Mission Define
Summary
Group-based organizations (CBOs) have emerged as a central manner to supply psychosocial assist on to communities which can be disproportionally affected by the burden of most cancers. Social determinants of well being, inhabitants danger, and gender all affect how people obtain and reply to most cancers care. The typical girl within the US has a 1:8 likelihood of growing breast most cancers and a 1:87 likelihood of growing ovarian most cancers in her lifetime. It is usually estimated that >1.5M most cancers survivors within the US are concurrently elevating minor kids, which means that of these affected by breast and ovarian most cancers within the US a big proportion are possible additionally moms. But, little is thought concerning the affect of a CBO’s applications and companies on these mom’s ranges of empowerment (e.g., their perceived management over their well being selections) or high quality of life all through their most cancers journey. To review this, we are going to conduct a secondary knowledge evaluation amongst N= 1321 breast/ovarian most cancers survivors who determine as moms of solely younger kids (<18 years outdated), moms of each grownup and minor kids, or moms of solely grownup kids (>18 years outdated) who participated in a selected CBOs program and assess their stage of satisfaction with the companies, general self-reported high quality of life, affected person navigation expertise, and empowerment. We can even query how the standing of those moms (e.g., having grownup or minor kids) influences how they make the most of companies provided by the CBO which can be particularly meant for moms.
Analysis Aims & Questions:
For this faculty-proposed challenge, as we proceed to investigate our knowledge set based mostly on responses of two years of survey responses from Sharsheret’s (our CBO of curiosity) annual analysis, our focus will likely be on moms surviving breast or ovarian most cancers.
- Main query: How does high quality of life and general satisfaction with companies differ based mostly on a affected person being a mom youthful (age <18) vs. grownup (>= age 18) kids?
- Particular dependent variables we are going to have a look at embody: high quality of life, general satisfaction with CBO companies, expertise with affected person navigation, and affected person empowerment.
- Secondary goals:
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- How does a mom’s age, her most cancers sort (breast most cancers, ovarian most cancers, or each), and most cancers danger (BRCA mutation carriage), in addition to different sociodemographic components affect:
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- High quality of life
- Affected person engagement and satisfaction with CBO companies
- Empowerment
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- Empowerment refers to responses concerning how empowered most cancers sufferers really feel to make selections for his or her private and bodily properly being.
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Background:
The typical girl within the US has a 1:8 likelihood of growing breast most cancers, and a 1:87 likelihood of growing ovarian most cancers in her lifetime. It is usually estimated that >1.5M most cancers survivors within the US are concurrently elevating minor kids (Weaver et al., 2010), and >80% of girls of their 40s have had a organic little one (Martinez & Daniels, 2023). Regardless of the prevalence of younger breast/ovarian most cancers (BC/OC) survivors who’re moms, little consideration has been paid to methods to meet the data and assist wants of this inhabitants that’s tailor-made to the calls for of parenting. Sufferers with BC/OC who’ve kids usually face distinctive challenges since they’re each mom and affected person simultaneously–and usually in a lifestage that intersects with skilled growth. As sufferers, they usually wrestle to strike a steadiness between on a regular basis childrearing and talking with their kids about most cancers (Arida et al., 2019; Davey et al., 2012; Fisher & O’Connor, 2012). Group-based assist applications have the chance to develop assets to succeed in minority populations who’s wants are sometimes neglected by conventional oncology specialty websites (Guan et al., 2021).
Group-based organizations (CBO) are integral in connecting well being companies, which embody social and psychological care, with those that have skilled or are experiencing most cancers to help them with wants starting from monetary assist to little one care (Shelby et al., 2002; Wilson et al., 2012). Thus, CBOs current alternative for offering tailor-made social companies to moms with BC/OC, particularly in populations such because the Ashkenazi Jewish inhabitants of whom it’s estimated 1:40 are BRCA1/2 pathogenic variant carriers in comparison with the final inhabitants the place the prevalence is 1:400 (Anglian Breast Most cancers Research Group, 2000; Frey et al., 2024). In a inhabitants of moms who determine ethnoculturally as Jewish, particular consideration have to be given to how applications and social companies work together with the non secular and cultural character of the populations they serve (Frey et al., 2024). Sharsheret is one such non-profit CBO which goals to attach Jewish ladies of all backgrounds with no-cost, culturally-targeted assets all through their most cancers journey, together with companies for moms present process remedy. Analysis of their annual surveys supplies proof for the way these companies are being utilized and perceived by moms, highlighting the position of affected person navigation and empowerment in offering assist (Tercyak et al., 2011). Nevertheless, little consideration has been given to how moms particularly use these companies, particularly if they’re moms of solely minor (<18) or solely grownup (18+) kids. This query includes the idea of this exploration, which additionally seeks to know how the age of a mom’s kids influences her high quality of life, satisfaction with the CBO, affected person navigation expertise, or emotions of empowerment.
Methodology:
This research is a secondary evaluation of previously-collected annual self-report evaluations collected by a CBO serving most cancers previvors and survivors. The annual survey collects details about the sociodemographic and medical character of people that take part within the CBO’s psychoeducational applications, and their satisfaction with these applications. This evaluation has been tailored to particularly analyze neighborhood assist applications for girls surviving breast and ovarian most cancers. Contributors will likely be drawn from a mixed 2022 and 2023 survey dataset, beneath an IRB-approved protocol. Contributors who’re moms of solely minors (n = 412), each adults and minors (n = 166), or solely grownup kids (n= 743) will likely be recognized and in contrast by way of numerous statistical testing.
Potential Affect:
Understanding the extent to which a CBO that gives no-cost companies to the Jewish neighborhood and others can meet the wants of Jewish moms all through their BC/OC journey will contextualize how CBOs can assist at-risk minority populations. Figuring out factors of success and enchancment within the CBO’s companies can inform different CBOs about how they will optimize their affected person navigation expertise and tailor their psychosocial companies to the wants of moms. Moms of adults and people of minors could require various kinds of companies and assist, throughout cultural variations motherhood stays an necessary issue within the bigger burden of most cancers. Group-focused considering is more and more turning into a big a part of most cancers care and prevention companies. Providers utilized in a single neighborhood may very well be tailored and applied in different communities for higher most cancers care outcomes. These applications have the opportunity to deal with disparities in look after moms surviving BC/OC who’re significantly susceptible to decrease high quality of life and who could also be struggling to be each empowered moms and sufferers.
Sources & Help Wanted:
This work wouldn’t be doable with out the steerage of my college mentor, Dr. Kenneth P. Tercyak, in addition to our lab challenge supervisor Marcelo M. Sleiman, Jr. The fellowship is offering me with the devoted effort and time required to coach in Dr. Tercyak’s lab, find out about hypothesis-development and statistical testing, knowledge cleansing and evaluation, and interpretation.
Please be at liberty to contact me with any questions or suggestions concerning my summer time analysis!
