‘We are survivors too’: African-American youths' experiences of coping with parental breast cancer (original) (raw)
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African American Parents' Experiences Navigating Breast Cancer While Caring for Their Children
Qualitative Health Research, 2012
African American parents who are navigating breast cancer while parenting their school-age children are an understudied population. We used family systems and sociocultural theories to conduct three focus groups with a total sample of 9 African American parents to understand how they cared for their school-age children (ages 11 to 18) while coping with the diagnosis and treatment of breast cancer. Our content analysis of these focus groups yielded themes that described a variety of ways they protected their children from the emotional consequences of breast cancer. Seven primary themes emerged: (a) increased desire to protect their children, (b) parental concerns for children's coping, (c) openness and transparency with children, (d) reliance on children for support, (e) calibration of their own responses, (f) use of the illness experience as a teachable moment for children, and (g) reliance on others for parenting support. Clinicians and researchers can improve their care by developing culturally sensitive family intervention programs that promote family resilience.
2020
PURPOSE To explore the experiences and needs of African American (AA) children and adolescents who were identified by a cancer survivor in their family as providing substantial supportive care during diagnosis and treatment. PARTICIPANTS & SETTING 5 AA young adults who provided care and support to a family member with cancer when they were aged 7-19 years and 4 cancer survivors from a northeastern U.S. city. METHODOLOGIC APPROACH Focus groups and interviews were conducted, recorded, transcribed, and analyzed using content analysis until thematic saturation was reached. FINDINGS Themes focused on AA young supporters' lack of cancer-related information, reduced ability to communicate needs, and challenged views of themselves, relationships, faith, and the future at the time that they provided support. IMPLICATIONS FOR NURSING Nurses can support AA children and adolescents in caregiving roles by assessing their needs and providing information on diagnosis and treatment. In addition...
Journal of Family Nursing, 2014
Few studies have explored how African American parents navigate breast cancer while parenting their school-age children. This focus-group study examined how African American parents cope with the diagnosis and treatment of breast cancer. Three focus groups were conducted with nine African American parents coping with breast cancer. Interviews were analyzed using content analysis. Participants described a variety of coping strategies. Five primary themes emerged: involvement in community of support, relationship with cancer, being the family emotional regulator, highlighting positives, and spirituality. Findings suggest that providers can improve the care of African American breast cancer patients and their families by facilitating patient advocacy, encouraging patients to reach out to various support systems, discussing with patients their children's functioning, and integrating
Journal of Cancer Education, 2012
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.
ADOLESCENTS COPING WITH MOM's BREAST CANCER: DEVELOPING FAMILY INTERVENTION PROGRAMS
Journal of Marital and Family Therapy, 2005
The purpose of this pilot study was to gain a deeper understanding of how adolescents are affected by their mothers' breast cancer and to discover their opinions about how future intervention programs should be designed. Three focus groups were conducted with a total of 10 adolescents. Findings indicate that adolescents' lives had been complicated by their mothers' illness, as they often felt burdened with additional roles and responsibilities. Adolescents suggested that future intervention programs should have the following elements: Adolescent group comprised of boys and girls within 4 months of cancer diagnosis; psychoeducation; target coping skills sensitive to girls and boys of different ethnic and racial backgrounds; and after the adolescent groups, have multiple-family therapy groups that promote shared family understanding and open communication between parents and adolescents.
Psychosocial Concerns of Young African American Breast Cancer Survivors
Journal of Psychosocial Oncology, 2012
Thirty-three African American breast cancer survivors age 45 or younger participated in semistructured phone interviews about psychosocial concerns. Twenty-six percent believed treatment interfered with employment. One third wanted additional emotional support at and after diagnosis. One half felt cancer negatively influenced romantic relationships. Forty-five percent wanted children at diagnosis, but one half these women never received fertility information. One third reported sexual problems, but 73% never discussed sexuality with providers. Fifty-two percent lacked information about cancer-related sexual dysfunction. The strength and spirituality of African American women may facilitate cancer adjustment, but cultural taboos surrounding women's health issues may interfere with successful coping.
Journal of Cancer Education, 2013
Background-Despite an overall decline in mortality, breast cancer is the most commonly diagnosed cancer and the second most common cause of cancer death among African American women. As such, clinicians should prepare to address the unique sociocultural and psychological concerns encountered by African American women breast cancer survivors. Objective-To examine, using qualitative methods, the main coping facilitators used by African American women as they transition across the cancer continuum. The identification of these facilitators was then aligned with culturally sensitive interventions most useful with women coping with cancer, along the cancer continuum. Methods-This was a secondary analysis of 20 video-taped stories of African American breast cancer survivors collected as a part of the Washington University Center for Excellence in Cancer Communications project. The interview began with a discussion of how the survivor first became aware she had breast cancer, followed by a series of open-ended probes used to explore the following themes: coping, relationships, health care system experiences, follow up care, and quality of life living with breast cancer. Results-Survivors discussed their experiences and advice for targeting needs at each cancer stage, from screening to diagnosis, treatment, and then survivorship. Survivor narratives point to key evidence-based clinical intervention strategies at each stage of the cancer trajectory. Conclusion-This study found that survivors see a cyclical cancer course, whereby African American breast cancer survivors serve an important role in the lives of unscreened women, newly diagnosed women, and women in treatment.
BMC Cancer
Background: African American adults experience a disproportionate burden and increased mortality for most solid tumor cancers and their adolescent children are negatively impacted by the illness experience. The purpose of this randomized clinical trial is to evaluate the efficacy of a culturally sensitive family-based intervention program developed for African American families coping with solid tumor parental cancer using an intention-to-treat approach. Primary outcome is adolescent depressive symptoms at end of treatment. Methods: A sample of 172 African American families will be enrolled from two diverse oncology centers (Helen Graham Cancer Center in Newark, DE, and Kimmel Cancer Center in Philadelphia, PA). Eligible families will be randomized either to a 5-session intervention Families Fighting Cancer Together (FFCT) or a 5-session parent-only psycho-educational (PED) program. Assessments will occur at weeks 0 (baseline), 8 (end-of-treatment), 24, and 52. Discussion: Treatments to help African American adolescents cope with the impact of parental cancer are scarce and urgently needed. If successful, this proposed research will change the nature of intervention support options available to African Americans, who are overrepresented and underserved by existing services or programs. Trial registration: This project is registered with ClinicalTrials.gov (Protocol #: NCT03567330).
Pacific Rim International Journal of Nursing Research, 2012
This qualitative descriptive study, among adolescent cancer survivors and their mothers, sought to explore the meaning of the adolescents' and their mothers': vulnerability to cancer recurrence; vulnerability to adverse late-effects of cancer treatment; views of current health status; views on treatment effects; and, roles and health-related behaviors. In-depth, open-ended interviews were conducted with 12 adolescent-mother dyads who were attending follow-up care at a tertiary oncology care setting in Bangkok, Thailand. Data were assessed using content analysis. Within perceived vulnerability to cancer recurrence, the adolescent-mother dyads described this theme in terms of: perceived risk; cancer-related beliefs; and, signs of recurrence. The second theme, perceived vulnerability to late-effects of cancer treatment, was presented in terms of potential major organ damage and signs of late effects of cancer treatment, while views of current health status, the third theme, was defined in terms of vulnerable health, and better or good health. Views of treatment effects on health, the fourth theme, was defined by the adolescent-mother dyads as physical, psychological, and cognitive functioning. The fifth theme, roles and health-related behaviors, was the only theme described slightly different between the adolescents and their mothers. The adolescents defined roles and behaviors as: staying healthy; protecting health; dealing with facilitators and barriers to staying healthy; and, self-care. Their mothers, however, perceived roles and behaviors as promoting and protecting the adolescents' health, and their own parenting behaviors. The findings provide a better understanding of adolescent cancer survivors and their mothers' perceptions, roles, and healthrelated behaviors, and how they can be incorporated into nursing practice to enhance the development of interventions to protect the health of adolescent survivors of childhood cancer.