Supporting our survivors: an evaluation of the facilitators and barriers to advocacy in cervical and breast cancer survivors.

PURPOSE

This study aimed to evaluate the facilitators and barriers to self-advocacy and advocacy in the community of cervical and breast cancer survivors.

METHODS

A mixed-methods approach was used to collect data from patients with breast and cervical cancer. Qualitative interviews were conducted after presenting for routine oncologic follow-up appointments All interviews were transcribed and coded by two separate investigators. The Female Self-Advocacy in Cancer Survivorship Scale (FSACS) was administered and demographic data were collected to quantitatively evaluate self-advocacy behaviors and socioeconomic characteristics in the two groups.

RESULTS

Twenty-one patients were interviewed: 11 cervical cancer (CC) patients and 10 breast cancer (BC) patients. The median age was 47 years, with approximately half having early-stage disease and half having advanced or recurrent disease. The facilitators to self-advocacy included being open with their support system, wanting more information, and being determined to fight. Barriers to self-advocacy included fear, not opening up to family and friends, and not wanting additional information. Facilitators to advocacy in the community were talking with their children about their diagnosis, having an interest in support groups, and a desire to help. Barriers to community advocacy included not always feeling supported, a lack of confidence, and a lack of understanding of their disease process. CC participants scored lower on the FSACS survey compared to BC patients, with mean scores of 95 and 107, respectively.

CONCLUSIONS

Facilitators to advocacy involve having a strong social network and a determination to fight or desire to help. Barriers include fear, lack of confidence, and lack of knowledge. Increasing resources to encourage social connection, education, and advocacy opportunities can positively impact cancer survivors well-being.