A qualitative analysis of social concerns of women with ovarian cancer

A diagnosis of ovarian cancer requires a woman to reevaluate her interactions with family, friends, and employers, and cope with unexpected and unwanted changes in areas spanning from financial stability to sexuality and fertility. Social well-being is the aspect of a patient's overall quality of life that encompasses these topics, as it has evolved to represent activities related to roles and relationships at work and at home. The purpose of this study was to explore the social well-being of women with ovarian cancer to better define their needs for the health care community. Data consisted of all correspondence (n = 21,806) sent to 'Conversations!: The newsletter for those fighting ovarian cancer' by women with ovarian cancer from 1994 to 2000. Using ethnographic, qualitative research methods, statements related to the impact of disease were bracketed and coded within physical, psychological, social, and spiritual domains according to the City of Hope Quality of Life Ovarian Cancer Instrument. Comments reflecting social well-being were categorized in sub-themes and reviewed for content. Statements related to social support were most common (n = 251) reflecting the need for support from family, friends, and other women with ovarian cancer. Distress regarding the genetic association of the disease comprised a major theme (n = 73). Family relationships were also discussed (n = 146) in light of the stress of changing roles and relationships at home. Issues related to employment and returning to work (n = 74) focused on both the difficulties in taking time off work to receive treatment and sense of achievement felt upon returning to work and regaining normalcy. The themes identified in this study challenge healthcare professionals to provide increased disease-specific support, as well as concomitant support for husbands/partners and children of patients. Additional information on genetic testing and counseling for women at-risk due to a family history of ovarian cancer is also needed.