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. 2025 Jan-Dec:32:10732748251351105.
doi: 10.1177/10732748251351105. Epub 2025 Jun 14.

" How am I Going to Live? How am I Going to Pay Rent?": A Mixed Methods Investigation of Employment, Stigma, and Financial Hardship Among LGBTQ+ Cancer Caregivers

Austin R Waters  1 , Erin E Kent  1   2 , Camille R Murray  1 , Shaun R Jones  3   4 , Echo L Warner  5   6 , Lorinda A Coombs  2   7 , Heidi Donovan  8   9 , Hazel B Nichols  3 , Stephanie B Wheeler  1   2 , Donald L Rosenstein  2   10   11 , Mya L Roberson  1   2 , Kelly R Tan  8   9
Affiliations

" How am I Going to Live? How am I Going to Pay Rent?": A Mixed Methods Investigation of Employment, Stigma, and Financial Hardship Among LGBTQ+ Cancer Caregivers

Austin R Waters et al. Cancer Control. 2025 Jan-Dec.

Abstract

IntroductionEmployment changes among cancer caregivers are common and can result in financial hardship. Lesbian, gay, bisexual, transgender, queer, and other identities outside of cisgender heterosexual (LGBTQ+) individuals are more likely to live in poverty and experience workplace discrimination than non-LGBTQ+ individuals. This study aimed to assess the impact of caregiving-related employment changes and anti-LGBTQ+ stigma on financial hardship and describe lived experiences with financial hardship and related employment changes among LGBTQ+ cancer caregivers.MethodsAn explanatory mixed-methods study was conducted and included a national survey and individual interviews with survey participants. Multivariable logistic regression models were used to test the association of employment changes with financial hardship. An inductive qualitative analysis guided by two of the three domains of financial hardship (ie, material and behavioral) was conducted. Quantitative and qualitative data were integrated throughout the study.ResultsA total of N = 332 LGBTQ+ cancer caregivers participated in the survey, and N = 14 participated in an interview. The average modified COmprehensive Score for financial Toxicity and Caregiver Reaction Assessment financial sub-scale were 25.6 (SD: 9.9, Range: 1-44) and 2.99 (SD: 1.0, Range: 1-5). Employment changes (OR: 3.32, 95% CI: 1.73-6.36) and anti-LGBTQ+ stigma (OR: 2.21, 95% CI: 1.47-3.32) were associated with high financial hardship. Three overarching themes from the qualitative analysis included: 1) Financial Hardship: Increased Costs, Strained Finances, and Lost Wages; 2) Caregiving as an LGBTQ+ Person: Stigma, Outness, and Expectations; and 3) Financial Unmet needs and Recommendations.ConclusionLGBTQ+ cancer caregivers experience substantial financial hardship that is associated with employment changes and anti-LGBTQ+ stigma. LGBTQ + cancer caregivers reported varying levels of outness and acceptance that directly influenced their access to financial support. Cancer-related financial hardship interventions tailored to the needs of LGBTQ+ individuals are needed.

Keywords: LGBT; LGBTQ+; SGM; cancer caregiver; employment; financial hardship; financial toxicity.

Plain language summary

LGBTQ+ cancer caregivers face financial hardship associated with job changes and stigma. Why was the study done? Caring for a loved one with cancer can be expensive, and many caregivers have to change or leave their jobs, leading to financial strain. LGBTQ+ individuals are more likely to face financial challenges and workplace discrimination, which may make caregiving even harder. This study aimed to understand how employment changes and LGBTQ+ stigma was associated the financial well-being of LGBTQ+ cancer caregivers. What did the researchers do? The researchers conducted a national survey of 332 LGBTQ+ cancer caregivers and interviewed 14 of them to learn more about their experiences. They analyzed the survey data to identify factors linked to financial hardship and examined the interviews to understand the challenges caregivers face. What did the researchers find? Many LGBTQ+ caregivers experienced significant financial hardship. Caregivers who had to change/quit jobs had more than three times the odds of financial difficulties. Those who experienced anti-LGBTQ+ stigma were also more likely to struggle financially. The interviews revealed three major themes that revolved around financial burden, LGBTQ+ identity and varying levels of support, as well as unmet financial needs. What do the findings mean? LGBTQ + cancer caregivers face serious financial challenges, especially when they have to change jobs or encounter stigma. Support programs should consider the unique needs of LGBTQ+ caregivers and work to reduce financial hardship and stigma.

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Conflict of interest statement

Declaration of Conflicting InterestsThe authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: SBW receives unrelated grant funding paid to her institution from the Pfizer Foundation and Astra Zeneca. MLR receives unrelated consulting fees from the National Committee for Quality Assurance.

Figures

Figure 1.
Figure 1.
Mixed Methods Integration of Measures and Conceptual Model of LGBTQ + Cancer Caregiver Financial Hardship. Conceptual Model was Informed by the NIH SGM Disparities Framework
Figure 2.
Figure 2.
Financial Hardship and Employment Changes Among LGBTQ + Cancer Caregivers. CRA Questions Were Asked on a 5-Point Likert Scale With ‘Agree’ or ‘Agree a Lot’ Displayed Above. Summary Statistics of Financial Hardship and Employment Changes Reflect the Survey Sample (n = 332), while Qualitative Quotes Represent the Interview Sample (n = 14)
Figure 3.
Figure 3.
Caregiving as an LGBTQ + Person: Stigma, Outness, and Expectations Among LGBTQ + Cancer Caregivers. Summary Statistics of Outness and Groups of People Least Out to Reflect the Survey Sample (n = 332), while Qualitative Quotes Represent the Interview Sample (n = 14)
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