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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 95 Research Studies DisplayedNacht CL, Jacobson N, Shiyanbola O
Perception of physicians' notes among parents of different health literacy levels.
The study explored how parents of varying health literacy levels perceive accessing physicians' notes during pediatric hospitalization. Thematic analysis of interviews with 28 parents revealed benefits like information recall and autonomy, with challenges including receiving bad news before face-to-face communication. The study found that parents with limited literacy found notes especially helpful for understanding the care of the child while reducing worry. Simplifying medical terms could enhance note accessibility for all parents, ensuring equitable access to healthcare information.
AHRQ-funded; HS027214.
Citation: Nacht CL, Jacobson N, Shiyanbola O .
Perception of physicians' notes among parents of different health literacy levels.
Hosp Pediatr 2024 Feb; 14(2):108-15. doi: 10.1542/hpeds.2023-007240.
Keywords: Children/Adolescents, Health Literacy, Caregiving, Clinician-Patient Communication, Communication
Jolliff A, Coller RJ, Kearney H
An mHealth design to promote medication safety in children with medical complexity.
This study describes an effort to design a health information technology tool to improve medication safety for children with medical complexity (CMC). The study engaged family caregivers, secondary caregivers, and clinicians who work with CMC in a co-design process to identify: 1) medication safety challenges experienced by CMC caregivers and, 2) design requirements for a mobile health application to improve medication safety for CMC in the home. Family caregivers, secondary caregivers, and clinicians from a children's hospital-based pediatric complex care program participated in virtual co-design sessions. During these sessions, the facilitator guided 16 co-designers in generating and converging upon medication safety challenges and design requirements. These sessions were recorded and reviewed after conclusion to confirm that all designer comments had been captured. An analysis yielded 11 challenges to medication safety and 11 corresponding design requirements that fit into three broader challenges: giving the right medication at the right time; communicating with others about medications; and accommodating complex medical routines.
AHRQ-funded; HS028409.
Citation: Jolliff A, Coller RJ, Kearney H .
An mHealth design to promote medication safety in children with medical complexity.
Appl Clin Inform 2024 Jan; 15(1):45-54. doi: 10.1055/a-2214-8000..
Keywords: Children/Adolescents, Medication: Safety, Medication, Health Information Technology (HIT), Chronic Conditions, Telehealth, Caregiving
Goyal NK, Sood E, Gannon MA
Priorities for well child care of families affected by parental opioid use disorder.
This study’s objective was to explore priorities for well childcare (WCC) visit content for women in treatment with opioid use disorder to inform primary care recommendations for this population. Eligible participants had children 2 years or younger and were English speaking. Among the 30 parent participants, they were overwhelmingly White (83%) and unmarried (90%). Thirteen clinicians participated, of whom 9 were attending physicians. Interviews were conducted with parents and clinicians which led to five emerging themes: (1) improving knowledge and confidence related to child development, behavior, and nutrition; (2) mitigating safety concerns; (3) addressing complex health and subspecialty needs through care coordination; (4) acknowledging parental health and wellbeing in the pediatric encounter; and (5) supporting health education and care related to neonatal opioid withdrawal syndrome. These issues were expressed as hard to address by parents and clinicians due to time constraints, social determinants of health, and significant informational needs.
AHRQ-funded; HS027399.
Citation: Goyal NK, Sood E, Gannon MA .
Priorities for well child care of families affected by parental opioid use disorder.
J Addict Med 2024 Jan-Feb; 18(1):48-54. doi: 10.1097/adm.0000000000001243..
Keywords: Opioids, Substance Abuse, Behavioral Health, Caregiving, Children/Adolescents
Graaf G, Hughes PM, deJong NA
Family support services and reported parent coping among caregivers of children with emotional, behavioral, or developmental disorders.
Researchers examined the association of family support services with caregiver mental health and well-being, as well as caregiver coping, among families of children with special health care needs (CSHCN). Data was taken from the National Survey of Children's Health. Results showed that adequate care coordination was associated with higher rates of caregiver-reported positive coping for CSHCN caregivers who had no source of emotional support. Emotional support services were also associated with increased reports of positive coping. The researchers concluded that mobilization of resources that can aid caregivers in coordinating care and provide emotional support may play a key role in positive caregiver coping for families of CSHCN.
AHRQ-funded; HS000032.
Citation: Graaf G, Hughes PM, deJong NA .
Family support services and reported parent coping among caregivers of children with emotional, behavioral, or developmental disorders.
J Dev Behav Pediatr 2024 Jan; 45(1):e54-e62. doi: 10.1097/dbp.0000000000001230.
Keywords: Children/Adolescents, Caregiving, Disabilities, Behavioral Health
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
Leyenaar JK, Tolpadi A, Parast L
Collaborative to increase lethal means counseling for caregivers of youth with suicidality.
The authors implemented an eight-hospital quality improvement collaborative with the goals of an absolute increase in hospitals' mean rate of caregiver lethal means counseling (LMC) and evaluating the effectiveness of the collaborative on LMC. The collaborative used a structured process of alternating learning sessions and action periods to improve LMC; electronic medical record documentation of LMC were evaluated during three phases: precollaborative, active collaborative, and postcollaborative. Findings showed that LMC increased during the collaborative but did not exceed expected trends. The authors concluded that interventions developed by the participating hospitals may be beneficial to improve LMC for caregivers of hospitalized youth with suicidality.
AHRQ-funded; HS025291.
Citation: Leyenaar JK, Tolpadi A, Parast L .
Collaborative to increase lethal means counseling for caregivers of youth with suicidality.
Pediatrics 2022 Dec 1;150(6):e2021055271. doi: 10.1542/peds.2021-055271..
Keywords: Children/Adolescents, Caregiving, Behavioral Health
Lindly OJ, Cabral J, Mohammed R
AHRQ Author: Mistry KB
"I don't do much without researching things myself": a mixed methods study exploring the role of parent health literacy in autism services use for young children.
This mixed-methods study examined how parent health literacy contributes to health-related outcomes for children with autism. This study included 82 US parents of a child with autism 2-5 years old and sought to describe (1) health literacy dimensions, (2) how health literacy influences services use, and (3) health literacy improvement strategies. The authors found that: autism information was accessed from multiple sources; understanding autism information involved "doing your own research"; autism information empowered decision-making; health literacy facilitated behavioral services use; health literacy influenced medication use; family and system characteristics also affected services use; autism education remains needed; services information is needed across the diagnostic odyssey; and greater scientific information accessibility would increase uptake.
AHRQ-authored; AHRQ-funded; HS000063.
Citation: Lindly OJ, Cabral J, Mohammed R .
"I don't do much without researching things myself": a mixed methods study exploring the role of parent health literacy in autism services use for young children.
J Autism Dev Disord 2022 Aug;52(8):3598-611. doi: 10.1007/s10803-021-05240-0..
Keywords: Children/Adolescents, Autism, Caregiving, Health Literacy
Lindly OJ, Shui AM, Stotts NM
Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study.
This study showed on average caregiver strain did not significantly change in North American parents of children with autism during a 2-year period. Improved caregiver strain was found to be linked to improved child functioning and behavior. Recommendations included routine assessment of caregiver strain, and referral to evidence-based programming and supports in order to help alleviate some of the burden that families of children with autism commonly experience.
AHRQ-funded; HS000063.
Citation: Lindly OJ, Shui AM, Stotts NM .
Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study.
Autism 2022 Aug;26(6):1460-76. doi: 10.1177/13623613211052108..
Keywords: Autism, Caregiving, Children/Adolescents
Adolphe S, Fernandez-Pastrana I, Scott H
EASE-ing the way for pediatric providers and parents: the Engagement and Access to Special Education (EASE) Clinic.
Primary Care Providers (PCPs) are tasked by the American Academy of Pediatrics to identify children who need special education and ensure that those children receive appropriate related services provided by the Individuals with Disabilities Education Act (IDEA). The IDEA entitles children between the ages of 3 and 21 to free education through individualized education programs (IEPs), and other related supports. The extent of PCP knowledge about the IDEA, special education, and available related support services and how to assess them, is largely unknown. Existing research indicates there is a lack of knowledge, training, and confidence in providers about special education. Boston Medical Center’s (BMC) Engagement and Access to Special Education (EASE) clinic was developed to provide support to the parents and PCPs of children with special education needs. The purpose of this article was to introduce and describe the EASE clinical model as a useful method for PCPs to strengthen their ability to provide appropriate and available comprehensive care to their patients requiring special education. The authors reported that of the 14,000 pediatric patients at the Boston Medical Center, 308 children were referred to the EASE clinic between its inception in 2017 and May 2021. The majority of children were Black non-Hispanic, English-speaking, and male, with an average age of 8.3 at first clinic. During that same time 452 total visits were completed, with a waiting list of less than 90 days. The authors conclude that for primary care practices with patients with special education needs, the BMC EASE clinic can serve as a useful model for improving their ability to provide care.
AHRQ-funded; HS022242.
Citation: Adolphe S, Fernandez-Pastrana I, Scott H .
EASE-ing the way for pediatric providers and parents: the Engagement and Access to Special Education (EASE) Clinic.
Acad Pediatr 2022 May-Jun;24(4):705-07. doi: 10.1016/j.acap.2022.02.011..
Keywords: Children/Adolescents, Caregiving, Patient and Family Engagement, Vulnerable Populations, Disabilities
Vasan A, Darko O, Fortin K
Community resource connection for pediatric caregivers with unmet social needs: a qualitative study.
The authors aimed to explore caregivers' perceived barriers to and facilitators of community resource connection. Through semi-structured interviews, they identified four primary themes, including competing priorities and burdensome application processes. They recommended electronic resources to help caregivers identify locally available services, with longitudinal supports to ensure caregivers can establish and maintain linkages with these services.
AHRQ-funded; HS028555.
Citation: Vasan A, Darko O, Fortin K .
Community resource connection for pediatric caregivers with unmet social needs: a qualitative study.
Acad Pediatr 2022 Apr;22(3):461-69. doi: 10.1016/j.acap.2021.09.010..
Keywords: Children/Adolescents, Caregiving, Social Determinants of Health
Bogetz JF, Revette A, DeCourcey D
Bereaved parent perspectives on the benefits and burdens of technology assistance among children with complex chronic conditions.
The objective of this study was to understand bereaved parent perspectives on technology assistance among children with complex chronic conditions (CCCs). Researchers analyzed data from the cross-sectional Survey of Caring for Children with CCCs. Parents described both benefits and burdens of technology, with two emergent subthemes related to goals of care: technology was necessary to give time for life extension and/or to say goodbye, and technology greatly impacted the child's quality of life and symptoms. The second theme to emergence was complications and regret. The researchers concluded that it is important to understand parents' most goals when supporting decisions about technology assistance for children with CCCs.
AHRQ-funded; HS022986.
Citation: Bogetz JF, Revette A, DeCourcey D .
Bereaved parent perspectives on the benefits and burdens of technology assistance among children with complex chronic conditions.
J Palliat Med 2022 Feb; 25(2):250-58. doi: 10.1089/jpm.2021.0221..
Keywords: Children/Adolescents, Caregiving, Quality of Life, Chronic Conditions
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
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
Desai AD, Wang G, Wignall J
User-centered design of a longitudinal care plan for children with medical complexity.
This study’s goal was to determine content priorities and design preferences for a longitudinal care plan (LCP) among caregivers and healthcare providers who care for children with complex medical conditions (CMC) in acute care settings. Thirty iterative one-on-one design sessions with 10 caregivers and 20 providers were conducted. There was high within-group variability in content preferences among caregivers compared to provider groups. The authors identified 6 design preferences: a familiar yet customizable layout, a problem-based organization schema, linked content between sections, a table layout for most sections, a balance between unstructured and structured data fields, and use of family-centered terminology.
AHRQ-funded; HS024299.
Citation: Desai AD, Wang G, Wignall J .
User-centered design of a longitudinal care plan for children with medical complexity.
J Am Med Inform Assoc 2020 Dec 9;27(12):1860-70. doi: 10.1093/jamia/ocaa193..
Keywords: Children/Adolescents, Chronic Conditions, Electronic Health Records (EHRs), Health Information Technology (HIT), Care Coordination, Caregiving
Bogetz JF, Revette A, Rosenberg AR
"I could never prepare for something like the death of my own child": parental perspectives on preparedness at end of life for children with complex chronic conditions.
This study’s goal was to elucidate aspects important to preparedness at end of life (EOL) among bereaved parents of children with complex chronic conditions (CCCs). Participants answered 21 open-response queries on communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Findings showed that most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond "readiness." Recommendations included more research to identify supportive elements among parents facing their child's EOL.
AHRQ-funded; HS022986.
Citation: Bogetz JF, Revette A, Rosenberg AR .
"I could never prepare for something like the death of my own child": parental perspectives on preparedness at end of life for children with complex chronic conditions.
J Pain Symptom Manage 2020 Dec;60(6):1154-62.e1. doi: 10.1016/j.jpainsymman.2020.06.035..
Keywords: Children/Adolescents, Caregiving, Mortality, Chronic Conditions, Palliative Care