National Healthcare Quality and Disparities Report
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Search All Research Studies
Topics
- Back Health and Pain (1)
- Cancer (1)
- (-) Caregiving (8)
- Children/Adolescents (4)
- Clinician-Patient Communication (3)
- Communication (2)
- Diagnostic Safety and Quality (1)
- Emergency Department (1)
- Health Information Technology (HIT) (1)
- Health Services Research (HSR) (1)
- Heart Disease and Health (1)
- Intensive Care Unit (ICU) (1)
- Kidney Disease and Health (1)
- Medical Devices (1)
- Neonatal Intensive Care Unit (NICU) (1)
- Newborns/Infants (3)
- Patient-Centered Healthcare (1)
- (-) Patient and Family Engagement (8)
- Patient Experience (2)
- Provider (1)
- Provider: Physician (1)
- (-) Shared Decision Making (8)
- Surgery (2)
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 8 of 8 Research Studies DisplayedAronson 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, Shared Decision Making, Patient and Family Engagement, Emergency Department, Health Information Technology (HIT)
Neu M, Klawetter S, Greenfield JC
Mothers' experiences in the NICU before family-centered care and in NICUs where it is the standard of care.
Family-centered care (FCC) in neonatal intensive care units (NICUs) was initiated in 1992 to promote a respectful response to individual family needs and support parental participation in care and decision-making for their infants. Although benefits of FCC have been reported, changes in the maternal experience in the NICU are unknown. The purpose of this study was to compare mothers' experiences in NICUs where FCC is the standard of care and to compare these with the experiences of mothers 2 decades ago.
AHRQ-funded; HS026370.
Citation: Neu M, Klawetter S, Greenfield JC .
Mothers' experiences in the NICU before family-centered care and in NICUs where it is the standard of care.
Adv Neonatal Care 2020 Feb;20(1):68-79. doi: 10.1097/anc.0000000000000671.
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Keywords: Newborns/Infants, Patient-Centered Healthcare, Neonatal Intensive Care Unit (NICU), Intensive Care Unit (ICU), Caregiving, Shared Decision Making, Patient Experience, Patient and Family Engagement
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: Shared Decision Making, Patient and Family Engagement, Caregiving, Children/Adolescents, Back Health and Pain, Surgery
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, Shared Decision Making, Surgery, Kidney Disease and Health, Caregiving, Provider: Physician, Provider, Patient and Family Engagement
Ashcraft LE, Asato M, Houtrow AJ
Parent empowerment in pediatric healthcare settings: a systematic review of observational studies.
The objective of this systematic review was to synthesize potential antecedents and consequences of parent empowerment in healthcare settings. The authors identified six themes within consequences of empowerment: increased parent involvement in daily care, improved symptom management, enhanced informational needs and tools, increased involvement in care decisions, increased advocacy for child, and engagement in empowering others. Six themes summarizing antecedents of empowerment also emerged: parent-provider relationships.
AHRQ-funded; HS022989.
Citation: Ashcraft LE, Asato M, Houtrow AJ .
Parent empowerment in pediatric healthcare settings: a systematic review of observational studies.
Patient 2019 Apr;12(2):199-212. doi: 10.1007/s40271-018-0336-2..
Keywords: Caregiving, Children/Adolescents, Clinician-Patient Communication, Shared Decision Making, Patient and Family Engagement
Bardach NS, Burkhart Q, Richardson LP
Hospital-based quality measures for pediatric mental health care.
The objective of this study was to develop and test medical record-based measures used to assess quality of pediatric mental health care in the emergency department (ED) and inpatient settings. The investigators drafted an evidence-based set of pediatric mental health care quality measures for the ED and inpatient settings and used them to identify sex and race disparities and substantial hospital variation.
AHRQ-funded; HS020506.
Citation: Bardach NS, Burkhart Q, Richardson LP .
Hospital-based quality measures for pediatric mental health care.
Pediatrics 2018 Jun;141(6). doi: 10.1542/peds.2017-3554..
Keywords: Cancer, Caregiving, Children/Adolescents, Clinician-Patient Communication, Communication, Shared Decision Making, Diagnostic Safety and Quality, Patient Experience, Patient and Family Engagement
Jolles MP, Wells R
Does caregiver participation in decision making within child welfare agencies influence children's primary and mental health care service use?
This study uses a national sample of children involved with child welfare to compare their health service use between those children served through a participatory decision making (PDM) practice and those who did not experience it. It concluded that lower-risk families were more likely to be served through PDM which was positively associated with child use of primary health services.
AHRQ-funded; HS000032.
Citation: Jolles MP, Wells R .
Does caregiver participation in decision making within child welfare agencies influence children's primary and mental health care service use?
Child Care Health Dev 2017 Mar;43(2):192-201. doi: 10.1111/cch.12384.
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Keywords: Caregiving, Children/Adolescents, Shared Decision Making, Health Services Research (HSR), Patient and Family Engagement
Blumenthal-Barby JS, Kostick KM, Delgado ED
Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: implications for informed consent and shared decision-making.
The authors investigated the decision-making process and informational and decisional needs of patients and their caregivers regarding left ventricular assist device (LVAD) placement. They found that participants easily and clearly identified their values: life extension; family; and mobility. Participants reported the need to meet other patients and caregivers before device placement and to have an involved caregiver to synthesize information. They further found that some participants demonstrated a lack of clarity regarding transplant probability.
AHRQ-funded; HS024849.
Citation: Blumenthal-Barby JS, Kostick KM, Delgado ED .
Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: implications for informed consent and shared decision-making.
J Heart Lung Transplant 2015 Sep;34(9):1182-9. doi: 10.1016/j.healun.2015.03.026.
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Keywords: Caregiving, Shared Decision Making, Heart Disease and Health, Medical Devices, Patient and Family Engagement