Background: Over the course of 2 years, Saint Luke’s Hospital Koontz Center for Advanced Breast Cancer hosted 3 weekend-long therapeutic retreats for women with metastatic breast cancer and their significant others. The 3-day program was based on A Journey of Courage and Hope Retreat protocol by Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG. At the end of each retreat, all participants completed open-ended survey questions about their experience. This quality improvement research project reviewed the responses to improve and enhance the retreat curriculum.
Methods: This qualitative research project analyzed the responses of 52 individuals who participated in a 3-day therapeutic retreat for women with metastatic breast cancer (n = 26) and their caregivers (n = 26). Attendees completed open-ended survey questions at the end of the retreat. The responses were divided into patient and caregiver groups, de-identified, consolidated, and transcribed. A hermeneutic qualitative data analysis was performed by a multidisciplinary quality improvement team, and thematic clustering results were compared and reported in a quality improvement plan format.
Results: Qualitative analysis revealed different themes of experience between the patient group of women with stage IV breast cancer and the caregiver group of significant others.
Both groups experienced meaningful emotional connections with their partners and other attendees:
“[At the retreat] I realized that no matter what, we are here for one another. And that there are others who can help pull through when the times seem so hard.”
“[Because of the retreat] it was actually easier to talk to my wife about her conditions and what she wants and needs from me. We had a hard time opening up our feelings before this weekend.”
Both groups expressed appreciation for quality time and fun with their partner:
“The prom was fun. It helped remind me that I still have my wife to share my life with, and we can still have fun and share good experiences while traveling down this road.”
“The moments that meant a lot to me included spending time with my mom and sister. The free time allowed my mom, sister, and I to process together.”
Patients reported being relieved by sharing their experiences with others in general, and in particular with other women with metastatic disease:
“[What meant the most to me was] the women sharing their stories, seeing how they struggle, and realizing what I’m feeling is ‘normal’ for a metastatic patient.”
Caregivers reported a new or heightened sense of awareness of their need for personal support:
“I’ve had more anger and emotion bottled up in me than I realized. It has caused me to lose faith, to lose focus on what I have for focusing on what we lost. I will start focusing on the good and perhaps healing.”
Conclusions: These findings confirm established understanding of the benefits received when women with breast cancer connect with other breast cancer patients. However, the results suggested that patients with metastatic disease may especially value the opportunity to talk with other stage IV patients who share their unique experiences. This finding encourages clinical and community efforts to create support groups specific to advanced breast cancer populations. Results from this analysis also illuminated an unmet need for caregiver emotional support, and this finding urges psychosocial service providers to incorporate caregiver-sensitive screening and goals when treating metastatic populations. Overall, the findings suggest that both patients and caregivers benefited from the opportunity to discuss the difficult emotional aspects of metastatic breast cancer diagnosis and treatment.
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