National Healthcare Quality and Disparities Report
Latest available findings on quality of and access to health care
Data
- Data Infographics
- Data Visualizations
- Data Tools
- Data Innovations
- All-Payer Claims Database
- Healthcare Cost and Utilization Project (HCUP)
- Medical Expenditure Panel Survey (MEPS)
- AHRQ Quality Indicator Tools for Data Analytics
- State Snapshots
- United States Health Information Knowledgebase (USHIK)
- Data Sources Available from AHRQ
Search All Research Studies
AHRQ Research Studies Date
Topics
- Behavioral Health (1)
- Cancer (6)
- Cardiovascular Conditions (2)
- Care Coordination (1)
- (-) Caregiving (29)
- Children/Adolescents (11)
- Chronic Conditions (3)
- Clinician-Patient Communication (3)
- Communication (4)
- Cultural Competence (1)
- Decision Making (3)
- Dementia (4)
- Diabetes (1)
- Education: Patient and Caregiver (2)
- Elderly (8)
- Emergency Department (1)
- Emergency Medical Services (EMS) (1)
- Family Health and History (1)
- Healthcare Utilization (2)
- Health Information Technology (HIT) (4)
- Health Literacy (1)
- Heart Disease and Health (1)
- Home Healthcare (4)
- Hospitalization (2)
- Influenza (1)
- Inpatient Care (1)
- Intensive Care Unit (ICU) (1)
- Long-Term Care (2)
- Medical Expenditure Panel Survey (MEPS) (1)
- Medicare (2)
- Medication (1)
- Neonatal Intensive Care Unit (NICU) (1)
- Neurological Disorders (2)
- Newborns/Infants (1)
- Outcomes (1)
- Palliative Care (2)
- Patient-Centered Outcomes Research (1)
- Patient Adherence/Compliance (1)
- Patient and Family Engagement (2)
- Patient Experience (3)
- Patient Safety (1)
- Primary Care (2)
- Provider (1)
- Provider: Physician (2)
- Quality Improvement (1)
- Quality of Care (2)
- Quality of Life (1)
- Racial and Ethnic Minorities (2)
- Respiratory Conditions (1)
- Sleep Problems (1)
- Stress (2)
- Stroke (1)
- Surgery (2)
- Telehealth (2)
- Training (2)
- Transitions of Care (2)
- Treatments (1)
- Vaccination (1)
- Young Adults (1)
AHRQ Research Studies
Sign up: AHRQ Research Studies Email updates
Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 25 of 29 Research Studies DisplayedEjem 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.
AHRQ-funded; HS013852.
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 and Ethnic Minorities, Communication, Heart Disease and Health, Cardiovascular Conditions, Caregiving
Greenzang KA, Kelly CA, Al-Sayegh H
Thinking ahead: parents' worries about late effects of childhood cancer treatment.
This study examined parental perceived likelihood, impact, and worry about late effects of treatment for childhood cancer. The authors surveyed 96 parents of pediatric cancer patients at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center within a year of diagnosis. Most parents (96%) valued information about late effects, and 93% considered late effects in their treatment decision-making. However, 24% could not recall receiving information about late effects, and only 51% felt well-prepared for potential late effects. Only one-fifth of parents consider late effects to be likely for their child, while 61% were extremely/very worried about late effects.
AHRQ-funded; HS022986.
Citation: Greenzang KA, Kelly CA, Al-Sayegh H .
Thinking ahead: parents' worries about late effects of childhood cancer treatment.
Pediatr Blood Cancer 2021 Dec;68(12):e29335. doi: 10.1002/pbc.29335..
Keywords: Children/Adolescents, Cancer, Education: Patient and Caregiver, Health Literacy, Caregiving
Rogers H, Madathil KC, Joseph A
An exploratory study investigating the barriers, facilitators, and demands affecting caregivers in a telemedicine integrated ambulance-based setting for stroke care.
This study investigates the impact of telemedicine on workload, teamwork, workflow, and communication of geographically distributed caregivers delivering stroke care in ambulance-based telemedicine. Simulated stroke sessions were conducted with selected caregivers, then followed with a survey and interviews. Findings showed that barriers included frustration with equipment, the loss of personal connection of the neurologists with the patients, and physical constraints in the ambulance. Facilitators included live visual communication increasing teamwork and efficiency, the ease of access to neurologist, increased flexibility, and high overall satisfaction and usability.
AHRQ-funded; HS026809.
Citation: Rogers H, Madathil KC, Joseph A .
An exploratory study investigating the barriers, facilitators, and demands affecting caregivers in a telemedicine integrated ambulance-based setting for stroke care.
Appl Ergon 2021 Nov;97:103537. doi: 10.1016/j.apergo.2021.103537..
Keywords: Telehealth, Health Information Technology (HIT), Caregiving, Stroke, Cardiovascular Conditions, Emergency Medical Services (EMS)
Armstrong MJ, Gamez N, Alliance S
Clinical care and unmet needs of individuals with dementia with Lewy bodies and caregivers: an interview study.
Investigators researched the clinical care preferences of individuals living with dementia and caregivers, particularly dementia with Lewy bodies (DLB). Twenty individuals with DLB and 25 caregivers were interviewed via a semistructured questionnaire. The investigators concluded that improving care for individuals with DLB and their families will require a multipronged strategy including education for non-specialist care providers, increasing specialty care access, improved clinical care services, research to support disease prognosis and treatment decisions, and local and national strategies for enhanced caregiver support.
Citation: Armstrong MJ, Gamez N, Alliance S .
Clinical care and unmet needs of individuals with dementia with Lewy bodies and caregivers: an interview study.
Alzheimer Dis Assoc Disord 2021 Oct-Dec;35(4):327-34. doi: 10.1097/wad.0000000000000459..
Keywords: Dementia, Caregiving, Chronic Conditions, Neurological Disorders, Patient Experience
Hofstetter AM, Opel DJ, Stockwell MS
Influenza-related knowledge, beliefs, and experiences among caregivers of hospitalized children.
Caregivers frequently decline influenza vaccine for their hospitalized child. In this study, the investigators aimed to examine factors impacting their influenza vaccine decision-making. The investigators conducted a cross-sectional survey study of English- and Spanish-speaking caregivers of children hospitalized at a tertiary care pediatric hospital between November 2017 and April 2018.They identified key factors impacting influenza vaccine decision-making among caregivers of hospitalized children, a critical step to improving uptake in this population.
AHRQ-funded; HS025470.
Citation: Hofstetter AM, Opel DJ, Stockwell MS .
Influenza-related knowledge, beliefs, and experiences among caregivers of hospitalized children.
Hosp Pediatr 2021 Aug;11(8):815-32. doi: 10.1542/hpeds.2020-003459..
Keywords: Children/Adolescents, Caregiving, Influenza, Vaccination
Borsky AE, Zuvekas SH, Kent EE
AHRQ Author: Borsky AE, Zuvekas SH
Understanding the characteristics of US cancer survivors with informal caregivers.
This AHRQ-authored paper’s purpose is to provide a national representative description of the sociodemographic characteristics of cancer survivors who have or had an informal caregiver. Cross-sectional data from the MEPS Experiences With Cancer Survivorship Supplement survey in 2011, 2016, and 2017 was used. The study population consisted of 720 US adult survivors of cancer other than nonmelanoma skin cancer who were treated for cancer less than 3 years before the survey and were living in the community. A total of 55.2% of cancer survivors reported having an informal caregiving during or after their cancer treatment. Males were more likely to have a spouse as their caregiver and females were more likely to have a child. Cancer survivors who were female, were married, were of a non-White race/ethnicity, or were in poor health were more likely to have an informal caregiver.
AHRQ-authored.
Citation: Borsky AE, Zuvekas SH, Kent EE .
Understanding the characteristics of US cancer survivors with informal caregivers.
Cancer 2021 Aug 1;127(15):2752-61. doi: 10.1002/cncr.33535..
Keywords: Medical Expenditure Panel Survey (MEPS), Cancer, 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.
AHRQ-funded; HS000063.
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 and Ethnic Minorities, Cultural Competence
Russell D, Burgdorf JG, Kramer C
Family caregivers' conceptions of trust in home health care providers.
Trust is important to family caregivers of older adults receiving home health care (HHC). Caregivers rely extensively on nurses, home health aides, and other providers to manage complex care tasks. The current study examined how family caregivers conceived of trust in HHC providers. The investigators found that caregivers' conceptions of trust in providers were affected by interpersonal aspects of their interactions with providers as well as the broader systems of care within which they participate.
AHRQ-funded; HS022140.
Citation: Russell D, Burgdorf JG, Kramer C .
Family caregivers' conceptions of trust in home health care providers.
Res Gerontol Nurs 2021 Jul-Aug;14(4):200-10. doi: 10.3928/19404921-20210526-01..
Keywords: Elderly, Home Healthcare, Caregiving
Richardson DR, Oakes AH, Crossnohere NL
Prioritizing the worries of AML patients: Quantifying patient experience using best-worst scaling.
Although patients with acute myeloid leukemia (AML) experience significant toxicities and poor outcomes, few studies have quantified patients' experience. In this study, a community-centered approach was used to develop an AML-specific best-worst scaling (BWS) instrument involving 13 items in four domains (psychological, physical, decision-making, treatment delivery) to quantify patient worry. A survey of patients and caregivers was conducted using the instrument. Data were analyzed using conditional logistic regression.
AHRQ-funded; HS000032.
Citation: Richardson DR, Oakes AH, Crossnohere NL .
Prioritizing the worries of AML patients: Quantifying patient experience using best-worst scaling.
Psychooncology 2021 Jul;30(7):1104-11. doi: 10.1002/pon.5652..
Keywords: Cancer, Patient Experience, Caregiving, Outcomes, Patient-Centered Outcomes Research
Burgdorf JG, Arbaje AI, Stuart EA
Unmet family caregiver training needs associated with acute care utilization during home health care.
This study estimated the proportion of family caregivers assisting Medicare home health patients who have unmet training needs and its’ potential impact on older adults’ risk of acute care utilization. Linked data from the National Health and Aging Trends Study, Outcome and Assessment Information Set (OASIS), Medicare Provider of Services file, and Medicare claims data from 2011 to 2016 were used. Rates of unmet training needs varied from 8.2% of family caregivers assisting with household chores and 16% assisting with self-care tasks. After controlling for older adult and home health provider characteristics, older adults with family caregivers who had unmet training needs were twice as likely to incur acute care utilization during their home health episode.
AHRQ-funded; HS0000029.
Citation: Burgdorf JG, Arbaje AI, Stuart EA .
Unmet family caregiver training needs associated with acute care utilization during home health care.
J Am Geriatr Soc 2021 Jul;69(7):1887-95. doi: 10.1111/jgs.17138..
Keywords: Caregiving, Home Healthcare, Elderly, Healthcare Utilization, Training
Riley AR, Williams CN, Moyer D
Parental posttraumatic stress symptoms in the context of pediatric post intensive care syndrome: impact on the family and opportunities for intervention.
Pediatric intensive care unit (PICU) survivors and their families experience ongoing impacts on physical, cognitive, and psychosocial functioning, described as Post-Intensive Care Syndrome (PICS). The objective of this study was to determine whether the posttraumatic stress symptoms (PTSS) of parents predict the impact of critical illness on families following PICU admission beyond other factors (e.g., sex, race/ethnicity, age, insurance status, illness severity, family involvement or death).
AHRQ-funded; HS022981.
Citation: Riley AR, Williams CN, Moyer D .
Parental posttraumatic stress symptoms in the context of pediatric post intensive care syndrome: impact on the family and opportunities for intervention.
Clin Pract Pediatr Psychol 2021 Jun;9(2):156-66. doi: 10.1037/cpp0000399..
Keywords: Children/Adolescents, Caregiving, Intensive Care Unit (ICU), Family Health and History, Stress
Links AR, Callon W, Wasserman C
Treatment recommendations to parents during pediatric tonsillectomy consultations: a mixed methods analysis of surgeon language.
A deeper understanding of the dialogue clinicians use to relay treatment recommendations is needed to fully understand their influence on patient decisions about surgery. In this study, the authors characterize how otolaryngologists provide treatment recommendations and suggest a classification framework. The investigators concluded that clinicians provide treatment recommendations in a variety of ways that may introduce more or less certainty and choice to parental treatment decisions.
AHRQ-funded; HS022932.
Citation: Links AR, Callon W, Wasserman C .
Treatment recommendations to parents during pediatric tonsillectomy consultations: a mixed methods analysis of surgeon language.
Patient Educ Couns 2021 Jun;104(6):1371-79. doi: 10.1016/j.pec.2020.11.015..
Keywords: Children/Adolescents, Surgery, Caregiving, Decision Making, Clinician-Patient Communication, Communication, Provider: Physician, Provider
Zellmer BM, Nacht CL, Coller RJ
BedsideNotes: sharing physicians' notes with parents during hospitalization.
Physicians increasingly share ambulatory visit notes with patients to meet new federal requirements, and evidence suggests patient experiences improve without overburdening physicians. Whether sharing inpatient notes with parents of hospitalized children yields similar outcomes is unknown. In this pilot study, the investigators evaluated parent and physician perceptions of sharing notes with parents during hospitalization. The investigators concluded that parents all valued having access to physicians' notes during their child's hospital stay; however, some physicians remained concerned about the potential negative consequences of sharing.
AHRQ-funded; HS027214.
Citation: Zellmer BM, Nacht CL, Coller RJ .
BedsideNotes: sharing physicians' notes with parents during hospitalization.
Hosp Pediatr 2021 May;11(5):503-08. doi: 10.1542/hpeds.2020-005447..
Keywords: Children/Adolescents, Clinician-Patient Communication, Communication, Caregiving, Hospitalization
Wang J, Ying M, Temkin-Greener H
Care-partner support and hospitalization in assisted living during transitional home health care.
This study examined the impact of care-partner support on outcomes among assisted living (AL) residents. Variation in care-partner and its impact on hospitalizations among AL residents receiving Medicare home health (HH) services was investigated. Analysis of national data from various databases was used and a total of 741,926 participants were identified with Medicare HH admissions in 2017. Care-partner support during the HH admission was measured in seven domains: activity of daily living (ADLs), instrumental activities of ADLs), medication administration, treatment, medical equipment, home safety, and transportation. Care-partner support was categorized as assistance not needed, care-partner currently providing assistance, care-partner needs additional training/support to provide assistance, and care-partner is unavailable/unlikely to provide assistance. Among the cohort, inadequate care-partner support was identified for all seven domains ranging from 13.1% for transportation to 49.8% for treatment and was unavailable for 0.9% for transportation to 11.0% for treatment. Having inadequate or unavailable care-partner support was related to increased risk of hospitalization by 8.9% for treatment to 41.3% for medication administration.
AHRQ-funded; HS026893.
Citation: Wang J, Ying M, Temkin-Greener H .
Care-partner support and hospitalization in assisted living during transitional home health care.
J Am Geriatr Soc 2021 May;69(5):1231-39. doi: 10.1111/jgs.17005..
Keywords: Elderly, Transitions of Care, Caregiving, Hospitalization, Home Healthcare, Long-Term Care
Okado I, Pagano I, Cassel K
Perceptions of care coordination in cancer patient-family caregiver dyads.
The authors examined cancer patients and their family caregivers' perspectives of care coordination (CC) using a dyadic research design. They found that a subgroup of family caregivers reported poorer perception of CC than patients, suggesting that those family caregivers and providers may benefit from intervention. They concluded that further understanding of patient-family caregiver dyads' perspectives of CC can inform development of strategies to integrate family caregivers into the cancer care team, develop effective CC interventions for family caregivers, and contribute to improved quality and value of cancer care.
AHRQ-funded; HS027286.
Citation: Okado I, Pagano I, Cassel K .
Perceptions of care coordination in cancer patient-family caregiver dyads.
Support Care Cancer 2021 May;29(5):2645-52. doi: 10.1007/s00520-020-05764-8..
Keywords: Cancer, Caregiving, Care Coordination, Quality of Care
Acharya C, Sehrawat TS, McGuire DB
Perspectives of inpatients with cirrhosis and caregivers on using health information technology: cross-sectional multicenter study.
Perspectives of inpatients with cirrhosis and caregivers on using health information technology: cross-sectional multicenter study.
J Med Internet Res 2021 Apr 9;23(4):e24639. doi: 10.2196/24639.
This cross-sectional multicenter study examined reasons why health IT interventions were refused among patient-caregiver dyads of inpatients with cirrhosis. A total of 349 patient-caregiver dyads at three Virginia hospitals were approached of which 87 (25%) agreed to participate. Patients with cirrhosis admitted with gastrointestinal bleeding without opioid use or hepatic encephalopathy were more likely to participate than those with opioid or alcohol-related etiologies. Privacy was not a major factor in refusal, but caregiver and study burden were.
J Med Internet Res 2021 Apr 9;23(4):e24639. doi: 10.2196/24639.
This cross-sectional multicenter study examined reasons why health IT interventions were refused among patient-caregiver dyads of inpatients with cirrhosis. A total of 349 patient-caregiver dyads at three Virginia hospitals were approached of which 87 (25%) agreed to participate. Patients with cirrhosis admitted with gastrointestinal bleeding without opioid use or hepatic encephalopathy were more likely to participate than those with opioid or alcohol-related etiologies. Privacy was not a major factor in refusal, but caregiver and study burden were.
AHRQ-funded; HS025412.
Citation: Acharya C, Sehrawat TS, McGuire DB .
Perspectives of inpatients with cirrhosis and caregivers on using health information technology: cross-sectional multicenter study.
J Med Internet Res 2021 Apr 9;23(4):e24639. doi: 10.2196/24639..
Keywords: Health Information Technology (HIT), Caregiving, Inpatient Care
Breitenstein SM, Fehrenbacher C, Holod AF
A randomized trial of digitally delivered, self-administered parent training in primary care: effects on parenting and child behavior.
Researchers sought to evaluate the effects of a self-administered, digital behavioral parent training program (ezParent) on parent and child behavior for parents of young children. Their results suggested that ezParent as a self-administered behavioral parent training program may not be intense enough for child and parent behavioral change as a universal prevention model. Parents may require different levels of support for completion based on their level of service seeking, family characteristics, risk profile, and motivation for change.
AHRQ-funded; HS024273.
Citation: Breitenstein SM, Fehrenbacher C, Holod AF .
A randomized trial of digitally delivered, self-administered parent training in primary care: effects on parenting and child behavior.
J Pediatr 2021 Apr;231:207-14.e4. doi: 10.1016/j.jpeds.2020.12.016..
Keywords: Children/Adolescents, Caregiving, Primary Care, Education: Patient and Caregiver
Burgdorf JG, Stuart EA, Arbaje AI
Family caregiver training needs and Medicare home health visit utilization.
This study looked at family caregiver training needs and Medicare home health visit utilization. Medicare home health providers are now required to give family caregiver training, but service intensity is not known. This observational study linked National Health and Aging Trends Study (NHATS), Outcomes and Assessment Information (OASIS), and Medicare claims data to evaluate the relationship between caregivers’ training needs and number/type of home health visits. A total of 1217 NHATS participants receiving Medicare-funded home health between 2011 and 2016 were included. Nurse visits were more likely when family caregivers had medication management or household chore training needs. Therapy visits were more likely when caregivers had self-care training needs. Aide visits were more likely when caregivers had household chore or self-care training needs. Medication management training needs resulted in an additional 1.06 nursing visits, and household chore training an additional 3.24 total and a subset of 1.32 aide visits.
AHRQ-funded; HS000029.
Citation: Burgdorf JG, Stuart EA, Arbaje AI .
Family caregiver training needs and Medicare home health visit utilization.
Med Care 2021 Apr;59(4):341-47. doi: 10.1097/mlr.0000000000001487..
Keywords: Caregiving, Elderly, Home Healthcare, Medicare, Training, Healthcare Utilization
Jones LD, Grout RW, Gilbert AL
How can healthcare professionals provide guidance and support to parents of adolescents? Results from a primary care-based study.
This study explored the rewards and difficulties of raising an adolescent and investigated parents' level of interest in receiving guidance from healthcare providers on parenting and adolescent health topics. Parents of adolescents who attended an outpatient pediatric clinic with their children were interviewed and completed a short survey via by telephone. Findings showed that parents identified several rewarding and difficult aspects associated with raising an adolescent and were open to receiving guidance on a range of parenting topics in a variety of formats through primary care settings. Recommendations for healthcare providers included considering how best to provide parenting support during this important developmental time period.
AHRQ-funded; HS022681.
Citation: Jones LD, Grout RW, Gilbert AL .
How can healthcare professionals provide guidance and support to parents of adolescents? Results from a primary care-based study.
BMC Health Serv Res 2021 Mar 20;21(1):253. doi: 10.1186/s12913-021-06200-1..
Keywords: Children/Adolescents, Primary Care, Caregiving
Leu GR, Links AR, Ryan MA
Assessment of parental choice predisposition for tonsillectomy in children.
The decision to proceed with tonsillectomy to treat pediatric obstructive sleep-disordered breathing (OSDB) often falls on individual families. Despite emphasis on shared decision-making between parents and surgeons about tonsillectomy for OSDB, the extent to which parents have already decided about surgery prior to the child's consultation is not known. The objective of this study was to identify predictors of parent choice predisposition for surgical treatment of OSDB with tonsillectomy and describe its association with parent-clinician communication.
AHRQ-funded; HS022932.
Citation: Leu GR, Links AR, Ryan MA .
Assessment of parental choice predisposition for tonsillectomy in children.
JAMA Otolaryngol Head Neck Surg 2021 Mar;147(3):263-70. doi: 10.1001/jamaoto.2020.5031..
Keywords: Children/Adolescents, Caregiving, Decision Making, Surgery, Sleep Problems, Respiratory Conditions
Heneghan MB, Hussain T, Barrera L
Access to technology and preferences for an mHealth intervention to promote medication adherence in pediatric acute lymphoblastic leukemia: approach leveraging behavior change techniques.
This study’s objectives were to examine access to mobile technology and preferences for an mHealth intervention to improve medication adherence in pediatric acute lymphoblastic leukemia (ALL). Parents of children with ALL as well as adolescents and young adults (AYAs) with ALL who received maintenance chemotherapy were given a cross-sectional survey. Findings showed that parents, adolescents, and AYAs reported ubiquitous access to mobile technology and strong interest in multiple adherence-specific mHealth app features. Parents and AYAs provided valuable insight into preferred features for a multifunctional behavioral intervention to promote medication adherence in pediatric ALL.
AHRQ-funded; HS023011.
Citation: Heneghan MB, Hussain T, Barrera L .
Access to technology and preferences for an mHealth intervention to promote medication adherence in pediatric acute lymphoblastic leukemia: approach leveraging behavior change techniques.
J Med Internet Res 2021 Feb 18;23(2):e24893. doi: 10.2196/24893..
Keywords: Children/Adolescents, Young Adults, Caregiving, Cancer, Medication, Patient Adherence/Compliance, Health Information Technology (HIT), Treatments
Zmora R, Zmora LL, Bustamante G
Dementia caregivers' experiences and reactions to remote activity monitoring system alerts.
Technology-based tools, including remote activity monitoring (RAM) systems, have been proposed as valuable aids for family caregivers of people with dementia. Previous analyses have shown limited effects of these systems and highlighted a number of barriers, including false alarms. In this study, the investigators used data from an ongoing embedded mixed method randomized controlled intervention to describe patterns of alerts and their association with receipt of the RAM system and caregiver outcomes.
AHRQ-funded; HS022836.
Citation: Zmora R, Zmora LL, Bustamante G .
Dementia caregivers' experiences and reactions to remote activity monitoring system alerts.
J Gerontol Nurs 2021 Jan;47(1):13-20. doi: 10.3928/00989134-20201208-03.
.
.
Keywords: Elderly, Dementia, Neurological Disorders, Caregiving, Telehealth
Aronson PL, Politi MC, Schaeffer P
Development of an app to facilitate communication and shared decision-making with parents of febrile infants ≤ 60 days old.
This study’s aim was to develop and test a tool to engage parents of febrile infants 60 days or less of age evaluated in the emergency department (ED). The tool was designed to improve communication between parents and healthcare providers and to support shared decision-making (SDM) about whether to perform a lumbar puncture (LP) for infants 29 to 60 days of age. The authors conducted a multi-phase development and testing process including individual, semi-structured interviews with parents and clinicians; design of a “storyboard” of the tool with design impression testing; development of a software application prototype called e-Care; and usability testing of e-Care using qualitative assessment and the System Usability Scale (SUS). The authors interviewed 27 parents and 23 clinicians. After the interviews, they developed separate versions of e-Care for infants aged 28 days or less and 29 to 60 days of age in both English and Spanish. e-Care is divided into 4 sections: 1) homepage; 2) why testing is done; 3) what tests are done; and 4) what happens after testing. The mean SUS score given by parents and clinicians was 90.3 representing “excellent” usability.
AHRQ-funded; HS026006.
Citation: Aronson PL, Politi MC, Schaeffer P .
Development of an app to facilitate communication and shared decision-making with parents of febrile infants ≤ 60 days old.
Acad Emerg Med 2021 Jan;28(1):46-59. doi: 10.1111/acem.14082..
Keywords: Clinician-Patient Communication, Communication, Newborns/Infants, Caregiving, Decision Making, Patient and Family Engagement, Emergency Department, Health Information Technology (HIT)
Quigley DD, McCleskey SG
Improving care experiences for patients and caregivers at end of life: a systematic review.
End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. In this study, the researchers reviewed literature on improving patient and/or caregiver end-of-life care experiences.
AHRQ-funded; HS025920.
Citation: Quigley DD, McCleskey SG .
Improving care experiences for patients and caregivers at end of life: a systematic review.
Am J Hosp Palliat Care 2021 Jan;38(1):84-93. doi: 10.1177/1049909120931468..
Keywords: Palliative Care, Caregiving, Patient Experience, Quality Improvement, Quality of Care
Zmora R, Statz TL, Birkeland RW
Transitioning to long-term care: family caregiver experiences of dementia, communities, and counseling.
Previous analyses of interventions targeting relationships between family caregivers of people with Alzheimer's disease and related dementias and residential long-term care (RLTC) staff showed modest associations with caregiver outcomes. This analysis aimed to better understand interpersonal and contextual factors that influence caregiver-staff relationships and identify targets for future interventions to improve these relationships.
AHRQ-funded; HS022836.
Citation: Zmora R, Statz TL, Birkeland RW .
Transitioning to long-term care: family caregiver experiences of dementia, communities, and counseling.
J Aging Health 2021 Jan;33(1-2):133-46. doi: 10.1177/0898264320963588..
Keywords: Elderly, Caregiving, Dementia, Transitions of Care, Long-Term Care, Chronic Conditions