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Full-Text Articles in Pediatrics

Knowledge Of Parents About Thalassemia In Tabuk City: A Cross-Sectional Study, Sawsan Mohammed Alblewi, Amirah M. Alatawi, Ehab Mahmoud Hanafy, Faisal Mayudh Althobaiti, Abdulelah Hamad Al-Balawi, Faisal Mohammed Alamrani, Yazeed Mahmoud Ajwah, Omar Muslih Albalawi, Mohammed Majed Alquayr, Sultan Ibrahim Alhamdi Aug 2026

Knowledge Of Parents About Thalassemia In Tabuk City: A Cross-Sectional Study, Sawsan Mohammed Alblewi, Amirah M. Alatawi, Ehab Mahmoud Hanafy, Faisal Mayudh Althobaiti, Abdulelah Hamad Al-Balawi, Faisal Mohammed Alamrani, Yazeed Mahmoud Ajwah, Omar Muslih Albalawi, Mohammed Majed Alquayr, Sultan Ibrahim Alhamdi

Makara Journal of Health Research

Background: Thalassemia is a common inherited blood disorder and remains a significant public health concern in Saudi Arabia. Parental knowledge is essential for effective prevention, screening, and early intervention. This study aimed to assess the knowledge of thalassemia among parents in Tabuk City, Saudi Arabia, and identify factors associated with knowledge levels.

Methods: A cross-sectional study was conducted among 392 parents residing in Tabuk City between March and May 2025. Data were collected using a validated Arabic questionnaire distributed online. Knowledge was assessed using 21 items covering general thalassemia knowledge, thalassemia major, carrier status, and prevention. Knowledge levels …


Parent Perspectives On Neonatal Research Without Prior Consent: A Mixed-Methods Interview Study., Stephanie A. Kraft, Abigail Brickler, Abril Beretta, Rishabh Jain, Andrea Kelsh, Kaashif A. Ahmad, Justin T. Clapp, Neal W. Dickert, Rebecca A. Dorner, Katherine F. Guttmann, Anup C. Katheria, Stephanie Kukora, Benjamin A. Mooso, Elliott Mark Weiss, Fam-Connect Collaborative Jun 2026

Parent Perspectives On Neonatal Research Without Prior Consent: A Mixed-Methods Interview Study., Stephanie A. Kraft, Abigail Brickler, Abril Beretta, Rishabh Jain, Andrea Kelsh, Kaashif A. Ahmad, Justin T. Clapp, Neal W. Dickert, Rebecca A. Dorner, Katherine F. Guttmann, Anup C. Katheria, Stephanie Kukora, Benjamin A. Mooso, Elliott Mark Weiss, Fam-Connect Collaborative

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Recruitment for clinical research in the neonatal intensive care unit (NICU) is difficult, which may lead to low enrollment rates, systematically skewed samples, and nongeneralizable results. Research without prior consent (RWPC), defined as obtaining consent only after infants have been randomized to a treatment arm, may improve enrollment but raises ethical challenges. There is a need to better understand how parents with lived experience of having an infant in the NICU consider RWPC’s impact on critical ethical values related to informed consent, including decision-making, respect, and trust. This mixed-methods study aimed to describe parental perceptions of the acceptability and …


Parental Psychosocial Outcomes After A Positive Newborn Screen For A Lysosomal Storage Disorder., Courtney D. Berrios, Randi N. Gadea, Meghan Strenk, Twisha Nadella, Jennifer L. Gannon, Janelle R. Noel-Macdonnell Phd Nov 2025

Parental Psychosocial Outcomes After A Positive Newborn Screen For A Lysosomal Storage Disorder., Courtney D. Berrios, Randi N. Gadea, Meghan Strenk, Twisha Nadella, Jennifer L. Gannon, Janelle R. Noel-Macdonnell Phd

Manuscripts, Articles, Book Chapters and Other Papers

PURPOSE: This study explores the psychosocial impact of a positive newborn screen (NBS) result for four lysosomal storage disorders (LSDs) (Fabry disease, Krabbe disease, Mucopolysaccharidosis Type I, Pompe disease) across confirmatory results.

METHODS: Parents whose child who had a positive NBS for one of the included LSDs were recruited for a retrospective cohort (n = 80) or prospective, longitudinal cohorts (n = 50). Surveys assessed uncertainty, anxiety, intrusive or avoidant thoughts, and perceived vulnerability of their child's health. In-depth interviews explored the NBS experience and psychosocial response.

RESULTS: Participants experienced uncertainty and anxiety during confirmatory testing that improved as parents …


Parent Needs, Recommendations, And Systemic Challenges Affecting Pediatric Hypertension Detection, Abbas H. Zaidi, Erica D. Sood, Sarah De Ferranti, Samuel Gidding, Varsha Zadokar, Jonathan M. Miller, Anne E Kazak Sep 2025

Parent Needs, Recommendations, And Systemic Challenges Affecting Pediatric Hypertension Detection, Abbas H. Zaidi, Erica D. Sood, Sarah De Ferranti, Samuel Gidding, Varsha Zadokar, Jonathan M. Miller, Anne E Kazak

Department of Pediatrics Faculty Papers

Pediatric hypertension (HTN) affects 3%-5% of children in the United States, yet only 25% are diagnosed and 60% lack recommended follow-up care. Skepticism about elevated blood pressure (BP) readings and reluctance to use antihypertensive medications by parents and clinicians highlight the need for stakeholder-informed strategies to address these challenges. This study examined parents' perceived needs, their recommended strategies to improve HTN detection, and contextual health system challenges. Parents and clinicians from 10 pediatric primary care clinics participated in semi-structured qualitative interviews. Only parents of children with documented stage 2 BP readings and a HTN diagnosis, but with gaps in care …


"My Child Needs A Chance And A Choice To Talk About Their Pain": Parents' Experiences And Perspectives Of Pain Communication In Paediatric Rheumatology., Rebecca R. Lee, Jade Edwards, Danielle C. Mountain, Janet E. Mcdonagh, Mark Connelly, Tonya Palermo, Sarah Peters Sep 2025

"My Child Needs A Chance And A Choice To Talk About Their Pain": Parents' Experiences And Perspectives Of Pain Communication In Paediatric Rheumatology., Rebecca R. Lee, Jade Edwards, Danielle C. Mountain, Janet E. Mcdonagh, Mark Connelly, Tonya Palermo, Sarah Peters

Manuscripts, Articles, Book Chapters and Other Papers

OBJECTIVE: To investigate parents' experiences and perspectives about pain communication with healthcare professionals in paediatric rheumatology.

METHODS: Data were collected using semi-structured telephone interviews with parents of children/adolescents recruited from three UK tertiary paediatric rheumatology centres. A framework analysis was used to characterise parents' experiences and perspectives.

RESULTS: Eighteen parents participated. Their children had a median age of 13 years (SD= 3.16 years, Range= 6-16 years, 55 % male), with diagnoses of chronic primary pain (e.g. Ehlers Danlos syndrome/Hypermobility) and chronic secondary pain (e.g. Juvenile Idiopathic Arthritis). Data were organised into four themes: 1) Parents' active role in pain communication, …


Diabetes-Related Distress Over Time And Its Associations With Glucose Levels In School-Aged Children., Susana R. Patton, Nicole Kahhan, Amy Milkes, Ryan J. Mcdonough, Matthew Benson, Mark A. Clements, Jessica S. Pierce Jun 2025

Diabetes-Related Distress Over Time And Its Associations With Glucose Levels In School-Aged Children., Susana R. Patton, Nicole Kahhan, Amy Milkes, Ryan J. Mcdonough, Matthew Benson, Mark A. Clements, Jessica S. Pierce

Manuscripts, Articles, Book Chapters and Other Papers

INTRODUCTION: In a cohort of families of school-age children (8-12.99 years old) with type 1 diabetes, we examined the stability of parent and child diabetes-related distress (DRD) over 6 months and the associations between parent and child DRD and child glycated hemoglobin (HbA1c) over time.

RESEARCH DESIGN AND METHODS: We recruited families from two large pediatric hospital systems in the USA and used validated measures of parent (Parent Problem Areas in Diabetes-Child, PPAID-C) and child (Problem Areas in Diabetes-Child, PAID-C) DRD and children's HbA1c. We collected data at baseline and 6 months. We calculated minimal clinically important differences in PPAID-C …


Parent Feedback On The Reducing Emotional Distress For Childhood Hypoglycemia In Parents (Redchip) Intervention: A Qualitative Analysis., Nicole A. Kahhan, Maryjane S. Campbell, Mark A. Clements, Kimberly A. Driscoll, Amy I. Milkes, Holly K. O'Donnell, Susana R. Patton Mar 2025

Parent Feedback On The Reducing Emotional Distress For Childhood Hypoglycemia In Parents (Redchip) Intervention: A Qualitative Analysis., Nicole A. Kahhan, Maryjane S. Campbell, Mark A. Clements, Kimberly A. Driscoll, Amy I. Milkes, Holly K. O'Donnell, Susana R. Patton

Manuscripts, Articles, Book Chapters and Other Papers

OBJECTIVES: Severe hypoglycemia is more common among young children with type 1 diabetes mellitus (T1DM) than older youth, and parents report significant hypoglycemia fear (HF). Parents experiencing HF describe constant and extreme worry about the occurrence of hypoglycemia and may engage in potentially risky behaviors to avoid hypoglycemia. Our team developed and tested a behavioral intervention, Reducing Emotional Distress for Childhood Hypoglycemia in Parents (REDCHiP), to decrease HF in parents of young children with T1DM. Here, we qualitatively analyzed parent feedback to refine and optimize future intervention iterations.

METHODS: The randomized pilot study included parents (n = 73) of …


Experiences Among Parents Caring For Children With Juvenile Idiopathic Arthritis At A Tertiary Referral Hospital In Kenya, Hassan Silim, Susan Wamithi, Roselyter Riang’A, Angela Migowa Mar 2025

Experiences Among Parents Caring For Children With Juvenile Idiopathic Arthritis At A Tertiary Referral Hospital In Kenya, Hassan Silim, Susan Wamithi, Roselyter Riang’A, Angela Migowa

Paediatrics and Child Health, East Africa

Background: Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in childhood. Despite the availability of effective treatment strategies such as disease-modifying antirheumatic drugs (DMARDs), JIA is reported to have a negative impact on the quality of life of the patients and their caregivers. Ascertaining the perceptions of the parents will help facilitate more effective management strategies and improve outcomes for these patients. This study aimed to ascertain parental experiences and perceptions of caring for children with juvenile idiopathic arthritis (JIA).

Methods: This was a single-center facility-based qualitative study. An in-depth interview guide was used to collect …


Mhealth App To Promote Healthy Lifestyles For Diverse Families Living In Rural Areas: Usability Study, Alejandra Perez Ramirez, Adrian Ortega, Natalie Stephenson, Angel Muñoz Osorio, Anne E Kazak, Thao-Ly Phan Feb 2025

Mhealth App To Promote Healthy Lifestyles For Diverse Families Living In Rural Areas: Usability Study, Alejandra Perez Ramirez, Adrian Ortega, Natalie Stephenson, Angel Muñoz Osorio, Anne E Kazak, Thao-Ly Phan

Department of Pediatrics Faculty Papers

BACKGROUND: Mobile Integrated Care for Childhood Obesity is a multicomponent intervention for caregivers of young children with obesity from rural communities that was developed in collaboration with community, parent, and health care partners. It includes community programming to promote healthy lifestyles and address social needs and health care visits with an interdisciplinary team. A digital mobile health platform-the Healthy Lifestyle (Nemours Children's Health) dashboard-was designed as a self-management tool for caregivers to use as part of Mobile Integrated Care for Childhood Obesity.

OBJECTIVE: This study aimed to improve the usability of the English and Spanish language versions of the Healthy …


Attributes Of Pediatric Music Therapists: A Qualitative Analysis Of Parent Descriptions., Elizabeth Harman, Kristin Stegenga, Sheri L. Robb Jan 2025

Attributes Of Pediatric Music Therapists: A Qualitative Analysis Of Parent Descriptions., Elizabeth Harman, Kristin Stegenga, Sheri L. Robb

Manuscripts, Articles, Book Chapters and Other Papers

Therapist attributes are known to contribute to positive therapeutic outcomes and are important to effective training and clinical practice. Although well researched in psychology and play therapy, few studies have directly explored music therapist attributes. To explore and understand these descriptions, we conducted a secondary analysis of parent interview data from a multisite trial investigating a music therapist-delivered intervention for young children with cancer and their parents. We used qualitative descriptive analysis to identify music therapists' attributes as described by parents who participated in the intervention. Our inductive analysis of 28 interviews revealed 135 descriptors of music therapists. We discovered …


Patient And Parent Knowledge, Understanding, And Concerns After A New Diagnosis Of Ehlers Danlos Syndrome., Jordan T. Jones, Lora L. Black, William R. Black Dec 2024

Patient And Parent Knowledge, Understanding, And Concerns After A New Diagnosis Of Ehlers Danlos Syndrome., Jordan T. Jones, Lora L. Black, William R. Black

Manuscripts, Articles, Book Chapters and Other Papers

INTRODUCTION: After diagnosis of Ehlers Danlos Syndrome (EDS), it is unclear what information patients and parents need and understand about EDS. The objective of this study is to characterize patient and parent knowledge and concerns about EDS after a diagnosis of EDS is made to determine patient and parent concerns and identify barriers that cause discomfort with the diagnosis.6 METHODS: A convenience sample of patient and parent dyads were recruited after new diagnosis of EDS. Patients and parents completed questionnaires that assessed knowledge, comfort, and barriers of EDS before and after diagnosis, EDS education materials accessed, and additional clinical needs …


Educating Parents To Reduce Negative Screen Time To Promote Children’S Play, Anna Groden, Cassandra Nelson Dec 2024

Educating Parents To Reduce Negative Screen Time To Promote Children’S Play, Anna Groden, Cassandra Nelson

Fall 2024 OTD Capstone Symposium

This program will consist of educating caregivers and educators on the ever growing topic of screen time and how to handle it in the current digital world. As screen time and device use continues to grow, parents need the help of an occupational therapist to help promote a healthy use of screen time and to incorporate it into play. Providing caregivers and educators with evidence-based information and interventions is imperative to helping parents navigate proper technology use. An occupational therapist will have the unique ability to help promote balanced screen time use and allowing for healthy play.


Influenza Knowledge And Barriers To Vaccination In Immunosuppressed Patients In The Pediatric Rheumatology Clinic., Julia G. Harris, Leslie Favier, Jordan T. Jones, Maria Ibarra, Michael J. Holland, Emily Fox, Kelly Jensen, Ashley K. Sherman, Ashley M. Cooper Dec 2024

Influenza Knowledge And Barriers To Vaccination In Immunosuppressed Patients In The Pediatric Rheumatology Clinic., Julia G. Harris, Leslie Favier, Jordan T. Jones, Maria Ibarra, Michael J. Holland, Emily Fox, Kelly Jensen, Ashley K. Sherman, Ashley M. Cooper

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Most patients with a pediatric rheumatic disease are at increased risk of influenza due to immunosuppressive medication use. Despite initial quality improvement efforts, our influenza vaccination rate plateaued at 72%, which prompted a survey of patients and families to assess provider vaccine recommendations, influenza knowledge, and barriers to influenza vaccination.

METHODS: Patients on immunosuppressive medication or their parent were eligible to complete a survey between July 2019 and January 2020. Survey questions assessed demographics, rheumatology diagnosis, immunosuppressive medication(s), influenza vaccination recommendation, patient/parent influenza knowledge, and barriers to influenza vaccination. Influenza vaccination rates for immunosuppressed patients were acquired each influenza …


Parent And Primary Care Clinician Perceptions About Pediatric Hypertension, Abbas H. Zaidi, Erica Sood, Sarah De Ferranti, Samuel Gidding, Varsha Zadokar, Jonathan Miller, Anne Kazak Dec 2024

Parent And Primary Care Clinician Perceptions About Pediatric Hypertension, Abbas H. Zaidi, Erica Sood, Sarah De Ferranti, Samuel Gidding, Varsha Zadokar, Jonathan Miller, Anne Kazak

Department of Pediatrics Faculty Papers

IMPORTANCE: Despite published guidelines and a prevalence of pediatric hypertension of approximately 3%, less than 25% of affected children are identified, with 60% not receiving any intervention despite detection. Understanding the knowledge and perceptions of parents or caregivers and health care teams is crucial to identify factors that may contribute to these unacceptably low detection rates.

OBJECTIVE: To examine the knowledge and perceptions of parents and health care teams regarding pediatric hypertension to identify common themes contributing to low hypertension detection.

DESIGN, SETTING, AND PARTICIPANTS: This qualitative study, interviewed parents of children diagnosed with hypertension who did not follow up …


Benefits Of Multisensory Rooms In Schools To Control Behaviors In Children With Disabilities, Kye Smith, Cassandra Nelson Dec 2024

Benefits Of Multisensory Rooms In Schools To Control Behaviors In Children With Disabilities, Kye Smith, Cassandra Nelson

Fall 2024 OTD Capstone Symposium

This project explores the benefits of implementing multisensory rooms in schools to manage challenging behaviors in children with disabilities. Conducted at the Barack and Michelle Obama Ninth Grade Center in Lancaster, TX, the program involved participants aged 13-15 diagnosed with disabilities. A comprehensive needs assessment identified gaps in behavior management and overstimulation challenges. The program was designed using evidence-based strategies, including the Person-Environment-Occupation-Performance (PEOP) model, and incorporated techniques such as the Take Five Breathing Strategy, deep pressure input, chair yoga, and meditation.

Through pre- and post-surveys with students, parents, and teachers, the study evaluated the program's impact on functional independence …


Parent-Led Cognitive Behavioral Teletherapy For Anxiety In Autistic Youth: A Randomized Trial Comparing Two Levels Of Therapist Support, Andrew G Guzick, Sophie C Schneider, Minjee Kook, Julia Rose Iacono, Saira A Weinzimmer, Troy Quast, Sean M Olsen, Killian Rainey Hughes, Emily Jellinek-Russo, Amanda Perozo Garcia, Abigail Candelari, Leandra N Berry, Robin P Goin-Kochel, Wayne K Goodman, Eric A Storch May 2024

Parent-Led Cognitive Behavioral Teletherapy For Anxiety In Autistic Youth: A Randomized Trial Comparing Two Levels Of Therapist Support, Andrew G Guzick, Sophie C Schneider, Minjee Kook, Julia Rose Iacono, Saira A Weinzimmer, Troy Quast, Sean M Olsen, Killian Rainey Hughes, Emily Jellinek-Russo, Amanda Perozo Garcia, Abigail Candelari, Leandra N Berry, Robin P Goin-Kochel, Wayne K Goodman, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Parent-led cognitive behavioral therapy (CBT) is an efficient, promising form of therapy that may be well suited for autistic youth with anxiety disorders, though to date it has been minimally tested. In this study, 87 autistic youth (7 to 13 years old) with anxiety disorders and their parents were randomized to two forms of parent-led CBT in which parents led their child through a guided CBT workbook across 12 weeks: one with low therapist contact (four 30-minute telehealth calls), and one with standard therapist contact (ten 60-minute telehealth calls). Anxiety, functional impairment, and autism features significantly declined across therapy, without …


Family Accommodation In Children And Adolescents With Misophonia, Eric A Storch, Andrew G Guzick, Johann D'Souza, Jane Clinger, Daphne Ayton, Minjee Kook, Conor Rork, Eleanor E Smith, Isabel A Draper, Nasim Khalfe, Catherine E Rast, Nicholas Murphy, Marijn Lijfijjt, Wayne K Goodman, Matti Cervin May 2024

Family Accommodation In Children And Adolescents With Misophonia, Eric A Storch, Andrew G Guzick, Johann D'Souza, Jane Clinger, Daphne Ayton, Minjee Kook, Conor Rork, Eleanor E Smith, Isabel A Draper, Nasim Khalfe, Catherine E Rast, Nicholas Murphy, Marijn Lijfijjt, Wayne K Goodman, Matti Cervin

Center for Medical Ethics and Health Policy Staff Publications

Family accommodation (e.g., reassurance, modifying routines, assisting avoidance) has not been explored among youth with misophonia but may have important clinical and intervention implications. We examined family accommodation in 102 children and adolescents with interview-confirmed misophonia and compared its frequency and content to family accommodation in 95 children and adolescents with anxiety disorders. Findings showed that family accommodation was ubiquitous in pediatric misophonia and may be even more frequent than in youth with anxiety disorders. Assisting the child, participating in misophonia-related behaviors, and modifying family routines were endorsed by more than 70% of parents of children with misophonia. Further, compared …


Occupational Impact Of Caregivers In Pediatric Palliative Care, Lezlye Ramos, Karen Park, Jazminne O. Arteaga Apr 2024

Occupational Impact Of Caregivers In Pediatric Palliative Care, Lezlye Ramos, Karen Park, Jazminne O. Arteaga

Spring 2024 Virtual OTD Capstone Symposium

The purpose of this study is to understand the occupational impact for caregivers who had a child with a life-limiting or life-threatening condition who had received pediatric palliative care. A lack of understanding of occupational therapy’s role in end-of-life care ultimately underutilizes and under-prepares occupational therapists to work in this practice area. Becoming a medical family caregiver, neglecting personal needs and desires becomes a norm having a in-direct effect on physical and psychological health and well-being. Findings from this study suggest that it is reasonable to infer that occupational participation among caregivers is influenced by finding time for self and …


Promoting Parental Competence When Transitioning From The Nicu To Home: A Coaching Intervention, Vanessa Chavez, Angela Labrie Blackwell Apr 2024

Promoting Parental Competence When Transitioning From The Nicu To Home: A Coaching Intervention, Vanessa Chavez, Angela Labrie Blackwell

Spring 2024 Virtual OTD Capstone Symposium

This handbook aims to improve the support system for families in the Neonatal Intensive Care Unit (NICU) by developing a coaching intervention that empowers parents, improves their confidence, and provides necessary home care skills.


Primary Care Physician Trust: The Importance Of Early Medical Intervention For African American Children With Asthma, Harrish Ganesh Jan 2024

Primary Care Physician Trust: The Importance Of Early Medical Intervention For African American Children With Asthma, Harrish Ganesh

AUCTUS: The Journal of Undergraduate Research and Creative Scholarship

Asthma is a prevalent condition characterized by an individual’s airway becoming inflamed, constricted, and leads to the formation of mucus and difficulty breathing. Nearly 27 million individuals are currently diagnosed with Asthma in the United States, and African Americans are 40% more likely to be diagnosed with asthma than Caucasians. This literature review analyzed multifaceted barriers that restrict African American asthmatic children from gaining consistent asthma treatment. Some of these barriers range from historical racial discrimination that leads to parental mistrust to financial and educational barriers that result in inconsistent pediatric care for asthmatic children. The combination of the above …


Pediatric Dentists’ Considerations Concerning Obesity-Related Education For Parents Of Young Children: Who Should Educate About What, How And When?, Arianne Swanson Dds, Ms, James R. Boynton Dds, Ms, Larry B. Salzmann Dds, Yu-Ju Yang Dds, Marita R. Inglehart Dipl. Psych., Dr. Phil., Dr. Phil. Habil Jan 2024

Pediatric Dentists’ Considerations Concerning Obesity-Related Education For Parents Of Young Children: Who Should Educate About What, How And When?, Arianne Swanson Dds, Ms, James R. Boynton Dds, Ms, Larry B. Salzmann Dds, Yu-Ju Yang Dds, Marita R. Inglehart Dipl. Psych., Dr. Phil., Dr. Phil. Habil

The Journal of the Michigan Dental Association

This study aimed to explore pediatric dentists' perspectives on obesity-related interventions for parents of young children. A web-based survey was administered to 210 American Academy of Pediatric Dentistry members. Findings revealed that respondents considered it important for various healthcare professionals, especially pediatricians and nurse practitioners, to engage in obesity-related parent education. Strong consensus existed on educating parents about the link between early childhood caries and diet, soft drink and fruit juice consumption, and healthy snacking. The study also found positive attitudes correlated with increased engagement in objective weight determination, data collection, and diet/nutrition counseling.


Mediators And Moderators Of Active Music Engagement To Reduce Traumatic Stress Symptoms And Improve Well-Being In Parents Of Young Children With Cancer., Sheri L. Robb, Kristin Stegenga, Susan M. Perkins, Timothy E. Stump, Karen M. Moody, Amanda K. Henley, Jessica Maclean, Seethal A. Jacob, David Delgado, Paul R. Haut Dec 2023

Mediators And Moderators Of Active Music Engagement To Reduce Traumatic Stress Symptoms And Improve Well-Being In Parents Of Young Children With Cancer., Sheri L. Robb, Kristin Stegenga, Susan M. Perkins, Timothy E. Stump, Karen M. Moody, Amanda K. Henley, Jessica Maclean, Seethal A. Jacob, David Delgado, Paul R. Haut

Manuscripts, Articles, Book Chapters and Other Papers

OBJECTIVE: This trial examined the effects of proximal/distal mediators and moderators of an Active Music Engagement (AME) intervention on young child/parent distress, quality of life, and family function outcomes.

METHODS: Child/parent dyads (n = 125) were randomized to AME or Audio-storybooks attention control condition. Each group received 3 sessions with a credentialed music therapist for 3 consecutive days with data collection at baseline, post-intervention (T2), and 30-days later (T3). Potential proximal mediators included within session child and parent engagement. Potential distal mediators included changes in perceived family normalcy, parent self-efficacy, and independent use of play materials. Potential moderators included parent/child …


Parental Diabetes Distress Is A Stronger Predictor Of Child Hba1c Than Diabetes Device Use In School-Age Children With Type 1 Diabetes., Susana R. Patton, Nicole Kahhan, Jessica S. Pierce, Matthew Benson, Larry A. Fox, Mark A. Clements Sep 2023

Parental Diabetes Distress Is A Stronger Predictor Of Child Hba1c Than Diabetes Device Use In School-Age Children With Type 1 Diabetes., Susana R. Patton, Nicole Kahhan, Jessica S. Pierce, Matthew Benson, Larry A. Fox, Mark A. Clements

Manuscripts, Articles, Book Chapters and Other Papers

INTRODUCTION: Diabetes distress (DD) describes the unrelenting emotional and behavioral challenges of living with, and caring for someone living with, type 1 diabetes (T1D). We investigated associations between parent-reported and child-reported DD, T1D device use, and child glycated hemoglobin (HbA1c) in 157 families of school-age children.

RESEARCH DESIGN AND METHODS: Parents completed the Parent Problem Areas in Diabetes-Child (PPAID-C) and children completed the Problem Areas in Diabetes-Child (PAID-C) to assess for DD levels. Parents also completed a demographic form where they reported current insulin pump or continuous glucose monitor (CGM) use (ie, user/non-user). We measured child HbA1c using a valid …


Parent-Reported Clinical Utility Of Pediatric Genomic Sequencing, Hadley Stevens Smith, Bart S Ferket, Bruce D Gelb, Lucia Hindorff, Kathleen D Ferar, Mary E Norton, Nuriye Sahin-Hodoglugil, Anne Slavotinek, Kristen Hasmiller Lich, Jonathan S Berg, Heidi V Russell Aug 2023

Parent-Reported Clinical Utility Of Pediatric Genomic Sequencing, Hadley Stevens Smith, Bart S Ferket, Bruce D Gelb, Lucia Hindorff, Kathleen D Ferar, Mary E Norton, Nuriye Sahin-Hodoglugil, Anne Slavotinek, Kristen Hasmiller Lich, Jonathan S Berg, Heidi V Russell

Faculty, Staff and Student Publications

BACKGROUND AND OBJECTIVES: Genomic sequencing (GS) is increasingly used for diagnostic evaluation, yet follow-up care is not well understood. We assessed clinicians' recommendations after GS, parent-reported follow-up, and actions parents initiated in response to learning their child's GS results.

METHODS: We surveyed parents of children who received GS through the Clinical Sequencing Evidence Generating Research consortium ∼5 to 7 months after return of results. We compared the proportion of parents who reported discussing their child's result with a clinician, clinicians' recommendations, and parents' follow-up actions by GS result type using χ2 tests.

RESULTS: A total of 1188 respondents completed survey …


Rationale And Design Of Integrating A Parents First Obesity Intervention With A Pediatric Weight Management Intervention For Rural Families - Evaluating The Ripple Effect., Ann M. Davis, Christie A. Befort, Brittany D. Lancaster, Chris Tuck, Barbara J. Polivka, Jordan A. Carlson, Kandace Fleming, Rebecca Swinburne Romine, Kelsey Dean, Megan Murray May 2023

Rationale And Design Of Integrating A Parents First Obesity Intervention With A Pediatric Weight Management Intervention For Rural Families - Evaluating The Ripple Effect., Ann M. Davis, Christie A. Befort, Brittany D. Lancaster, Chris Tuck, Barbara J. Polivka, Jordan A. Carlson, Kandace Fleming, Rebecca Swinburne Romine, Kelsey Dean, Megan Murray

Manuscripts, Articles, Book Chapters and Other Papers

Rural families are disproportionately affected by obesity. Obesity often runs in families and is impacted by hereditary components, the shared home environment, and parent modeling/child observational learning. Moreover, parent changes in weight predict child changes in weight. Thus, targeting the family unit has the potential to enhance outcomes for adults and children simultaneously. Additionally, engaging rural nurses in medical clinics and schools may be important in determining whether rural telehealth programs are successfully implemented and sustained. This paper describes the rationale and design of a randomized control trial (RCT) evaluating the effectiveness of an integrated adult- and child-focused obesity treatment …


Sleep Disturbances And Children: An Occupation-Based Program For Parents And Caregivers Of Children With Spastic Cerebral Palsy, Katelyn Godoy, Pamela Kasyan-Howe, Kristin Domville, Marcia Hamilton Apr 2023

Sleep Disturbances And Children: An Occupation-Based Program For Parents And Caregivers Of Children With Spastic Cerebral Palsy, Katelyn Godoy, Pamela Kasyan-Howe, Kristin Domville, Marcia Hamilton

Spring 2023 Virtual OTD Capstone Symposium

Parents of children with spastic cerebral palsy have barriers to improve their child's quality of life and well-being due to a lack of knowledge regarding the benefits of sleep and rest, as well as the potential causes of sleep disturbances and home-based solutions. The problem is that there is a lack of occupation-based programs for parents that address sleep regulation to improve sleep participation for children with spastic cerebral palsy, which results in difficulties with sleep initiation and maintenance of sleep (Hulst et al. 2020, Löwing et al., 2020, Petersen et al. 2020). The purpose of this program development type …


Protocol And Biomarker Strategy For A Multi-Site Randomized Controlled Trial Examining Biological Mechanisms And Dosing Of Active Music Engagement In Children With Acute Lymphoblastic Leukemia And Lymphoma And Parents., Sheri L. Robb, Kristen A. Russ, Steven J. Holochwost, Kristin Stegenga, Susan M. Perkins, Seethal A. Jacob, Amanda K. Henley, Jessica A. Maclean Mar 2023

Protocol And Biomarker Strategy For A Multi-Site Randomized Controlled Trial Examining Biological Mechanisms And Dosing Of Active Music Engagement In Children With Acute Lymphoblastic Leukemia And Lymphoma And Parents., Sheri L. Robb, Kristen A. Russ, Steven J. Holochwost, Kristin Stegenga, Susan M. Perkins, Seethal A. Jacob, Amanda K. Henley, Jessica A. Maclean

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Music therapy is a standard palliative care service in many pediatric and adult hospitals; however, most research has focused on the use of music to improve psychosocial dimensions of health, without considering biological dimensions. This study builds on prior work examining psychosocial mechanisms of action underlying an Active Music Engagement (AME) intervention, designed to help manage emotional distress and improve positive health outcomes in young children with cancer and parents (caregivers), by examining its effects on biomarkers of stress and immune function.

METHODS: This two-group randomized controlled trial (R01NR019190) is designed to examine biological mechanisms of effect and dose-response …


Digital Health Interventions To Improve Adolescent Hpv Vaccination: A Systematic Review, Jihye Choi, Irene Tamí-Maury, Paula Cuccaro, Sooyoun Kim, Christine Markham Jan 2023

Digital Health Interventions To Improve Adolescent Hpv Vaccination: A Systematic Review, Jihye Choi, Irene Tamí-Maury, Paula Cuccaro, Sooyoun Kim, Christine Markham

Faculty, Staff and Student Publications

Digital technologies are being increasingly utilized in healthcare to provide pertinent and timely information for primary prevention, such as vaccination. This study aimed to conduct a systematic review to describe and assess current digital health interventions to promote HPV vaccination among adolescents and parents of adolescents, and to recommend directions for future interventions of this kind. Using appropriate medical subject headings and keywords, we searched multiple databases to identify relevant studies published in English between 1 January 2017 and 31 July 2022. We screened and selected eligible studies for inclusion in the final analysis. We reviewed a total of 24 …


Parental Contextual Factors And Decision-Making Related To Periviable Birth: An Integrative Review, Amy L. Wright, Elizabeth Mens, Gausiha Rathitharan Jan 2023

Parental Contextual Factors And Decision-Making Related To Periviable Birth: An Integrative Review, Amy L. Wright, Elizabeth Mens, Gausiha Rathitharan

The Qualitative Report

Parents facing a periviable birth, or birth before 25 weeks of gestation, commonly engage in antenatal consultation with healthcare providers to determine a plan of care. Parents’ pre-existing contextual factors, beliefs, and values influence their decisions regarding birth and the care of their infant. This study aims to understand the role of parental contextual factors and best-practices to their integration during antenatal consultation The Whittemore and Knafl (2005) approach to conducting an integrative review along with thematic analysis was employed to determine and present the findings. Results describe three themes related to how contextual factors influence parental decision-making: personal values …


Longitudinal Developmental Outcomes Of Infants And Toddlers With Traumatic Brain Injury, Heather T Keenan, Amy Clark, Rich Holubkov, Linda Ewing-Cobbs Jan 2023

Longitudinal Developmental Outcomes Of Infants And Toddlers With Traumatic Brain Injury, Heather T Keenan, Amy Clark, Rich Holubkov, Linda Ewing-Cobbs

Faculty, Staff and Student Publications

IMPORTANCE: Among children, infants and toddlers have some of the highest rates of traumatic brain injury (TBI), but longitudinal information on their developmental outcomes to guide postinjury surveillance is sparse.

OBJECTIVE: To evaluate infants' and toddlers' development over 3 years following TBI compared with those with orthopedic injury (OI).

DESIGN, SETTING, AND PARTICIPANTS: A longitudinal observational cohort study was conducted at 2 level 1 pediatric trauma centers from January 20, 2013, to September 30, 2015; data analysis was performed from May 12 to October 20, 2021. Participants included children injured when younger than 31 months with TBI or OI who …