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Topics
- Cancer (2)
- (-) Caregiving (10)
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- Racial and Ethnic Minorities (1)
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- Shared Decision Making (2)
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- Stress (1)
- Surgery (2)
- Treatments (1)
- Vaccination (1)
- Young Adults (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 10 of 10 Research Studies DisplayedGreenzang 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
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
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
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, Shared 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
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
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, Shared 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