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Topics
- Adverse Events (1)
- Ambulatory Care and Surgery (1)
- Autism (1)
- Behavioral Health (3)
- Cardiovascular Conditions (1)
- (-) Caregiving (22)
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- Children/Adolescents (6)
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- Comparative Effectiveness (1)
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- Elderly (4)
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- Low-Income (1)
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- Neurological Disorders (2)
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- Obesity (1)
- Opioids (1)
- Pain (1)
- Palliative Care (2)
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- Primary Care (1)
- Provider Performance (1)
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- Quality of Care (1)
- Quality of Life (1)
- Racial and Ethnic Minorities (1)
- Shared Decision Making (2)
- Skin Conditions (1)
- Social Media (1)
- Stroke (1)
- Substance Abuse (1)
- Surgery (2)
- Telehealth (2)
- Transitions of Care (1)
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 22 of 22 Research Studies DisplayedRamirez M, De Anda S, Jin H
Health information-seeking behavior of Latino caregivers of people living with dementia: a mixed-methods study.
This study examined the health information-seeking behavior of Latino caregivers of people living with dementia. This mixed-methods study used a structured survey and semi-structured interviews with 21 Latino caregivers in Los Angeles, California. Semi-structured interviews were also conducted with six healthcare and social service providers. The results showed that caregivers sought information on what changes to expect as dementia progresses to be better prepared. The most common action they used was to search the Internet. However, those who did were concerned about the quality of information.
AHRQ-funded; HS00046,HS026369.
Citation: Ramirez M, De Anda S, Jin H .
Health information-seeking behavior of Latino caregivers of people living with dementia: a mixed-methods study.
J Appl Gerontol 2023 Aug; 42(8):1738-48. doi: 10.1177/07334648231163430..
Keywords: Caregiving, Dementia, Neurological Disorders, Racial and Ethnic Minorities
Bristol AA, Elmore CE, Weiss ME
Mixed-methods study examining family carers' perceptions of the relationship between intrahospital transitions and patient readiness for discharge.
Intrahospital transitions (IHTs) may disrupt care coordination. Family caregivers often serve as liaisons between the patient and healthcare professionals, yet caregivers are often excluded from care planning during IHTs. The aim of this sequential, explanatory mixed-methods study was to examine family caregiver’s perceptions about IHTs, patient and caregiver ratings of patient discharge readiness, and caregiver self-perception of level of preparedness for engaging in care at home. The researchers conducted a retrospective analysis of hospital inpatients from a parent study for whom patient and family caregiver Readiness for Hospital Discharge Scale (RHDS) score frequency of IHTs and patient and caregiver characteristics were available. The study found that a total of 268 patients discharged from July 2020 to April 2021 had completed the RHDS and 23 completed the semi-structured interviews. The majority of patients experienced 0-2 IHTs and reported high levels of discharge readiness. No association was found between IHTs and patients' RHDS scores in the quantitative analysis. However, caregiver’s perceptions of patient discharge readiness were negatively correlated with increased IHTs. In addition, non-spouse caregivers reported lower RHDS scores than spousal caregivers. During interviews, caregivers shared barriers experienced during IHTs and described the importance of being included in discharge care planning.
AHRQ-funded; HS026248; HS026505.
Citation: Bristol AA, Elmore CE, Weiss ME .
Mixed-methods study examining family carers' perceptions of the relationship between intrahospital transitions and patient readiness for discharge.
BMJ Qual Saf 2023 Aug; 32(8):447-56. doi: 10.1136/bmjqs-2022-015120..
Keywords: Caregiving, Hospital Discharge, Transitions of Care
Sideman AB, Gilissen J, Harrison KL
Caregiver experiences navigating the diagnostic journey in a rapidly progressing dementia.
This mixed-methods study examined the diagnostic journey experience from the perspective of caregivers of people who died from sporadic Creutzfeldt-Jakob Disease (sCJD). Qualitative data were drawn from interviews with former caregivers of 12 people who had died from sCJD. Four overarching themes were identified, as well as 4 phases along the diagnostic journey. Findings suggested that more work was needed to improve clinician diagnostic knowledge and communication practices. The authors also noted that caregivers need better support during the diagnostic journey and concluded that lessons learned from studying sCJD and other rapidly progressive dementias is likely to be applicable to more common dementias.
AHRQ-funded; HS022241.
Citation: Sideman AB, Gilissen J, Harrison KL .
Caregiver experiences navigating the diagnostic journey in a rapidly progressing dementia.
J Geriatr Psychiatry Neurol 2023 Jul; 36(4):282-94. doi: 10.1177/08919887221135552..
Keywords: Caregiving, Dementia, Neurological Disorders
Keita Fakeye MB, Samuel LJ, Drabo EF
Caregiving-related work productivity loss among employed family and other unpaid caregivers of older adults.
Despite the fact that a significant proportion of caregivers to elderly individuals are employed, little is known about short-term work impacts of caregiving while physically present at work using measures related to both missed work time and reduced productivity. The purpose of this study was to quantify the prevalence, costs, and correlates of caregiving-related work productivity loss. The researchers utilized the 2015 National Study of Caregiving and National Health and Aging Trends Study to estimate caregiving-related work absences (absenteeism) and reduced productivity while at work (presenteeism). The costs of lost productivity using hours lost, compensation, and a wage multiplier, accounting for the additional cost of replacing employee time were calculated. Researchers then separately examined the relationship between caregiving-related absenteeism and presenteeism. The study found that Nearly 1 in 4 of the estimated 8.8 million employed family caregivers reported either absenteeism or presenteeism over a 1-month period due to caregiving. Among those affected, caregiving decreased work productivity by an estimated $5600 per employee predominantly due to reduced performance at work. Loss of productivity was greater among the caregivers of older adults with substantial care needs and varied based on sociodemographic characteristics and caregiver supports.
AHRQ-funded; HS000029.
Citation: Keita Fakeye MB, Samuel LJ, Drabo EF .
Caregiving-related work productivity loss among employed family and other unpaid caregivers of older adults.
Value Health 2023 May; 26(5):712-20. doi: 10.1016/j.jval.2022.06.014..
Keywords: Caregiving, Elderly
Auger KA, Demeritt B, Beck AF
Reducing caregiver hunger during pediatric hospitalization.
This paper describes an effort to decrease the mean percentage of caregivers who reported being hungry while their child is hospitalized. The objective was to decrease the mean percentage of caregivers of Medicaid-insured and uninsured children who reported being hungry during their child's hospitalization from 86% to <24%. The authors were able to decrease caregiver hunger on a 41-bed inpatient unit at their large, urban academic hospital from 86% to 15.5% with the use of 2 meal vouchers per caregiver per day. Data collection was interrupted due to the COVID-19 pandemic, however that time was used to advocate for hospital-funded support for optimal and sustainable changes to caregiver meal access. As a result of the pilot test, permanent hospital funding was secured to provide cards to purchase 2 meals per caregiver per hospital day, resulting in a sustained decrease in rates of caregiver hunger.
AHRQ-funded; HS024735.
Citation: Auger KA, Demeritt B, Beck AF .
Reducing caregiver hunger during pediatric hospitalization.
Pediatrics 2023 May; 151(5). doi: 10.1542/peds.2022-058080..
Keywords: Children/Adolescents, Caregiving
Carroll AR, Schlundt D, Bonnet K
Caregiver and clinician perspectives on discharge medication counseling: a qualitative study.
This study’s objective was to explore the perspectives of multidisciplinary clinicians and caregivers regarding discharge medication counseling for children and to develop a conceptual model to inform intervention efforts to reduce discharge medication dosing errors. The authors conducted a qualitative analysis using results from focus groups and individual interviews with 17 caregivers and 16 clinicians. Domains and subthemes included: (1) infrastructure of healthcare delivery, including supplies for counseling, content and organization of discharge instructions, clinician training and education, roles and responsibilities of team members, and hospital pharmacy delivery and counseling program; (2) processes of healthcare delivery, including medication reconciliation, counseling content, counseling techniques, and language barriers and health literacy; and (3) measurable outcomes, including medication dosing accuracy and caregiver understanding and adherence to discharge instructions. The conceptual model that resulted from this analysis can be applied to the development and evaluation of interventions to reduce discharge medication dosing errors following a hospitalization.
AHRQ-funded; HS026122.
Citation: Carroll AR, Schlundt D, Bonnet K .
Caregiver and clinician perspectives on discharge medication counseling: a qualitative study.
Hosp Pediatr 2023 Apr; 13(4):325-42. doi: 10.1542/hpeds.2022-006937..
Keywords: Children/Adolescents, Medication, Hospital Discharge, Education: Patient and Caregiver, Caregiving
Short VL, Gannon M, Sood E
Opportunities to increase well-child care engagement for families affected by maternal opioid use disorder: perceptions of mothers and clinicians.
The objectives of this qualitative study were to gather in-depth information regarding maternal and clinician-reported factors that facilitate or hinder well-child care (WCC) engagement as well as information from mothers' experiences during WCC visits. Thirty mothers in treatment for parental opioid use disorder (OUD) and 13 clinicians working at a pediatric primary care clinic participated by completing one telephone session which involved a brief questionnaire followed by a semi-structured interview. Facilitators identified by mothers and clinicians, included continuity of care, addressing material needs, and clinician OUD training and knowledge. Barriers to WCC included: stigma toward mothers with OUD, gaps in basic parenting knowledge, competing specialized health care needs, and insufficient time to address concerns.
AHRQ-funded; HS027399.
Citation: Short VL, Gannon M, Sood E .
Opportunities to increase well-child care engagement for families affected by maternal opioid use disorder: perceptions of mothers and clinicians.
Acad Pediatr 2023 Mar;23(2):425-33. doi: 10.1016/j.acap.2022.07.013.
Keywords: Children/Adolescents, Family Health and History, Opioids, Substance Abuse, Behavioral Health, Caregiving, Patient and Family Engagement
Couch E, Belanger E, Gadbois EA
"I know that my role is going to change": a mixed-methods study of the relationship between amyloid-β PET scan results and caregiver burden.
The purpose of this study was to clarify the relationship between amyloid scan results and subjective and objective indicators of burden. The researchers utilized a parallel mixed-methods design using survey data from 1,338 care partners of persons with mild cognitive impairment (MCI) and dementia who received an amyloid scan from the CARE-IDEAS study, and semi-structured interviews with a subsample of 62 care partners. The study found that amyloid was not associated with burden. However, the scan result influenced participants' perceptions of their caregiving role and coping strategies. Care partners to persons with elevated amyloid expected increasing responsibility, while partners to persons without elevated amyloid and mild cognitive impairment did not anticipate changes to their role. Care partners to persons with elevated amyloid reported using knowledge gained from the scan to develop coping strategies. All care partners described needing practical and emotional support.
AHRQ-funded; HS000011.
Citation: Couch E, Belanger E, Gadbois EA .
"I know that my role is going to change": a mixed-methods study of the relationship between amyloid-β PET scan results and caregiver burden.
Aging Clin Exp Res 2023 Feb; 35(2):387-97. doi: 10.1007/s40520-022-02314-6..
Keywords: Caregiving, Dementia
Hale KL, Zalla LC, Scherer EM
Grandparenting activities and mental health in Northern Sri Lanka.
The role of grandparenting activities in mitigating social engagement and depressive symptoms in older adults is a growing area of research interest. However, the diversity in demographic characteristics and caregiving responsibilities pose challenges in its measurement. The purpose of this study was to pilot test a mechanism for assessing grandparenting activities in a sample of 79 grandparents (aged 55 and above) in Sri Lanka and examined the relationship between these activities and psychological discomfort. The researchers further investigated if the correlation was influenced by the grandparents' functional constraints. The study found a positive correlation between increased involvement in generative grandparenting activities and reduced psychological distress, with the association being more pronounced in grandparents with higher functional restrictions.
AHRQ-funded; HS000032.
Citation: Hale KL, Zalla LC, Scherer EM .
Grandparenting activities and mental health in Northern Sri Lanka.
J Intergener Relatsh 2023; 21(2):194-214. doi: 10.1080/15350770.2021.1991869..
Keywords: Caregiving, Behavioral Health, Elderly
De Roo AC, Ha J, Regenbogen SE
Impact of Medicare eligibility on informal caregiving for surgery and stroke.
The purpose of this study was to assess whether the intensity of family and friend care changes after older individuals enroll in Medicare at 65. Researchers used Health and Retirement Study survey data covering a 20-year period to compare informal care received by patients who had been hospitalized for stroke, heart surgery, or joint surgery, and who were stratified into propensity-weighted pre- and post-Medicare eligibility cohorts. Their results showed that onset of Medicare eligibility was associated with a substantial decrease in family and friend caregiving use received by stroke patients, but not in the other acute care cohorts. They concluded that this effect of Medicare coverage on informal caregiving had implications for patient function and caregiver burden, and should be considered in episode-based reimbursement models that alter professional rehabilitative care intensity.
AHRQ-funded; HS000053.
Citation: De Roo AC, Ha J, Regenbogen SE .
Impact of Medicare eligibility on informal caregiving for surgery and stroke.
Health Serv Res 2023 Feb; 58(1):128-39. doi: 10.1111/1475-6773.14019..
Keywords: Medicare, Caregiving, Surgery, Stroke, Cardiovascular Conditions
Silverberg JI, Patel N, Immaneni S
Assessment of atopic dermatitis using self-report and caregiver report: a multicentre validation study.
The researchers sought to validate the assessment of self- and caregiver-reported eczema. They performed a prospective multicentre dermatology-practice-based study (three sites) to determine the validity of caregiver- and self-reported ever having eczema and 1-year history of eczema. Their conclusion was that self- and caregiver-reported diagnosis of eczema ever or in the past year based on a single question demonstrated sufficient validity for the epidemiological study of eczema.
AHRQ-funded; HS023011.
Citation: Silverberg JI, Patel N, Immaneni S .
Assessment of atopic dermatitis using self-report and caregiver report: a multicentre validation study.
Br J Dermatol 2015 Dec;173(6):1400-4. doi: 10.1111/bjd.14031.
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Keywords: Skin Conditions, Diagnostic Safety and Quality, Caregiving
Pezzin LE, Pollak RA, Schone BS
AHRQ Author: Schone BS
Bargaining power, parental caregiving, and intergenerational coresidence.
The researchers examined the effect of changes in parent–child coresidence on caregiving decisions of non-resident siblings over a 5-year period while controlling for characteristics of the elderly parent and adult children in the family network. They found that find that children whose parent and sibling begin coresiding during the study period are less likely to provide care and provide fewer hours of care than children whose parents never coresided with a child.
AHRQ-authored.
Citation: Pezzin LE, Pollak RA, Schone BS .
Bargaining power, parental caregiving, and intergenerational coresidence.
J Gerontol B Psychol Sci Soc Sci 2015 Nov;70(6):969-80. doi: 10.1093/geronb/gbu079..
Keywords: Caregiving, Elderly
Kennedy-Hendricks A, Schwartz H, Thornton RJ
Intergenerational social networks and health behaviors among children living in public housing.
The researchers investigated whether caretakers' social networks are linked with children's health status. They found that caretaker social networks are independently associated with certain aspects of child health, suggesting the importance of the broader social environment for low-income children's health.
AHRQ-funded; HS023009.
Citation: Kennedy-Hendricks A, Schwartz H, Thornton RJ .
Intergenerational social networks and health behaviors among children living in public housing.
Am J Public Health 2015 Nov;105(11):2291-7. doi: 10.2105/ajph.2015.302663.
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Keywords: Caregiving, Children/Adolescents, Family Health and History, Health Status, Low-Income
Horner-Johnson W, Dobbertin K, Kulkarni-Rajasekhara S
Food insecurity, hunger, and obesity among informal caregivers.
Increasing numbers of US residents rely on informal caregiving from friends and family members. Caregiving can have substantial health and financial impacts on caregivers. This study addressed whether those impacts include adverse nutritional states. It concluded that caregiving is associated with increased risk of food insecurity and hunger in Oregon.
AHRQ-funded; HS022981.
Citation: Horner-Johnson W, Dobbertin K, Kulkarni-Rajasekhara S .
Food insecurity, hunger, and obesity among informal caregivers.
Prev Chronic Dis 2015 Oct 8;12:E170. doi: 10.5888/pcd12.150129..
Keywords: Caregiving, Obesity, Nutrition, Health Status
Radovic A, Reynolds K, McCauley HL
Parents' role in adolescent depression care: primary care provider perspectives.
This study aimed to understand how primary care providers (PCPs) perceive barriers to adolescent depression care in order to inform strategies to increase treatment engagement. PCPs perceived that parental unwillingness to accept the depression diagnosis, family dysfunction, and trauma were common barriers. PCPs contrasted this with examples of good family support they believed would enable adolescents to attend follow-up appointments and have a “life coach” at home.
AHRQ-funded; HS022989; HS019486.
Citation: Radovic A, Reynolds K, McCauley HL .
Parents' role in adolescent depression care: primary care provider perspectives.
J Pediatr 2015 Oct;167(4):911-8. doi: 10.1016/j.jpeds.2015.05.049..
Keywords: Caregiving, Children/Adolescents, Depression, Behavioral Health, Primary Care
Blumenthal-Barby JS, Kostick KM, Delgado ED
Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: implications for informed consent and shared decision-making.
The authors investigated the decision-making process and informational and decisional needs of patients and their caregivers regarding left ventricular assist device (LVAD) placement. They found that participants easily and clearly identified their values: life extension; family; and mobility. Participants reported the need to meet other patients and caregivers before device placement and to have an involved caregiver to synthesize information. They further found that some participants demonstrated a lack of clarity regarding transplant probability.
AHRQ-funded; HS024849.
Citation: Blumenthal-Barby JS, Kostick KM, Delgado ED .
Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: implications for informed consent and shared decision-making.
J Heart Lung Transplant 2015 Sep;34(9):1182-9. doi: 10.1016/j.healun.2015.03.026.
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Keywords: Caregiving, Shared Decision Making, Heart Disease and Health, Medical Devices, Patient and Family Engagement
Wiseman JT, Fernandes-Taylor S, Barnes ML
Conceptualizing smartphone use in outpatient wound assessment: patients' and caregivers' willingness to use technology.
The researchers surveyed a vulnerable patient population to evaluate smartphone capability and willingness to adopt this technology. Their survey demonstrated that an older patient cohort with significant comorbidity is able and willing to adopt a smartphone-based postoperative monitoring program.
AHRQ-funded; HS023395.
Citation: Wiseman JT, Fernandes-Taylor S, Barnes ML .
Conceptualizing smartphone use in outpatient wound assessment: patients' and caregivers' willingness to use technology.
J Surg Res 2015 Sep;198(1):245-51. doi: 10.1016/j.jss.2015.05.011..
Keywords: Ambulatory Care and Surgery, Surgery, Telehealth, Health Information Technology (HIT), Injuries and Wounds, Adverse Events, Patient Safety, Caregiving
Crotty BH, Walker J, Dierks M
Information sharing preferences of older patients and their families.
This study identified how patients older than 75 years (hereinafter, elders) and family caregivers of such patients approach sharing of health information, with the hope of applying the results to collaborative patient portals. It found that information sharing and control are complex issues even under the most well-meaning circumstances. While elders may delegate control and share information with family, they want to retain granular control of their information.
AHRQ-funded; HS021495.
Citation: Crotty BH, Walker J, Dierks M .
Information sharing preferences of older patients and their families.
JAMA Intern Med 2015 Sep;175(9):1492-7. doi: 10.1001/jamainternmed.2015.2903..
Keywords: Caregiving, Clinician-Patient Communication, Communication, Elderly, Electronic Health Records (EHRs), Health Information Technology (HIT)
Smith B, McDuff J, Naierman N
What consumers want to know about quality when choosing a hospice provider.
This study drew on focus group and survey data collected in 5 metropolitan areas to learn more about hospice quality data. The researchers found that participants placed top priority on measures related to pain and symptom management. The National Quality Forum-approved measures resonate well with consumers, who also appear to be ready for access to data on the quality of hospice providers.
AHRQ-funded; HS021870.
Citation: Smith B, McDuff J, Naierman N .
What consumers want to know about quality when choosing a hospice provider.
Am J Hosp Palliat Care 2015 Jun;32(4):393-400. doi: 10.1177/1049909114524475.
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Keywords: Caregiving, Education: Patient and Caregiver, Shared Decision Making, Palliative Care, Provider Performance, Public Reporting, Quality of Care, Quality Indicators (QIs)
Mohd Roffeei SH, Abdullah N, Basar SK
Seeking social support on Facebook for children with autism spectrum disorders (ASDs).
This study examined the types of social support messages exchanged between parents and/or caregivers of children with Autism Spectrum Disorders (ASDs) who communicate via Facebook. It found that the highest percentage of messages offered dealt with informational support (30.7 percent) followed by emotional support (27.8 percent). Network and esteem support messages were responsible for 20.97 percent and 20.2 percent, respectively.
AHRQ-funded; HS018809.
Citation: Mohd Roffeei SH, Abdullah N, Basar SK .
Seeking social support on Facebook for children with autism spectrum disorders (ASDs).
Int J Med Inform 2015 May;84(5):375-85. doi: 10.1016/j.ijmedinf.2015.01.015..
Keywords: Social Media, Children/Adolescents, Caregiving, Telehealth, Autism
Cagle JG, Zimmerman S, Cohen LW
EMPOWER: an intervention to address barriers to pain management in hospice.
The researchers tested the preliminary efficacy of the Effective Management of Pain: Overcoming Worries to Enable Relief (EMPOWER) intervention. At two weeks, caregivers in the intervention group reported better knowledge about pain management, fewer concerns about pain and pain medications, lower patient pain over the past week, and trended toward improvement in most other areas under study. EMPOWER had a greater effect for black subjects vs. whites on reducing concern about stigma. At three months, the intervention group trended better on most study outcomes. The researchers concluded that EMPOWER is a promising model to reduce barriers to pain management in hospice.
AHRQ-funded; HS019068.
Citation: Cagle JG, Zimmerman S, Cohen LW .
EMPOWER: an intervention to address barriers to pain management in hospice.
J Pain Symptom Manage 2015 Jan;49(1):1-12. doi: 10.1016/j.jpainsymman.2014.05.007.
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Keywords: Care Management, Caregiving, Comparative Effectiveness, Education: Patient and Caregiver, Medication, Pain, Palliative Care
Prosser LA, Lamarand K, Gebremariam A
Measuring family HRQoL spillover effects using direct health utility assessment.
The researchers evaluated the loss in health-related quality of life of having a family member with a chronic illness by condition and relationship type. They found that the effects of illness extend beyond the individual patient to include effects on caregivers of patients, parents of ill children, spouses, and other close family and household members. They recommended that cost-effectiveness analyses consider the inclusion of health-related quality of life spillover effects in addition to caregiving time costs incurred by family members of ill individuals.
AHRQ-funded; HS014010.
Citation: Prosser LA, Lamarand K, Gebremariam A .
Measuring family HRQoL spillover effects using direct health utility assessment.
Med Decis Making 2015 Jan;35(1):81-93. doi: 10.1177/0272989x14541328.
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Keywords: Caregiving, Chronic Conditions, Family Health and History, Healthcare Costs, Quality of Life