The impact of cervical cancer and dysplasia: a qualitative, multiethnic study

Study purpose: Cervical cancer (CCA) remains a health challenge nationally and globally. In the US, more than 12,000 women are diagnosed each year with invasive cervical cancer and more than 220,000 are living with a history of this diagnosis (ACS, 2003). This qualitative study aims to examine health related quality of life (HRQOL) from a culturally consistent framework.

Methods: Key-informant interviews (N = 23) and focus group interviews (N = 51) were conducted with a multiethnic sample of cervical cancer survivors (CCS) recruited from hospitals and clinics. ANALYSES AND RESULTS: Content and theme analyses were conducted. Findings indicate that cultural and family factors often promote coping and well-being, but may foster delay in care seeking and self-deprecation, particularly among Latina and Asian CCS. Faith in God was relied on for comfort, strength and healing by many survivors, especially the African Americans and Latinas. Overall, our participants reported moderate HRQOL. However, persistent concerns included treatment side-effects; difficulties accessing quality care; inadequate health insurance, barriers to good physician-patient relationship such as language and doctors' time constraints; insufficient knowledge about CCA due to limited information from medical staff; lack of control over treatments; social support, family well-being, functional and work issues; and sexuality and relationship concerns. Socioeconomic status, ethnicity, cultural beliefs and practices, age and family support dictated the level of cancer-related burden.

Conclusion: Invasive CCA is primarily a cancer of women who are economically disenfranchised. Women with a CCA diagnosis are disproportionately challenged by lack of resources including quality, affordable health care and psychosocial services. CCS experience persistent medical, psychological, social, and relational concerns. Information concerning CCS is needed, particularly in Spanish, Vietnamese and Korean. There is an urgent need for further research to understand the risk factors, and the social and cultural mediators of cancer-related HRQOL for CCS.