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OBJECTIVE: Financial strain and unmet social needs are associated with greater risk for lower urinary tract symptoms. Little research has examined financial strain and unmet social needs in relation to the more holistic concept of bladder health. This study utilizes baseline data from RISE FOR HEALTH: A U.S. Study of Bladder Health to examine whether financial strain, unmet social needs, and meeting specific federal poverty level threshold levels are associated with lower urinary tract symptoms and poorer perceived bladder health, well-being, and function. STUDY DESIGN: Participants were 18 years or older, born female or currently identified as a woman, and from the civilian, noninstitutionalized population residing in 50 counties in the United States that included or surrounded nine recruitment centers. Data were collected through mailed or internet-based surveys. To address research questions, the 10-item Lower Urinary Tract Dysfunction Research Network Symptom Index and selected Prevention of Lower Urinary Tract Symptoms Research Consortium bladder health scores were separately regressed on each financial strain, unmet social need, and federal poverty level variable, using linear regression adjusting for covariates (age, race/ethnicity, education, and vaginal parity) and robust variance estimation for confidence intervals. Participants with no missing data for a given analysis were included (range of n=2,564 to 3,170). In separate sensitivity analyses, body mass index, hypertension, and diabetes were added as covariates and missing data were imputed. RESULTS: The mean age of participants was 51.5 years (standard deviation=18.4). Not having enough money to make ends meet, housing insecurity, food insecurity, unreliable transportation, and percent federal poverty levels of 300% or less were consistently associated with more reported lower urinary tract symptoms and poorer perceived bladder health. For example, compared to food secure participants, women who worried that their food would run out at the end of the month had a Lower Urinary Tract Dysfunction Research Network - Symptom Index score that was 3.4 points higher (95% CI: 2.5, 4.3), on average. They also had lower mean scores across different bladder health measures, each assessed using a 100-point scale: global bladder health (-8.2, 95% CI: -10.8,-5.7), frequency (-10.2, 95% CI: -13.8,-6.7), sensation (-11.6, 95% CI: -15.1,-8.2), continence (-13.3, 95% CI: -16.7,-9.9), and emotional impact of bladder health status (-13.2, 95% CI: -16.5,-9.9). Across analyses, associations largely remained significant after additional adjustment for body mass index, hypertension, and diabetes. The pattern of results when imputing missing data was similar to that observed with complete case analysis; all significant associations remained significant with imputation. CONCLUSION: Financial strain and unmet social needs are associated with worse LUTS and poorer bladder health. Longitudinal research is needed to examine whether financial strain and unmet social needs influence the development, maintenance, and worsening of lower urinary tract symptoms; different mechanisms by which financial strain and unmet social needs may impact symptoms; and the degree to which symptoms contribute to financial strain. If supported by etiologic research, prevention research can be implemented to determine whether the amelioration of financial strain and social needs, including enhanced access to preventative care, may promote bladder health across the life course.
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Community engagement has been named a research priority by the National Institutes of Health, and scholars are calling for community engagement as an approach to address racism and equity in science. Robust community-engaged research can improve research quality, increase inclusion of traditionally marginalized populations, broaden the impact of findings on real-life situations, and is particularly valuable for underexplored research topics. The goal of this paper is to describe lessons learned and best practices that emerged from community engagement in a multi-institution population health research consortium. We describe how a foundation was laid to enable community-engaged research activities in the consortium, using a staged and stepped process to build and embed multi-level community-engaged research approaches.. We staged our development to facilitate (a) awareness of community engagement among consortium members, (b) the building of solidarity and alliances, and (c) the initiation of long-term engagement to allow for meaningful research translation. Our stepped process involved strategic planning; building momentum; institutionalizing engagement into the consortium infrastructure; and developing, implementing, and evaluating a plan. We moved from informal, one-time community interactions to systematic, formalized, capacity-building reciprocal engagement. We share our speed bumps and troubleshooting that inform our recommendations for other large research consortia-including investing the time it takes to build up community engagement capacity, acknowledging and drawing on strengths of the communities of interest, assuring a strong infrastructure of accountability for community engagement, and grounding the work in anti-racist principles.
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BACKGROUND: Informal caregivers (e.g., partners, other family members, friends) often provide social support to Black women with breast cancer, and caregivers find both benefits and challenges in their caregiving role. METHODS: In this qualitative study, twenty-four caregivers for Black women with breast cancer participated in focus groups and interviews. Participants responded to a brief close-ended questionnaire as well as semi-structured questions about their experiences as cancer caregivers. Demographic information was collected, and relationship satisfaction was measured by the Relationship Assessment Scale-General scale (RAS-G). Focus groups and interviews were recorded, transcribed verbatim, and coded by two independent coders. Using an iterative, discussion-based process, the study team developed and refined themes. RESULTS: All caregivers described themselves as Black/African American, and the majority identified as female (79%). The mean RAS-G score was 4.5 (SD = 0.5), indicating high levels of relationship satisfaction. Qualitative themes included using a range of strategies to provide emotional support; shifting between roles; needing time and space; and trying to stay strong. Several female caregivers described how the cumulative experiences of providing care for multiple family members and friends could be draining, as could their own experiences in the patient role. CONCLUSIONS: These findings show a complex, multilayered social context that affects both the patient-caregiver relationship and the health and wellbeing of caregivers. Clinicians providing treatment and support for Black women with breast cancer should be mindful of how the health context of the family may affect patient and caregiver outcomes.