Background: Young women (20-39 years old) with a gynecologic oncology diagnosis have “increased anxiety, depression, and distress”1 when compared with older cancer survivors. Risk factors for maladjustment of young women with gynecologic cancers include “younger age and coping using a disengaged style.”2 They also have unique challenges, which can include “premature confrontation with mortality; changes in physical appearance; increased dependence on parents; disruptions of social life, education, or employment due to treatment; loss of reproductive capacity; and health-related concerns about the future.”3 Austin, TX, has a dense young adult population,4 with 23% of the gynecologic oncology patients navigated at St. David’s North Austin Medical Center being young women of childbearing age (<45 years). With few affordable psychosocial support resources within the community, many of these patients are at risk of having unmet psychosocial needs with resulting maladjustment. During an interview with the Gyn/Onc nurse navigator, either via phone or in a face-to-face meeting, a majority of these patients (98%) verbalized unmet psychosocial needs, including a sense of isolation and a desire for connection with peers via an on-site peer support group.
Objective: To create a peer support group that meets the psychosocial and emotional needs of young women diagnosed with gynecologic cancers.
Methods: At St. David’s North Austin Medical Center in Austin, TX, the gynecologic oncology nurse navigator created a phone survey and contacted a list of newly diagnosed (within the year of 2018) patients. Survey results showed 98% desired an on-site support program. Investigation into affordable community resources revealed only 1 support group available to adult gynecologic oncology patients, and it did not offer meetings specific to young women.
Potential speakers, topics, and group protocols were determined in a second web-based survey. Topics and potential speakers included integrative medicine, sexual changes/challenges after cancer diagnosis, and fear management. Protocols included frequency of meetings, time designation and length, participation in public education, and possible spousal participation.
Barriers identified were establishing a time and setting, childcare needs, and agreement on spousal participation. All barriers were addressed and resolved either through a second web-based survey or an on-site written survey.
Attendance is recorded at each meeting, and program efficacy is measured through verbal feedback after each meeting along with quarterly evaluations.
Results: Based on these results, a Young Women’s Gynecologic Oncology Group was formed and began meeting in January 2019. This support group has served over 15 patients and has met 5 times since forming. Psychosocial needs identified in each meeting serve as topics of discussion for future meetings. Also, it has served to build an emotionally present and supportive community within their peer group. Recent evaluation shows 99% of participants report increased emotional well-being through better coping skills and increased sense of community. One patient whose treatment required surgical intervention only felt increased distress related to testimonies of patients on chemotherapy.
Conclusion: Based on survey data collected, a peer-based, age-appropriate support group can help deter maladjustment and promote emotional well-being for young gynecologic oncology patients.
References
- Leuteritz K, Friederich M, Nowe E, et al. Life situation and psychosocial care of adolescent and young adult (AYA) cancer patients – study protocol of a 12-month prospective longitudinal study. BMC Cancer. 2017;777:82.
- Pearman T. Quality of life and psychosocial adjustment in gynecologic cancer survivors. Health Qual Life Outcomes. 2003;1:33.
- Bleyer A, Barr R, Ries L, et al. Cancer in Adolescents and Young Adults. 2nd ed. Cham, Switzerland: Springer International Publishing; 2017.
- Austin Chamber. Greater Austin Profile. www.austinchamber.com/economic-development/austin-profile/population. Accessed May 23, 2019.