Project Outline

Abstract 

Community-based organizations (CBOs) have emerged as a central way to provide psychosocial support directly to communities that are disproportionally affected by the burden of cancer. Social determinants of health, population risk, and gender all influence how individuals receive and respond to cancer care. The average woman in the US has a 1:8 chance of developing breast cancer and a 1:87 chance of developing ovarian cancer in her lifetime. It is also estimated that >1.5M cancer survivors in the US are simultaneously raising minor children, meaning that of those affected by breast and ovarian cancer in the US a large proportion are likely also mothers. Yet, little is known about the influence of a CBO’s programs and services on these mother’s levels of empowerment (e.g., their perceived control over their health decisions) or quality of life throughout their cancer journey. To study this, we will conduct a secondary data analysis among N= 1321 breast/ovarian cancer survivors who identify as mothers of only young children (<18 years old), mothers of both adult and minor children, or mothers of only adult children (>18 years old) who participated in a particular CBOs program and assess their level of satisfaction with the services, overall self-reported quality of life, patient navigation experience, and empowerment. We will also question how the status of these mothers (e.g., having adult or minor children) influences how they utilize services offered by the CBO that are specifically meant for mothers.  

Research Objectives & Questions:  

For this faculty-proposed project, as we continue to analyze our data set based on responses of two years of survey responses from Sharsheret’s (our CBO of interest) annual evaluation, our focus will be on mothers surviving breast or ovarian cancer.  

• Primary question: How does quality of life and overall satisfaction with services vary based on a patient being a mother younger (age <18) vs. adult (>= age 18) children? 
• Specific dependent variables we will look at include: quality of life, overall satisfaction with CBO services, experience with patient navigation, and patient empowerment. 
• Secondary objectives:  

• • How does a mother's age, her cancer type (breast cancer, ovarian cancer, or both), and cancer risk (BRCA mutation carriage), as well as other sociodemographic factors influence: 

• • • Quality of life 
    • Patient engagement and satisfaction with CBO services 
    • Empowerment 

• • • • Empowerment refers to responses regarding how empowered cancer patients feel to make decisions for their personal and physical well being.  

Background: 

The average woman in the US has a 1:8 chance of developing breast cancer, and a 1:87 chance of developing ovarian cancer in her lifetime. It is also estimated that >1.5M cancer survivors in the US are simultaneously raising minor children (Weaver et al., 2010), and >80% of women in their 40s have had a biological child (Martinez & Daniels, 2023). Despite the prevalence of young breast/ovarian cancer (BC/OC) survivors who are mothers, little attention has been paid to how to meet the information and support needs of this population that is tailored to the demands of parenting. Patients with BC/OC who have children often face unique challenges since they are both mother and patient simultaneously--and often in a lifestage that intersects with professional development. As patients, they often struggle to strike a balance between everyday childrearing and speaking with their children about cancer (Arida et al., 2019; Davey et al., 2012; Fisher & O’Connor, 2012). Community-based support programs have the opportunity to expand resources to reach minority populations who’s needs are often overlooked by traditional oncology specialty sites (Guan et al., 2021). 

 Community-based organizations (CBO) are integral in connecting health services, which include social and psychological care, with those who have experienced or are experiencing cancer to assist them with needs ranging from financial support to child care (Shelby et al., 2002; Wilson et al., 2012). Thus, CBOs present a good opportunity for providing tailored social services to mothers with BC/OC, especially in populations such as the Ashkenazi Jewish population of whom it is estimated 1:40 are BRCA1/2 pathogenic variant carriers compared to the general population where the prevalence is 1:400 (Anglian Breast Cancer Study Group, 2000; Frey et al., 2024). In a population of mothers who identify ethnoculturally as Jewish, special consideration must be given to how programs and social services interact with the religious and cultural character of the populations they serve (Frey et al., 2024). Sharsheret is one such non-profit CBO which aims to connect Jewish women of all backgrounds with no-cost, culturally-targeted resources throughout their cancer journey, including services for mothers undergoing treatment. Evaluation of their annual surveys provides evidence for how these services are being utilized and perceived by mothers, highlighting the role of patient navigation and empowerment in providing support (Tercyak et al., 2011). However, little consideration has been given to how mothers specifically use these services, especially if they are mothers of only minor (<18) or only adult (18+) children. This question comprises the basis of this exploration, which also seeks to understand how the age of a mother’s children influences her quality of life, satisfaction with the CBO, patient navigation experience, or feelings of empowerment.  

Methodology: 

This study is a secondary analysis of previously-collected annual self-report evaluations collected by a CBO serving cancer previvors and survivors. The annual survey collects information about the sociodemographic and clinical character of people who participate in the CBO’s psychoeducational programs, and their satisfaction with these programs. This analysis has been adapted to specifically analyze community support programs for women surviving breast and ovarian cancer. Participants will be drawn from a combined 2022 and 2023 survey dataset, under an IRB-approved protocol. Participants who are mothers of only minors (n = 412), both adults and minors (n = 166), or only adult children (n= 743) will be identified and compared through various statistical testing. 

Potential Impact:  

Understanding the extent to which a CBO that provides no-cost services to the Jewish community and others can meet the needs of Jewish mothers throughout their BC/OC journey will contextualize how CBOs can support at-risk minority populations. Identifying points of success and improvement in the CBO’s services can inform other CBOs about how they can optimize their patient navigation experience and tailor their psychosocial services to the needs of mothers. Mothers of adults and those of minors may require different types of services and support, across cultural differences motherhood remains an important factor in the larger burden of cancer. Community-focused thinking is increasingly becoming a large part of cancer care and prevention services. Services utilized in one community could be adapted and implemented in other communities for better cancer care results. These programs have the opportunity to address disparities in care for mothers surviving BC/OC who are particularly vulnerable to lower quality of life and who may be struggling to be both empowered mothers and patients.    

Resources & Support Needed: 

This work would not be possible without the guidance of my faculty mentor, Dr. Kenneth P. Tercyak, as well as our lab project manager Marcelo M. Sleiman, Jr. The fellowship is providing me with the dedicated time and effort required to train in Dr. Tercyak’s lab, learn about hypothesis-development and statistical testing, data cleaning and analysis, and interpretation. 

Please feel free to contact me with any questions or feedback regarding my summer research!