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AHRQ Research Studies Date
Topics
- Back Health and Pain (1)
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- Children/Adolescents (5)
- Clinician-Patient Communication (4)
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- Cultural Competence (1)
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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 10 of 10 Research Studies DisplayedJefferson 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
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
Kukulka K, Washington KT, Govindarajan R
Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams.
The purpose of this study was to generate a rich description of the realities of living with amyotrophic lateral sclerosis (ALS), equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Study findings illustrated the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The investigators concluded that the complex biopsychosocial needs experienced by patients and family caregivers suggested numerous opportunities for meaningful palliative care involvement.
AHRQ-funded; HS022140.
Citation: Kukulka K, Washington KT, Govindarajan R .
Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams.
Am J Hosp Palliat Care 2019 Oct;36(10):851-57. doi: 10.1177/1049909119834493..
Keywords: Palliative Care, Patient-Centered Outcomes Research, Neurological Disorders, Patient-Centered Healthcare, Patient and Family Engagement, Caregiving
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
Asan O, Scanlan MC, Crotty B
Parental perceptions of displayed patient data in a PICU: an example of unintentional empowerment.
The objective of this study was to explore the perceptions of parents of pediatric patients in a PICU regarding real-time open electronic health record data displayed in patient rooms. The investigators suggest that a new health information technology system providing continuous access to open electronic health record data may be an effective way to empower and engage parents in the PICU, but also note potential drawbacks.
AHRQ-funded; HS023626.
Citation: Asan O, Scanlan MC, Crotty B .
Parental perceptions of displayed patient data in a PICU: an example of unintentional empowerment.
Pediatr Crit Care Med 2019 May;20(5):435-41. doi: 10.1097/pcc.0000000000001895..
Keywords: Caregiving, Children/Adolescents, Communication, Electronic Health Records (EHRs), Health Information Technology (HIT), Hospitals, Intensive Care Unit (ICU), Patient and Family Engagement
Armstrong MJ, Rastgardani T, Gagliardi AR
Barriers and facilitators of communication about off periods in Parkinson's disease: qualitative analysis of patient, carepartner, and physician Interviews.
This article discusses barriers and facilitators of communication with Parkinson’s disease patients, care partners, and their physicians specifically during off periods. Twenty persons with Parkinson’s and their care partners, and 20 physicians participated in interviews using a semi-structured questionnaire. Communication barrier levels were identified as patient-level, caregiver-level, and physician-level. For patients cognitive impairment and reluctance to discuss symptoms was the largest barrier. Caregiver absence was also a barrier. For physicians barriers were distraction by technology and lack of appreciation of off period burdens. Various tools such as home diaries, questionnaires and mobile phone videos can be used to aid communication regarding off periods. Patients and their caregivers stressed the need for more formal educational materials and improved educational tools.
AHRQ-funded; HS024159.
Citation: Armstrong MJ, Rastgardani T, Gagliardi AR .
Barriers and facilitators of communication about off periods in Parkinson's disease: qualitative analysis of patient, carepartner, and physician Interviews.
PLoS One 2019 Apr 18;14(4):e0215384. doi: 10.1371/journal.pone.0215384..
Keywords: Communication, Clinician-Patient Communication, Neurological Disorders, Caregiving, Education: Patient and Caregiver, Health Literacy, Patient and Family Engagement
Brand McCarthy SR, Kang TI, Mack JW
Inclusion of children in the initial conversation about their cancer diagnosis: impact on parent experiences of the communication process.
The current study examined the frequency and impact of child presence during a serious medical conversation on the parent's communication experience in pediatric oncology. The investigators concluded that the parent's communication experience is not diminished by the choice to include the child. They suggest that given the bioethical imperative to include children in conversations about serious illness whenever possible, this concern should not be used to exclude children, but rather to give parents additional time of their own when needed to fully process decisions.
AHRQ-funded; HS000063.
Citation: Brand McCarthy SR, Kang TI, Mack JW .
Inclusion of children in the initial conversation about their cancer diagnosis: impact on parent experiences of the communication process.
Support Care Cancer 2019 Apr;27(4):1319-24. doi: 10.1007/s00520-019-4653-3..
Keywords: Cancer, Caregiving, Children/Adolescents, Clinician-Patient Communication, 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
McCarron HR, Finlay JM, Sims T
Stakeholder engagement to enhance interventions for family caregivers of people with dementia: a case study of care to plan.
This study discusses a case study that uses a community advisory board (CAB) to help interventions for family caregivers of people with dementia. The intervention used is an online dementia caregiver resource called Care to Plan. Transcripts of seven CAB meetings over a 3-year period were reviewed. They looked at: how meetings were conducted and issues that arose; and Care to Plan improvements, how CAB members provided key stakeholder perspectives that resulted in changes in language, functionality, substance and dissemination.
AHRQ-funded; HS022445.
Citation: McCarron HR, Finlay JM, Sims T .
Stakeholder engagement to enhance interventions for family caregivers of people with dementia: a case study of care to plan.
J Gerontol Soc Work 2019 Jan;62(1):29-47. doi: 10.1080/01634372.2018.1505797..
Keywords: Caregiving, Dementia, Neurological Disorders, Patient and Family Engagement