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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 25 of 205 Research Studies Displayed
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.
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
Beeber AS, Hoben M, Leeman J
Developing a toolkit to improve resident and family engagement in the safety of assisted living: Engage-A stakeholder-engaged research protocol.
This paper describes an AHRQ-funded study protocol (Engage) to develop a toolkit for increasing resident and family engagement in assisted living (AL) safety. The study goals are to engage AL residents and family caregivers, AL staff, and other AL stakeholders to (1) identify common AL safety problems; (2) prioritize safety problems and identify and evaluate existing PFE interventions with the potential to address safety problems in the AL setting; and (3) develop a testable toolkit to improve PFE in AL safety. Methods, including qualitative interviews, a scoping review of persona and family engagement (PFE) interventions, and stakeholder panel meetings are discussed. The authors also detail how the protocol was modified to address the unique challenges of the COVID-19 pandemic.
Citation: Beeber AS, Hoben M, Leeman J . Developing a toolkit to improve resident and family engagement in the safety of assisted living: Engage-A stakeholder-engaged research protocol. Res Nurs Health 2022 Aug;45(4):413-23. doi: 10.1002/nur.22232..
Keywords: Patient and Family Engagement, Patient Safety, Caregiving, Public Health, Long-Term Care
Gaugler JE, Rosebush CA, Zmora R
Outcomes of remote activity monitoring for persons living with dementia over an 18-month period.
The purpose of this study was to evaluate whether Remote Activity Monitoring (RAM) technology was associated with reductions in negative health transitions and service utilization for persons with Alzheimer's disease or a related dementia over an 18-month period. The researchers enrolled 88 recipients and their caregivers in a clinical trial, with 88 care recipients and their caregivers in the RAM intervention arm and 91 care recipients and their caregivers in the control arm. The treatment group had the RAM system installed in their home. The attention control group did not receive RAM technology. Baseline and follow-up surveys assessed whether the care recipient had fallen or wandered in the past 6 months (yes/no). Caregivers were also asked whether the care recipient had used any of the following healthcare services in the past 6 months: nursing home stays, assisted living stays other residential care stays, hospital stays, or emergency room visits. The study found that in adjusted models, emergency department visits were almost 50% lower in the intervention group compared with the control group. In addition, the odds of experiencing a higher frequency of falls versus a lower frequency of falls was 0.36 for those in the intervention group compared with controls. The RAM technology did not have a statistically significant effect on any other outcome. The researchers concluded that although RAM did not provide direct support for the management of behaviors for persons with AD/ADRD, the findings imply that this technology may prevent some adverse health events for people living with dementia in the community. The ongoing, unobtrusive monitoring and system alerts of RAM may have resulted in caregivers identifying activity or the lack thereof that may
have prevented falls and wandering events. In turn, emergency room use among persons with dementia may have been avoided.
have prevented falls and wandering events. In turn, emergency room use among persons with dementia may have been avoided.
Citation: Gaugler JE, Rosebush CA, Zmora R . Outcomes of remote activity monitoring for persons living with dementia over an 18-month period. J Am Geriatr Soc 2022 Aug;70(8):2439-42. doi: 10.1111/jgs.17839..
Keywords: Elderly, Dementia, Neurological Disorders, Telehealth, Health Information Technology (HIT), Outcomes, Caregiving
Topham EW, Bristol A, Luther B
Caregiver inclusion in IDEAL discharge teaching: implications for transitions from hospital to home.
The purpose of this study was to explore perceptions of caregivers regarding their discharge preparation, focusing particular attention on whether and how they believed discharge preparation impacted post-discharge patient outcomes. Through interviews with four English-speaking caregivers, findings showed that, once home, the caregivers reported gaps in their knowledge of how to care for the patient, suggesting key gaps related to knowledge of warning signs and problems. Two of the four caregiver participants attributed a hospital readmission to post-discharge knowledge gaps. This study of caregiver experiences suggests that AHRQ’s IDEAL discharge planning strategy remains a useful and important framework for case managers to follow when providing discharge services.
Citation: Topham EW, Bristol A, Luther B . Caregiver inclusion in IDEAL discharge teaching: implications for transitions from hospital to home. Prof Case Manag 2022 Jul-Aug;27(4):181-93. doi: 10.1097/ncm.0000000000000563..
Keywords: Hospital Discharge, Transitions of Care, Caregiving
Semere W, Cemballi AG, Schillinger D
"We need to bring them out from the shadows:" a qualitative study of safety net physician leaders' perspectives on caregivers.
The purpose of the study was to examine the perspectives of physician leaders on methods and priorities for interacting with patient caregivers. The researchers interviewed 15 primary care physicians from 3 California safety net systems, all of whom were in care management leadership, to evaluate their experiences managing complex patients with caregivers. Interview transcripts were analyzed using thematic analysis, and a research team approach was utilized to derive major themes. The themes included: challenges uncovering caregiver identities, engaging caregivers in patient care, recognizing variation in caregivers' roles, adapting visit communication strategies to include caregivers, and caring for the caregiver. The study concluded that health systems do not tend to recognize caregiver participation in patient care, must overcome language and literacy barriers when attempting to include caregivers in visit communications; all these issues create challenges when attempting to engage caregivers. The researchers advised that outcomes for patients could be improved if methods and processes were developed to identify and communicate with caregivers.
AHRQ-funded; HS027844; HS022408.
Citation: Semere W, Cemballi AG, Schillinger D . "We need to bring them out from the shadows:" a qualitative study of safety net physician leaders' perspectives on caregivers. Patient Educ Couns 2022 Jun;105(6):1663-70. doi: 10.1016/j.pec.2021.10.019..
Keywords: Caregiving, Safety Net, Provider: Physician
Semere W, Makaroun LK, Beach S
Family caregivers navigating the health care system: evolving roles during the COVID-19 pandemic.
The purpose of this study was to explore changes in the ways family caregivers assisted family members with chronic illness and disability in addressing their health care needs during the COVID-19 pandemic. The researchers administered telephone and online surveys to family caregivers who were listed in a regional research registry, asking them what level of helping they provided during the pandemic compared to the level they were providing prior to the pandemic. The study found that of the 561caregivers that responded to the survey, 59% reported an increase in providing help with 1 or more heath care activities. The researchers advise that for caregivers assisting vulnerable patients to access care, support strategies should be considered by the health system and health care providers.
Citation: Semere W, Makaroun LK, Beach S . Family caregivers navigating the health care system: evolving roles during the COVID-19 pandemic. Fam Syst Health 2022 Jun;40(2):268-73. doi: 10.1037/fsh0000688..
Keywords: Caregiving, COVID-19, Chronic Conditions
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.
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.
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
Lee W, Gray SL, Zaslavsky O
Association between having a family member with dementia and perceptions of dementia preventability.
This study examined how having a family history of dementia and caregiving experience are associated with perceptions about and self-efficacy for dementia preventability. Participants were surveyed whether they had a family member with dementia, and if they need whether they served as a caregiver. Of 1,575 respondents, 71% had a family member with dementia, and of those 42% served as a caregiver. People with a family member with dementia were less likely to believe that dementia is preventable and had lower self-efficacy for dementia prevention. Survey participants who were also caregivers had an even lower perception about dementia preventability.
Citation: Lee W, Gray SL, Zaslavsky O . Association between having a family member with dementia and perceptions of dementia preventability. Aging Ment Health 2022 Feb;26(2):270-76. doi: 10.1080/13607863.2020.1839866..
Keywords: Dementia, Caregiving, Family Health and History, Prevention, Neurological Disorders
Dionne-Odom JN, Wells RD, Guastaferro K
An early palliative care telehealth coaching intervention to enhance advanced cancer family caregivers' decision support skills: the CASCADE pilot factorial trial.
The purpose of this study was to evaluate the feasibility, acceptability, and efficacy of the modules of a telehealth palliative care decision support training program (CASCADE training- CAre Supporters Coached to be Adept DEcision Partners) for caregivers of cancer patients. The researchers conducted a pilot trial between October 2019 and October 2020 in which 46 dyads of newly diagnosed cancer patients and their caregivers were randomized and assigned to one of eight experimental conditions. Each experimental condition included a combination of one of three CASCADE modules. Measures of decision support and caregiver and patient distress, training feasibility, and training acceptability were collected. The study found that the individual CASCADE modules were reported to have a possible benefit for decision support and caregiver distress, and that the average caregiver rating for recommending the program was 9.9 on a scale of 1(Not at all likely) to 10 (Extremely likely). The study concluded that the pilot trial was a success and justify and warrant a full-scale trial.
Citation: Dionne-Odom JN, Wells RD, Guastaferro K . An early palliative care telehealth coaching intervention to enhance advanced cancer family caregivers' decision support skills: the CASCADE pilot factorial trial. J Pain Symptom Manage 2022 Jan;63(1):11-22. doi: 10.1016/j.jpainsymman.2021.07.023..
Keywords: Palliative Care, Cancer, Telehealth, Health Information Technology (HIT), Caregiving
Steinberg RS, Nayak A, Burke MA
Association of race and gender with primary caregiver relationships and eligibility for advanced heart failure therapies.
Caregiver support is considered necessary after heart transplant (HT) and left ventricular assist device (LVAD) for patients with end-stage heart failure (HF). Few studies have demonstrated how caregivers differ by gender and race, and whether that impacts therapy eligibility. In this study, the investigators examined caregiver relationships among 674 patients (32% women, 55% Black) evaluated at Emory University from 2011 to 2017.
Citation: Steinberg RS, Nayak A, Burke MA . Association of race and gender with primary caregiver relationships and eligibility for advanced heart failure therapies. Clin Transplant 2022 Jan;36(1):e14502. doi: 10.1111/ctr.14502..
Keywords: Caregiving, Racial / Ethnic Minorities, Heart Disease and Health, Cardiovascular Conditions
Ejem D, Steinhauser K, Dionne-Odom JN
Exploring culturally responsive religious and spirituality health care communications among African Americans with advanced heart failure, their family caregivers, and clinicians.
This study explored how religion and spirituality (R/S) impacts the ways that African Americans (AAs) cope with serious illness. In particular, this study looks at AAs with advanced heart failure and their family caregivers’ (FCGs) preferences about R/S in patient-clinician communication. Transcribed interviews were analyzed to identify emergent themes. AA patient participants (n = 15) were a mean age of 62, 40% female, and 87% had >high school diploma/GED. AA FCGs (n = 14) were a mean age of 58, 93% female, 93% had >high school diploma/GED, and 86% were unemployed. Most caregivers were patients’ spouses/partners. All participants were Protestants. Patients and FCGs perspectives differed in relation to inclusion of R/S in health care communication. Patients felt that R/S should not be discussed in clinical encounters and discussed only if patient initiated. FCGs felt that clinicians’ R/S communication is not a priority, but clinicians should openly acknowledge patients’ R/S beliefs and should engage in R/S conversations with patients.
Citation: Ejem D, Steinhauser K, Dionne-Odom JN . Exploring culturally responsive religious and spirituality health care communications among African Americans with advanced heart failure, their family caregivers, and clinicians. J Palliat Med 2021 Dec;24(12):1798-806. doi: 10.1089/jpm.2021.0044..
Keywords: Racial / Ethnic Minorities, Communication, Heart Disease and Health, Cardiovascular Conditions, Caregiving
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
Rogers H, Madathil KC, Joseph A
An exploratory study investigating the barriers, facilitators, and demands affecting caregivers in a telemedicine integrated ambulance-based setting for stroke care.
This study investigates the impact of telemedicine on workload, teamwork, workflow, and communication of geographically distributed caregivers delivering stroke care in ambulance-based telemedicine. Simulated stroke sessions were conducted with selected caregivers, then followed with a survey and interviews. Findings showed that barriers included frustration with equipment, the loss of personal connection of the neurologists with the patients, and physical constraints in the ambulance. Facilitators included live visual communication increasing teamwork and efficiency, the ease of access to neurologist, increased flexibility, and high overall satisfaction and usability.
Citation: Rogers H, Madathil KC, Joseph A . An exploratory study investigating the barriers, facilitators, and demands affecting caregivers in a telemedicine integrated ambulance-based setting for stroke care. Appl Ergon 2021 Nov;97:103537. doi: 10.1016/j.apergo.2021.103537..
Keywords: Telehealth, Health Information Technology (HIT), Caregiving, Stroke, Cardiovascular Conditions, Emergency Medical Services (EMS)
Armstrong MJ, Gamez N, Alliance S
Clinical care and unmet needs of individuals with dementia with Lewy bodies and caregivers: an interview study.
Investigators researched the clinical care preferences of individuals living with dementia and caregivers, particularly dementia with Lewy bodies (DLB). Twenty individuals with DLB and 25 caregivers were interviewed via a semistructured questionnaire. The investigators concluded that improving care for individuals with DLB and their families will require a multipronged strategy including education for non-specialist care providers, increasing specialty care access, improved clinical care services, research to support disease prognosis and treatment decisions, and local and national strategies for enhanced caregiver support.
Citation: Armstrong MJ, Gamez N, Alliance S . Clinical care and unmet needs of individuals with dementia with Lewy bodies and caregivers: an interview study. Alzheimer Dis Assoc Disord 2021 Oct-Dec;35(4):327-34. doi: 10.1097/wad.0000000000000459..
Keywords: Dementia, Caregiving, Chronic Conditions, Neurological Disorders, Patient Experience
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.
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
Borsky AE, Zuvekas SH, Kent EE
AHRQ Author: Borsky AE, Zuvekas SH
Understanding the characteristics of US cancer survivors with informal caregivers.
This AHRQ-authored paper’s purpose is to provide a national representative description of the sociodemographic characteristics of cancer survivors who have or had an informal caregiver. Cross-sectional data from the MEPS Experiences With Cancer Survivorship Supplement survey in 2011, 2016, and 2017 was used. The study population consisted of 720 US adult survivors of cancer other than nonmelanoma skin cancer who were treated for cancer less than 3 years before the survey and were living in the community. A total of 55.2% of cancer survivors reported having an informal caregiving during or after their cancer treatment. Males were more likely to have a spouse as their caregiver and females were more likely to have a child. Cancer survivors who were female, were married, were of a non-White race/ethnicity, or were in poor health were more likely to have an informal caregiver.
Citation: Borsky AE, Zuvekas SH, Kent EE . Understanding the characteristics of US cancer survivors with informal caregivers. Cancer 2021 Aug 1;127(15):2752-61. doi: 10.1002/cncr.33535..
Keywords: Medical Expenditure Panel Survey (MEPS), Cancer, Caregiving
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.
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 / Ethnic Minorities, Cultural Competence
Russell D, Burgdorf JG, Kramer C
Family caregivers' conceptions of trust in home health care providers.
Trust is important to family caregivers of older adults receiving home health care (HHC). Caregivers rely extensively on nurses, home health aides, and other providers to manage complex care tasks. The current study examined how family caregivers conceived of trust in HHC providers. The investigators found that caregivers' conceptions of trust in providers were affected by interpersonal aspects of their interactions with providers as well as the broader systems of care within which they participate.
Citation: Russell D, Burgdorf JG, Kramer C . Family caregivers' conceptions of trust in home health care providers. Res Gerontol Nurs 2021 Jul-Aug;14(4):200-10. doi: 10.3928/19404921-20210526-01..
Keywords: Elderly, Home Healthcare, Caregiving
Richardson DR, Oakes AH, Crossnohere NL
Prioritizing the worries of AML patients: Quantifying patient experience using best-worst scaling.
Although patients with acute myeloid leukemia (AML) experience significant toxicities and poor outcomes, few studies have quantified patients' experience. In this study, a community-centered approach was used to develop an AML-specific best-worst scaling (BWS) instrument involving 13 items in four domains (psychological, physical, decision-making, treatment delivery) to quantify patient worry. A survey of patients and caregivers was conducted using the instrument. Data were analyzed using conditional logistic regression.
Citation: Richardson DR, Oakes AH, Crossnohere NL . Prioritizing the worries of AML patients: Quantifying patient experience using best-worst scaling. Psychooncology 2021 Jul;30(7):1104-11. doi: 10.1002/pon.5652..
Keywords: Cancer, Patient Experience, Caregiving, Outcomes, Patient-Centered Outcomes Research
Burgdorf JG, Arbaje AI, Stuart EA
Unmet family caregiver training needs associated with acute care utilization during home health care.
This study estimated the proportion of family caregivers assisting Medicare home health patients who have unmet training needs and its’ potential impact on older adults’ risk of acute care utilization. Linked data from the National Health and Aging Trends Study, Outcome and Assessment Information Set (OASIS), Medicare Provider of Services file, and Medicare claims data from 2011 to 2016 were used. Rates of unmet training needs varied from 8.2% of family caregivers assisting with household chores and 16% assisting with self-care tasks. After controlling for older adult and home health provider characteristics, older adults with family caregivers who had unmet training needs were twice as likely to incur acute care utilization during their home health episode.
Citation: Burgdorf JG, Arbaje AI, Stuart EA . Unmet family caregiver training needs associated with acute care utilization during home health care. J Am Geriatr Soc 2021 Jul;69(7):1887-95. doi: 10.1111/jgs.17138..
Keywords: Caregiving, Home Healthcare, Elderly, Healthcare Utilization, Training
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).
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.
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, 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.
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