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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
76 to 100 of 229 Research Studies DisplayedCasillas A, Cemballi AG, Abhat A
An untapped potential in primary care: semi-structured interviews with clinicians on how patient portals will work for caregivers in the safety net.
Researchers used qualitative methods to explore safety net providers' perspectives on portal use among caregivers for their patients. They found that providers recognized the potential for portals to improve information delivery and communication by helping caregivers assist socially and medically complex patients in the safety net. Providers in safety net sites also discussed a clear need for better ways to keep in touch with patients and connect with caregivers, yet security and privacy are perhaps of higher importance in these settings and may pose challenges to portal adoption. Further, caregivers of patients in the safety net likely face similar communication barriers as patients, especially with respect to digital literacy, health literacy, and English proficiency.
AHRQ-funded; HS022408; HS022561.
Citation: Casillas A, Cemballi AG, Abhat A .
An untapped potential in primary care: semi-structured interviews with clinicians on how patient portals will work for caregivers in the safety net.
J Med Internet Res 2020 Jul 20;22(7):e18466. doi: 10.2196/18466..
Keywords: Primary Care, Caregiving, Electronic Health Records (EHRs), Health Information Technology (HIT)
Berridge C, Wetle TF
Why older adults and their children disagree about in-home surveillance technology, sensors, and tracking.
Researchers compared preferences of older adult women and their adult children for three remote monitoring technologies. They found that adult children preferred each technology more than their mothers did and underestimated both their mothers' ability to comprehend the functions of the technologies and the importance of engaging them fully in decision making. For both groups, privacy was the most-cited concern, and participants perceived significant overlap between values of privacy, independence, identity, and freedom. They recommended shared decision-making tools to promote remote monitoring use consistent with older adults' values and to prevent conflict and caregiver overreach.
AHRQ-funded; HS000011.
Citation: Berridge C, Wetle TF .
Why older adults and their children disagree about in-home surveillance technology, sensors, and tracking.
Gerontologist 2020 Jul 15;60(5):926-34. doi: 10.1093/geront/gnz068..
Keywords: Elderly, Caregiving, Telehealth, Health Information Technology (HIT), Home Healthcare
Amar-Dolan LG, Horn MH, O'Connell B B
"This is how hard it is". family experience of hospital-to-home transition with a tracheostomy.
This study explores the experience of family caregivers of children and young adults with a tracheostomy during the transition from hospital to home care. Researchers sought to identify the specific unmet needs of families to direct future interventions. Using semi-structured interviews, they found a need for family-centered discharge processes including coordination of care and teaching focused on emergency preparedness.
AHRQ-funded; HS000063.
Citation: Amar-Dolan LG, Horn MH, O'Connell B B .
"This is how hard it is". family experience of hospital-to-home transition with a tracheostomy.
Ann Am Thorac Soc 2020 Jul;17(7):860-68. doi: 10.1513/AnnalsATS.201910-780OC..
Keywords: Transitions of Care, Home Healthcare, Caregiving, Patient Experience, Care Coordination, Hospital Discharge, Hospitals, Children/Adolescents, Patient-Centered Healthcare
Riley AR, Walker BL, Hall TA
Development and initial validation of a measure of parents' preferences for behavioral counseling in primary care.
There is a significant need to understand the factors that contribute to parents' consumer preferences for behavioral health services in pediatric primary care; however, no validated measure of such preferences exists. In this article, the investigators discuss the development of the BIPS (Behavioral Information Preferences Scale), a measure of parents' preferences for delivery of behavioral guidance in pediatric primary care and assessed its psychometric properties.
AHRQ-funded; HS022981.
Citation: Riley AR, Walker BL, Hall TA .
Development and initial validation of a measure of parents' preferences for behavioral counseling in primary care.
Fam Syst Health 2020 Jun;38(2):139-50. doi: 10.1037/fsh0000481..
Keywords: Children/Adolescents, Behavioral Health, Primary Care, Caregiving
Collins SA, Couture B, Smith AD
Mixed-methods evaluation of real-time safety reporting by hospitalized patients and their care partners: the MySafeCare application.
This study evaluated the effectiveness of a real-time safety reporting tool by hospitalized patients and their care partners compared with other reporting mechanisms. The study used mixed methods including 20-month preimplementation and postimplementation trials evaluating MySafeCare, a web-based applications which allows real time reporting by hospitalized patients/care partners. Submission rates to MySafeCare in three hospital units (oncology acute care, vascular intermediate care, medical intensive care) were compared to submission rates to the Patient Family Relations (PFR) Department, a hospital service to address family/patient concerns. Thirty-two MySafeCare submissions were received during the study period with an average rate of 1.7 submissions per 1000 patient-days. MySafeCare submission rates were significantly higher than PFR submission rates during the postintervention period on the vascular unit. PFR submissions decreased after MySafeCare implementation for all units.
AHRQ-funded; HS023535.
Citation: Collins SA, Couture B, Smith AD .
Mixed-methods evaluation of real-time safety reporting by hospitalized patients and their care partners: the MySafeCare application.
J Patient Saf 2020 Jun;16(2):e75-e81. doi: 10.1097/pts.0000000000000493..
Keywords: Patient Safety, Hospitalization, Inpatient Care, Health Information Technology (HIT), Caregiving
Latulipe C, Mazumder SF, Wilson RKW
Security and privacy risks associated with adult patient portal accounts in US hospitals.
The authors sought to identify the proportions of hospitals that provide proxy accounts to caregivers of adult patients, endorse password sharing with caregivers, and enable patients to restrict the types of information seen by their caregivers. They found that almost half of surveyed hospital personnel recommended password sharing and that few hospitals enabled patients to limit the types of information seen by those with proxy access. They concluded that hospitals and electronic health record vendors need to improve the availability and setup process of proxy accounts in a way that allows caregivers to care for patients without violating their privacy.
AHRQ-funded; HS021679.
Citation: Latulipe C, Mazumder SF, Wilson RKW .
Security and privacy risks associated with adult patient portal accounts in US hospitals.
JAMA Intern Med 2020 Jun;180(6):845-9. doi: 10.1001/jamainternmed.2020.0515..
Keywords: Electronic Health Records (EHRs), Health Information Technology (HIT), Caregiving, Hospitals
Poppert Cordts KM, Wilson AC, Riley AR
More than mental health: parent physical health and early childhood behavior problems.
The impacts of parental physical or mental health problems on early childhood behavior is discussed. This study uses data from 375 parents with a child between 18 months and 5 years. The authors found that higher levels of parent self-reported physical and mental health concerns indirectly influence child behavior symptoms. Impaired parent physical health was associated with poorer parental self-efficacy and disruptive child behavior. Mental health concerns were associated with a more negative parenting style and lower self-efficacy which was related to more child behavior symptoms.
AHRQ-funded; HS022981.
Citation: Poppert Cordts KM, Wilson AC, Riley AR .
More than mental health: parent physical health and early childhood behavior problems.
J Dev Behav Pediatr 2020 May;41(4):265-71. doi: 10.1097/dbp.0000000000000755..
Keywords: Children/Adolescents, Behavioral Health, Family Health and History, Caregiving
Greenzang KA, Al-Sayegh H, Ma C
Parental considerations regarding cure and late effects for children with cancer.
The purpose of this study was to learn how parents and physicians consider late-effects risks against a potential survival benefit when making treatment decisions. Parents of children with cancer and physicians at Dana-Farber/Boston Children's Cancer and Blood Disorders Center were surveyed. Investigators found that avoidance of severe neurocognitive impairment was the predominant driver of parent and physician treatment preferences, even over an increased chance of cure. They concluded that their study highlights the importance of exploring parental late-effects priorities when discussing treatment options.
AHRQ-funded; HS022986.
Citation: Greenzang KA, Al-Sayegh H, Ma C .
Parental considerations regarding cure and late effects for children with cancer.
Pediatrics 2020 May;145(5):e20193552. doi: 10.1542/peds.2019-3552..
Keywords: Children/Adolescents, Cancer, Shared Decision Making, Caregiving, Risk
Links AR, Callon W, Wasserman C
Parental role in decision-making for pediatric surgery: perceptions of involvement in consultations for tonsillectomy.
This study examined the parental role in decision-making for pediatric surgery, in particular perceptions of involvement in consultations for tonsillectomy. The investigators analyzed consults between 63 parents and 8 otolaryngologists. Over a third (37%) of clinicians and parent ratings showed inadequate agreement of preferred roles. Parents perceived greater involvement when clinicians discussed reasons to have or not have the surgery. There was less perception of parental involvement when clinicians used jargon, parents trusted clinicians, or experienced greater decisional conflict.
AHRQ-funded; HS022932.
Citation: Links AR, Callon W, Wasserman C .
Parental role in decision-making for pediatric surgery: perceptions of involvement in consultations for tonsillectomy.
Patient Educ Couns 2020 May;103(5):944-51. doi: 10.1016/j.pec.2019.12.012..
Keywords: Children/Adolescents, Shared Decision Making, Surgery, Caregiving
Ramirez-Zohfeld V, Seltzer A, Xiong L
Use of electronic health records by older adults, 85 years and older, and their caregivers.
Healthcare providers may not offer patient portal (PP) access to electronic health records (EHRs) to their patients older than 85 years, due to the false impression that they do not utilize technology. It is imperative that older adults be given equal opportunity to use technology in regard to their healthcare. The objective of this study was to characterize the content and frequency of use of PP messaging tethered to EHRs by older adults, aged 85 years and older, and their caregivers.
AHRQ-funded; HSO24071.
Citation: Ramirez-Zohfeld V, Seltzer A, Xiong L .
Use of electronic health records by older adults, 85 years and older, and their caregivers.
J Am Geriatr Soc 2020 May;68(5):1078-82. doi: 10.1111/jgs.16393..
Keywords: Electronic Health Records (EHRs), Health Information Technology (HIT), Elderly, Caregiving
Fuller TE, Pong DD, Piniella N
Interactive digital health tools to engage patients and caregivers in discharge preparation: implementation study.
This clinical trial studied implementation of a suite of EHR-integrated digital health tools to engage patients, caregivers, and clinicians in discharge preparation during hospitalization. Patients who were enrolled agreed to watch a discharge video, complete a checklist assessing discharge readiness, and request postdischarge text messaging with a physician 24 to 48 hours before their expected discharge date. Out of 752 patient admissions, from December 2017 to July 2018, 510 participated, 416 watched the video and completed the checklist, and 94 completed only the checklist. Most patients endorsed the tools, but felt that the video and checklist would be more useful closer to the actual discharge date. Clinicians participating in focus groups perceived the value for patients but felt that there were a number of limitations including low awareness and variable workflow regarding the intervention. A number of strategies were offered by the authors to address implementation barriers and promote adoption of these tools.
AHRQ-funded; HS024751.
Citation: Fuller TE, Pong DD, Piniella N .
Interactive digital health tools to engage patients and caregivers in discharge preparation: implementation study.
J Med Internet Res 2020 Apr 28;22(4):e15573. doi: 10.2196/15573..
Keywords: Health Information Technology (HIT), Patient and Family Engagement, Caregiving, Hospital Discharge, Transitions of Care, Hospitals
Keller SC, Cosgrove SE, Arbaje AI
It's complicated: patient and informal caregiver performance of outpatient parenteral antimicrobial therapy-related tasks.
This study’s objective was to perform a patient-centered goal-directed task analysis to identify what is required for successful completion of outpatient parenteral antimicrobial therapy (OPAT) by patients and caregivers. The authors conducted 40 semi-structured patient interviews and also 20 observations of patients and caregivers performing OPAT. Six goals were identified. The authors concluded that patients and caregivers should use teach-back, take formal classes, and other forms of instruction to ensure safety and good outcomes for the patients.
AHRQ-funded; HS025782.
Citation: Keller SC, Cosgrove SE, Arbaje AI .
It's complicated: patient and informal caregiver performance of outpatient parenteral antimicrobial therapy-related tasks.
Am J Med Qual 2020 Mar/Apr;35(2):133-46. doi: 10.1177/1062860619853345..
Keywords: Caregiving, Patient-Centered Healthcare, Antimicrobial Stewardship, Medication, Education: Patient and Caregiver, Patient Safety
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
Mitchell LL, Peterson CM, Rud SR
"It's like a cyber-security blanket": the utility of remote activity monitoring in family dementia care.
Technologies have emerged that aim to help older persons with Alzheimer's disease and related dementias (ADRDs) remain at home while also supporting their caregiving family members. The current study evaluated the acceptability and utility of an in-home remote activity monitoring (RAM) system for 30 family caregivers of persons with ADRD via quantitative survey data collected over a 6-month period and qualitative survey and interview data collected for up to 18 months.
AHRQ-funded; HS022836.
Citation: Mitchell LL, Peterson CM, Rud SR .
"It's like a cyber-security blanket": the utility of remote activity monitoring in family dementia care.
J Appl Gerontol 2020 Jan;39(1):86-98. doi: 10.1177/0733464818760238..
Keywords: Elderly, Dementia, Caregiving, Telehealth, Health Information Technology (HIT)
Hale KL, Wallace DD, Blanco-Duran D
Conversations between Latina mothers and their child's mental health provider: An observational study of shared decision-making regarding pediatric patient mental health needs.
The authors evaluated shared decision-making (SDM) and delineated SDM processes in audio-recorded conversations between language-congruent Spanish-/English-speaking clinicians and parents of pediatric mental health patients. They found that their present sample performed on par with other populations studied to date, and that it expanded the evaluation of observed SDM to include Latino patients and new clinician populations. The practical implications of their findings is that use of the Observer OPTION(5) instrument highlights that eliciting and integrating parent/patient preferences is a skill that requires attention when delivering culturally competent interventions.
AHRQ-funded; HS000032.
Citation: Hale KL, Wallace DD, Blanco-Duran D .
Conversations between Latina mothers and their child's mental health provider: An observational study of shared decision-making regarding pediatric patient mental health needs.
Patient Educ Couns 2020 Jan;103(1):96-102. doi: 10.1016/j.pec.2019.08.013..
Keywords: Children/Adolescents, Shared Decision Making, Cultural Competence, Racial and Ethnic Minorities, Clinician-Patient Communication, Communication, Caregiving, Behavioral Health
Hao Z, Ruggiano N
Family-centeredness in dementia care: what is the evidence?
In this systematic review, the authors identified and evaluated intervention studies examining family-centered care in Alzheimer’s disease and related dementias. They discussed further implications for research and practice.
AHRQ-funded; HS026571.
Citation: Hao Z, Ruggiano N .
Family-centeredness in dementia care: what is the evidence?
Soc Work Health Care 2020 Jan;59(1):1-19. doi: 10.1080/00981389.2019.1690089..
Keywords: Dementia, Neurological Disorders, Evidence-Based Practice, Patient-Centered Healthcare, Caregiving
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.
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