National Healthcare Quality and Disparities Report
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- Adverse Events (1)
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- Antimicrobial Stewardship (1)
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- Dementia (4)
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- Education: Patient and Caregiver (7)
- Elderly (6)
- Electronic Health Records (EHRs) (5)
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- Respiratory Conditions (1)
- Screening (3)
- Sexual Health (1)
- Sickle Cell Disease (1)
- Social Determinants of Health (1)
- Social Media (2)
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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 45 Research Studies DisplayedEarnshaw VA, Bogart LM, Menino D
Disclosure, stigma, and social support among young people receiving treatment for substance use disorders and their caregivers: a qualitative analysis.
The purpose of this study was to investigate relational processes experienced by youth with substance use disorders (SUDs) and their caregivers that may act as barriers to, or facilitators of, recovery. Single-session qualitative semi-structured interviews were conducted by clinicians from a SUDs program. There was variability in disclosure experiences. Addressing relational processes within treatment by encouraging patients and caregivers to share the disclosure decision-making process may support the recovery of youth with SUDs.
AHRQ-funded; HS022986.
Citation: Earnshaw VA, Bogart LM, Menino D .
Disclosure, stigma, and social support among young people receiving treatment for substance use disorders and their caregivers: a qualitative analysis.
Int J Ment Health Addict 2019 Dec;17(6):1535-49. doi: 10.1007/s11469-018-9930-8..
Keywords: Children/Adolescents, Caregiving, Substance Abuse, Social Stigma
Riley AR, Walker BL, Wilson AC
Parents' consumer preferences for early childhood behavioral intervention in primary care.
In this study, the investigators sought to better understand parents' preferences for the content and delivery method of behavioral health guidance in pediatric primary care and to determine the relationship of those preferences with demographic characteristics, child behavior problems, and parenting style. The investigators found that most parents were interested in behavioral guidance as part of primary care, but their preferences for the content and delivery of that guidance varied by known socioeconomic, child, and parenting risk factors.
AHRQ-funded; HS022981.
Citation: Riley AR, Walker BL, Wilson AC .
Parents' consumer preferences for early childhood behavioral intervention in primary care.
J Dev Behav Pediatr 2019 Dec;40(9):669-78. doi: 10.1097/dbp.0000000000000736..
Keywords: Children/Adolescents, Primary Care, Behavioral Health, Caregiving, Healthcare Delivery
De Marchis EH, Hessler D, Fichtenberg C
Part I: A quantitative study of social risk screening acceptability in patients and caregivers.
This study evaluated patient and caregiver acceptability of social risk screening. Adult patients and the adult caregivers of pediatric patients were recruited from primary care clinics and emergency departments across nine states for a survey; survey items included the Center for Medicare and Medicaid Innovation Accountable Health Communities' social risk screening tool and questions about the appropriateness of screening and including social risk data in electronic health records. Results showed that a strong majority of surveyed patients and caregivers found social risk screening to be appropriate. Most also felt comfortable including social risk data in electronic health records. The researchers conclude that lack of patient acceptability is unlikely to be a major implementation barrier.
AHRQ-funded; HS026664.
Citation: De Marchis EH, Hessler D, Fichtenberg C .
Part I: A quantitative study of social risk screening acceptability in patients and caregivers.
Am J Prev Med 2019 Dec;57(6 Suppl 1):S25-s37. doi: 10.1016/j.amepre.2019.07.010..
Keywords: Children/Adolescents, Caregiving, Screening, Social Determinants of Health, Electronic Health Records (EHRs), Health Information Technology (HIT)
Ancker JS, Sharko M, Hong M
Should parents see their teen's medical record? Asking about the effect on adolescent-doctor communication changes attitudes.
Parents routinely access young children's medical records, but medical societies strongly recommend confidential care during adolescence, and most medical centers restrict parental records access during the teen years. In this study, the investigators sought to assess public opinion about adolescent medical privacy. The investigators concluded that although medical societies recommend confidential care for adolescents, public opinion was largely in favor of parental access.
AHRQ-funded; HS021531.
Citation: Ancker JS, Sharko M, Hong M .
Should parents see their teen's medical record? Asking about the effect on adolescent-doctor communication changes attitudes.
J Am Med Inform Assoc 2018 Dec;25(12):1593-99. doi: 10.1093/jamia/ocy120..
Keywords: Caregiving, Children/Adolescents, Clinician-Patient Communication, Communication, Electronic Health Records (EHRs), Health Information Technology (HIT), Policy
Meyer AND, Giardina TD, Khanna A
Pediatric clinician perspectives on communicating diagnostic uncertainty.
This study examined how pediatric clinicians discussed diagnostic uncertainty with their patients’ parents. A sample study was conducted at two large academic medical institutions in Texas. Twenty pediatric clinicians participated. Some clinicians felt more comfortable expressing diagnostic uncertainty to parents who were more educated. The strength of the parent-clinician relationship also changed how clinicians communicated with parents.
AHRQ-funded; HS022087; HS023602
Citation: Meyer AND, Giardina TD, Khanna A .
Pediatric clinician perspectives on communicating diagnostic uncertainty.
Int J Qual Health Care 2019 Nov 30;31(9):G107-G12. doi: 10.1093/intqhc/mzz061..
Keywords: Children/Adolescents, Caregiving, Clinician-Patient Communication, Communication
Khan A, Yin HS, Brach C
AHRQ Author: Brach C
Association between parent comfort with English and adverse events among hospitalized children.
The purpose of this study was to examine the association between parents’ limited comfort with English (LCE) and adverse events in a cohort of hospitalized children. Participants included Arabic-, Chinese-, English-, and Spanish-speaking parents of patients 17 years and younger in the pediatric units of seven North American hospitals. Findings showed that hospitalized children of parents expressing LCE were twice as likely to experience harms due to medical care. Targeted strategies are needed to improve communication and safety for this vulnerable group of children.
AHRQ-authored; AHRQ-funded; HS022986.
Citation: Khan A, Yin HS, Brach C .
Association between parent comfort with English and adverse events among hospitalized children.
JAMA Pediatr 2020 Dec;174(12):e203215. doi: 10.1001/jamapediatrics.2020.3215..
Keywords: Children/Adolescents, Caregiving, Cultural Competence, Clinician-Patient Communication, Communication, Adverse Events, Patient Safety, Inpatient Care, Hospitalization
Keller SC, Cosgrove SE, Arbaje AI
Roles and role ambiguity in patient- and caregiver-performed outpatient parenteral antimicrobial therapy.
This study examined roles and role ambiguity in patient- and caregiver-performed outpatient parenteral antimicrobial therapy (OPAT). A qualitative study of patients and caregivers was conducted using 40 semistructured telephone interviews and 20 contextual inquiries for patients and caregivers. The participants had been discharged from two academic medical centers and put on OPAT. Four main roles were identified: communicator, advocate, learner-trainer, and lay health care worker. There was ambiguity shown among health care workers as well as patients and caregivers. Clearer delineation of roles as to who performs which tasks was indicated in the study.
AHRQ-funded; HS025782.
Citation: Keller SC, Cosgrove SE, Arbaje AI .
Roles and role ambiguity in patient- and caregiver-performed outpatient parenteral antimicrobial therapy.
Jt Comm J Qual Patient Saf 2019 Nov;45(11):763-71. doi: 10.1016/j.jcjq.2019.07.003..
Keywords: Patient-Centered Healthcare, Quality Improvement, Healthcare Delivery, Patient Self-Management, Care Management, Caregiving, Quality of Care, Patient Safety
Jefferson UT, Zachary I, Majee W
Employing a user-centered design to engage mothers in the development of a mHealth breastfeeding application.
The Mother's Milk Connection mHealth application was designed to improve breastfeeding duration and access to support. This article describes a user-centered design process to engage mothers in the development of the Mother's Milk Connection application. Stakeholder and user engagement indicated the integration of four distinct features acceptable for use as a comprehensive mHealth intervention to improve access to breastfeeding support. Further, mHealth has the potential to be a useful strategy for providing breastfeeding support, and a clinical trial regarding the efficacy of the Mother's Milk Connection application is needed.
AHRQ-funded; HS022140.
Citation: Jefferson UT, Zachary I, Majee W .
Employing a user-centered design to engage mothers in the development of a mHealth breastfeeding application.
Comput Inform Nurs 2019 Oct;37(10):522-31. doi: 10.1097/cin.0000000000000549..
Keywords: Breast Feeding, Maternal Care, Pregnancy, Women, Health Information Technology (HIT), Patient and Family Engagement, Patient Adherence/Compliance, Health Promotion, Education: Patient and Caregiver, Caregiving
Choe AY, Unaka NI, Schondelmeyer AC
Inpatient communication barriers and drivers when caring for limited english proficiency children.
The authors identified barriers to and drivers of effective interpreter service use when caring for hospitalized limited English proficiency (LEP) children from the perspectives of pediatric medical providers and interpreters. Using Group Level Assessment, they found that participants identified unique barriers and drivers that impact communication with LEP patients and their families during hospitalization. They suggested that future directions include exploring the perspective of LEP families and utilizing team-based and family-centered communication strategies to standardize and improve communication practices.
AHRQ-funded; HS025138.
Citation: Choe AY, Unaka NI, Schondelmeyer AC .
Inpatient communication barriers and drivers when caring for limited english proficiency children.
J Hosp Med 2019 Oct;14(10):607-13. doi: 10.12788/jhm.3240..
Keywords: Clinician-Patient Communication, Communication, Cultural Competence, Children/Adolescents, Inpatient Care, Patient and Family Engagement, Caregiving
Garrity B, Berry Crofton, C
Parent-to-parent advice on considering spinal fusion in children with neuromuscular scoliosis.
The purpose of this study was to convey advice from families whose children recently underwent spinal fusion to families whose children are under consideration for initial spinal fusion for neuromuscular scoliosis and to providers who counsel families on this decision. Results showed that parents of children who had recently undergone spinal fusion had strong perceptions about what information to convey to families considering surgery, which may improve communication between future parents and physicians. Further investigation is needed to assess how best to incorporate the wisdom and experiences of parent peers into shared decisionmaking and preparation for spinal fusion in children with neuromuscular scoliosis.
AHRQ-funded; HS024453.
Citation: Garrity B, Berry Crofton, C .
Parent-to-parent advice on considering spinal fusion in children with neuromuscular scoliosis.
J Pediatr 2019 Oct;213:149-54. doi: 10.1016/j.jpeds.2019.05.055..
Keywords: Decision Making, Patient and Family Engagement, Caregiving, Children/Adolescents, Back Health and Pain, Surgery
Kukulka K, Washington KT, Govindarajan R
Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams.
The purpose of this study was to generate a rich description of the realities of living with amyotrophic lateral sclerosis (ALS), equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Study findings illustrated the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The investigators concluded that the complex biopsychosocial needs experienced by patients and family caregivers suggested numerous opportunities for meaningful palliative care involvement.
AHRQ-funded; HS022140.
Citation: Kukulka K, Washington KT, Govindarajan R .
Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams.
Am J Hosp Palliat Care 2019 Oct;36(10):851-57. doi: 10.1177/1049909119834493..
Keywords: Palliative Care, Patient-Centered Outcomes Research, Neurological Disorders, Patient-Centered Healthcare, Patient and Family Engagement, Caregiving
Vemulakonda VM, Hamer MK, Kempe A
Surgical decision-making in infants with suspected UPJ obstruction: stakeholder perspectives.
Although there are significant demographic and clinical variations in treatment decisions for infants with high-grade hydronephrosis concerning for ureteropelvic junction obstruction (UPJO), there has been little research on the roles of parents and surgeons in the surgical decision-making (DM) process. The purpose of this study was to understand parents' and surgeons' perceived roles in the surgical DM process for infants with high-grade hydronephrosis.
AHRQ-funded; HS024597.
Citation: Vemulakonda VM, Hamer MK, Kempe A .
Surgical decision-making in infants with suspected UPJ obstruction: stakeholder perspectives.
J Pediatr Urol 2019 Oct;15(5):469.e1-69.e9. doi: 10.1016/j.jpurol.2019.05.027..
Keywords: Newborns/Infants, Decision Making, Surgery, Kidney Disease and Health, Caregiving, Provider: Physician, Provider, Patient and Family Engagement
Sobotka SA, Lynch E, Quinn MT
Unmet respite needs of children with medical technology dependence.
Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers. The study utilizes mixed methodology with the National Survey of Children with Special Health Care Needs (NS-CSHCN) and semistructured interviews with state-wide care coordinators to understand the gap for respite care services.
AHRQ-funded; HS023007.
Citation: Sobotka SA, Lynch E, Quinn MT .
Unmet respite needs of children with medical technology dependence.
Clin Pediatr 2019 Oct;58(11-12):1175-86. doi: 10.1177/0009922819870251..
Keywords: Children/Adolescents, Medical Devices, Disabilities, Caregiving, Home Healthcare, Care Coordination
Quintana Y, Fahy D, Abdelfattah AM
The design and methodology of a usability protocol for the management of medications by families for aging older adults.
Health research apps often do not focus on usability as a design priority. This is problematic when the population of interest is disproportionately underrepresented as users of mobile apps, especially observed with aging older adults (> = 75). Challenges with the adoption of health information technology (HIT) among this group are exacerbated by poor design and user interface/experience (UI/UX) choices. This protocol described the testing and evaluation process of one HIT app for the family-based collaboration platform InfoSAGE.
AHRQ-funded; HS021495; HS24869.
Citation: Quintana Y, Fahy D, Abdelfattah AM .
The design and methodology of a usability protocol for the management of medications by families for aging older adults.
BMC Med Inform Decis Mak 2019 Sep 5;19(1):181. doi: 10.1186/s12911-019-0907-8..
Keywords: Care Management, Caregiving, Elderly, Health Information Technology (HIT), Medication
Possin KL, Merrilees JJ, Dulaney S
Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the Care Ecosystem randomized clinical trial.
Few health systems have adopted effective dementia care management programs. The Care Ecosystem is a model for delivering care from centralized hubs across broad geographic areas to caregivers and persons with dementia (PWDs) independently of their health system affiliations. The purpose of this study was to determine whether the Care Ecosystem was effective in improving outcomes important to PWDs, their caregivers, and payers beyond those achieved with usual care.
AHRQ-funded; HS022241.
Citation: Possin KL, Merrilees JJ, Dulaney S .
Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the Care Ecosystem randomized clinical trial.
JAMA Intern Med 2019 Sep 30;179(12):1658-67. doi: 10.1001/jamainternmed.2019.4101..
Keywords: Dementia, Neurological Disorders, Telehealth, Health Information Technology (HIT), Care Management, Healthcare Delivery, Caregiving, Quality of Life
Drouin O, Sharifi M, Gerber M
Parents' willingness to pay for pediatric weight management programs.
This study examined parents’ interested in continuing and willingness to pay (WTP) for 2 pediatric weight management programs after their childrens’ participation. Participants were parents of 2- to 12-year-old children with a body mass index equal to or greater than the 85th percentile who participated in the Connect for Health trial. One group received enhanced primary care (EPC) and the other group EPC plus individualized coaching (EPC+C). After 1 year, they assessed parents’ self-reported WTP for a similar program and the maximum amount they would pay. Of 638 parents polled, 85% were interested in continuing and 38% of them were willing to pay. The median amount they were willing to pay was $25/month. Parents of Hispanic/Latino children versus white ethnicity and those reporting a higher satisfaction with the program more most likely to endorse WTP. Parents of children getting EPC+C were also more willing to pay.
AHRQ-funded; HS024332; HS022986.
Citation: Drouin O, Sharifi M, Gerber M .
Parents' willingness to pay for pediatric weight management programs.
Acad Pediatr 2019 Sep - Oct;19(7):764-72. doi: 10.1016/j.acap.2019.05.124..
Keywords: Children/Adolescents, Obesity: Weight Management, Obesity, Healthcare Costs, Caregiving, Primary Care, Primary Care: Models of Care
Knox CA, Hampp C, Palmsten K
Validation of mother-infant linkage using Medicaid Case ID variable within the Medicaid Analytic eXtract (MAX) database.
The authors established and validated an algorithm within the Medicaid Analytic eXtract (MAX) that links mothers to infants and to identify factors influencing successful mother-infant linkage. They found that their algorithm can correctly link liveborn infants to their mothers, with linkage performance being associated with certain characteristics that may affect representativeness of successfully linked pairs.
AHRQ-funded; HS022384.
Citation: Knox CA, Hampp C, Palmsten K .
Validation of mother-infant linkage using Medicaid Case ID variable within the Medicaid Analytic eXtract (MAX) database.
Pharmacoepidemiol Drug Saf 2019 Sep;28(9):1222-30. doi: 10.1002/pds.4843..
Keywords: Caregiving, Medicaid, Newborns/Infants, Patient Safety, Pregnancy
Iyer AS, Dionne-Odom JN, Ford SM
A formative evaluation of patient and family caregiver perspectives on early palliative care in chronic obstructive pulmonary disease across disease severity.
Investigators sought to identify patient and family caregiver early palliative care needs across stages of chronic obstructive pulmonary disease (COPD) severity. They conducted their study as part of the Medical Research Council Framework developmental phase for intervention development. Their results showed that patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.
AHRQ-funded; HS023009.
Citation: Iyer AS, Dionne-Odom JN, Ford SM .
A formative evaluation of patient and family caregiver perspectives on early palliative care in chronic obstructive pulmonary disease across disease severity.
Ann Am Thorac Soc 2019 Aug;16(8):1024-33. doi: 10.1513/AnnalsATS.201902-112OC..
Keywords: Caregiving, Palliative Care, Respiratory Conditions
Cullen D, Woodford A, Fein J
Food for thought: a randomized trial of food insecurity screening in the emergency department.
Despite the growing interest in screening for food insecurity in the clinical setting, little evidence exists regarding screening formats that maximize disclosure and caregiver comfort. In this randomized trial, investigators asked English-speaking adult caregivers of pediatric patients in the emergency department at an urban, freestanding children's hospital to complete a validated, 2-question screen for food insecurity. Although both verbal interview and tablet-based screening modalities were effective in identifying food insecurity, tablet-based screening had a higher disclosure rate and was the participants' preferred screening method.
AHRQ-funded; HS026116.
Citation: Cullen D, Woodford A, Fein J .
Food for thought: a randomized trial of food insecurity screening in the emergency department.
Acad Pediatr 2019 Aug;19(6):646-51. doi: 10.1016/j.acap.2018.11.014..
Keywords: Children/Adolescents, Emergency Department, Nutrition, Screening, Urban Health, Caregiving
Beck J, Wignall J, Jacob-Files E
Parent attitudes and preferences for discussing health care costs in the inpatient setting.
This study examined parent attitudes towards discussing their child’s health care costs in an inpatient setting with health care providers and others. Semistructured interviews were conducted with 42 parents of children who received care at a tertiary academic children’s hospital with and without chronic disease. Two domains for discussion were identified: factors that influence the parent’s desire to discuss health care costs in the inpatient setting and parent preference regarding the execution of cost discussions. Most parents highlighted concerns regarding physician involvement and felt that it was better explored with a financial counselor or social worker. They also felt that the discussions should be optional.
AHRQ-funded; HS024299.
Citation: Beck J, Wignall J, Jacob-Files E .
Parent attitudes and preferences for discussing health care costs in the inpatient setting.
Pediatrics 2019 Aug;144(2). doi: 10.1542/peds.2018-4029..
Keywords: Caregiving, Children/Adolescents, Healthcare Costs, Inpatient Care, Hospitalization, Hospitals
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.
AHRQ-funded; HS021879.
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 and Ethnic Minorities
Statile AM, White CM, Sucharew HJ
Comparison of parent report with administrative data to identify pediatric reutilization following hospital discharge.
Healthcare providers rely on historical data reported by parents to make medical decisions. The Hospital to Home Outcomes (H2O) trial assessed the effects of a onetime home nurse visit following pediatric hospitalization for common conditions. In this study, the investigators sought to compare parent recall of reutilization events two weeks after discharge with administrative records.
AHRQ-funded; HS024735.
Citation: Statile AM, White CM, Sucharew HJ .
Comparison of parent report with administrative data to identify pediatric reutilization following hospital discharge.
J Hosp Med 2019 Jul;14(7):411-14. doi: 10.12788/jhm.3200..
Keywords: Children/Adolescents, Caregiving, Hospital Discharge, Hospital Readmissions, Hospitals
Chase JD, Russell D, Rice M
Caregivers' perceptions managing functional needs among older adults receiving post-acute home health care.
The researchers conducted telephone interviews to explore caregivers’ experiences managing physical functioning (PF) needs of older adults in the post-acute home health care setting. Caregivers depicted the enormity of caregiving tasks needed to manage older patients' PF needs and described their perceived roles and challenges in managing PF deficits, including a sense of isolation when they were the sole caregiver. The researchers conclude that their findings can guide nursing efforts to target caregiver training and support during the critical care transition period.
AHRQ-funded; HS022140.
Citation: Chase JD, Russell D, Rice M .
Caregivers' perceptions managing functional needs among older adults receiving post-acute home health care.
Res Gerontol Nurs 2019 Jul 1;12(4):174-83. doi: 10.3928/19404921-20190319-01..
Keywords: Caregiving, Elderly, Home Healthcare, Transitions of Care
Ranganathan K, Kochkodan JM, Baker MK
Variation in the desire for cleft revision surgery among children, caregivers, and surgeons.
This study examined the differences in perception between children, caregivers, and their surgeons for the need for cleft revision surgery. A sample of 100 children with cleft lip and/or cleft palate and their caregivers (n=100) were surveyed on satisfaction with appearance using the Cleft Evaluation Profile. Ten surgeons and ten control observers then rated photographs of these children using questions analogous to the Profile. The children generally reported greater satisfaction in appearance across all domains compared with surgeons. Children and caregivers had similar degrees of satisfaction in appearance of the lip and maxilla. The authors concluded that more care must be given to children’s perception before moving forward with further revision surgery.
AHRQ-funded; HS023313.
Citation: Ranganathan K, Kochkodan JM, Baker MK .
Variation in the desire for cleft revision surgery among children, caregivers, and surgeons.
Plast Reconstr Surg 2019 Jul;144(1):171-78. doi: 10.1097/prs.0000000000005722..
Keywords: Caregiving, Children/Adolescents, Surgery, Provider, Provider: Physician
Burgdorf J, Roth DL, Riffin C
Factors associated with receipt of training among caregivers of older adults.
Emerging evidence suggests that support of family caregivers, including education and training, can improve health outcomes for caregivers and care recipients. In this paper, the authors examine whether caregiver characteristics are associated with receipt of training. The investigators found that 93% of older adults’ family caregivers did not report receiving role-related training.
AHRQ-funded; HS000029.
Citation: Burgdorf J, Roth DL, Riffin C .
Factors associated with receipt of training among caregivers of older adults.
JAMA Intern Med 2019 Jun;179(6):833-35. doi: 10.1001/jamainternmed.2018.8694.
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Keywords: Caregiving, Training, Education: Patient and Caregiver, Home Healthcare, Quality of Life, Elderly