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Research Studies is a monthly compilation of research articles funded by AHRQ or authored by AHRQ researchers and recently published in journals or newsletters.
Results1 to 13 of 13 Research Studies Displayed
Steinberg RS, Nayak A, Burke MA
Association of race and gender with primary caregiver relationships and eligibility for advanced heart failure therapies.
Caregiver support is considered necessary after heart transplant (HT) and left ventricular assist device (LVAD) for patients with end-stage heart failure (HF). Few studies have demonstrated how caregivers differ by gender and race, and whether that impacts therapy eligibility. In this study, the investigators examined caregiver relationships among 674 patients (32% women, 55% Black) evaluated at Emory University from 2011 to 2017.
Citation: Steinberg RS, Nayak A, Burke MA . Association of race and gender with primary caregiver relationships and eligibility for advanced heart failure therapies. Clin Transplant 2022 Jan;36(1):e14502. doi: 10.1111/ctr.14502..
Keywords: Caregiving, Racial / Ethnic Minorities, Heart Disease and Health, Cardiovascular Conditions
Ejem D, Steinhauser K, Dionne-Odom JN
Exploring culturally responsive religious and spirituality health care communications among African Americans with advanced heart failure, their family caregivers, and clinicians.
This study explored how religion and spirituality (R/S) impacts the ways that African Americans (AAs) cope with serious illness. In particular, this study looks at AAs with advanced heart failure and their family caregivers’ (FCGs) preferences about R/S in patient-clinician communication. Transcribed interviews were analyzed to identify emergent themes. AA patient participants (n = 15) were a mean age of 62, 40% female, and 87% had >high school diploma/GED. AA FCGs (n = 14) were a mean age of 58, 93% female, 93% had >high school diploma/GED, and 86% were unemployed. Most caregivers were patients’ spouses/partners. All participants were Protestants. Patients and FCGs perspectives differed in relation to inclusion of R/S in health care communication. Patients felt that R/S should not be discussed in clinical encounters and discussed only if patient initiated. FCGs felt that clinicians’ R/S communication is not a priority, but clinicians should openly acknowledge patients’ R/S beliefs and should engage in R/S conversations with patients.
Citation: Ejem D, Steinhauser K, Dionne-Odom JN . Exploring culturally responsive religious and spirituality health care communications among African Americans with advanced heart failure, their family caregivers, and clinicians. J Palliat Med 2021 Dec;24(12):1798-806. doi: 10.1089/jpm.2021.0044..
Keywords: Racial / Ethnic Minorities, Communication, Heart Disease and Health, Cardiovascular Conditions, Caregiving
Tremblay ES, Ruiz J, Dykeman B
Hispanic caregivers' experience of pediatric type 1 diabetes: a qualitative study.
It is widely recognized that Type 1 Diabetes (T1D) outcomes are worse among Hispanic children; however, little is published about the perspectives of these patients and their caregivers. The intent of this study was to characterize the lived experience of Hispanic caregivers of children with T1D, focusing on the role of language and culture and their perspectives on current medical care and alternative care models.
Citation: Tremblay ES, Ruiz J, Dykeman B . Hispanic caregivers' experience of pediatric type 1 diabetes: a qualitative study. Pediatr Diabetes 2021 Jul 7;22(7):1040-50. doi: 10.1111/pedi.13247..
Keywords: Children/Adolescents, Diabetes, Caregiving, Chronic Conditions, Racial / Ethnic Minorities, Cultural Competence
Hale KL, Wallace DD, Blanco-Duran D
Conversations between Latina mothers and their child's mental health provider: An observational study of shared decision-making regarding pediatric patient mental health needs.
The authors evaluated shared decision-making (SDM) and delineated SDM processes in audio-recorded conversations between language-congruent Spanish-/English-speaking clinicians and parents of pediatric mental health patients. They found that their present sample performed on par with other populations studied to date, and that it expanded the evaluation of observed SDM to include Latino patients and new clinician populations. The practical implications of their findings is that use of the Observer OPTION(5) instrument highlights that eliciting and integrating parent/patient preferences is a skill that requires attention when delivering culturally competent interventions.
Citation: Hale KL, Wallace DD, Blanco-Duran D . Conversations between Latina mothers and their child's mental health provider: An observational study of shared decision-making regarding pediatric patient mental health needs. Patient Educ Couns 2020 Jan;103(1):96-102. doi: 10.1016/j.pec.2019.08.013..
Keywords: Children/Adolescents, Decision Making, Cultural Competence, Racial / Ethnic Minorities, Clinician-Patient Communication, Communication, Caregiving, Behavioral Health
Goff SL, Garb JL, Guhn-Knight H
Spatial analysis of factors influencing choice of paediatric practice for mothers from low-income and minority populations.
Publicly reported quality data theoretically enable parents to choose higher-performing paediatric practices. However, little is known about how parents decide where to seek paediatric care. In this study, the investigators explored the relationship between geographic factors, care quality and choice of practice to see if the decision-making process could be described in terms of a 'gravity model' of spatial data.
Citation: Goff SL, Garb JL, Guhn-Knight H . Spatial analysis of factors influencing choice of paediatric practice for mothers from low-income and minority populations. J Paediatr Child Health 2019 Aug;55(8):948-55. doi: 10.1111/jpc.14322..
Keywords: Caregiving, Decision Making, Low-Income, Quality of Care, Racial / Ethnic Minorities
Toomey SL, Elliott MN, Zaslavsky AM
Improving response rates and representation of hard-to-reach groups in family experience surveys.
This study examined the use of an audio-enabled tablet to survey parents of children discharged from 4 units of a children’s hospital. Normal mail survey response rates are very low, especially for black, Latino, and low-income respondents. This survey was done day of discharge at the hospital and there was a response rate of 71.1% via tablet versus 16.3% for mail only. The Child Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey was used. Tablet response rates were highest with fathers, those more likely to have a high school education or less, less likely to be white, and more likely to be publicly insured. The results are promising for future surveys using tablet administration.
AHRQ-funded; HS020513; HS025299.
Citation: Toomey SL, Elliott MN, Zaslavsky AM . Improving response rates and representation of hard-to-reach groups in family experience surveys. Acad Pediatr 2019 May - Jun;19(4):446-53. doi: 10.1016/j.acap.2018.07.007..
Keywords: Caregiving, Children/Adolescents, Consumer Assessment of Healthcare Providers and Systems (CAHPS), Health Information Technology (HIT), Hospitals, Low-Income, Patient Experience, Quality of Care, Quality Improvement, Racial / Ethnic Minorities
Zuckerman KE, Chavez AE, Regalado Murillo C
Disparities in familiarity with developmental disabilities among low-income parents.
Parent knowledge about developmental disabilities (DDs) may facilitate access to DD care; however, parents may vary in their knowledge and familiarity with common DDs. The objective of this study was to assess racial/ethnic and language differences in low-income families' familiarity, knowledge, and personal experience with DDs. The investigators concluded that low-income Latino-LEP and other race parents have less familiarity or personal experience with DDs and are less aware of early signs of DDs compared to low-income white parents.
Citation: Zuckerman KE, Chavez AE, Regalado Murillo C . Disparities in familiarity with developmental disabilities among low-income parents. Acad Pediatr 2018 Nov - Dec;18(8):944-51. doi: 10.1016/j.acap.2018.06.011..
Keywords: Disabilities, Children/Adolescents, Caregiving, Health Literacy, Low-Income, Vulnerable Populations, Racial / Ethnic Minorities
Harris VC, Links AR, Walsh J
A systematic review of race/ethnicity and parental treatment decision-making.
Researchers examined patient race/ethnicity as it affects health care utilization, provider trust, and treatment choice in pediatric care. Pooled results from their systematic review showed (1) racial/ethnic minorities tended to prefer more aggressive end-of-life care; (2) familial tradition of neonatal circumcision influenced the decision to circumcise; and (3) non-Hispanic Whites were less likely to pursue human papillomavirus vaccination but more likely to complete the vaccine series if initiated. They recommended further investigation.
Citation: Harris VC, Links AR, Walsh J . A systematic review of race/ethnicity and parental treatment decision-making. Clin Pediatr 2018 Oct;57(12):1453-64. doi: 10.1177/0009922818788307..
Keywords: Children/Adolescents, Decision Making, Caregiving, Racial / Ethnic Minorities, Healthcare Utilization
Jolles MP, Lee PJ, Javier JR
Shared decision-making and parental experiences with health services to meet their child's special health care needs: racial and ethnic disparities.
This study investigated the relationship between shared decision-making (SDM) and parents’ frustrations in getting health needs met for their special needs child. Secondary analysis was done on data from the 2009-2010 National Survey of Children with Special Health Care Needs. More Whites than Blacks engaged in SDM, and when Blacks did engage they had a higher odds of negative experiences than Whites. Researchers weren’t sure what the cause was of that, but speculated it was due to increased awareness of service challenges.
Citation: Jolles MP, Lee PJ, Javier JR . Shared decision-making and parental experiences with health services to meet their child's special health care needs: racial and ethnic disparities. Patient Educ Couns 2018 Oct;101(10):1753-60. doi: 10.1016/j.pec.2018.05.022..
Keywords: Access to Care, Caregiving, Children/Adolescents, Decision Making, Disabilities, Disparities, Racial / Ethnic Minorities
Sentell TL, Shen C, Landsittel D
Racial/ethnic differences in those accompanying Medicare patients to the doctor: insights from the 2013 Medicare current beneficiary's survey.
This study used multivariable models applied to Medicare Current Beneficiary's Survey Access to Care public use data in order to predict companion accompaniment to health care providers among Medicare beneficiaries; Chi square analyses compared, by race/ethnicity, who was accompanying patients and why. Black and Hispanic patients were more likely to be accompanied than whites. In all three groups, more than a third of patients brought someone with them to ‘take notes,’ ‘ask questions,’ and/or ‘explain things,’ but significantly more Hispanic patients brought a companion to ‘explain instructions,’ ‘translate,’ and/or to provide ‘moral support.’ The authors conclude that many Medicare beneficiaries are accompanied to doctors' appointments, particularly among minority racial/ethnic groups, and that this should be taken in consideration in healthcare policy and practice.
Citation: Sentell TL, Shen C, Landsittel D . Racial/ethnic differences in those accompanying Medicare patients to the doctor: insights from the 2013 Medicare current beneficiary's survey. J Immigr Minor Health 2018 Aug;20(4):776-83. doi: 10.1007/s10903-017-0582-8..
Keywords: Caregiving, Elderly, Medicare, Racial / Ethnic Minorities, Social Determinants of Health
Gilmore-Bykovskyi A, Johnson R, Walljasper L
Underreporting of gender and race/ethnicity differences in NIH-funded dementia caregiver support interventions.
The objective of this study was to determine the inclusion and reporting rates among NIH-funded dementia caregiver support interventions. Findings suggested limited NIH guideline compliance that may reflect a lack of awareness regarding potential gender disparities in caregiving roles. In order to ensure NIH guideline compliance, shared investments from researchers, editors, and reviewers to make certain that group differences are systematically identified and reported are recommended.
Citation: Gilmore-Bykovskyi A, Johnson R, Walljasper L . Underreporting of gender and race/ethnicity differences in NIH-funded dementia caregiver support interventions. Am J Alzheimers Dis Other Demen 2018 May;33(3):145-52. doi: 10.1177/1533317517749465..
Keywords: Caregiving, Sex Factors, Racial / Ethnic Minorities, Guidelines, Dementia, Disparities
Riley K, Nazareno J, Malish S
24-hour care: work and sleep conditions of migrant Filipino live-in caregivers in Los Angeles.
The authors examined sleeping conditions and outcomes for live-in formal caregivers. They found that caregivers rated sleep quality as lower while at work and that over 40% reported excessive daytime sleepiness. They concluded that impacts on sleep quality pose risks for work-related injury and errors in patient care.
Citation: Riley K, Nazareno J, Malish S . 24-hour care: work and sleep conditions of migrant Filipino live-in caregivers in Los Angeles. Am J Ind Med 2016 Dec;59(12):1120-29. doi: 10.1002/ajim.22647.
Keywords: Caregiving, Health Services Research (HSR), Racial / Ethnic Minorities, Sleep Problems
Heerman WJ, Perrin EM, Sanders LM
Racial and ethnic differences in injury prevention behaviors among caregivers of infants.
The objective of this study is to evaluate the association between caregiver race/ethnicity and adherence to injury prevention recommendations. It concluded that a high prevalence of non-adherence to recommended injury prevention behaviors is common across racial/ethnic categories for caregivers of infants among a diverse sample of families from low-SES backgrounds.
Citation: Heerman WJ, Perrin EM, Sanders LM . Racial and ethnic differences in injury prevention behaviors among caregivers of infants. Am J Prev Med 2016 Oct;51(4):411-8. doi: 10.1016/j.amepre.2016.04.020.
Keywords: Caregiving, Family Health and History, Injuries and Wounds, Prevention, Racial / Ethnic Minorities