“ 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

Abstract

Introduction

Employment 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.

Methods

An 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.

Results

A 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.

Conclusion

LGBTQ+ 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.

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.

Keywords

LGBTQ+LGBT SGM cancer caregiver financial hardship financial toxicity employment

Introduction

Cancer caregivers provide unpaid care to care recipients (ie, cancer patients and survivors) across the cancer continuum. Caregivers assist with a variety of tasks, including helping to manage side effects, activities of daily living, healthcare decision-making, and providing emotional and logistical support.^1,2 Caregiving can be a time-intensive responsibility, with cancer caregivers providing up to 33 hours of care per week and 63% reporting changes to their employment as a result of caregiving responsibilities.^3,4 Due to the high intensity of cancer caregiving, caregivers often report reducing their work hours, taking time off, and shifting their schedules to accommodate caregiving.^5,6 Such employment changes have been observed to significantly reduce the earning potential of caregivers. Paired with the increased costs of providing care, employment changes result in substantial financial hardship among caregivers, further compounding the financial burden of cancer—which has largely been discussed in the context of those diagnosed with cancer.^7,8

Lesbian, gay, bisexual, transgender, queer, and other identities outside of cisgender heterosexual (LGBTQ+) cancer survivors experience an elevated burden of financial hardship.^9-11 LGBTQ+ cancer survivors are more likely to report difficulty paying medical bills (material financial hardship), stress or worry about paying medical bills (psychological financial hardship), as well as coping behaviors such as cost-related delayed or foregone care as well as cost-related prescription medication alterations (behavioral financial hardship).^10,12 At the same time, due to structural anti-LGBTQ+ stigma, LGBTQ+ individuals are more likely to experience workplace discrimination and poverty than non-LGBTQ+ individuals.^13,14 Such economic inequities likely worsen caregiver-related financial hardship experienced by LGBTQ+ cancer caregivers. However, the literature lacks in-depth investigations of financial hardship among LGBTQ+ cancer caregivers.

To address a gap in the literature, we conducted an explanatory sequential mixed-methods study focused on the financial hardship experienced by LGBTQ+ cancer caregivers. 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.

Methods

An explanatory mixed-methods study design was used to describe the financial hardship experienced by LGBTQ+ cancer caregivers.¹⁵ First, we surveyed LGBTQ+ cancer caregivers about their financial hardship, employment, and caregiving experiences. We then conducted one-on-one interviews with a subset of survey participants who experienced high financial hardship to describe their lived experience of financial hardship and providing care as an LGBTQ+ person.

Survey Participants and Data Collection

Eligible survey participants were living in the United States (US), at least 18 years of age, provided unpaid care to a person with cancer in the past three years, and identified with at least one LGBTQ+ identity. Caregivers could have any relationship with the care recipient. The online survey was administered by the study team and paid survey company using Qualtrics. Screener questions assessed eligibility before consent. Consent was obtained when asking participants to read a study information consent sheet and proceed to the survey. Recruitment occurred between April and December 2024 through the National LGBT Cancer Network, LGBTQ+ Pride events, a paid survey company (academic and market research firm), cancer/caregiving organizations, social media, LGBTQ+ organizations, adolescent and young adult cancer programs, as well as study advisory boards and study cohorts that agreed to be recontacted. Participants received $10 for a completed survey.

Survey Design, Measures, and Quality

An interdisciplinary team of clinical and non-clinical health services researchers developed the survey. The survey included questions on caregiver demographics, employment and financial well-being, LGBTQ+ outness and stigma, and other domains not reported here. Financial hardship questions included the 3-item financial hardship subscale of the Caregiver Reaction Assessment (CRA) and the 11-item COmprehensive Score for financial Toxicity modified for caregivers (mCOST).^18,19 mCOST scores range from 0-44, with higher scores indicating less financial toxicity. The mCOST score was dichotomized into high (mCOST<22) and low financial hardship (mCOST $\geq$ 22) based on a common cutoff from the literature.^19,20 CRA financial hardship subscale score ranged from 1-5, with higher scores indicating more financial hardship. Each CRA question was also dichotomized (agree/agree a lot = 1; neither agree nor disagree/disagree/disagree a lot = 0). Change in employment was assessed with one ‘select all that apply’ question asking how participants’ employment changed because of caregiving (eg, no change, increase in hours per week, finding an additional job, decrease in hours per week, taking paid time off, taking unpaid time off, changing job duties, and leaving their job permanently). Due to limited sample size, change in employment as also dichotomized (any change in employment = 1; no change in employment = 0).

LGBTQ+ outness was captured with two questions: first asking participants how open they are about their LGBTQ+ identity (5-point Likert) and then a single ‘select all that apply’ question asking which groups of people they consider themselves to be the least out to (parents, siblings, extended family, straight friends, work peers, work boss, members of religious community, leaders of religious community, strangers, care recipients healthcare providers, their own healthcare providers). Perceived LGBTQ+ stigma was captured using a 4-item modified version of the Sexual Stigma Scale (4-point Likert) to be inclusive of all LGBTQ+ identities, not just sexual minorities.²¹ Perceived anti-LGBTQ+ stigma scores ranged from 1-4 with higher scores indicating more perceived stigma.

The online survey was monitored for responses from internet bots and scammers. Non-valid survey responses were identified through a variety of mechanisms, including duplicate IP addresses, speeding (ie, taking the survey in less than 10 min), misalignment between responses to three open-ended questions that followed close-ended questions on the same topic (ie, financial hardship, caregiving situation, LGBTQ+ identity), IP addresses outside of the US, as well as deploying a Stata module to detect fraud in online surveys.²² The fraud module utilizes an IP verification service to identify the use of virtual personal networks (VPN) and bot responses via an API. Potential respondents received a warning message to disable VPN use before taking the survey. Furthermore, duplicate or near duplicate responses (often artificial intelligence generated) were further evaluated by the study team in conjunction with other responses in the survey to assess validity. Non-valid survey responses identified through any of the mechanisms above were removed from the dataset prior to data cleaning and analyses.

Quantitative Data Analysis

Summary statistics were used to describe the survey sample and each of the financial hardship measures. Differences in mCOST scores across employment changes, people least out to, and caregiver relationship (eg, spouse/partner, sibling, parent, grandparent, friend/chosen family, other) were assessed using individual two-way T-tests or ANOVA tests. A multivariable logistic regression model was conducted to assess the association between employment changes and dichotomized mCOST controlling for caregiver relationship to the care recipient, perceived anti-LGBTQ+ stigma, age, gender, sexual orientation, and race and ethnicity. In a second multivariable logistic regression model, an interaction term was added to assess whether perceived LGBTQ+ stigma moderated the relationship between employment changes and financial toxicity. Statistical significance was pre-defined as P-value <.05. All statistical analyses were conducted using complete case analyses in Stata 17. Both models included 85% of the sample and were similar demographically to those who were excluded from the models due to missing data. Notably, the individuals who were excluded from the models were significantly older than those who were included in the models.

Interview Participants and Data Collection

Survey participants who reported any financial hardship were prioritized for interview recruitment (September-December 2024, mostly taking place after the 2024 presidential election). Interview participants were recruited until the first and senior authors (ARW and KRT) deemed there to be sufficient information power (ie, an alternative to saturation). Information power was assessed through five domains: 1) the study aim to be specific, 2) the sample to be narrow, 3) guided by theory, 4) high-quality dialogue, and 5) a focused analytic strategy—therefore, adequate information power was reached with a smaller sample due to the specific nature of the interviews (ie, focusing on financial hardship), specificity of the sample (ie, LGBTQ+ cancer caregivers), the grounding in financial hardship frameworks (ie, three domains of financial hardship¹⁶), high quality dialogue and multiple cycles of qualitative coding.^16,17 Participants received an additional incentive ($20) for a completed interview.

Interview Guide Design

The study team also developed the survey guide with additional input from researchers with expertise in interviewing LGBTQ+ cancer caregivers. The interview guide asked about various topics related to financial hardship, including the impact of caregiving on financial hardship, employment impacts, sources of financial support, and unmet needs. The interview guide specifically probed participants to consider their experience as LGBTQ+ people in the context of cancer caregiving. The interview guide can be found in Appendix A.

Qualitative Data Analysis

One-on-one interviews were conducted by ARW via Zoom, which were audio recorded and transcribed by a third-party transcription service (GMR Transcription). An inductive qualitative analysis was conducted by ARW, EEK, CRM, SRJ, and KRT.¹⁵ The qualitative analysis was guided by two of the three domains of financial hardship (ie, material and behavioral).¹⁶ Material (eg, medical and non-medical costs) and behavioral financial hardship (eg, cost-coping behaviors, employment changes) were chosen due to the focus of survey measures and interview questions on costs and employment changes. The qualitative thematic analysis consisted of two cycles of coding. First, ARW, CRM, and SRJ immersed themselves in the data by reading the transcripts and taking notes on familiar, surprising, or seemingly important concepts. First, open codes (or short, coder-generated, descriptive codes) were applied to 6 (43%) of the 14 transcripts in Microsoft Word by ARW, CRM, and SRJ.²³ The open codes were then discussed among the coders and EEK, and a preliminary codebook was generated. Two additional transcripts (14%) were then coded into the preliminary codebook by ARW and CRM. During and after the coding of the additional two transcripts, the codebook was refined and finalized. In the second cycle of coding, ARW, and CRM each coded an additional transcript (14%) into the finalized coding structure.²³ All the codes applied to both transcripts were then reviewed by ARW, CRM, and SRJ in a meeting for coder consensus. Coder consensus was reached for the application of codes (100% agreement) as a form of inter-coder reliability.²⁴ The remaining transcripts were then coded by ARW, code applications were checked by CRM and discussed with the study team. Once all transcripts were coded, the codes were synthesized into themes by ARW, CRM, SRJ, EEK, and KRT. Feedback and edits on the conceptualization of the themes was received from all authors of the manuscript. The qualitative analysis followed CORE-Q guidelines (Appendix B) and took place in Dedoose. The mixed-methods analysis followed GRAMMS guidelines (Appendix C).

Study Team Positionality

Analytic team members were asked to reflect on their positionality during the analysis as a means of reflexivity.²⁵ The analytic team was led by ARW, an LGBTQ + identifying doctoral students with years of experience in conducting qualitative research and personal experience as a caregiver to chosen family. The analytic and overall research teams included individuals with insider and outsider status regarding LGBTQ+ identity and caregiving experience and was led by two LGBTQ+ identifying researchers ARW and KRT.

Data Integration

Quantitative and qualitative data were integrated throughout the study, from conceptualization to dissemination. First, integration occurred through the design (ie, explanatory sequential), then through the sampling frame as interview participants were directly recruited from the survey sample (ie, Connecting). Furthermore, survey responses (ie, high financial hardship) guided the recruitment of the interview sample (ie, Building). Data were also integrated during analysis and interpretation through weaving quantitative and qualitative data in the results and discussion based on concept rather than method and the creation of joint displays (ie, Merging and Embedding).²⁶ While presented separately above, quantitative and qualitative analyses occurred concurrently and informed each other. Qualitative findings regarding employment changes in the context of financial hardship informed the quantitative models that were run. Furthermore, findings from quantitative models informed the framing of qualitative themes revolving around stigma. How survey measures and qualitative themes map onto the conceptual model of this study can be found in Figure 1. The University of Pittsburgh (STUDY23080142, 11/22/2023) and the University of North Carolina at Chapel Hill (24-1775, 07/31/2024) Institutional Review Boards approved this study.

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

Results

A total of N = 332 LGBTQ+ cancer caregivers participated in the survey, and N = 14 participated in a qualitative interview (Table 1). The survey sample had a mean age of 41.3 (SD: 20.8), were mostly gay or lesbian (44.0%) or bisexual (46.1%), cisgender men (40.4%) or cisgender women (43.1%), White (63.0%), non-Hispanic/Latine (87.1%), and living in a suburban or urban area (85.5%). Survey participants most frequently cared for a parent (39.8%) or spouse/partner (16.3%). The interview sample was similar to the survey sample and had a mean age of 50.1 (SD: 13.6), were mostly gay or lesbian (64.3%) or bisexual (28.6%), cisgender men (50.0%) or cisgender women (21.4%), White (64.3%), non-Hispanic/Latine (85.7%), and living in a non-rural area (85.7%). Interview participants were most commonly caring for a parent (28.6%), spouse/partner (21.4%), or friend/chosen family member (21.4%).

Table 1.

Demographic Characteristics of LGBTQ + Cancer Caregivers

	Survey sample (N = 332)		Qualitative sample (N = 14)
	Mean	SD	Mean	SD
Age at survey	41.3	20.8	50.1	13.6
	N	%	N	%
Sexual orientation
Gay or lesbian	146	44.0	9	64.3
Bisexual	153	46.1	4	28.6
Asexual	14	4.2	—	—
Other orientation	18	5.4	1	7.1
Missing	1	0.3	—	—
Gender
Cisgender man	134	40.4	7	50.0
Cisgender woman	143	43.1	3	21.4
Transgender man	11	3.3	—	—
Transgender woman	11	3.3	1	7.1
Nonbinary	12	3.6	2	14.3
Another or multiple gender	18	5.4	1	7.1
Missing	3	0.9	—	—
Race
Black	71	21.4	4	28.6
White	209	63.0	9	64.3
Asian	15	4.5	—	—
Another or multiple races	30	9.0	1	7.1
Missing	7	2.1	—	—
Ethnicity
Non-Hispanic/Latine	289	87.1	12	85.7
Hispanic/Latine	36	10.8	1	7.1
Missing	7	2.1	1	7.1
Education
High school/GED or less	54	16.3	1	7.7
Some college, no degree	83	25.0	2	15.4
Associate’s degree	58	17.5	—	—
Bachelor’s degree	105	31.6	7	53.8
Master’s or advanced degree	32	9.6	3	23.1
Rurality
Rural (RUCA 4-10)	38	11.5	2	14.3
Non-rural (RUCA 0-3)	284	85.5	12	85.7
Missing	10	3.0	—	—
Caregiver relationship
Spouse/significant other/ex-spouse	54	16.3	3	21.4
Sibling	18	5.4	0	0.0
Parent/parent-in-law	132	39.8	4	28.6
Grandparent	45	13.6	2	14.3
Friend or chosen family	46	13.9	3	21.4
Other relationship	37	11.1	2	14.3

Another race includes American Indian, Alaska Native, or Indigenous, Native Hawaiian or other pacific islander; other relationship includes caring for a child, extended family, and non-defined relationships.

Rurality was categorized according to Rural-Urban Community Area (RUCA) codes.

Interviews were, on average, 31 min. Three overarching themes from the qualitative analysis are reported here, including 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.

Financial Hardship: Increased Costs, Strained Finances, and Lost Wages

The average modified-COST score among LGBTQ+ cancer caregivers was 25.6 (SD: 9.9, Range: 1-44). The average CRA financial hardship sub-scale score was 2.99 (SD: 1.0, Range: 1-4). A total of 181 (54.5%) of caregivers reported at least one financial hardship from the CRA sub-scale, while 34.5% had high financial hardship from the dichotomized mCOST. Across the CRA sub-scale, 30.0% reported inadequate resources for caregiving, 41.0% reported difficulty paying for things the care recipient needs, 42.0% reported caregiving causing financial strain, and 54.5% reported their household finances not working out at the end of the month (Figure 2). Most LGBTQ+ cancer caregivers reported at least one type of employment change while providing care (60.2%). The most common types of employment change among LGBTQ+ caregivers were decreasing the number of hours worked each week (36.0%) and taking unpaid leave (28.4%; 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)

Material Financial Hardship

Within the material domain of financial hardship, caregivers most frequently described dramatic increases in cost. Cost of living increases were often caused by the care recipient moving in with the caregiver as well as increased costs for transportation, food, and technology (eg, cell phone for care recipient). Material financial hardship was also frequently mentioned by caregivers in the context of existing financial precarity or limited income (eg, social security income). Among working caregivers, lost wages due to inability to work due to caregiving substantially exacerbated financial hardship by decreasing their income.

“It’s like every day basic living is already a lot – living paycheck to paycheck and not being able to put monies into a savings account. So, adding other things on as far as medical bills – it can be a lot.” (Age 32 & caring for other family member)

“In terms of my income, I would say it took a toll on my income. In terms of spending on things my [care recipient] needed. At that moment, I wanted her to have everything. I didn’t want her to lack anything, so I was able to work and provide for her.” (Age 25 & caring for grandparent)

Behavioral Financial Hardship

Caregivers most frequently reported changes in their spending prioritization, spending their savings, and shifting their work schedule or picking up extra hours to pay for additional costs. Changes in spending prioritization varied from reducing spending on leisure time activities (eg, movies) to sacrificing their needs in order to provide financially for the care recipient. Coping behaviors were enacted as a direct response to caregivers’ perceptions of their financial responsibility to the care recipient—regardless of whether that expectation was communicated or appreciated by the care recipient. It was common for caregivers to discuss the strain that they felt between employment and caregiving. Often caregivers discussed employment changes in response to their caregiving responsibilities (eg, reducing hours to provide care) followed by employment changes in response to increased costs of caregiving (eg, picking up part-time job). In the context of employment, some caregivers felt that their employers were flexible and gracious about their caregiving while others did not—however few were able to identify the driving cause of their employer’s inflexibility. Finally, nearly all caregivers reported seeking financial resources to assist the care recipient with medical costs. However, many caregivers expressed how administratively difficult and time-consuming it was to find and apply for such financial resources.

“So, little things here and there, they add up. And so, that’s why we have to rearrange, redo what we used to, what we were used to in order to afford all those expenses.” (Age 59 & caring for parent/parent-in-law)

“I’m a full-time teacher. I work in a Title 1 community. So, a lot of my kids have certain behaviors and things that definitely give me a run for my money. So, having to get up earlier to go check on her before work, having to be to work – and I have to work at 7:10. So, just imagine me getting up earlier to go make sure she’s okay – has everything for her day. So, I try to do like weekly plans for her… with work having to be late sometimes or call off because she doesn’t have anybody to take her to a doctor’s appointment.” (Age 32 & caring for other family member)

Qualitative findings were mirrored in the quantitative findings that showed that LGBTQ+ cancer caregivers who had no employment changes had the highest mCOST scores (Mean: 29.4, SD: 8.7) or the least financial hardship, and those who reported leaving their job permanently had the lowest mCOST scores (Mean: 16.3, SD: 9.4) or the most financial hardship (Table 2). In multivariable models controlling for demographic factors, employment changes were associated with 3.32 times the odds of experiencing high financial hardship compared to no employment changes (95% CI: 1.73-6.36; Table 3).

Table 2.

Average mCOST Score Across Employment Changes, Openness About LGBTQ + Identity, Groups of People Least Open About LGBTQ + Identity, and Caregiving Relationship

	Financial hardship (mCOST score)		P-value
	Mean	SD	P-value
Overall sample	25.6	9.9
Employment changes^a,b
No changes to employment non	29.4	8.7	<.0001
Decreased the number of hours worked each week	22.5	9.8	<.0001
Take unpaid time off work including FMLA	21.8	10.0	<.0001
Take extended paid time off from work	23.1	10.2	.01
Change job duties	22.1	9.2	.001
Increase the number of hours worked each week	21.8	8.8	.005
Find additional or another job	20.9	8.4	.001
Leave your job permanently	16.3	9.4	<.0001
Groups of people least open about LGBTQ+ identity^a,b
Parents	23.3	9.5	<.001
Strangers or new acquaintances	26.7	10.0	.04
Extended family	25.5	10.0	1.00
Work supervisor or boss	24.8	9.3	.34
Leaders of my religious community	27.5	9.4	.02
Members of my religious community	27.2	9.1	.06
My work peers	22.8	9.0	.002
My straight friends	24.2	10.4	.15
My siblings	22.7	10.0	.005
My healthcare providers	21.0	8.5	<.0001
Care recipient’s healthcare provider	21.0	9.1	<.0001
Caregiver relationship^c
Spouse/significant other/ex-spouse	24.1	8.5	.001
Sibling	32.3	8.8
Parent/parent-in-law	24.9	9.5
Grandparent	28.0	10.3
Friend or chosen family	27.7	11.0
Other relationship	21.2	9.5
Openness about LGBTQ+ identity^c
Open to all or most people	25.2	10.6	.44
Very open	25.7	9.2
Moderately open	26.1	9.5
Not very open	27.7	11.1
Not at all open	21.5	8.3

Other relationship includes caring for a child, extended family, and non-defined relationships.

Lower mCOST scores indicate more financial hardship.

^aQuestions were select all that apply.

^bDifference was assessed using two-way t-tests for each option with not selecting that option as the reference.

^cDifference was assessed using ANOVA tests.

Table 3.

Multivariable Logistic Regression Models of the Association of Employment Changes and Perceived Anti-LGBTQ + Stigma With Financial Hardship Among LGBTQ + Cancer Caregivers (N = 282)

	Financial hardship main model (mCOST<22 = 1, mCOST $\geq$ 22 = 0)		Financial hardship interacted model (mCOST<22 = 1, mCOST $\geq$ 22 = 0)
	OR	95% CI	OR	95% CI
Employment changes
No	Ref	Ref	—	—
Yes	3.32*	1.73 – 6.36	—	—
Perceived LGBTQ + stigma	2.21*	1.47 – 3.32	—	—
Employment change and perceived LGBTQ + stigma
No employment change	—	—	1.71*	1.10-2.66
Employment change	—	—	2.58*	1.71-3.88

Models controlled for caregiver relationship, age, sexual orientation, gender, race and ethnicity. All analyses were complete case. Statistical significance was predetermined at P < .05.

Caregiving as an LGBTQ+ Person: Stigma, Outness, and Expectations

Many LGBTQ+ cancer caregivers reported being very open (24.8%) or open to all or most people (28.6%); however, some reported being not very open (11.5%) or not at all open about their LGBTQ+ identity (3.1%). The most common people who LGBTQ+ cancer caregivers reported being least out to were their parents (46.7%) and strangers (46.4%); caregivers were the most open with healthcare providers (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)

In qualitative analyses, the extent to which caregivers were out about their LGBTQ+ identity and whether their families accepted that identity greatly influenced their ability to access informal financial support (eg, money from family, friends, community, etc.). Caregiving dynamics between the caregiver, the care recipient, family members, and the healthcare teams varied substantially. Some LGBTQ+ caregivers were caring for their spouse or partner and were out to everyone in their lives, while other caregivers were caring for a partner but were not out to the care recipient’s family or providers. Some caregivers provided care for family members who they were not out to, while others cared for family members they were out to—some of whom did not accept or respect their LGBTQ+ identity. In multiple cases, caregivers reported negative experiences such as having to vacate their home for their partner’s family to visit during treatment or having to endure continuously being misgendered and deadnamed while caregiving for their unaccepting parent.

“And being with [the care recipient] was a pretty hard experience because, I mean, he doesn’t really understand the whole LGTBQ+ thing. And especially the rest of my family doesn’t understand or believe me. And so, at a certain point, I was just like I’m being asked to do impossible things I can’t possibly be asked to fight for my identity. So, I just kind of just let them misgender me. And I think, a lot of other things that came into play were this kind of expectation of daughters to be the caregivers, and to be the ones taking care of sick family. And that sort of intersection of sexism and transphobia was really, really difficult for me.” (Age 27 & caring for parent/parent-in-law)

The extent to which caregivers were out about their LGBTQ+ identity and whether their families accepted that identity greatly influenced their ability to access informal financial support. Caregivers who were not out reported receiving less support from family and friends—likely due to them not being perceived as financially responsible for the care recipient. However, when caregivers were out, they often reported receiving less informal financial support because their families often viewed them as higher income—a common stereotype of LGBTQ+ individuals. In the absence of informal financial support, LGBTQ+ caregivers more commonly perceived their financial hardship as substantial.

Quantitative findings revealed that mCOST scores varied across caregiving relationships (P = .001; Table 2). Siblings, on average, had the highest mCOST score (32.3, SD: 8.8)—indicating the least financial hardship, however high financial hardship was reported by caregivers reporting most other caregiving relationships. Further, mCOST scores were the lowest (indicating the most financial hardship) among caregivers who were not out to the care recipient’s healthcare providers (Mean: 21.0, SD: 8.5) or their healthcare providers (Mean 21.0, SD: 9.1). Further, in multivariable logistic regression models, perceived LGBTQ + stigma was associated with 2.21 times the odds of financial hardship (95% CI: 1.47-3.32). Perceived LGBTQ + stigma had a substantially larger magnitude association with financial hardship among those who reported employment changes (OR: 2.58, 95% CI: 1.71-3.88) than those who did not (OR: 1.71, 95% CI: 1.10-2.66; Table 3).

Financial Unmet Needs and Recommendations

LGBTQ+ cancer caregivers experienced financial hardship that was exacerbated by structural anti-LGBTQ+ stigma and non-acceptance that resulted in substantial unmet financial needs. Unmet needs included the inability to find and acquire financial resources/assistance, financial assistance applications that were too burdensome, providers who were unable to discuss costs, understanding health insurance bills, and monetary transportation support. Importantly, caregivers often pointed out that most of the resources they sought out and accessed were to defray the cost of medical care for the recipient. All caregivers who were not spousal discussed their inability to find any financial resources to help defray their financial hardship—with many dismissing the question all together and continuing to focus on the care recipient’s needs.

“It was one incident where she had an appointment at [Cancer Center]. And my finances were just depleted. I had nothing to give. And the application was 20 pages. I mean, I’m not even kidding. It was 20 pages. And I’m like, “Oh, wow. This is just to get a gas card for 50 bucks.” I’m having to pick and choose here. Is it worth it? Is doing all of this work just to get a gas card important just to get my mom to the doctor?” (Aged 46 & caring for parent/parent-in-law)

Recommendations on how to improve caregiver financial support ranged from being taught how to understand health insurance coverage and benefits to being provided gas cards to offset transportation costs. The most shared recommendation was coordinated financial assistance that would remove some of the administrative burden shouldered by participants when finding and applying for financial assistance.

Discussion

This national explanatory mixed-methods study revealed substantial material and behavioral financial hardship reported by LGBTQ+ cancer caregivers, which was intensified by societal and interpersonal LGBTQ+ non-acceptance and stigma. In quantitative findings, LGBTQ+ cancer caregivers reported substantial financial hardship that was associated with caregiving-related employment changes and perceived anti-LGBTQ+ stigma. Financial hardship in this study was elevated in comparison to studies of cancer caregivers of other groups (eg, Black cancer caregivers, caregivers of adolescent and young adult survivors) and was high among all caregiver relationships except for siblings.^8,27 Furthermore, LGBTQ+ caregivers described how their employment disruptions/loss of employment drove their financial hardship and was further exacerbated by anti-LGBTQ+ stigma, familial non-acceptance, and the concealment of LGBTQ+ relationships. While employment changes and financial hardship may not be unique to LGBTQ+ cancer caregivers, the extent to which their financial hardship was exacerbated by anti-LGBTQ+ stigma, familial non-acceptance, or concealment of LGBTQ+ identity/relationships is unique to this population. The findings of this study highlights complex and substantial financial hardship experienced by LGBTQ+ cancer caregivers—an often understudied and under-resourced population.

Changes in employment are common among cancer caregivers and have a substantial impact on caregiver and survivor financial hardship. However, in this study, only 25.5% of caregivers reported taking paid leave. The US is the only developed country without paid sick and family leave for all working adults.²⁸ While paid leave would not alleviate the increased costs accrued during caregiving, it would minimize the impacts of reduced hours and lost employment—hypothetically decreasing financial hardship experienced by caregivers. However, even if paid leave was available for all caregivers, access to such leave assumes outness and acceptance of LGBTQ+ identities in the workplace and that LGBTQ+ relationships are eligible for such leave—neither of which are guaranteed in the US.^29,30 At the same time, employment and financial hardship interventions primarily focus on assisting cancer survivors to minimize their financial hardship and request work accommodations.^31,32 Most dyadic financial hardship interventions that have been developed have not enrolled caregivers with relationships outside of spouses and members of their family of origin.³³ In fact, very few interventions exist specifically for LGBTQ+ cancer caregiver populations.^34,35 Future investigations into how to minimize cancer survivor and caregiver financial hardship, including interventions, should not function under the assumption that LGBTQ+ relationships and families are the same as their non-LGBTQ+ counterparts.

Our findings align with the inequities in financial hardship among LGBTQ+ cancer survivors, which are driven by structural forces such as anti-LGBTQ+ stigma and discrimination—though employment discrimination was directly discussed by our qualitative sample.^9,10,36 In this study, the association between perceived anti-LGBTQ+ stigma and financial hardship was elevated when employment changes were present. This finding begins to suggest that anti-LGBTQ+ stigma in the workplace may act as a mechanism that drives cancer-related financial hardship among LGBTQ+ individuals. Prior research has demonstrated that distress among LGBTQ+ cancer caregivers was associated with financial impacts of caregiving but also factors such as lack of family support and discrimination.³⁷ The findings from this study align with the literature indicating that LGBTQ+ cancer caregivers often sideline or hide their identities while caregiving.³⁷ However, this analysis provides novel insight into how outness and acceptance of LGBTQ+ identities influenced LGBTQ+ cancer caregivers’ ability to access formal (ie, application-based financial aid) and informal financial support (ie, financial aid from family, friends, and community). Additional research is needed to fully understand the how variations in identity self-acceptance and outness impact accessing informal and formal financial support resources and ways in which LGBTQ+ caregivers can fight against stereotypes that negatively impact their financial hardship such as being expected to take more financial responsibility of the care recipient due to misconceptions about LGBTQ+ individuals being higher income—which on average they are not.¹³ The expectations of financial support for the care recipient and high financial hardship among all caregiving relationships except for siblings reported in this study further supports interventional approaches to minimizing financial hardship that considers non-spousal caregiving relationships and provides environments in which caregivers can feel comfortable being out about their LGBTQ+ identity.

Interpretation of our findings must be considered in the context of some limitations. Only LGBTQ+ cancer caregivers were enrolled in this study and therefore the findings of this study are likely not generalizable to other caregiver populations. This manuscript only presents information about the caregiver and therefore does not consider care recipient clinical characteristics which may impact caregiver burden and financial hardship. Participants who were included in the quantitative models were significantly younger than those who had missing data, suggesting that the models reported may over represent the experiences of working-aged LGBTQ+ cancer caregivers. Quantitative and qualitative data were collected from 04/2024 to 12/2025, encapsulating a presidential election that may have influenced perceptions of anti-LGBTQ+ stigma.

Conclusions

In this national mixed-methods study, LGBTQ+ cancer caregivers experienced substantial financial hardship. Employment changes were associated with higher financial hardship in the quantitative analyses. LGBTQ+ cancer caregivers described employment changes as both the cause of their financial hardship (ie, reduced income) and the result of financial hardship (ie, picking up more hours to pay for caregiving expenses). The relationship between employment changes and financial hardship was complicated by anti-LGBTQ+ stigma. LGBTQ+ cancer caregivers described a varying level of outness and acceptance regarding their LGBTQ+ identity that directly influenced their access to informal (eg, money from family) and formal financial support (eg, being perceived as a family by financial aid systems). Very few interventions, none of which are focused on reducing financial hardship, exist for LGBTQ+ cancer caregivers—a population at high risk of poor health and financial outcomes. The findings of this study in addition to the existing literature provide an opportunity to improve supportive services for LGBTQ+ cancer caregivers.

Supplemental Material

Supplemental Material - “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

Supplemental Material for “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 by Austin R. Waters, Erin E. Kent, Camille R. Murray, Shaun R. Jones, Echo L. Warner, Lorinda A. Coombs, Heidi Donovan, Hazel B. Nichols, Stephanie B. Wheeler, Donald L. Rosenstein, Mya L. Roberson, and Kelly R. Tan in Cancer Control

Supplemental Material

Supplemental Material - “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

Supplemental Material

Supplemental Material - “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

Footnotes

Acknowledgements

The study team would like to acknowledge the organizations that assisted in recruitment, including Cactus Cancer Society, Patient Advocate Foundation (PAF), FORCE, Sage, Huntsman Intermountain Adolescent and Young Adult Cancer Program (HIAYA), University of North Carolina Adolescent and Young Adult Cancer Program (UNC AYA), National Alliance for Caregiving (NAC), and the North Carolina Department of Health and Human Services (NCDHHS) LGBTQ+ Health Needs Assessment team. We would also like to acknowledge the input from Dr Theresa Hastert on the interview guide development.

ORCID iDs

Austin R. Waters

Mya L. Roberson

Kelly R. Tan

Ethical Statement

The University of Pittsburgh (STUDY23080142, 11/22/2023) and the University of North Carolina at Chapel Hill (24-1775, 08/09/2024) Institutional Review Boards approved this study.

Consent Statementz

All participants provided informed consent prior to participating in this study.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was supported by an Agency for Healthcare Research and Quality dissertation research award R36HS030175 (PI: Waters), the National Cancer Institute’s National Research Service Award sponsored by the Lineberger Comprehensive Cancer Center at the University of North Carolina (T32 CA116339), and by a pilot award (PI: Tan) through the Emotional well-being and economic burden research network funded by the National Center for Complementary and Integrative Health (NCCIH), the Office of Behavior and Social Sciences Research (OBSSR), the Office of Disease Prevention and National Institutes of Health Office of the Director under award number U24AT011310.

Declaration of Conflicting Interests

The 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.

Data Availability Statement

Data may be available to the corresponding author upon reasonable request.*

Supplemental Material

Supplemental material for this article is available online.

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