“Faith and a Sunny Day”: Association of Patient Frailty with Strain Experienced by Informal Caregivers of Older Adults with Non-Muscle-Invasive Bladder Cancer

Abstract

Introduction:

Few studies have evaluated the potential effects of aging-related conditions like frailty in older adults with cancer on informal caregivers. Our objective was to evaluate the association between the sum total of the aging-related conditions of older adults with non-muscle-invasive bladder cancer (NMIBC) and the strain reported by their informal caregivers.

Materials and Methods:

We conducted an explanatory sequential mixed methods cross-sectional survey study that recruited 81 dyads of older adults with NMIBC (age ≥65 at diagnosis) and their informal caregivers. Our outcome was measured by the Caregiver Strain Index (CSI), a self-reported measure of informal caregivers. Our exposure was the patient’s deficit accumulation index (DAI), a validated composite measure of frailty derived from a geriatric assessment. A multivariable negative binomial regression was conducted to model CSI. We conducted qualitative thematic content analysis of responses to open-ended survey questions to understand specific types of caregiver strain and to identify coping strategies.

Results:

Mean ages of patients and caregivers were 79.4 years and 72.5 years, respectively. Most caregivers were spouses (75.3%) and lived with the patient (80.2%). Of patients, 54.3% were robust, 29.6% were pre-frail, and 16.1% were frail. In the multivariable model, we found that patient DAI was significantly associated with CSI (adjusted incidence rate ratio 1.05, 95% CI 1.02–1.09). The top three sources of strain identified by caregivers were emotional adjustments, medical management, and family adjustments. Coping strategies for each included self-management of emotions, self-education about bladder cancer, and social support, respectively.

Discussion:

In this cross-sectional study, we found that worsening frailty in an older adult with NMIBC was associated with greater informal caregiver strain. Informal caregivers reported challenges with emotional management, family dynamics, and medical tasks. These findings may inform longitudinal research and interventions to support informal caregivers who provide care for older adults with NMIBC.

INTRODUCTION

In the U.S., an invisible workforce of approximately two million informal caregivers provide, on average, 10 hours of care per week to older adults with cancer.^1,2 Informal caregivers are individuals (e.g., family members or others) who provide unpaid assistance with healthcare tasks, activities of daily living, and other personal needs.^2,3 For informal caregivers of people with cancer, providing this support represents an intense, episodic experience.² Regarding older adults with cancer, such caregiving can be even more demanding because of co-existing age-related challenges (e.g., frailty, multimorbidity).

There are limited data that evaluate the associations between the aging-related conditions of older adults with cancer and strain, quality of life, and health outcomes among informal caregivers. While previous studies have focused on specific aging-related conditions, to our knowledge none have considered the more global measure of frailty. A nuanced understanding at the intersection of aging and cancer is needed to inform interventions meant to address the unique burdens faced by dyads of older patients with cancer and their informal caregivers.

In this study, we measured frailty in older adults with non-muscle-invasive bladder cancer (NMIBC) as well as the strain reported by their informal caregivers. We selected patients with NMIBC because it is a common cancer that disproportionately affects older adults (median age at diagnosis 73 years) and is characterized by multiple co-existing aging-related conditions (e.g., multimorbidity).^4,5 It is a highly recurrent cancer that requires ongoing, chronic care rather than a short-term regimen of major surgery and chemotherapy.⁶ Though NMIBC is more common, most studies have focused on caregiving in muscle-invasive bladder cancer rather than NMIBC.^7–9

Our first objective was to quantitatively evaluate the association between the sum total of the aging-related conditions of older adults with NMIBC (exposure) and the strain reported by their informal caregivers (outcome). The exposure was measured with the deficit accumulation index (DAI), which is derived from a geriatric assessment. The outcome was measured by the Caregiver Strain Index (CSI), a self-reported measure. Our second objective was to qualitatively analyze open-ended survey responses to understand the types of strain experienced by informal caregivers and their strain-specific coping strategies.

MATERIALS & METHODS

Study Design and Participants

We conducted a cross-sectional survey study of older adults with NMIBC and their informal caregivers at Geisinger, an integrated health system serving rural central Pennsylvania. Eligibility criteria for the patient cohort was described in a prior publication (Supplemental Table 1).¹⁰ Enrolled patients identified an informal caregiver as the person who provided them with the most unpaid help in a given week, and could include a family member or other person. Eligibility criteria for informal caregivers included: unpaid caregivers age ≥18 years at enrollment and providing help with activities of daily living or instrumental activities of daily living (IADL). Patients provided consent to contact the identified caregiver. The study team then consented the caregiver separately.

This study was approved by Institutional Review Boards at Geisinger and at Penn State. Study recruitment occurred at Geisinger Medical Center from November 2019 through July 2021. Of the 119 enrolled older adults with NMIBC, 88 participants identified an informal caregiver (74%). Of the 88 informal caregivers, 81 enrolled and completed the survey (92%, Figure 1).

Figure 1:

CONSORT Diagram

Outcome

The primary outcome was caregiver strain as measured by the CSI.^11–13 The CSI is a 13-item validated survey touching on multiple domains including sleep, emotions, and work (Supplemental Figure 1). CSI scores may range from 0 to 13 with higher scores indicating greater strain. We operationalized CSI as a count outcome. The CSI has been used in prior studies of patients with cancer and informal caregivers.^1,14,15

Exposure

We considered the following three exposure variables derived from patient-reported questionnaires: frailty as measured by the geriatric assessment-derived DAI, treatment burden as measured by the Treatment Burden Questionnaire (TBQ), and urinary symptoms as measured by the Urogenital Distress Inventory-6 (UDI-6).

The primary exposure was the DAI, a validated composite score based on the deficit accumulation model, which defines frailty as an accumulation of a person’s total aging-related deficits.¹⁶ The DAI we used is derived from the Cancer and Leukemia Group B/Cancer and Aging Research Group geriatric assessment, a mostly self-administered tool validated to measure the most impactful aging-related conditions in older adults with cancer (e.g., functional status, weight loss, falls).^17–19 The DAI is calculated by summing all aging-related deficits and dividing by the total number of 75 possible deficits for a score ranging from 0.0 to 1.0. Details regarding our calculation of DAI for the patients in this cohort can be found in our prior publication.¹⁰

We also considered urinary symptoms and treatment burden as potential secondary explanatory variables. Urinary symptoms are a known side effect of NMIBC treatment. Patients completed the validated six item UDI-6, which is scored from 0–100 with higher scores corresponding to more distress.^20,21 Patients also completed the TBQ, a validated 15 item survey measuring a patient’s perceptions of the burdens due to healthcare workload (e.g., medication management, appointments, financial burden). TBQ scores range from 0 to 150 with higher values indicating greater patient-perceived treatment burden.²²

Covariates

We considered the following informal caregiver characteristics as covariates: age at enrollment, urban-rural status, financial hardship, and health literacy. Because greater than 90% of informal caregivers were female, we excluded sex. Urban-rural status was defined using United States Department of Agriculture Rural-Urban Commuting Area (RUCA) codes based on the informal caregiver’s census tract.²³ We measured financial hardship using a validated single item (“How hard is it for you to pay for the very basics like food, housing, medical care, and heating?”).²⁴ We screened for health literacy using the following validated question: “How confident are you filling out medical forms by yourself?”²⁵

Open-Ended Survey Questions

Informal caregivers provided written responses to two open-ended questions: (i) “What has been the greatest challenge in helping your friend or family member with their bladder cancer?” and (ii) “What has helped you manage your friend or family member’s bladder cancer that could be helpful to other caregivers or healthcare providers?”

Statistical Analysis

We calculated descriptive statistics using means and standard deviations (SD) for continuous variables and counts and percentages for categorical variables. We created histograms of the CSI and the DAI scores.

There was missingness ranging from 1% in the UDI-6 to 8% in the CSI (Supplemental Table 2). We assumed the items were missing-at-random and conducted multiple imputation using the R package “mice” to generate 20 imputations.²⁶ Variables included in the multiple imputation are shown in Table 1.

Table 1:

Characteristics of Informal Caregivers and Older Adults with NMIBC

	Total (n=81)
Demographics of Caregivers
Age at enrollment, years (mean, SD) a	72.5 (10.4)
Sex, n (%) a
Female	74 (91.4%)
Race/Ethnicity (n, %)
White	73 (90.1%)
Non-white/Other	8 (9.9%)
Education Level (n, %) a
High school or less	47 (58%)
Unknown/Missing	1 (1.2%)
Difficulty paying for basics (n, %) a
Very hard	3 (3.7%)
Somewhat hard	21 (25.9%)
Not hard at all	55 (67.9%)
Unknown/Missing	2 (2.5%)
Health Literacy (n, %) a
Low	17 (21%)
High	64 (79%)
Urban-Rural Residence (n, %) a
Urban	48 (59.3%)
Rural	33 (40.7%)
Caregiver Lives with Patient (n, %) a
Yes	65 (80.2%)
Missing	1 (1.2%)
Distance from Patient Among Caregivers Not Residing with Patient, miles (median, IQR) a	8 (4.3–22.5)
Missing	1 (1.2%)
Relationship to patient (n, %) a
Spouse	61 (75.3%)
Child	8 (9.9%)
Other	10 (12.3%)
Unknown/Missing	2 (2.5%)
Caregiving Characteristics
Hours per week providing help (mean, SD)	11.9 (12.3)
Missing	30 (37%)
Primary Outcome
Caregiver Strain Index (mean, SD)	1.2 (2.2)
Unknown/Missing	8 (9.9%)
NMIBC Patient Characteristics & Exposures
Age of NMIBC patient at enrollment (mean, SD) a	79.4 (7.1)
Time Since Initial NMIBC Diagnosis, years (mean, 95% CI)	3.5 (2.5–4.4)
Deficit Accumulation Index (mean, SD) a	0.21 (0.13)
Deficit Accumulation Index (n, %)
Robust (<0.2)	44 (54.3%)
Pre-Frail (0.2<0.35)	24 (29.6%)
Frail (≥0.35)	13 (16.1%)
Treatment Burden Questionnaire (mean, SD) a	17.01 (16.04)
Urogenital Distress Inventory (mean, SD) a	26.5 (23.7)
Unknown/Missing	1 (1.2%)

^aVariables included in multiple imputation. Also included: patient education level, patient financial difficulty, patient health literacy, patient’s number of healthcare encounters in the year prior to enrollment, informal caregiver marital status, informal caregiver work changes due to caregiving, types of caregiving help provided

Abbreviations: SD=standard deviation; NMIBC=non-muscle-invasive bladder cancer; CI=confidence interval

We evaluated Poisson, negative binomial, zero-inflated Poisson, and zero-inflated negative binomial distributions for modeling CSI using the Bayesian Information Criterion (BIC). Based on minimization of the BIC, the negative binomial distribution was the best fit.

We conducted univariable analyses in which we regressed the CSI on each of the patient-related exposures individually. Subsequently we conducted a multivariable regression which included all three exposures. Following this, we conducted another multivariable analysis, incorporating the three exposures as well as covariates related to informal caregivers. For all models, the coefficients from the 20 separate imputed datasets were combined to provide a global set of coefficients that were subsequently used to calculate the incidence rate ratios (IRR) of the exposures and the covariates. Given the large proportion of informal caregivers reporting zero on the CSI, we conducted a sensitivity analysis using logistic regression of a binary form of the outcome (CSI > 0 vs CSI = 0). All quantitative analyses were conducted in R (R Core Team 2023) and R Studio (RStudio Team 2023) with statistical significance defined as a p-value <0.05.²⁷

Mixed Methods Analysis

This was an explanatory sequential mixed methods design. Following quantitative analysis, we evaluated open-ended survey responses to characterize the responses and to understand why a large proportion of informal caregivers reported zero strain. TG and CKM conducted qualitative template analysis starting the greatest challenge question with an initial codebook based on the 13 CSI domains.²⁸ We coded data that did not fit into CSI domains as “Other.” Survey responses could be coded to multiple codes. TG coded all survey responses, CKM reviewed the coding, and discrepancies were resolved through consensus.

We used open coding to further describe responses coded as “Other.” Uninterpretable responses (e.g., single word answers) were coded to “Not Applicable.” As some respondents reported no challenges and/or no strain, we implemented a new code called “No Strain.” Multiple responses in the “Other” code referenced medical tasks such as helping with urinary catheters, arranging medical appointments, and transportation. Because the CSI does not include a domain related to medical tasks, we created a new code called “Medical Management” (Supplemental Figure 2).

We used the same codebook and review process to examine responses to the second open-ended survey question on coping strategies. We looked for coping strategies that could be matched to the top three strain codes from the greatest challenge question and coded them accordingly.

To better understand why a large proportion of informal caregivers reported quantitatively zero strain on the CSI, we integrated the quantitative CSI scores (CSI=0 vs CSI >0) with frequency of qualitative codes. A joint display was developed to merge quantitative CSI scores with the three most frequently mentioned codes from the greatest challenge question. We integrated learnings from the coping strategies to address the top three challenges.

Mixed methods analyses were conducted in NVIVO version 12.0 (QSR International, Doncaster, Australia).

RESULTS

Demographics/Caregiver Characteristics

We enrolled a total of 81 informal caregivers with a mean age of 72.5 years (Table 1). Over 90% of informal caregivers were female, three-quarters were spouses (75.3%), and the majority lived with the patient with NMIBC (80.2%). Among those who did not live with the patient with NMIBC, the informal caregiver lived a median of eight miles away (interquartile range [IQR] 4.3–22.5). Over half of the informal caregivers had a high school education or less (58%) and 40.7% lived in a rural census tract. Approximately one-third of informal caregivers noted financial difficulty (29.6%) and 21% had low health literacy. Informal caregivers in our cohort provided an average of 11.9 hours per week of unpaid help to the older adults with NMIBC. The average age of the patients with NMIBC was 79.4 years and the average time since initial NMIBC diagnosis was 3.5 years (95% confidence interval [CI] 2.5–4.4)

CSI Scores (Primary Outcome)

CSI scores were right-skewed (Figure 2a). Based on one imputed dataset, 72% reported no strain (CSI=0). Among informal caregivers who reported non-zero strain on the CSI, the three most frequent sources of strain were changes in personal plans (19%), upsetting behavior (16%), and feeling completely overwhelmed (14%, Figure 3).

Figure 2:

Distribution of a) Caregiver Strain Index Scores (CSI, Outcome)a and b) Deficit Accumulation Index (DAI, Exposure)

^aHistograms from one imputed dataset. Of 81 enrolled informal caregivers, 8 (9.9%) had missing items in the CSI. Abbreviations: CSI=Caregiver Strain Index; DAI=Deficit Accumulation Index

Figure 3:

Proportions of “Yes” Responses to Caregiver Strain Index (CSI) Survey Items^a

^aFor one imputed dataset.

DAI, UDI-6, and TBQ (Exposures)

The mean DAI for the 81 patients with NMIBC was 0.21 (SD 0.13), which corresponds to the pre-frail category (Table 1, Figure 2b). Over half of the cohort was categorized as robust (54.3%), 29.6% were pre-frail, and 16.1% were frail. Mean UDI-6 score was 26.5 (SD 23.7) and mean reported TBQ score was 17.01 (SD 16.04).

Multivariable Model Results

After controlling for caregiver characteristics, DAI remained significantly associated with CSI score (adjusted IRR 1.05, 95% CI 1.02–1.09, Figure 4, Supplemental Table 3). The interpretation of this result is that for each 0.01 unit increase in the patient’s DAI (scaled from 0 to 1), on average, the informal caregiver CSI score increased by 5%, a magnitude more easily understood with an example. A change of 0.05 on the DAI is considered a meaningful decline in the clinical state of an older adult.²⁹ Because the associations are multiplicative in nature, the change of 0.05 in frailty corresponds to a 28% increase (1.05^⁵) in informal caregiver strain. Patient-reported UDI-6 and TBQ scores were not significantly associated with CSI score. In the sensitivity analysis, the DAI retained a significantly positive association with the binary form of the CSI.

Figure 4:

Adjusted Incidence Rate Ratios for the Deficit Accumulation Index (DAI), Treatment Burden Questionnaire (TBQ), and Urogenital Distress Inventory-6 (UDI-6) from the Negative Binomial Regression Model of the Caregiver Strain Index score.^a,b

^aCSI score across 20 imputed datasets

^bAdjusting for the following informal caregiver characteristics: age at enrollment, rural-urban residence, difficulty paying for the basics, and health literacy. Abbreviations: DAI = Deficit Accumulation Index; UDI-6=Urogenital Distress Inventory-6; TBQ=Treatment Burden Questionnaire

Mixed Methods Results: Specific Caregiving Strains and Coping Strategies

Of 81 enrolled caregivers, 62 (76.5%) provided responses to the greatest challenge question and 50 provided responses to the coping strategies question (61.7%). The top three codes were: Emotional Adjustments (31, 50%), Medical Management (12, 19.3%), and Family Adjustments (6, 9.7%). Fifteen caregivers’ responses were coded to No Strain. Of these, 10 caregivers provided a CSI score of 0, but five had CSI scores that indicated strain (CSI >0).

The frequency of the top three codes varied by CSI score in certain instances (Figure 5). Informal caregivers with CSI >0 more frequently mentioned Emotional Adjustment and Family Adjustments than caregivers with CSI=0 (20 vs 11 and 6 vs 0, respectively). The number of caregivers reporting Medical Management did not vary by CSI level (6 vs. 6).

Figure 5:

Joint Display of Highest Prevalence Informal Caregiving Strains with Corresponding Coping Strategies

Although the frequency of Emotional Adjustment codes was higher for those with CSI >0, both groups reported similar types of strain. For emotional self-management, informal caregivers noted challenges with patience, stress management, and worry about the diagnosis and an uncertain future. Informal caregivers also took on the emotional work of keeping the patient with NMIBC from worrying by providing emotional support and maintaining a positive attitude.

To cope with Emotional Adjustments, informal caregivers recommended patience, a positive attitude, faith, and being physically and emotionally available to the patient. One caregiver summarized the strategy as “faith and a sunny day (Figure 5).” Respondents relied on support from spouses, family, and friends, but also noted that “[taking] time for yourself to get refreshed,” hobbies, and rest were important.

The Family Adjustments code was only reported in the CSI >0 group. Informal caregivers described managing emotions during “skirmishes” with the patient, overcoming past dynamics and current behaviors between a parent with NMIBC and an adult child, and dealing with other family members. Some informal caregivers felt their role in the relationship had to change, with one explaining that she had to become an advocate in the healthcare environment.

To cope with Family Adjustments, informal caregivers recommended advocating for their loved one, joining support groups, talking to others for encouragement, and, for adult children caregivers, enlisting spouses for support.

Medical Management was a common challenge across both groups, but the nature of management differed. In the CSI >0 group, Medical Management challenges consisted of home care after treatments, urinary catheter management, transportation and care arrangements, and self-education about bladder cancer. The CSI=0 group had challenges with encouraging the patient with NMIBC to self-manage side effects and to attend appointments.

To cope with Medical Management challenges, informal caregivers offered varied strategies. They advised providing transportation for appointments and following all medical instructions. Several caregivers recommended being actively involved in medical appointments—listening carefully, speaking up to ask questions, and staying informed. They tried to “make a day of it” by adding shopping or restaurant outings. Though also recognized as a strain, informal caregivers reinforced the importance of researching bladder cancer.

DISCUSSION

In this cross-sectional study of informal caregivers of older adults with NMIBC, we found that patient frailty was significantly associated with informal caregiver strain as measured by the CSI. We found that as patient frailty increased, informal caregiver strain also increased. The top three most common strains of informal caregivers in our study were emotional adjustments, medical management, and family adjustments. A large proportion of informal caregivers in our study reported no strain; however, when asked about their greatest challenges, several of them referred to emotional regulation they undertook for themselves that related to management of their own emotions and those of the patient with NMIBC. Challenges due to family adjustments were only reported by informal caregivers who had CSI >0. Together, these findings suggest that accumulation of aging-related conditions in an older adult with NMIBC are associated with increased strain in their informal caregivers.

Our findings expand on the few prior studies examining the association between aging-related factors in older adults with cancer and informal caregiver burdens. A cross-sectional study of 100 older adults with advanced cancer found that informal caregivers had high strain (CSI ≥7) when caring for older adults who required help with IADLs and had lower self-reported physical function.¹ However, informal caregivers caring for a completely independent older adult reported no strain. Another study of over 400 dyads enrolled in a palliative care cluster randomized trial for metastatic cancer found that poor functional status as measured by the Eastern Cooperative Oncology Group (ECOG) Performance Status measure was associated with higher informal caregiver burden.³⁰ The study excluded patients with ECOG >3 and cognitive impairment—older persons for whom informal caregiving may be most needed. However, ECOG and other oncologic performance status measures sometimes underestimate functional status in older adults.³¹ Another recent study of older adults with advanced cancer demonstrated that a higher number of geriatric impairments in the care recipient, specifically poor physical function, was positively associated with poor quality of life among informal caregivers.³² Overall, despite the high prevalence of cancer in older adults, there are few studies that have examined informal caregiving burdens at the intersection of aging and cancer. Other studies of informal cancer caregiving in older adults have focused on advanced or incurable cancer, did not incorporate aging-related conditions, or have had few participants with genitourinary cancers. Our study, which incorporates a geriatric assessment-derived measure of frailty, demonstrates that frailty in an older cancer care recipient impacts informal caregivers even in a chronically recurrent cancer with low mortality such as NMIBC.

Similar to other studies, many informal caregivers had CSI scores that were low or zero.^1,30 In our qualitative analysis, we found that informal caregivers with CSI=0 still experienced strain, mostly related to emotional adjustments and medical management. The CSI has a question specific to emotional adjustments; however, given the large proportion of CSI=0 responses, it did not seem to adequately capture uncertainties of cancer diagnosis and treatment and the work of emotional regulation (i.e., faith and positive attitude) the caregiver undertook for both themselves and the patient. In our prior study of the association between frailty and treatment burden in older adults with NMIBC, we similarly found that patients had emotional challenges related to NMIBC recurrence and progression.¹⁰ Taken together, these findings suggest that the emotional challenges of NMIBC are important concerns among both parties. Existing guidelines recommend screening for emotional distress in patients with cancer (e.g., National Comprehensive Cancer Network [NCCN] Distress Thermometer), but our findings suggest an important role for expanding screening to informal caregivers, particularly if caring for someone who is frail.³³

In parallel with emotional adjustments, family adjustments and family dynamics were a source of strain for informal caregivers in our study. The NCCN guideline describes several risk factors for distress in patients with cancer including family/caregiver dynamics. Patient-caregiver dyads exist within a given social context and family history. A recent study found that adult children caregivers of parents with lung and colorectal cancer experience greater social/emotional burdens than spousal caregivers, and that better communication quality between the dyad can reduce this burden.³⁴ Informal caregiver distress screening may enable clinicians to provide additional resources such as supportive psychological care for adult children.

Our qualitative data highlights challenges around medical management including urinary catheters and bladder cancer education. The adverse effect profile of intravesical treatments and transurethral resections includes multiple urinary issues including hematuria, urinary tract infections, and symptoms such as urgency, frequency, nocturia, and dysuria, to name a few. Frailty has been associated with more urinary symptoms at baseline, which could be subsequently exacerbated by NMIBC treatment.³⁵ These adverse effects can impact informal caregivers who may care for a frail older adult with mobility impairment or one who needs help with toileting. In our prior study that found an association between frailty and patient-reported treatment burden in older adults with NMIBC, frail and pre-frail patients reported burdens due to self-monitoring and self-management, frequent lab tests and exams, urinary symptoms, and having to arrange appointments, including any needed transportation.¹⁰

Though the CSI was developed in a cohort caring for older adults after a recent hospitalization, it lacks a question about strain around medical tasks and medical management. We suspect that this is related to the fact that the CSI was developed in the 1980s, when patients remained in the hospital for longer periods of time and may not have required as much home-based care. In current times, as patients are transitioned to home faster after surgery and hospitalizations, they increasingly rely on family and friends for medical tasks. For example, transurethral resection of bladder tumor for NMIBC is now mostly a same-day discharge or an overnight stay. Our findings suggest that the CSI may require updating to include medical management. Other studies have suggested that preparedness for caregiving can help to ameliorate informal caregiver strain.^36,37 More broadly, we need to find more effective ways to educate informal caregivers on urinary catheters and their adverse urinary effects.

Our study must be considered in the context of several limitations. Our cohort was small, cross-sectional, and derived from a convenience sample recruited from urology clinics at a single health system. Though our effect size was significant, its small magnitude may reflect our small sample size and our data having been collected at a single time point. In future studies, we plan to design a longitudinal study with a larger sample size which may help us to better characterize these findings and identify targets for intervention throughout the cancer continuum and across a broader range of cancer stages. Some patients were more recently diagnosed while others were survivors for many years, which may have impacted our outcome measure. Our focus was on one cancer type at early stages, but our findings reflect what has been reported in other cancers and in advanced cancers. We focused on strain, a negative aspect of caregiving; nonetheless, caregiving is also a positive and meaningful experience for many. In future studies, we will more systematically elicit the positive aspects of caregiving to better understand informal caregivers with lower levels of strain.³⁸ Though our cohort lacked racial/ethnic diversity, our study provides insight into rural informal caregivers from economically marginalized backgrounds.

Despite these limitations, our study is one of the few to examine the impact that aging-related conditions experienced by an older patient with cancer have on their informal caregivers, and one of the very few to study caregiving for older patients with NMIBC. Our findings may inform future longitudinal interventions, practice guidelines, and policy intended to provide more robust emotional support to dyads of older adults with cancer and their informal caregivers.

CONCLUSION

In this cross-sectional study, we found that worsening frailty in an older adult with NMIBC is associated with greater informal caregiver strain. Informal caregivers report challenges with emotional management, family dynamics, and medical tasks. These findings may inform longitudinal research and specific interventions to support informal caregivers who provide care for older adults with NMIBC.