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Effectiveness Of Group Interventions For Weight Loss For Youth: A Meta-Analytic Review, Monica Carolina Martinez Aug 2022

Effectiveness Of Group Interventions For Weight Loss For Youth: A Meta-Analytic Review, Monica Carolina Martinez

Theses and Dissertations

Introduction: Nearly 19.3% of children in the United States have obesity. There are several behavioral weight loss (BWL) programs available for children and adolescents that have proven effective in managing weight. Many of these treatments are delivered to groups of children rather than to individual youth. However, previous reviews of the literature have not explored the unique effects of group treatment modalities. Research has shown that social ties, particularly with peers, have an impact on adolescents' physical activity engagement and dietary habits. Therefore, it is important to explore how the interaction component of group delivered BWL treatments contributes to their …


Crime-Fighting Heroes And Pretty Caped Crusaders: Classroom Content Analysis Of Children’S Halloween Costumes, Alexandra Hendley Aug 2022

Crime-Fighting Heroes And Pretty Caped Crusaders: Classroom Content Analysis Of Children’S Halloween Costumes, Alexandra Hendley

Feminist Pedagogy

The content analysis activity described in this article allows students to investigate the gendered meanings in marketing materials for children’s Halloween costumes. What lessons about gender are relayed through materials such as these? Existing research has shown that costumes are often gendered in traditional, stereotypical ways. However, rather than being passive recipients of research findings, students participating in this activity get to “do” scholarly work and examine data firsthand. This process of discovery is the hallmark of inquiry-guided learning and is also central to feminist pedagogy. For this activity, students are provided with a set of children’s Halloween costumes to …


Adolescent-Reported Household Food Insecurity And Adolescents' Poor Mental And Physical Health And Food Insufficiency In Kenya, Amanda S. Mcrell, Maryah S. Fram, Edward A. Frongillo Jr. Aug 2022

Adolescent-Reported Household Food Insecurity And Adolescents' Poor Mental And Physical Health And Food Insufficiency In Kenya, Amanda S. Mcrell, Maryah S. Fram, Edward A. Frongillo Jr.

Faculty Publications

Background

Assessing adolescents’ experiences of food insecurity in households is important for promoting healthy development. Although parental reports have been traditionally used, emerging research highlights the importance of child and adolescent reports of the household food environment.

Objectives

Extending research from high- and upper-middle-income countries, this study of adolescent compared with adult reports of household food insecurity in Kenya, a lower-middle-income country, examined 1) prevalence of and correspondence between adolescent and adult reports of household food insecurity, and 2) associations of adolescent and adult reports of household food insecurity with adolescent nonnutritional and nutritional outcomes.

Methods

Using data …


Character Education For Elementary School Students And Parental Commitment: A Qualitative Phenomenological Study, Joshua J. Barela Aug 2022

Character Education For Elementary School Students And Parental Commitment: A Qualitative Phenomenological Study, Joshua J. Barela

Doctoral Dissertations and Projects

The purpose of this transcendental phenomenological study was to understand the parents’ experiences with their children's character education. The central research question for this study was the following: What are the parents’ experiences with their child’s character education? The two subsequent research questions were: (a) What are the perceived critical factors experienced by the parents influencing their child’s character education process? (b) What are the perceived obstacles experienced by the parents hindering their child’s character education and development? The central phenomenon of the study included 12 parental participants at a private elementary school in South Asia. The central phenomenon was …


Parents' Knowledge, Attitude And Practices Toward Oral Health Of Their Children With Primary Dentition: A Cross Sectional Study, Marwa Foad, Mennatallah Helal, Soad Abdel Moneim Aug 2022

Parents' Knowledge, Attitude And Practices Toward Oral Health Of Their Children With Primary Dentition: A Cross Sectional Study, Marwa Foad, Mennatallah Helal, Soad Abdel Moneim

Journal of Medicine in Scientific Research

Objective This cross-sectional study aims to assess parents' knowledge, attitude, and practices toward the oral health of their children with primary dentition. Patients and methods The study was performed in the Pediatric Dentistry and Dental Public Health Department, Faculty of Dentistry, Cairo University. Data were obtained through 301 questionnaires translated from English to Arabic, for the assessment of the parents' knowledge, attitude, and practices scores and via clinical examination of the children for the assessment of caries prevalence by calculation of their dmf scores. Results The majority of parents (90%) had adequate knowledge scores with a significantly strong negative correlation …


Insights Into Microbiome And Metabolic Signatures Of Children Undergoing Peanut Oral Immunotherapy, Andrea C Blackman, Santosh Thapa, Alamelu Venkatachalam, Thomas D Horvath, Jessica K Runge, Sigmund J Haidacher, Kathleen M Hoch, Anthony M Haag, Ruth Ann Luna, Aikaterini Anagnostou Aug 2022

Insights Into Microbiome And Metabolic Signatures Of Children Undergoing Peanut Oral Immunotherapy, Andrea C Blackman, Santosh Thapa, Alamelu Venkatachalam, Thomas D Horvath, Jessica K Runge, Sigmund J Haidacher, Kathleen M Hoch, Anthony M Haag, Ruth Ann Luna, Aikaterini Anagnostou

Faculty, Staff and Students Publications

BACKGROUND: Peanut oral immunotherapy has emerged as a novel, active management approach for peanut-allergic sufferers, but limited data exist currently on the role of the microbiome in successful desensitization.

OBJECTIVE: We examined the oral and gut microbiome in a cohort of 17 children undergoing peanut oral immunotherapy with the aim to identify the microbiome signatures associated with successful desensitization. We also set out to characterize their fecal metabolic profiles after successful therapy.

METHODS: Participants gradually built up their daily dose from 2 mg (starting dose) to 300 mg (maintenance dose) within approximately 40 weeks. We collected a buccal and stool …


Implementation And Evaluation Of A Mental Health Referral Pathway For School Nurses., Jessica Rivera Aug 2022

Implementation And Evaluation Of A Mental Health Referral Pathway For School Nurses., Jessica Rivera

Doctor of Nursing Practice Papers

Nearly one in six American children between the ages of six and 17 have a treatable mental disorder (American Academy of Family Physicians [AAFP], 2020). Still, less than half do not receive help from a mental health professional (Whitney & Peterson, 2019). School nurses have an opportunity to bridge the gap by improving youth access to mental health care. Purpose: The purpose of this quality improvement project was to implement and evaluate a mental health referral pathway for school nurses. The specific aims were to improve school nurses' preparedness to recognize and address mental health concerns and to increase the …


Lgbtq Youth And The Promise Of The Kennedy Quartet, Michael J. Higdon Aug 2022

Lgbtq Youth And The Promise Of The Kennedy Quartet, Michael J. Higdon

Cardozo Law Review

The Supreme Court has only issued four opinions endorsing the constitutional rights of sexual minorities, each of them authored by Justice Anthony Kennedy. These four cases, which this Article refers to collectively as “the Kennedy Quartet,” have done much to advance the equality of LGBTQ adults in the United States. The question remains, however, as to what extent those cases likewise protect LGBTQ children. Far from simply being an academic question, this issue has taken on increased urgency as legislators in a number of states—thwarted by the Kennedy Quartet in their ability to target LGBTQ adults—have turned their attentions to …


Investigating Fruit And Vegetable Variety In A National Food Co-Op: A Brighter Bites Evaluation, Katherine G. Hearne Aug 2022

Investigating Fruit And Vegetable Variety In A National Food Co-Op: A Brighter Bites Evaluation, Katherine G. Hearne

Dissertations and Theses (Open Access)

American children eat fewer fruits and vegetables (F&V) and less variety of F&V than recommended for health. Food cooperatives and other programs have become a popular way to increase F&V intake, but little is known about the variety of F&V distributed by these programs or its relationship with program attendance or child F&V intake. Brighter Bites is a national, school-based food co-op distributing rescued, donated, fresh F&V to families in low-income schools. We evaluated, for the first time, the variety of F&V Brighter Bites distributed to families in the 2018-2019 school year and the relationships between that variety and both …


Trauma And Resilience Among Migrant Children From Mexico And The Northern Triangle Eroute To The United States, Georgina Sanchez-Garcia Aug 2022

Trauma And Resilience Among Migrant Children From Mexico And The Northern Triangle Eroute To The United States, Georgina Sanchez-Garcia

Open Access Theses & Dissertations

Children who experience the phenomenon of migration from the Northern Triangle region and Mexico en route to the United States face pressing problems with psychosocial consequences that ostensibly affect them and are reflected in the violation of their human rights. We studied trauma and resilience among migrant children from Mexico and the Northern Triangle nations â??Guatemala, El Salvador, and Hondurasâ?? who are uprooted from their communities to undertake the dangerous overland journey to the United States (Lusk & Sanchez-Garcia, 2021; Rodriguez, 2020; UNICEF, 2018). The experience of such migration for children can be fraught with hardship, and it may have …


Psychological Distress Among Parents Due To Their Children Having Cancer: A Systematic Review, Ikeu Nurhidayah, Ratih Kusuma Dewi, Nur Oktavia Hidayati, Sandeep Poddar Jul 2022

Psychological Distress Among Parents Due To Their Children Having Cancer: A Systematic Review, Ikeu Nurhidayah, Ratih Kusuma Dewi, Nur Oktavia Hidayati, Sandeep Poddar

Kesmas

As a result of their children's cancer, parents are at risk of experiencing psychological distress. Parental stress will affect their roles in providing emotional support for their children. This systematic review aimed to identify the psychological distress of parents having children with cancer. EBSCO, PubMed, Science Direct, and Research Gate were applied to conduct electronic searches. The terms "parents," "children," "cancer," and "psychological distress" were combined using the Boolean expressions "OR" and "AND." The inclusion criteria were non-experimental studies published in English within the last 10 years (2010- 2020). Risk of bias assessment was conducted for each included study using …


Reunification In Informal Foster Care Child Placement: Examining The Different Pathways In Ghana, Hajara Bentum, Esmeranda Manful Jul 2022

Reunification In Informal Foster Care Child Placement: Examining The Different Pathways In Ghana, Hajara Bentum, Esmeranda Manful

Research outputs 2022 to 2026

Informal foster care remains the preferred alternative care option for children in many parts of the world. However, the processes of reunification in informal foster care are largely unknown. This qualitative study sought to explore the reunification processes within informal foster care in Ghana to inform child protection services for better program design for such children. Twenty interviews were conducted with reunified fostered children and their biological parents. Data from the in-depth interviews with parents and children were analyzed thematically. Three main processes of reunification were identified in this study namely; open, flexible exit plans and educational threshold arrangements. The …


School And Community Drivers Of Child Diets In Two Arab Cities: The Scale Protocol And Innovative Tools To Assess Children’S Food Environments, Hala Ghattas Ph.D., Zeina Jamaluddine, Aline Semaan, Nehmat El-Helou, Gloria Safadi, Tatiana Elghossain, Christelle Akl, Shady Elbassuoni, Ali Chalak, Jalila El Ati, The Scale Research Group Jul 2022

School And Community Drivers Of Child Diets In Two Arab Cities: The Scale Protocol And Innovative Tools To Assess Children’S Food Environments, Hala Ghattas Ph.D., Zeina Jamaluddine, Aline Semaan, Nehmat El-Helou, Gloria Safadi, Tatiana Elghossain, Christelle Akl, Shady Elbassuoni, Ali Chalak, Jalila El Ati, The Scale Research Group

Faculty Publications

Background

In the context of the rapid nutrition transition experienced by middle-income countries of the Arab region, children and adolescent’s food choices and dietary behaviors are early risk factors for the development of non-communicable diseases. Assessment of factors influencing food choices among this age group is challenging and is usually based on self-reported data, which are prone to information and recall bias. As the popularity of technologies and video gaming platforms increases, opportunities arise to use these tools to collect data on variables that affect food choice, dietary intake, and associated outcomes. This protocol paper describes the SCALE study (School …


Supporting Children Impacted By Parental Addiction: A Toolkit For Kinship Caregivers, Nicole Mueller, Jaimee Kudrle Jul 2022

Supporting Children Impacted By Parental Addiction: A Toolkit For Kinship Caregivers, Nicole Mueller, Jaimee Kudrle

Nursing DNP Projects

Kinship caregiving has become increasingly common in the United States, specifically due to parental substance use disorder. These kinship caregivers (KC) have unique needs that are largely unmet. Often, there is no comprehensive resource for KCs specific to their community. KC’s greatest needs are financial, legal, and mental health assistance, as well as educational information about care of children for the kinship caregivers. The objective of this project was to develop a KC resource toolkit to meet priority needs within the community. The project design utilized an EBP framework and followed a community-based participatory research approach. Project leads worked with …


The Lived Experience Of Parents Of Children With Special Healthcare Needs On Public And Private Insurance: A Phenomenological Study, Regine P. Reaves Jul 2022

The Lived Experience Of Parents Of Children With Special Healthcare Needs On Public And Private Insurance: A Phenomenological Study, Regine P. Reaves

Dissertations

Due to recent advances in medical technology, the number of children with special healthcare needs (CSHCN) is steadily growing in the United States. CSHCN comprise more than 40% of overall healthcare costs nationwide, even though this group is only comprised of 16% of the U.S. child population. There are significant differences between private and public health plans in terms of cost, adequacy, and parent satisfaction. As an added benefit, some public and private health insurance plans offer nursing care coordination (or nursing case management) services. The purpose of this study was to understand the experiences of parents of CSHCN enrolled …


Return Migration, Human Capital, And Labor Outcomes, Avinandan Chakraborty Jul 2022

Return Migration, Human Capital, And Labor Outcomes, Avinandan Chakraborty

Economics ETDs

This dissertation is a collection of chapters that demonstrate the relationship between return migration, human capital, and labor outcomes in the origin developing countries. Return migration is an intrinsic part of the cycle of international migration and development. Migrants acquire new skills, accumulate human capital and savings during their stay abroad. When they return, this accumulated capital may generate benefits for the left behind family members but may also affect their reintegration into the labor markets in the origin countries.

In my first chapter, I estimate the effect of a return migrant in the household on the schooling outcomes of …


Age-Related Changes In Diffuse Optical Tomography Sensitivity Profiles From Childhood To Adulthood, Xiaoxue Fu Ph.D., John E. Richards Jul 2022

Age-Related Changes In Diffuse Optical Tomography Sensitivity Profiles From Childhood To Adulthood, Xiaoxue Fu Ph.D., John E. Richards

Faculty Publications

Significance: Diffuse optical tomography (DOT) uses near-infrared light spectroscopy to measure changes in cerebral hemoglobin concentration. Anatomical interpretations of the brain location that generates the hemodynamic signal require accurate descriptions of the DOT sensitivity to the underlying cortex. DOT sensitivity profiles are different in infants compared with adults. However, the descriptions of DOT sensitivity profiles from early childhood to adulthood are lacking despite the continuous head and brain development.

Aim: We aim to investigate age-related differences in DOT sensitivity profiles in individuals aged from 2 to 34 years with narrow age ranges of 0.5 or 1 year.

Approach: We implemented …


Mothers’ Reflections On Cat Ownership For A Child With Autism Spectrum Disorder During Covid-19, Saskia Keville, Sophia De Vita, Amanda K. Ludlow Jul 2022

Mothers’ Reflections On Cat Ownership For A Child With Autism Spectrum Disorder During Covid-19, Saskia Keville, Sophia De Vita, Amanda K. Ludlow

People and Animals: The International Journal of Research and Practice

Animal- assisted interventions are increasingly used as a complementary therapy in clinical practice to support people with autism spectrum disorder (ASD), with promising outcomes compared to traditional therapies. Less is understood about the therapeutic benefits of more accessible and affordable small pet ownership for families with a child with ASD, alongside the pets’ welfare living in these homes. This study explored the experiences of cat ownership for young people with ASD from the perspective of their mothers during a time of transition generated by COVID-19. Semi-structured interviews were conducted with six mothers and transcripts analyzed using reflexive thematic analysis. Three …


Conducting A Violence Against Children And Youth Survey (Vacs) Among Humanitarian-Affected Populations In Uganda: Fieldwork Strategies And Challenges, Peter Kisaakye, Francis Obare Onyango, George Odwe, Yohannes Wado, Chi-Chi Undie Jul 2022

Conducting A Violence Against Children And Youth Survey (Vacs) Among Humanitarian-Affected Populations In Uganda: Fieldwork Strategies And Challenges, Peter Kisaakye, Francis Obare Onyango, George Odwe, Yohannes Wado, Chi-Chi Undie

Sexual and Reproductive Health, Rights, and Choices

No abstract provided.


Pediatric Seizures: Access And Utilization Of Specialty Care And Mental Health Care, Samantha Delos Santos Jul 2022

Pediatric Seizures: Access And Utilization Of Specialty Care And Mental Health Care, Samantha Delos Santos

Theses and Graduate Projects

Epilepsy is the leading neurological disorder among children, and requires specialized health care (Zack & Kobau, 2015). However, many patients with seizures do not receive appropriate specialized care (Begley et al., 2009; Burneo et al., 2009). This study examined the impact of health insurance type on access to and use of specialty care and mental health care among pediatric patients, ages 3-17, whose parents reported that they had experienced at least one seizure in the last year. This study was a secondary analysis of data collected in the 2011 (n = 77) and 2016 (n = 87) National Health Survey …


The Role Of Motivation In The Conceptual Model Of Motor Development In Childhood, Cristina Menescardi, An V. De Meester, Sofie Morbee, Leen Haerens, Isaac Estevan Jul 2022

The Role Of Motivation In The Conceptual Model Of Motor Development In Childhood, Cristina Menescardi, An V. De Meester, Sofie Morbee, Leen Haerens, Isaac Estevan

Faculty Publications

The aim of this study was twofold: first, to investigate whether perceived motor competence (PMC) mediates the relation between actual motor competence (AMC) and physical activity (PA) according to the conceptual model of motor development, and second to examine the role of different motivational regulations (i.e., intrinsic, identified, introjected, and external regulation) in the relationship between PMC and PA. A sample of 504 Spanish students (46.2% girls, 8–12 years old) voluntarily participated in this study. In relation to the first aim, structural equation modeling revealed that PMC indeed mediates the association between AMC and PA. In relation to the second …


Teaching Children With Autism To Tact Private Events Based On Common Properties, Madisyn Quidort Jul 2022

Teaching Children With Autism To Tact Private Events Based On Common Properties, Madisyn Quidort

Theses and Dissertations

Skinner (1957) proposed that people learn to talk about private events in several ways. This study sought to examine the plausibility of one of those mechanisms: common properties. Skinner asserted that children learn tacts for public stimuli through normal interaction with their caregivers. When a child experiences a private stimulus that shares some feature with a previously learned public stimulus, the child generalizes the tact to the private sensation because there is a common property between the two stimuli. Three children with autistic disorder were taught 6 to 9 sensation tacts (e.g., prickly, cozy, tight) depicted in videos (e.g., a …


Relationships Among Sleep, Physical Activity, And Weight Status In Children And Adolescents, Agnes Bucko Jul 2022

Relationships Among Sleep, Physical Activity, And Weight Status In Children And Adolescents, Agnes Bucko

Theses and Dissertations

Sleep and physical activity are both associated with multiple behavioral and metabolic health outcomes, and both behaviors have been linked to the development of weight status. Recent estimates suggest that many children are not meeting sleep recommendations or participating in adequate levels of physical activity, which may be related to the high prevalence of childhood overweight and obesity. Much of the research assessing these relationships has focused on adults and older children, and has relied on parent- or child-reported, cross-sectional research in predominantly White samples. Little work has focused on these relationships in very young children. Although more research has …


Parent Distress, Parent-Child Interactions, Child Distress And Child Cooperation During Cancer Treatment-Related Port Starts: A Caring Perspective, Jinbing Bai Jun 2022

Parent Distress, Parent-Child Interactions, Child Distress And Child Cooperation During Cancer Treatment-Related Port Starts: A Caring Perspective, Jinbing Bai

Dissertations

Children reported more suffering from cancer treatment-related painful procedures than cancer itself. Appropriate parent interaction behaviors can help children cope with these painful procedures. Swanson's Theory of Caring provides a framework to formulate parent interaction behaviors. This dissertation consisted of three separate papers to investigate parent-child interactions during cancer treatment-related port starts.


“You Never Exhale Fully Because You're Not Sure What's Next”: Parents' Experiences Of Stress Caring For Children With Chronic Conditions, Stephanie Smith, Mary Tallon, Carrie Clark, Lauren Jones, Evalotte Mörelius Jun 2022

“You Never Exhale Fully Because You're Not Sure What's Next”: Parents' Experiences Of Stress Caring For Children With Chronic Conditions, Stephanie Smith, Mary Tallon, Carrie Clark, Lauren Jones, Evalotte Mörelius

Research outputs 2022 to 2026

Children with chronic conditions are experiencing improved survival worldwide, and it is well-known that their parents are stressed. Yet, despite this knowledge, parents continue to experience stress. Our study explored the lived experience of parental stress when caring for children with various chronic conditions to identify opportunities to potentially reduce stress for these parents. This was an exploratory qualitative study using semi-structured interviews. To ensure appropriate research priorities were addressed, the study was co-designed with consumer and stakeholder involvement. Twenty parents were interviewed. Parents were recruited through a recognized family support organization for children with various care needs in Western …


Usability Testing With Children: History Of Best Practices, Comparison Of Methods & Gaps In Literature, Andria Banker, Carlye Lauff Jun 2022

Usability Testing With Children: History Of Best Practices, Comparison Of Methods & Gaps In Literature, Andria Banker, Carlye Lauff

DRS Biennial Conference Series

This paper is a systematized literature review centered on the best practices of usability testing with children, when they are the target end user in product development. The paper begins with a brief history of usability testing with children during the prototyping stage of product development. Following, the methodology guiding this literature review is described. Then, guidelines for usability testing with children provided by past research are outlined in chronological order, documented to show the evolution of changes or improvements in the practices over time. Additionally, most of the approaches to usability (as part of evaluative research) have been identified …


Digital Toys As Tangible, Embodied, Embedded Interactions, Nicole Vickery, Dannielle Tarlinton, Yuehao Wang, Alethea Blackler Jun 2022

Digital Toys As Tangible, Embodied, Embedded Interactions, Nicole Vickery, Dannielle Tarlinton, Yuehao Wang, Alethea Blackler

DRS Biennial Conference Series

Our research aims to explore the potential that tangible, embedded, embodied interactions (TEIs) has in enabling children’s (age 3-5 years old) active play. This paper describes our study of 66 commercially available digitally augmented toys that have the potential to get children moving, and how these digital toys may be conceptualised as TEIs. During our analysis, the type and persistence of digital feedback from the toys was an important factor in our conceptualisation of these toys as tangible and embodied. We also encounter issues when conceptualising children’s toys, particularly toys for pretend play, as embedded interaction. These findings offer the …


Visual Communication Design As A Form Of Mindfulness-Based Intervention, Jesvin Puay-Hwa Yeo, Chua-Tee Teo, Reuben Tay Jun 2022

Visual Communication Design As A Form Of Mindfulness-Based Intervention, Jesvin Puay-Hwa Yeo, Chua-Tee Teo, Reuben Tay

DRS Biennial Conference Series

The paper explores the effects of mindfulness-based design interventions to help children better self-regulate their emotions. It attempts to ascertain if the use of prototype designs could further enhance the children’s awareness or mindfulness, and emotional wellbeing. Children’s emotional and behavioural problems have become a growing concern. These problems are related to the difficulties children face in controlling their emotions, which may lead to psychological problems in adulthood. This indicates the need to help children understand feelings and how to self-regulate emotions. A pilot design project was conducted to explore the connection between mindfulness-based practice and emotion regulation in children …


Does Hiv-Related Stigma Depress Social Well-Being Of Youths Affected By Parental Hiv/Aids?, Yafei Zhao, Jiaojiao Wan, Lili Ji, Giagai Lui, Yixin Shi, Junfeng Zhao, Xiaoming Li Ph.D. Jun 2022

Does Hiv-Related Stigma Depress Social Well-Being Of Youths Affected By Parental Hiv/Aids?, Yafei Zhao, Jiaojiao Wan, Lili Ji, Giagai Lui, Yixin Shi, Junfeng Zhao, Xiaoming Li Ph.D.

Faculty Publications

Parental illness or death due to HIV/AIDS has long-term impacts on children’s social well-being, potentially challenging the children’s basic developmental needs and future. Based on the theoretical model of social well-being, the present study tested a moderated mediation model that HIV-related stigma moderated the mediating role of social trust on the relationship between perceived social support (PSS) and social well-being. A sample of 297 youths aged 20–30 years affected by parental HIV/AIDS (57.2% male), including 129 (43.40%) AIDS orphans and 168 vulnerable youths (56.60%) completed questionnaires of perceived social support, social well-being, social trust, and HIV-related stigma. IBM SPSS 25.0 …


Psychosocial Considerations For The Child With Rare Disease: A Review With Recommendations And Calls To Action., Leslee Belzer, Margaret Wright, Emily J. Goodwin, Mehar N. Singh, Brian S. Carter Jun 2022

Psychosocial Considerations For The Child With Rare Disease: A Review With Recommendations And Calls To Action., Leslee Belzer, Margaret Wright, Emily J. Goodwin, Mehar N. Singh, Brian S. Carter

Manuscripts, Articles, Book Chapters and Other Papers

Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a significant impact. The diagnostic odyssey undertaken as part of having a child with RD is immense and carries with it practical, emotional, relational, and contextual issues that are not well understood. Children with RD often have chronic and complex medical conditions requiring a complicated milieu of care by numerous clinical caregivers. They may feel isolated and may feel stigmas in settings of education, employment, and the workplace, or a lack a social support or understanding. Some parents report facing similar loneliness amidst a veritable medicalization of their …