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AHRQ Research Studies Date
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- Behavioral Health (4)
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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 13 of 13 Research Studies DisplayedDesai 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
Garrity BM, Singer SJ, Ward E
Parent perspectives on short-term recovery after spinal fusion surgery in children with neuromuscular scoliosis.
This paper evaluates concerns of parents and families of children who had undergone spinal fusion for neuromuscular scoliosis. Semistructured interviews were conducted with 18 families within 3 months after spinal fusion performed August 2017 to January 2019 at a children’s hospital. The interviews were recorded, transcribed, and coded line-by-line by 2 independent reviewers. Five themes emerged among families when reflecting on the postoperative recovery period: 1) communicating and making shared decisions regarding postoperative care in a patient- and family-centered manner, 2) setting hospital discharge goals and being ready for discharge, 3) planning for transportation from hospital to home, 4) acquiring supports for caregiving at home after discharge, and 5) anticipating a long recovery at home.
AHRQ-funded; HS024453.
Citation: Garrity BM, Singer SJ, Ward E .
Parent perspectives on short-term recovery after spinal fusion surgery in children with neuromuscular scoliosis.
J Patient Exp 2020 Dec;7(6):1369-77. doi: 10.1177/2374373520972570..
Keywords: Children/Adolescents, Surgery, Caregiving, Patient Experience
Mogul DB, Bowring MG, Lau J
Role for social media in pediatric liver disease: caregiver and provider perspectives.
This study examined the role of social media for caregivers of children with liver disease. A survey of caregivers was conducted as well as a survey of healthcare providers to understand the perceived benefits and harms of participation. Among 138 caregivers of children with liver disease, 97.8% agreed social media was a good place to learn and share patient experiences, and 88% agreed it was a good source of general information. Only 3% indicated they would use the information to change care without telling their provider. Among 217 healthcare providers, 55% believed social media may lead caregivers to change care management without telling their healthcare team.
AHRQ-funded; HS023876.
Citation: Mogul DB, Bowring MG, Lau J .
Role for social media in pediatric liver disease: caregiver and provider perspectives.
Pediatr Gastroenterol Hepatol Nutr 2020 Nov;23(6):548-57. doi: 10.5223/pghn.2020.23.6.548..
Keywords: Children/Adolescents, Social Media, Caregiving
Logan GE, Sahrmann JM, Gu H
Parental mental health care after their child's pediatric intensive care hospitalization.
Pediatric intensive care unit (PICU) hospitalization is traumatic for parents, and PTSD, depression, and anxiety have all been found in parents of PICU survivors. This retrospective observational cohort study examined parents of PICU survivors using insurance claims data from 2006 to 2013. Rates of mental health diagnoses, outpatient mental health visits, and prescriptions for antidepressants and anxiolytics were looked at 6 months before and 6 months after their child’s PICU admission. Of the 95,070 parents identified, 9.5% received a new mental health diagnosis in the 6 months after PICU hospitalization with mothers twice as likely to receive a new mental health diagnosis or take new medication than fathers. Parental diagnosis of acute stress disorder or PTSD increased by 87% from the pre-PICU to the post-PICU period.
AHRQ-funded; HS019455.
Citation: Logan GE, Sahrmann JM, Gu H .
Parental mental health care after their child's pediatric intensive care hospitalization.
Pediatr Crit Care Med 2020 Nov;21(11):941-48. doi: 10.1097/pcc.0000000000002559..
Keywords: Children/Adolescents, Intensive Care Unit (ICU), Hospitalization, Caregiving, Behavioral Health, Family Health and History
Oates GR, Harris WT, Gutierrez HH
Tobacco smoke exposure in pediatric cystic fibrosis: a qualitative study of clinician and caregiver perspectives on smoking cessation.
This qualitative study identified barriers and facilitators of smoking cessation in caregivers to children with cystic fibrosis (CF) and outlined potential interventional approaches. Researchers conducted semi-structured interviews with CF familial caregivers who were current or former smokers, and with members of the CF care team, asking about experiences, practices, and prerequisites for a successful program. Findings revealed intrapersonal, interpersonal, and structural barriers to eliminating tobacco smoke exposure in children with CF, outlined opportunities to address these barriers, and made recommendations for a comprehensive tobacco cessation strategy.
AHRQ-funded; HS023009.
Citation: Oates GR, Harris WT, Gutierrez HH .
Tobacco smoke exposure in pediatric cystic fibrosis: a qualitative study of clinician and caregiver perspectives on smoking cessation.
Pediatr Pulmonol 2020 Sep;55(9):2330-40. doi: 10.1002/ppul.24879..
Keywords: Children/Adolescents, Tobacco Use, Tobacco Use: Smoking Cessation, Caregiving, Respiratory Conditions
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
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, 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, Decision Making, Surgery, Caregiving
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, Decision Making, Cultural Competence, Racial and Ethnic Minorities, Clinician-Patient Communication, Communication, Caregiving, Behavioral Health
Sexton JB, Sharek PJ, Thomas EJ
Exposure to Leadership WalkRounds in neonatal intensive care units is associated with a better patient safety culture and less caregiver burnout.
The aims of this study were to evaluate the association between WalkRound (WR) feedback, patient safety culture, and caregiver burnout. It found that more WR feedback was associated with better safety culture results and lower burnout rates in the neonatal intensive care units (NICUs).
AHRQ-funded; HS014246.
Citation: Sexton JB, Sharek PJ, Thomas EJ .
Exposure to Leadership WalkRounds in neonatal intensive care units is associated with a better patient safety culture and less caregiver burnout.
BMJ Qual Saf. 2014 Oct;23(10):814-22. doi: 10.1136/bmjqs-2013-002042..
Keywords: Neonatal Intensive Care Unit (NICU), Patient Safety, Caregiving, Children/Adolescents