2025
36-PUB: Developing an Evidence-Based Care Pathway for Transgender Youth with Obesity—Integration of Patient and Caregiver Perspectives
THERIAULT C, SHARER A, DOYLE R, OYOLA-CARTAGENA K, GEDEON S, OLEZESKI C, FINCK C, SANTOS M. 36-PUB: Developing an Evidence-Based Care Pathway for Transgender Youth with Obesity—Integration of Patient and Caregiver Perspectives. Diabetes 2025, 74 DOI: 10.2337/db25-36-pub.Peer-Reviewed Original ResearchEvidence-based care pathwayCare pathwaysTransgender youthHealthcare providersWeight managementExperience of transgender patientsPatient-caregiver dyadsPediatric weight managementReduce diabetes riskWeight management programWeight-based stigmatizationImprove weight managementWeight management behaviorsPediatric obesity ratesTreatment of transgender youthExperiences of genderCaregiver perspectivesIntegrated careGender-affirming therapyPatient goalsObesity ratesInclusive careDiabetes riskType 2 diabetesMedical carePatients' and Caregivers' Perspectives on the Role of Ambulatory Specialty Palliative Care for People With Heart Failure
Lendvai D, Zhan Y, Kavalieratos D, Iannone L, Akgün K, Allen L, Bekelman D, Ersek M, Goldstein N, Luhrs C, Feder S. Patients' and Caregivers' Perspectives on the Role of Ambulatory Specialty Palliative Care for People With Heart Failure. Journal Of Pain And Symptom Management 2025, 70: 89-105. PMID: 40147501, PMCID: PMC12148689, DOI: 10.1016/j.jpainsymman.2025.02.019.Peer-Reviewed Original ResearchConceptsSpecialist palliative carePalliative careCompletion of advance directivesSpecialist palliative care teamsDiscussion of goals of careDepartment of Veterans Affairs (VAVeterans Affairs (VASpecialty palliative careGoals of careHigh-quality careSurrogate decision-makersBarriers to engagementQualitative descriptive studyFamily caregiversCare coordinationCardiology cliniciansIllness conversationsCaregiver perspectivesAdvance directivesDescriptive studyHealthcare systemCaregiversAmbulatory settingCareHeart failure
2024
Integrative Strong Body and Mind Training for Sickle Cell Disease (I-STRONG)-an Interdisciplinary, Multicomponent Treatment Approach for Pediatric Chronic SCD Pain
Sil S, Mooney J, Adkins T, Sinha C, Nunez M, Thomas S, Beasley K, Lang A, Murphy B, Akintobi T, Williams J, Batts K, Kurzhals A, Bakshi N, Kesar T, Myer G, Quinn C, Dampier C, Crosby L, Kashikar-Zuck S. Integrative Strong Body and Mind Training for Sickle Cell Disease (I-STRONG)-an Interdisciplinary, Multicomponent Treatment Approach for Pediatric Chronic SCD Pain. Blood 2024, 144: 291. DOI: 10.1182/blood-2024-209083.Peer-Reviewed Original ResearchChronic SCD painChronic painExercise trainingCognitive-behavioral therapyPhysical therapyPain intensityPain managementPatient Global ImpressionEvidence-based interdisciplinary approachADAPT-ITT modelIntegrative therapiesSemi-structured qualitative interviewsCommunity advisory boardSickle cell diseaseCommunity engagementEvidence-based interventionsSickle cell disease painPediatric sickle cell diseaseFollow-upChronic pain managementImpaired quality of lifeMulticomponent treatment programQuality of lifeCaregiver perspectivesIntervention fidelityCaregivers of children with asthma alarmed by climate change: a cross‐sectional study
Godse S, Shabanova V, Ragavan M, Mitchell M, Chen L, Flom J, Sheares B. Caregivers of children with asthma alarmed by climate change: a cross‐sectional study. Pediatric Pulmonology 2024, 59: 3677-3685. PMID: 39323113, DOI: 10.1002/ppul.27288.Peer-Reviewed Original ResearchCaregivers of childrenCross-sectional studyClimate change-related health risksHealth impacts of climate changeInforming public health policyPublic health policiesReports adverse impactsRespiratory health impactsCaregiver perspectivesCaregiver perceptionsChild's asthmaHealth policyChild healthChild's doctorHealth harmsHealth risksCaregiversWorsening asthma controlAsthma controlAir pollutionAdverse health effectsPulmonology clinicSurvey instrumentUS settingHealth effectsLearning From a National Quality Improvement Collaborative for Brief Resolved Unexplained Events.
Hochreiter D, Sullivan E, DeLaroche A, Jain S, Knochel M, Kim E, Neuman M, Prusakowski M, Braiman M, Colgan J, Payson A, Tieder J. Learning From a National Quality Improvement Collaborative for Brief Resolved Unexplained Events. 2024, 153 PMID: 38229546, DOI: 10.1542/peds.2022-060909.Peer-Reviewed Original ResearchConceptsClinical practice guidelinesClinical practice guideline publicationEmergency departmentQI collaborativeTesting adherenceElectronic medical record integrationCare of emergency departmentQuality improvementMedical record integrationMedical record reviewMulticenter quality improvementCollaboration periodBRUE criteriaAmerican Academy of PediatricsCaregiver perspectivesImprove careAcademy of PediatricsLower-risk infantsRisk classificationRecord integrationClinical pathwayMitigate barriersRecord reviewDocumentation practicesPractice guidelines
2023
“It’s about time they taught us”: a qualitative study evaluating the barriers to finding and screening child contacts under five at risk for TB in Gauteng Province, South Africa from the provider and caregiver perspectives
Munedzimwe F, Chetty-Makkan C, Mukora R, Charalambous S, Turner K, Chihota V. “It’s about time they taught us”: a qualitative study evaluating the barriers to finding and screening child contacts under five at risk for TB in Gauteng Province, South Africa from the provider and caregiver perspectives. BMC Health Services Research 2023, 23: 1415. PMID: 38102646, PMCID: PMC10722712, DOI: 10.1186/s12913-023-10359-0.Peer-Reviewed Original ResearchConceptsTB preventive treatmentTB prevention strategiesIsoniazid preventive therapyTB staffSemi-structured questionnaireTB transmissionFacility staffPrevention strategiesPrimary health clinicsPrevention of tuberculosisEnd TB goalChild contactsYears of ageFacility observationsSemi-structured interview guidePreventive therapyTB preventionTB screeningTB treatmentPreventive servicesPreventive treatmentEkurhuleni DistrictHealth clinicsHigh riskCaregiver perspectivesDifferences and Similarities Between Consumer- and Caregiver- or Family-Informed Peer Roles in Mental Health
Roennfeldt H, Chapman M, Runneboom C, Wang Y, Byrne L. Differences and Similarities Between Consumer- and Caregiver- or Family-Informed Peer Roles in Mental Health. Psychiatric Services 2023, 74: 1037-1044. PMID: 36987707, DOI: 10.1176/appi.ps.20220386.Peer-Reviewed Original ResearchConceptsPeer workersCaregiver perspectivesMental health staffMental health sectorMixed-methods designPeer workforceCaregiving experienceHealth staffPeer staffMental healthService usersCaregiversPeer roleHealth sectorQualitative findingsWork practiceQualitative dataFamily membersStaffAustralian surveyWorkforceAnalyzed dataQuantitative dataParticipantsWorkers
2022
Pharmacological Management of Lewy Body Dementia: A Systematic Review and Meta-analysis
Lane C, Conroy M. Pharmacological Management of Lewy Body Dementia: A Systematic Review and Meta-analysis. 2022, 343-347. DOI: 10.1007/978-3-030-94960-0_60.Peer-Reviewed Original Research
2021
Assessing Patient Preferences for Treatment Options for Pediatric Sickle Cell Disease: A Critical Review of Quantitative and Qualitative Studies
Katoch D, Krishnamurti L. Assessing Patient Preferences for Treatment Options for Pediatric Sickle Cell Disease: A Critical Review of Quantitative and Qualitative Studies. Patient Preference And Adherence 2021, 15: 2221-2229. PMID: 34629865, PMCID: PMC8493010, DOI: 10.2147/ppa.s264918.Peer-Reviewed Original ResearchSickle cell diseasePatient preferencesTreatment preferencesCell diseasePediatric sickle cell diseaseHematopoietic cell transplantPatients' treatment preferencesBurden of careQuality of lifeQualitative studyStandard gamble studyCurative intentRed blood cellsSupportive careSubstantial morbidityCell transplantImpaired qualityTreatment optionsIntravascular hemolysisPatient utilitiesPremature mortalityCaregiver perspectivesTreatment alternativesBlood cellsUtility studies
2020
Patient and Family Caregiver Considerations When Selecting Early Breast Cancer Treatment: Implications for Clinical Pathway Development
Schulman-Green D, Cherlin E, Capasso R, Mougalian SS, Wang S, Gross CP, Bajaj PS, Eakle K, Patel S, Douglas K, Adelson K. Patient and Family Caregiver Considerations When Selecting Early Breast Cancer Treatment: Implications for Clinical Pathway Development. The Patient - Patient-Centered Outcomes Research 2020, 13: 683-697. PMID: 32508006, DOI: 10.1007/s40271-020-00426-7.Peer-Reviewed Original ResearchConceptsFamily caregiversTreatment optionsDecision regretHealth care system issuesEarly breast cancer treatmentCaregiver considerationsCancer treatment patternsInitial definitive treatmentClinical pathway developmentBreast cancer treatmentFamily caregivers' perspectivesConsideration of patientsDecision pathwaysFindings patientsDefinitive treatmentTreatment patternsSpouse/partnerBreast cancerClinical pathwayTreatment decisionsCancer statusPatientsStage ICaregiver perspectivesTreatment plan
2018
Intensive home-based programs for youth with serious emotional disturbances: A comprehensive review of experimental findings
Moffett S, Brotnow L, Patel A, Adnopoz J, Woolston J. Intensive home-based programs for youth with serious emotional disturbances: A comprehensive review of experimental findings. Children And Youth Services Review 2018, 85: 319-325. DOI: 10.1016/j.childyouth.2017.10.004.Peer-Reviewed Original ResearchSerious emotional disturbanceEmotional disturbanceHome-based interventionMechanisms of changeHome-based programBehavioral impairmentsQuasi-experimental studySuch interventionsYouthEmpirical findingsCaregiver perspectivesRelative dearthInstitutional placementInterventionFindingsImpairmentPerspectiveChildrenProgramContinuum of careComprehensive reviewConclusive comparisonPartnersDearth
2016
Patterns of Family Functioning and Diabetes-Specific Conflict in Relation to Glycemic Control and Health-Related Quality of Life Among Youth With Type 1 Diabetes
Rybak TM, Ali JS, Berlin KS, Klages KL, Banks GG, Kamody RC, Ferry RJ, Alemzadeh R, Diaz-Thomas AM. Patterns of Family Functioning and Diabetes-Specific Conflict in Relation to Glycemic Control and Health-Related Quality of Life Among Youth With Type 1 Diabetes. Journal Of Pediatric Psychology 2016, 42: 40-51. PMID: 28173113, DOI: 10.1093/jpepsy/jsw071.Peer-Reviewed Original ResearchPerspectives on Promoting Hospital Primary Vaginal Birth: A Qualitative Study
Kennedy HP, Doig E, Tillman S, Strauss A, Williams B, Pettker C, Illuzzi J. Perspectives on Promoting Hospital Primary Vaginal Birth: A Qualitative Study. Birth 2016, 43: 336-345. PMID: 27500371, DOI: 10.1111/birt.12245.Peer-Reviewed Original ResearchConceptsFirst-time mothersVaginal birthHospital settingPrimary cesarean deliveryCesarean delivery rateLong-term riskCesarean deliveryEarly laborCaregivers' knowledgeWomen's knowledgeCaregiver perspectivesChildbirth preparationSecondary aimNortheastern hospitalsPractice styleBirthLabor managementMothersPowerful mediatorHospitalPrimary aimPotential strategyCaregiversWomenBirth environment
2010
Patient and caregiver perspectives on seizure prediction
Arthurs S, Zaveri HP, Frei MG, Osorio I. Patient and caregiver perspectives on seizure prediction. Epilepsy & Behavior 2010, 19: 474-477. PMID: 20851054, DOI: 10.1016/j.yebeh.2010.08.010.Peer-Reviewed Original ResearchConceptsControl of seizuresSurvey of patientsEpilepsy treatmentCaregiver perspectivesPatient choiceSeizure predictionFourth International Workshop
2004
At the crossroads: Making the transition to hospice
SCHULMAN-GREEN D, McCORKLE R, CURRY L, CHERLIN E, JOHNSON-HURZELER R, BRADLEY E. At the crossroads: Making the transition to hospice. Palliative & Supportive Care 2004, 2: 351-360. PMID: 16594397, DOI: 10.1017/s1478951504040477.Peer-Reviewed Original ResearchConceptsPrimary family caregiversHospice enrollmentTerminal cancerCare trajectoriesFamily caregiversLate hospice enrollmentPatient care trajectoriesContinuum of careTime of deathHealth care systemPatient's family dynamicsIll patientsMedian lengthHospice careCaregiver needsCaregiver acceptancePatientsCaregiver perspectivesCaregivers' perceptionsHospiceDesign of interventionsCare systemCaregiversImpending deathDeath
2000
Development of a Palliative Education Assessment Tool for Medical Student Education
Meekin S, Klein J, Fleischman A, Fins J. Development of a Palliative Education Assessment Tool for Medical Student Education. Academic Medicine 2000, 75: 986-992. PMID: 11031142, DOI: 10.1097/00001888-200010000-00011.Peer-Reviewed Original ResearchConceptsPalliative care educationCare educationEducational assessment toolEnd-of-life carePalliative care contentPalliative care domainsPalliative care assessmentAssessment toolEnd-of-lifeClinical communication skillsMedical school curriculumSelf-assessment toolU.S. medical schoolsCare contentCaregiver perspectivesPalliative medicineCare assessmentFour-year curriculumCare domainEducation reformCurricular mappingMedical schoolsSchool curriculumCurricular objectivesEducational objectives
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