with African-American parents coping with cancer in the last 12 months and their school-age children to first understand their needs and to develop a culturally adapted family intervention [13–15]. During the focus group study, we learned that an important factor is to have a culturally informed group leader who can provide interventions in a way that is acceptable to patients of particular cultural and racial backgrounds. We also learned from participants in this first study  that African-American parents tended to individually rely on religiosity and spirituality as a primary coping strategy. Parents described having a personal relationship with God, in addition to strong and close relationships with extended kin, their church families, and the African-American community. African-American cancer patients’ faith in God and belief that their healing is in the hands of God, allowed them to maintain a positive outlook for themselves and for their families .
Participants in the focus groups recommended a support group that builds on this positive outlook and promotes growth for their families. Based on what African-American parents and their school-age children suggested regarding how to make a family intervention program culturally sensitive and most helpful to other African-American families coping with parental cancer, we developed a culturally adapted family intervention. We trained an African-American therapist to discuss what to expect during the cancer diagnosis and treatment, to build empathy among school-age children in the group, to promote open communication of thoughts and feelings between parents and children, and to enhance Afrocentric coping skills focusing on faith and spirituality, resilience, utilizing fictive kin for social support, and promoting flexibility of family roles. Using the study findings from this earlier focus group study [13–15], we adapted Clarke’s school-age child support group model  and Beardslee’s multiple family therapy groups for families coping with parental depression [17, 18] to develop a culturally adapted family support group.
Pilot Phase 2: Evaluation of the Culturally Adapted Family Intervention
The culturally adapted family intervention was tailored to fit the specific needs of African-American families by facilitating Afrocentric coping skills such as relying on faith, promoting fictive kin support, highlighting positives, and encouraging flexibility in family roles . We trained a spiritually informed African-American female therapist to discuss what to expect during the parent’s cancer diagnosis and treatment and to improve family communication and support. During the support group sessions, the therapist encouraged empathy among the parents and their children, promoted open communication of thoughts and feelings, encouraged faith, spirituality, resilience, and the utilization of fictive kin, and the African-American church for social support. Additionally, the family intervention was interactive rather than passive because it encouraged parents and children to openly practice talking to each other and to address any vulnerable feelings related to the parent’s cancer and their relationship .
Specifically, the culturally adapted family support group was comprised of two phases—phase one includes three support group sessions for the African-American school-age children, followed by phase two which includes two multiple family support group sessions which the parents and school-age children attended together. Phase 1 is comprised of the following three 90-min school-age child support group sessions (up to five school-age children): (session 1) building empathy and understanding among school-age children coping with parental cancer; reducing tension, increasing fun activities, and maintaining normal routines; (session 2) improving positive thinking and adaptive coping to parental cancer; and (session 3) promoting open communication of thoughts and feelings to parents about the cancer experience during the two multiple family therapy support group sessions (note that if interested, our culturally adapted treatment manual can be requested from the first author).
Phase 2 is an interactive culturally adapted family support group session (up to five parent–school-age dyads per group) comprised of two 2-h multiple group family therapy sessions focusing on (multiple family session 1) encouraging faith, spirituality, resilience, and utilizing fictive kin and the African-American community (e.g., the Church) for practical, emotional, and spiritual support; and (multiple family session 2) promoting open communication of thoughts and feelings between parents and their school-age children about the cancer experience and facilitating secure attachment to promote family resilience and culturally adaptive coping.
The control group received five psychoeducation sessions that covered the same material as the intervention group but in the form of a lecture. The first three sessions were for the school-age children, and the last two sessions were only for the parents. We ran a total of five support groups from 2009–2011 comprised of three culturally adapted family intervention groups and two-treatment as-usual psychoeducation groups. All parents and their school-age children were assessed through culturally sensitive reliable and valid self-report questionnaires at baseline and after completing the intervention. Parents and their school-age children additionally completed a consumer satisfaction assessment post-intervention .
Our final sample was comprised of 12 African-American parents (ten mothers, one father, and one maternal grandmother who were diagnosed with cancer in the last 12 months) and 19 of their school-age children (ten daughters, eight sons, and one granddaughter). Seven African-American families completed the culturally adapted family intervention and five demographically matched (e.g., by parent’s age, marital status, education, income, gender, age, and birth order of oldest participating child, parent’s cancer type, and stage of cancer) African-American families completed the psychoeducation treatment as usual . Over half of the parents who volunteered for the support group study were diagnosed with breast cancer, and the remaining parents were diagnosed with cancer of the kidney, melanoma, pancreas, and/or lungs. Approximately half of the parents were diagnosed with either stage I or stage II cancer, and over half were diagnosed with stage III cancer. At baseline before the intervention started, approximately 60 % of parents were in chemotherapy, and the mean age of participating school-age children was 16; however, ages of school-age children ranged from 10 to 18 years in our study. Middle to lower-income sample of families volunteered to participate, and approximately half were married and half were single parents.
Effectiveness of Family Intervention and Feedback from Families
The interactive structure of the family intervention where parents and school-age children had sessions together was favorable for African-Americans. Creating in-the-moment experiences of sharing feelings and openly discussing their family’s cancer journeys in the presence of fellow sojourners, both during the thee school-age children support group sessions and the two multiple family group sessions facilitated a sense of community among participants, which is a core aspect of African-American culture. “Collective coping” is grounded in the African-based value system which places the group above the individual . For example, when African-Americans are confronted with stressors, they tend to rely on group-derived ego strengths (e.g., family, community, and social support networks) [20, 21].
African-American parents who completed the culturally adapted family intervention reported significantly better communication with their school-age children and were more satisfied with the intervention compared to African-American parents who completed the psychoeducation treatment as usual . This was supported by parents’ open-ended narrative responses on the consumer satisfaction assessments. They described their ability to both listen and to more openly discuss how their school-age children were feeling about the cancer diagnosis and treatment, and they were able to better understand what their school-age children were experiencing. All African-American parents considered the culturally adapted family intervention well-suited for other African-American families coping with parental cancer, and reported that our focus on improved parent–child communication during the intervention was the most helpful part of the family intervention that had a direct and positive impact on their families.
African-American school-age children who completed the culturally adapted family intervention were significantly more satisfied compared to the school-age children who completed the psychoeducation treatment as usual, and they also reported significantly better communication with their parents , which was supported by their narrative feedback on the consumer satisfaction assessment. Most identified the family sessions, where they came together with their parents to openly talk, as the most helpful part of the culturally adapted family intervention. They especially liked meeting other families who were also coping with parental cancer and having a safe place to openly discuss their worries and feelings with each other and with their parents. Similar to the feedback provided by their parents, school-age children who completed the culturally adapted family intervention described the intervention as helpful and would recommend it to other African-American families coping with parental cancer. The evaluation of our 2-year pilot study and narrative feedback from the families support the benefits of bringing African-American families together in our culturally adapted family intervention.
Recruitment Strategies and Challenges
Despite the positive findings suggesting that our culturally adapted family intervention is effective, we struggled with recruiting African-American families coping with parental cancer and here describe actions taken and lessons learned along the way. Even though we partnered with several oncology clinics, the pace of recruitment was much slower than anticipated. Consequently during the 2-year study, we did not recruit 20 African-American families as initially planned and were unable to randomize half to the intervention group and half to the psychoeducation group. Our team tried several strategies to improve recruitment.
We first partnered with oncology providers at four northeastern urban oncology clinics who provide care to a large minority group of cancer patients, and they agreed to help us identify and recruit African-American parents coping with cancer in the past 12 months who are parenting school-age children. Although a prior research suggests that African-Americans generally do not trust medical providers due to a history of exploitation [2, 7, 9–12], the main reason we chose this recruitment strategy was our previous positive experience with this same group of oncology providers when we recruited African-American families for the first focus group study (described above in phase I). During our focus group study, we collaborated with the same urban oncology clinics and were able to recruit 12 African-American families in 6 months. We, therefore, expected this same recruitment strategy to work well for our 2-year pilot intervention program.
Additionally, extant literature suggests that sensitizing providers to the needs of African-American patients can improve recruitment [2–4, 9–11]. We have a close working relationship with an oncology social worker in three of the oncology clinics, who is a person of color and has access to all minority patients treated by each of the oncology clinics at the hospital. We believed that we had an “insider” on our side, who was trusted by minority cancer patients. We also had a close relationship with the nurse navigator who has access to all patients in two of the clinics and additionally met with oncologists in each clinic who expressed a willingness to help recruit for our study. Each month we met with support staff and oncologists during their monthly seminars, in addition to monthly meetings with the research coordinator and the oncology nurses. Our team contacted the clinics every week through telephone and/or emails to remind providers of our study, and we immediately followed up with any potential African-American patients interested in our support group study. Yet, even with weekly reminders and regular visits to all participating recruitment sites by our team, recruitment was slower than anticipated. Most families were recruited from one university-run oncology clinic through the social worker, and a few families were recruited from a smaller cancer clinic. Even with our continued efforts to partner with the oncology clinics, we still needed to ask for a 6-month no-cost extension from the funding agency because of our ongoing struggles recruiting enough African-American families.
In an effort to reach more possible participants, we reached out to a senior pastor at an African-American mega-church to see if there were families in his congregation interested in the support group program. After several networking meetings, the senior pastor invited the first author to attend three of his church services to announce the cancer support group study. This large church additionally has a monthly cancer ministry meeting in which church members reach out to members of the community who have been diagnosed with cancer to offer spiritual, emotional, and practical support. The first author and her team attended three of these meetings to provide information about the study. We hoped that this church partnership would improve our recruitment efforts, by collaborating and building trust with the church leadership. Although the senior pastor’s support was warm and inviting, no families from his large congregation volunteered for the support group study after we attended both the church services and the monthly cancer ministry meetings. Finally, we put 3 monthly advertisements in a free cancer support online newsletter announcing our support group study, yet no families contacted us.
Engagement and Retention Strategies and Successes
Based on findings from phase I, we recruited and trained a culturally informed group leader, provided financial help with transportation to all families, financial remuneration after completing sessions, refreshments during the support group sessions, and free babysitting for any younger children at home. Once families engaged in treatment, 90 % completed all sessions and reported that it helped their families cope with parental cancer. Engagement and retention of families was enhanced by the first author’s ability to build trust and personal connection to all parents from their first phone call inquiring about our study to completing the baseline assessments, five support group sessions, post-test assessments, and finally, follow-up after completing the support group study. Families were encouraged to personally interact and to openly communicate with the first author and her team by, for example, asking parents to call us by our first names, taking the time to call parents in between sessions to check in, involving parents in deciding about the best days and times to conduct the support group sessions, as well as asking about what types of refreshments they wanted for each session which demonstrated respect and care for parents and their school-age children during this tough time.
Demonstrating Cultural Sensitivity
We purposefully hired and trained a spiritually informed African-American female therapist for this pilot study. Prior research suggests that African-Americans prefer therapists of the same race and tend to have improved mental health outcomes when race is matched with clinical providers . Thus, the race of the participating families and therapist was matched for both the psychoeducation control group and the family intervention group and the same therapist ran both groups. The therapist (fourth author) noted the importance of her own personal awareness of African-American spirituality, culture, family, and social norms in connecting with the African-American parents and school-age children coping with parental cancer.
While delivering the two types of treatment, our therapist used a culturally sensitive clinical approach which helped to establish trust, engage, and retain the families. One way in which the therapist was culturally sensitive was by locating herself. Location of self involves a therapist’s intentional discussion of his/her own sociocultural identities (e.g., race, class, age) and how these different social locations may impact the therapy . The therapist in this study noted the importance of this self-disclosure and engagement and observed how it helped to build rapport and trust with the families. The therapist also highlighted and encouraged parents and their children to use strengths unique to the African-American community, including kinship bonds, strong religious and spiritual beliefs, adaptability of family roles, and a strong work and achievement orientation . She noticed that faith and spirituality were discussed more than religiosity during the support group sessions, and that faith and spirituality were invaluable resources especially for the African-American parents coping with cancer. Extended kin helped many families by providing both practical and emotional support, and the flexibility of family roles allowed for some of the older school-age children to temporarily take on more family responsibilities during their parent’s illness, especially during the chemotherapy treatment.
Providing a Safe Environment
The therapist joined with the parents and their school-age children by creating a safe and warm clinical environment promoting more open communication during both the three school-age support group sessions and the two multiple family therapy group sessions. She accomplished this by using an empathic non-judgmental approach, making eye contact, using additional self-disclosure as appropriate, and matching the body language of the participant she was engaging. She also identified potentially unexpressed feelings underneath participants’ statements and gently probed further into these feelings. The therapist noted that this technique was effective as participants felt that she truly cared about their stories and their struggles. When school-age child participants were reticent to openly talk during the support group sessions, the therapist did not pressure them but instead provided opportunities for them to comment on what other participants shared during the groups. The therapist took the time at the beginning of every session to reiterate the ground rules for engagement, which made parents and their school-age children feel safe and reassured them their confidentiality was maintained. Maintaining a safe environment within the support group sessions became especially important when a father participant in one of the family intervention groups unexpectedly passed away during the study. The therapist then had to do grief counseling with the group in order to help them process the loss. Given what a serious illness cancer is, therapists working with this population need to be prepared for potential losses and be comfortable doing grief counseling as needed.
Recruitment of African-American Families and Partnering with the African-American Community
Coker and Huang  describe several issues which can negatively affect African-Americans involvement in clinical research studies. These include the tendency of African-Americans to mistrust clinical researchers because of their history of exploitation, a lack of knowledge about research and the informed consent process, failure of researchers to actively recruit African-American participants, potential stigma for participants, and financial and structural barriers. We learned that it is very important to understand the historical context of African-Americans, to partner and to build trust with community leaders, and to engage in self-examination as clinical researchers.
We used similar strategies to overcome recruitment barriers, including partnering with both oncology providers and senior pastors at a large African-American church and their cancer ministry. We learned that it is important to carefully assess the population served at oncology clinics before beginning recruitment efforts in order to ensure that enough potentially eligible minority cancer patients are available and recruitment is feasible. For example, the first author later learned from the oncology social worker that African-American cancer patients served at two of the oncology clinics were older and therefore less likely to be raising school-age children. It is also important to maintain ongoing open communication with oncology providers and find other ways to help busy providers remember to introduce the study to potentially eligible participants, unless funding is available to hire staff who can be onsite and help to actively recruit minority oncology patients.
Reflecting on our process, we realize that more time was needed for trust to develop with the church and the African-American community [26, 27]. Since we started this church collaboration during the second year of our study (after recognizing that recruitment through the oncology clinics was not as successful as we expected), we did not have enough time to develop a stronger collaborative relationship. It took several months of meetings and preparation before we were approved by the senior church leaders to present our study to their congregation and to attend the monthly cancer ministry support group. By that time, only 6 months were left for us to complete the study (based on our funding contract). We were only able to attend three cancer ministry meetings which were probably not enough to become insiders rather than outsiders and to build credibility with the African-American church community.
Despite our concerted efforts to improve recruitment over the 2-year study, we were still unable to recruit enough African-American parents diagnosed with cancer. The biggest lesson we learned is that all of the strategies we used are not enough to overcome the understandable historical legacy of mistrust in the African-American community, and, as clinical researchers and oncology providers, we need to think and try harder to overcome them and to partner more closely with the African-American community. Researchers need to take into account that building trust takes time and patience, and it may take months or years of efforts before seeing results. In addition, perhaps conducting support group sessions within the African-American community (e.g., the church) and training trusted community leaders to deliver these services would have been a better way to overcome some of these barriers and facilitate recruitment [28–30].
Respecting African-American Parents
Once we recruited African-American parents, from the first phone call inquiring about the support group study to the follow-up, we treated them with respect and care and involved them in decision making whenever possible (e.g., type of refreshments, schedule of the support group sessions). Thus we were able to successfully engage and retain them. After parents started to trust the first author and her team, parents then encouraged their school-age children to attend the support group sessions and to receive help. Overall, African-American parents were very talkative, outspoken, and eager to support other parents and school-age children during the support group sessions. They actively reached out to other parents coping with cancer and encouraged not only their children but other parents’ children who were in the groups by directly talking to them and providing hope and encouragement. Parents in our study were very generative and wanted to give back to other families coping with parental cancer. Based on our experiences, we believe that training African-American parents who have navigated cancer while parenting school-age children and who live within the community to co-lead the support group sessions could potentially improve recruitment of African-American families coping with parental cancer.
Demonstrating Cultural Sensitivity
It is important to not only culturally adapt clinical models but also ensure that they are delivered in a culturally sensitive way. In order to successfully engage and retain African-American families, we learned that it is important to train an African-American therapist who can build trust with both the school-age children and their parents by demonstrating cultural sensitivity and providing a safe environment. Prior research suggests that African-Americans prefer therapists of the same race and tend to have improved mental health outcomes when race is matched with clinical providers . Thus, the race of the participating families and therapist was matched for both the psychoeducation treatment as usual group and the culturally adapted family intervention group; the same therapist ran both groups. The therapist (fourth author) noted the importance of her own personal awareness of African-American spirituality, culture, family, and social norms in connecting with the African-American parents and school-age children coping with parental cancer.
Clinical researchers need to improve the recruitment of minority oncology patients and their families in psychosocial intervention studies and support programs. More clinical research focusing on the best ways to integrate cultural sensitivity training into oncology practice settings can help to improve the well-being of African-American and other minority families coping with parental cancer. Many African-Americans tend first to seek support from their pastors or ministers during personal crises, and in some cases, they may be the only professionals encountered [27–30]. Black churches are where many African-Americans historically have gone and continue to go for help, and black clergy play a central role in advising congregants to seek outside support services . Since the local network of social relationships (e.g., family, friends, church, and school) plays a very important role among African-Americans seeking psychosocial support, clinical researchers should partner with African-American churches and communities. Developing these kinds of collaborations with church and community leaders in order to build trust may be the first step in understanding better ways to offer more culturally sensitive oncology psychosocial support. Although this type of partnering in our study was not successful in enhancing recruitment, it is possible that developing successful partnerships is a long-term process of trust-building in which the results are not immediate.
Further, in our program, we had the ability to pay participants for their time and for transportation. This is probably not a feasible option for other clinical settings interested in providing similar oncology support programs. Partnering with churches and offering these services within the church can provide participants with the motivation to attend since they attend the church on a regular basis for practical, emotional, and spiritual support [29, 30]. In addition, many churches have their own arrangements to help congregants with transportation if they are unable to get to the church by themselves, which can make it easier for participants to attend this type of cancer support program [12, 29].
Several specific recommendations can also be made from the lessons we learned in our study. The retention of participants may be affected by the level of cultural sensitivity demonstrated by providers. Intentional matching of therapist’s and participants’ race is one way to be culturally sensitive and to retain minority participants . Clinicians leading this type of intervention also need to locate themselves, be personable, and accessible to the participants, and maintain a safe environment so participants can feel comfortable. Despite having good evidence that our culturally adapted family support group program is effective for African-American families coping with parental cancer, if we cannot recruit minority families, then the potential benefits of the intervention are lost. Although we need to culturally adapt and evaluate more psychosocial cancer interventions and train more culturally sensitive providers, we learned that even more important is to first work harder to overcome the historical legacy of mistrust in the African-American community in order to better recruit and engage minority cancer patients and their families in need of psychosocial support.
We thank the families who volunteered for this pilot study at such a challenging time in their lives and the oncologists and medical staff who helped with the study, especially Donatella Richard, Dr. Ari Brooks and Drs. Lisa Jablon and Lori Jardines. We also thank Reverend Dr. Alyn E. Waller for his support of this study. This 2-year pilot study was funded by the BARRA Foundation, Philadelphia, Pennsylvania.
Conflicts of Interests
The authors declare that they have no conflict of interest.