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Research Studies is a monthly compilation of research articles funded by AHRQ or authored by AHRQ researchers and recently published in journals or newsletters.
Results1 to 7 of 7 Research Studies Displayed
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.
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
Armstrong MJ, Rastgardani T, Gagliardi AR
Barriers and facilitators of communication about off periods in Parkinson's disease: qualitative analysis of patient, carepartner, and physician Interviews.
This article discusses barriers and facilitators of communication with Parkinson’s disease patients, care partners, and their physicians specifically during off periods. Twenty persons with Parkinson’s and their care partners, and 20 physicians participated in interviews using a semi-structured questionnaire. Communication barrier levels were identified as patient-level, caregiver-level, and physician-level. For patients cognitive impairment and reluctance to discuss symptoms was the largest barrier. Caregiver absence was also a barrier. For physicians barriers were distraction by technology and lack of appreciation of off period burdens. Various tools such as home diaries, questionnaires and mobile phone videos can be used to aid communication regarding off periods. Patients and their caregivers stressed the need for more formal educational materials and improved educational tools.
Citation: Armstrong MJ, Rastgardani T, Gagliardi AR . Barriers and facilitators of communication about off periods in Parkinson's disease: qualitative analysis of patient, carepartner, and physician Interviews. PLoS One 2019 Apr 18;14(4):e0215384. doi: 10.1371/journal.pone.0215384..
Keywords: Communication, Clinician-Patient Communication, Neurological Disorders, Caregiving, Education: Patient and Caregiver, Health Literacy, Patient and Family Engagement
Egan M, Yin HS, Greenhawt M
Low caregiver health literacy among pediatric food-allergic patients is associated with poorer food allergy management knowledge.
In this paper, the authors discuss how lower health literacy in caregivers of children with food allergies is associated with deficiencies in demonstrating correct use of an epinephrine autoinjector, increased reactions to foods in the past 12 months, and knowledge gaps on treatment of allergic reactions.
Citation: Egan M, Yin HS, Greenhawt M . Low caregiver health literacy among pediatric food-allergic patients is associated with poorer food allergy management knowledge. J Allergy Clin Immunol Pract 2019 Feb;7(2):655-58. doi: 10.1016/j.jaip.2018.05.021..
Keywords: Caregiving, Health Literacy, Children/Adolescents, Education: Patient and Caregiver
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.
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
Zuckerman KE, Chavez AE, Regalado Murillo C
Disparities in familiarity with developmental disabilities among low-income parents.
Parent knowledge about developmental disabilities (DDs) may facilitate access to DD care; however, parents may vary in their knowledge and familiarity with common DDs. The objective of this study was to assess racial/ethnic and language differences in low-income families' familiarity, knowledge, and personal experience with DDs. The investigators concluded that low-income Latino-LEP and other race parents have less familiarity or personal experience with DDs and are less aware of early signs of DDs compared to low-income white parents.
Citation: Zuckerman KE, Chavez AE, Regalado Murillo C . Disparities in familiarity with developmental disabilities among low-income parents. Acad Pediatr 2018 Nov - Dec;18(8):944-51. doi: 10.1016/j.acap.2018.06.011..
Keywords: Disabilities, Children/Adolescents, Caregiving, Health Literacy, Low-Income, Vulnerable Populations, Racial / Ethnic Minorities
Burgette JM, Preisser JS, Weinberger M
Absence of a moderating effect of parent health literacy on Early Head Start enrollment and dental use.
The purpose of the study was to examine the moderating effect of parents' health literacy (HL) on the effectiveness of North Carolina Early Head Start (EHS) in improving children's dental use. The investigators found that parents in EHS had a higher prevalence of low HL compared to non-EHS parents. Parents' HL did not moderate the relationship between EHS and child dental use, suggesting that EHS results in similar improvements in dental use regardless of parent's HL levels.
Citation: Burgette JM, Preisser JS, Weinberger M . Absence of a moderating effect of parent health literacy on Early Head Start enrollment and dental use. J Public Health Dent 2018 Jun;78(3):257-65. doi: 10.1111/jphd.12269..
Keywords: Caregiving, Children/Adolescents, Dental and Oral Health, Health Literacy
Tieu L, Sarkar U, Schillinger D
Barriers and facilitators to online portal use among patients and caregivers in a safety net health care system: a qualitative study.
The researchers explored patient and caregiver perspectives on online patient portal use before its implementation at San Francisco General Hospital. Despite concerns about security, difficulty understanding medical information, and satisfaction with current communication processes, respondents generally expressed enthusiasm about portal use. Their findings suggest a strong need for training and support to assist vulnerable patients with portal registration and use, particularly those with limited health literacy.
AHRQ-funded; HS022561; HS022047; HS022408.
Citation: Tieu L, Sarkar U, Schillinger D . Barriers and facilitators to online portal use among patients and caregivers in a safety net health care system: a qualitative study. J Med Internet Res 2015 Dec 03;17(12):e275. doi: 10.2196/jmir.4847.
Keywords: Web-Based, Safety Net, Caregiving, Electronic Health Records (EHRs), Health Literacy