National Healthcare Quality and Disparities Report
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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 25 of 43 Research Studies DisplayedWust KL, Carayon P, Werner NE
Older adult patients and care partners as knowledge brokers in fragmented health care.
This study explores the knowledge broker roles of older adult patients and their care partners during emergency department (ED) visits. The research concludes that patients and care partners serve as information liaisons between fragmented care systems, providing details on diagnostic testing, medications, health history, and care accommodations. They engage in proactive and reactive knowledge brokering within and across ED work systems, aiding in communication and care coordination to mitigate healthcare fragmentation.
AHRQ-funded; HS026624.
Citation: Wust KL, Carayon P, Werner NE .
Older adult patients and care partners as knowledge brokers in fragmented health care.
Hum Factors 2024 Mar; 66(3):701-13. doi: 10.1177/00187208221092847.
Keywords: Elderly, Emergency Department, Caregiving, Clinician-Patient Communication, Communication
Pozzar RA, Wall JA, Tavormina A
Experiences of patients with peritoneal carcinomatosis-related complex care needs and their caregivers.
The study explored the needs of patients with peritoneal carcinomatosis (PC) and caregivers during care transitions. Findings showed limited prognostic understanding and advance care planning among patients, with most caregivers providing daily care without proper training. Many participants experienced anxiety and depression. Interviewees emphasized the lack of guidance and called for health system changes. The study concluded that interventions providing clinical training, facilitating serious illness conversations, and offering psychosocial support are necessary.
AHRQ-funded; HS013852.
Citation: Pozzar RA, Wall JA, Tavormina A .
Experiences of patients with peritoneal carcinomatosis-related complex care needs and their caregivers.
Gynecol Oncol 2024 Feb; 181:68-75. doi: 10.1016/j.ygyno.2023.12.013.
Keywords: Cancer, Caregiving, Palliative Care, Women
Nacht CL, Jacobson N, Shiyanbola O
Perception of physicians' notes among parents of different health literacy levels.
The study explored how parents of varying health literacy levels perceive accessing physicians' notes during pediatric hospitalization. Thematic analysis of interviews with 28 parents revealed benefits like information recall and autonomy, with challenges including receiving bad news before face-to-face communication. The study found that parents with limited literacy found notes especially helpful for understanding the care of the child while reducing worry. Simplifying medical terms could enhance note accessibility for all parents, ensuring equitable access to healthcare information.
AHRQ-funded; HS027214.
Citation: Nacht CL, Jacobson N, Shiyanbola O .
Perception of physicians' notes among parents of different health literacy levels.
Hosp Pediatr 2024 Feb; 14(2):108-15. doi: 10.1542/hpeds.2023-007240.
Keywords: Children/Adolescents, Health Literacy, Caregiving, Clinician-Patient Communication, Communication
Jolliff A, Coller RJ, Kearney H
An mHealth design to promote medication safety in children with medical complexity.
This study describes an effort to design a health information technology tool to improve medication safety for children with medical complexity (CMC). The study engaged family caregivers, secondary caregivers, and clinicians who work with CMC in a co-design process to identify: 1) medication safety challenges experienced by CMC caregivers and, 2) design requirements for a mobile health application to improve medication safety for CMC in the home. Family caregivers, secondary caregivers, and clinicians from a children's hospital-based pediatric complex care program participated in virtual co-design sessions. During these sessions, the facilitator guided 16 co-designers in generating and converging upon medication safety challenges and design requirements. These sessions were recorded and reviewed after conclusion to confirm that all designer comments had been captured. An analysis yielded 11 challenges to medication safety and 11 corresponding design requirements that fit into three broader challenges: giving the right medication at the right time; communicating with others about medications; and accommodating complex medical routines.
AHRQ-funded; HS028409.
Citation: Jolliff A, Coller RJ, Kearney H .
An mHealth design to promote medication safety in children with medical complexity.
Appl Clin Inform 2024 Jan; 15(1):45-54. doi: 10.1055/a-2214-8000..
Keywords: Children/Adolescents, Medication: Safety, Medication, Health Information Technology (HIT), Chronic Conditions, Telehealth, Caregiving
Kaufman BG, Holland DE, Vanderboom CE
Implementation costs of technology-enhanced transitional palliative care for rural caregivers.
Rural FCG experience higher levels of burden accessing coordinated care for their loved ones during and after hospitalization than urban family caregivers (FCG). The role of technology-enhanced transitional palliative care (TPC) on caregiver outcomes is currently being assessed in a randomized control trial. The purpose of this study was to assess resource use and health system costs of this FCG-focused TPC intervention and potential Medicare reimbursement mechanisms. The researchers randomized rural caregivers of hospitalized patients into an 8-week intervention which included video visits conducted by a registered nurse certified in palliative care, and supplemented with phone calls and texts (n = 215), or attentional control. The researchers estimated labor costs for a registered nurse and compared to scenario analyses utilizing a nurse practitioner or social worker wages. Medicare reimbursement scenarios included Transitional Care Management (TCM) and Chronic Care Management (CCM) CPT codes. The researchers found the base case, TPC cost was $395 per FCG conducted by a registered nurse, compared to $337 and $585 if conducted by a social worker or nurse practitioner, respectively. Reimbursement in the CCM-only scenario was $348 and $274 for complex and non-complex patients, respectively. Average Medicare reimbursement in the TCM-only scenario was $322 and $260 for high or moderate complexity patients, respectively. Reimbursement in the TCM+CCM scenario was $496 and $397, for high/complex and moderate/non-complex patients, respectively.
AHRQ-funded; HS026379.
Citation: Kaufman BG, Holland DE, Vanderboom CE .
Implementation costs of technology-enhanced transitional palliative care for rural caregivers.
Am J Hosp Palliat Care 2024 Jan; 41(1):38-44. doi: 10.1177/10499091231156145..
Keywords: Rural Health, Caregiving, Palliative Care, Health Information Technology (HIT)
Goyal NK, Sood E, Gannon MA
Priorities for well child care of families affected by parental opioid use disorder.
This study’s objective was to explore priorities for well childcare (WCC) visit content for women in treatment with opioid use disorder to inform primary care recommendations for this population. Eligible participants had children 2 years or younger and were English speaking. Among the 30 parent participants, they were overwhelmingly White (83%) and unmarried (90%). Thirteen clinicians participated, of whom 9 were attending physicians. Interviews were conducted with parents and clinicians which led to five emerging themes: (1) improving knowledge and confidence related to child development, behavior, and nutrition; (2) mitigating safety concerns; (3) addressing complex health and subspecialty needs through care coordination; (4) acknowledging parental health and wellbeing in the pediatric encounter; and (5) supporting health education and care related to neonatal opioid withdrawal syndrome. These issues were expressed as hard to address by parents and clinicians due to time constraints, social determinants of health, and significant informational needs.
AHRQ-funded; HS027399.
Citation: Goyal NK, Sood E, Gannon MA .
Priorities for well child care of families affected by parental opioid use disorder.
J Addict Med 2024 Jan-Feb; 18(1):48-54. doi: 10.1097/adm.0000000000001243..
Keywords: Opioids, Substance Abuse, Behavioral Health, Caregiving, Children/Adolescents
Graaf G, Hughes PM, deJong NA
Family support services and reported parent coping among caregivers of children with emotional, behavioral, or developmental disorders.
Researchers examined the association of family support services with caregiver mental health and well-being, as well as caregiver coping, among families of children with special health care needs (CSHCN). Data was taken from the National Survey of Children's Health. Results showed that adequate care coordination was associated with higher rates of caregiver-reported positive coping for CSHCN caregivers who had no source of emotional support. Emotional support services were also associated with increased reports of positive coping. The researchers concluded that mobilization of resources that can aid caregivers in coordinating care and provide emotional support may play a key role in positive caregiver coping for families of CSHCN.
AHRQ-funded; HS000032.
Citation: Graaf G, Hughes PM, deJong NA .
Family support services and reported parent coping among caregivers of children with emotional, behavioral, or developmental disorders.
J Dev Behav Pediatr 2024 Jan; 45(1):e54-e62. doi: 10.1097/dbp.0000000000001230.
Keywords: Children/Adolescents, Caregiving, Disabilities, Behavioral Health
Turner AM, Osterhage KP, Taylor JO, et al.
A closer look at health information seeking by older adults and involved family and friends: design considerations for health information technologies.
Older adults are the largest consumers of healthcare. As part of a broader study of personal health information management (PHIM), the investigators interviewed older adults in King County, Washington, and their involved family and friends (FF), regarding health information (HI) sources they seek and utilize. The authors indicated that design considerations include: facilitating access to quality provider-vetted HI, incorporating older adults and FF in the design process, and creating shared spaces for communication of HI among older adults, FF, and providers.
AHRQ-funded; HS022106.
Citation: Turner AM, Osterhage KP, Taylor JO, et al..
A closer look at health information seeking by older adults and involved family and friends: design considerations for health information technologies.
AMIA Annu Symp Proc 2018 Dec 5;2018:1036-45..
Keywords: Elderly, Health Information Technology (HIT), Caregiving, Education: Patient and Caregiver, Health Literacy
Quintana Y, Fahy D, Crotty B
InfoSAGE: Supporting elders and families through online family networks.
With an increasingly elderly population, families are finding it increasingly challenging to coordinate care for their older family members. This paper reports on the findings of InfoSAGE, an online private social network that has tools for communication and care coordination for elders and their families.
AHRQ-funded; HS021495; HS024869.
Citation: Quintana Y, Fahy D, Crotty B .
InfoSAGE: Supporting elders and families through online family networks.
AMIA Annu Symp Proc 2018 Dec 5;2018:932-41..
Keywords: Elderly, Caregiving, Health Information Technology (HIT), Communication, Clinician-Patient Communication, Care Coordination
Greenzang KA, Cronin AM, Kang TI
Parental distress and desire for information regarding long-term implications of pediatric cancer treatment.
In this study, the authors evaluated parental distress associated with information regarding future limitations, and the extent to which distress is associated with information preferences. The investigators concluded that although information regarding future limitations caused by cancer treatment is upsetting to many parents, the majority of them desire this information, and those who are distressed are more likely to value this information.
AHRQ-funded; HS022986.
Citation: Greenzang KA, Cronin AM, Kang TI .
Parental distress and desire for information regarding long-term implications of pediatric cancer treatment.
Cancer 2018 Dec 1;124(23):4529-37. doi: 10.1002/cncr.31772..
Keywords: Cancer, Caregiving, Children/Adolescents, Communication, Children/Adolescents
Kim K, Heinze K, Xu J
Theories of health care decision making at the end of life: a meta-ethnography.
The aim of this meta-ethnography was to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decisionmaking among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS), and their caregivers or providers. A conceptual framework was developed using themes including context of decision making, communication and negotiation of decisionmaking, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes.
AHRQ-funded; HS022140.
Citation: Kim K, Heinze K, Xu J .
Theories of health care decision making at the end of life: a meta-ethnography.
West J Nurs Res 2018 Dec;40(12):1861-84. doi: 10.1177/0193945917723010..
Keywords: Caregiving, Communication, Shared Decision Making, Palliative Care
Quintana Y, Crotty B, Fahy D
Information sharing across generations and environments (InfoSAGE): study design and methodology protocol.
This open prospective cohort study aimed to assess a novel, Internet based, family-centric communication and collaboration platform created to address the information needs of elders and their informal caregivers in a community setting. It used a mixed methods approach, utilizing qualitative survey data along with website usage analytic data.
AHRQ-funded; HS021495.
Citation: Quintana Y, Crotty B, Fahy D .
Information sharing across generations and environments (InfoSAGE): study design and methodology protocol.
BMC Med Inform Decis Mak 2018 Nov 20;18(1):105. doi: 10.1186/s12911-018-0697-4.
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BMC Med Inform Decis Mak 2018 Nov 20;18(1):105. doi: 10.1186/s12911-018-0697-4.
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Keywords: Caregiving, Communication, Shared Decision Making, Elderly, Health Information Technology (HIT), Patient-Centered Healthcare, Clinician-Patient Communication, Web-Based
Latulipe C, Quandt SA, Melius KA
Insights into older adult patient concerns around the caregiver proxy portal use: qualitative interview study.
The objective of this study was to examine how older adult patients perceive the benefits and risks of proxy patient portal access by their caregivers. The investigators concluded that patients shared their electronic patient portal credentials with caregivers to receive the benefits of those caregivers having access to important medical information but were unaware of all the information those caregivers could access. They suggest that better portal design could alleviate these unwanted information disclosures.
AHRQ-funded; HS021679.
Citation: Latulipe C, Quandt SA, Melius KA .
Insights into older adult patient concerns around the caregiver proxy portal use: qualitative interview study.
J Med Internet Res 2018 Nov 2;20(11):e10524. doi: 10.2196/10524..
Keywords: Electronic Health Records (EHRs), Elderly, Health Information Technology (HIT), Caregiving
Parikh K, Paul J, Foushee N
Barriers and facilitators to asthma care after hospitalization as reported by caregivers, health providers, and school nurses.
This study focused on developing a comprehensive understanding of asthma care after hospitalization of children as reported by caregivers, health providers, and school nurses. The children had a median age of 7 years, mean hospital length of stay of 1.9 days, and 56% had a previous hospitalization in the last 12 months. Family caregivers and health professionals were given individual interviews while focus groups were conducted with school nurses. There were different health beliefs about asthma knowledge between caregivers and health professionals. School nurses highlighted specific barriers that focused on medication use in schools.
AHRQ-funded; HS024554.
Citation: Parikh K, Paul J, Foushee N .
Barriers and facilitators to asthma care after hospitalization as reported by caregivers, health providers, and school nurses.
Hosp Pediatr 2018 Nov;8(11):706-17. doi: 10.1542/hpeds.2017-0182..
Keywords: Asthma, Hospitalization, Children/Adolescents, Caregiving, Patient Adherence/Compliance, Education
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.
AHRQ-funded; HS000063.
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 and Ethnic Minorities
Greenhawt M, Marsh R, Gilbert H
Understanding caregiver goals, benefits, and acceptable risks of peanut allergy therapies.
The purpose of this study was to determine, using semistructured interviews, caregiver goals and expectations of food allergy therapy. The investigators found that caregivers of peanut allergic children strongly desire that oral immunotherapy and epicutaneous immunotherapy result in a buffer against an unintentional reaction, although most admitted that this would not significantly change their anxiety and family's current lifestyle.
AHRQ-funded; HS024599.
Citation: Greenhawt M, Marsh R, Gilbert H .
Understanding caregiver goals, benefits, and acceptable risks of peanut allergy therapies.
Ann Allergy Asthma Immunol 2018 Nov;121(5):575-79. doi: 10.1016/j.anai.2018.06.018..
Keywords: Caregiving, Children/Adolescents
Smith TM, Pappadis MR, Krishnan S
Stroke survivor and caregiver perspectives on post-stroke visual concerns and long-term consequences.
The purpose of this study was to explore the post-stroke visual concerns and consequences expressed by stroke survivors and caregivers using semistructured interviews conducted with a convenience sample of stroke survivors and caregivers recruited from either a community support group or skilled nursing and long-term care facilities.
AHRQ-funded; HS022134; HS024711.
Citation: Smith TM, Pappadis MR, Krishnan S .
Stroke survivor and caregiver perspectives on post-stroke visual concerns and long-term consequences.
Behav Neurol 2018 Oct 4;2018:1463429. doi: 10.1155/2018/1463429..
Keywords: Caregiving, Stroke
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.
AHRQ-funded; HS022932.
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, Shared Decision Making, Caregiving, Racial and 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.
AHRQ-funded; HS000032.
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, Shared Decision Making, Disabilities, Disparities, Racial and Ethnic Minorities
Crossman MK, Parish SL, Hauser-Cram P
The influence of early intervention, informal support and the family environment on trajectories of competence for fathers raising children with developmental disabilities.
The aims of this study are: (1) To determine the trajectory of parental competence for fathers of children with developmental disabilities from age 3 to age 15; (2) Controlling for child and family characteristics, determine the main effects of the family environment, informal support, and early intervention (EI) services on paternal competence when their child with a developmental disability was age 3; and (3) To determine whether there were lasting effects of the family environment, informal support, and the EI service system on differences in paternal competence over time.
AHRQ-funded; HS000063.
Citation: Crossman MK, Parish SL, Hauser-Cram P .
The influence of early intervention, informal support and the family environment on trajectories of competence for fathers raising children with developmental disabilities.
Res Dev Disabil 2018 Oct;81:122-33. doi: 10.1016/j.ridd.2018.04.025..
Keywords: Caregiving, Children/Adolescents, Disabilities, Family Health and History
Taylor JO, Hartzler AL, Osterhage KP
Monitoring for change: the role of family and friends in helping older adults manage personal health information.
Although family and friends (FF) often play a significant support role in the health of older adults (OA), little is known about their role in personal health information management (PHIM). To address this gap and inform the design of PHIM tools, the investigators described the work, needs, and barriers of FF in the context of PHIM for OAs.
AHRQ-funded; HS022106.
Citation: Taylor JO, Hartzler AL, Osterhage KP .
Monitoring for change: the role of family and friends in helping older adults manage personal health information.
J Am Med Inform Assoc 2018 Aug;25(8):989-99. doi: 10.1093/jamia/ocy037..
Keywords: Caregiving, Elderly, Electronic Health Records (EHRs), Health Information Technology (HIT)
Shah PD, Calo WA, Marciniak MW
Support for pharmacist-provided HPV vaccination: national surveys of U.S. physicians and parents.
Cancer Epidemiol Biomarkers Prev 2018 Aug;27(8):970-78. doi: 10.1158/1055-9965.Epi-18-0380.
State laws about pharmacists providing human papillomavirus (HPV) vaccines vary considerably, limiting many pharmacists' ability to provide this important cancer prevention service. In this study, the investigators characterized physician and parent support for pharmacist-provided HPV vaccination for adolescents who are past due for vaccination. The authors concluded that to increase support for HPV vaccination services, pharmacists should raise awareness about their immunization training and standardize vaccination protocols that ensure coordination with primary care.
State laws about pharmacists providing human papillomavirus (HPV) vaccines vary considerably, limiting many pharmacists' ability to provide this important cancer prevention service. In this study, the investigators characterized physician and parent support for pharmacist-provided HPV vaccination for adolescents who are past due for vaccination. The authors concluded that to increase support for HPV vaccination services, pharmacists should raise awareness about their immunization training and standardize vaccination protocols that ensure coordination with primary care.
AHRQ-funded; HS000032.
Citation: Shah PD, Calo WA, Marciniak MW .
Support for pharmacist-provided HPV vaccination: national surveys of U.S. physicians and parents.
Cancer Epidemiol Biomarkers Prev 2018 Aug;27(8):970-78. doi: 10.1158/1055-9965.Epi-18-0380..
Keywords: Caregiving, Children/Adolescents, Infectious Diseases, Provider, Provider: Pharmacist, Provider: Physician, Vaccination
Desai AD, Jacob-Files EA, Lowry SJ
Development of a caregiver-reported experience measure for pediatric hospital-to-home transitions.
The objective for this study was to develop and test a caregiver-reported experience measure for pediatric hospital-to-home transitions. An eight-item caregiver-reported experience measure to evaluate hospital-to-home transition outcomes in pediatric populations demonstrated acceptable content validity and psychometric properties.
AHRQ-funded; HS024299.
Citation: Desai AD, Jacob-Files EA, Lowry SJ .
Development of a caregiver-reported experience measure for pediatric hospital-to-home transitions.
Health Serv Res 2018 Aug;53 Suppl 1:3084-106. doi: 10.1111/1475-6773.12864..
Keywords: Caregiving, Children/Adolescents, Patient-Centered Outcomes Research, Quality Measures, Transitions of Care
Muenks CE, Sewell WC, Hogan PG
Methicillin-resistant staphylococcus aureus: the effects are more than skin deep.
The purpose of the study was to assess the psychosocial effects of a methicillin-resistant Staphylococcus aureus (MRSA) diagnosis on the households of children with MRSA skin and soft tissue infection (SSTI). The study found that primary caregivers of children with MRSA SSTI reported changing their health behaviors, altering their interactions with people outside of their home, and feeling isolated by others in response to their child's MRSA diagnosis.
AHRQ-funded; HS021736.
Citation: Muenks CE, Sewell WC, Hogan PG .
Methicillin-resistant staphylococcus aureus: the effects are more than skin deep.
J Pediatr 2018 Aug;199:158-65. doi: 10.1016/j.jpeds.2018.04.002..
Keywords: Caregiving, Children/Adolescents, Family Health and History, Methicillin-Resistant Staphylococcus aureus (MRSA), Social Stigma
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.
AHRQ-funded; HS023185.
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 and Ethnic Minorities, Social Determinants of Health