Marcia Van Riper

University of North Carolina at Chapel Hill | UNC · Family Health Division

Our current understanding of adaptation in families of individuals with Down syndrome (DS) is based primarily on findings from studies focused on participants from a single country. Guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, the purpose of this cross‐country investigation, which is part of a larger, mixed methods s...

Siblings of individuals with disabilities hold a pivotal and sometimes unappreciated position in the lives of their brother or sister. We sought to understand the unique challenges and opportunities in relationships between children with chromosome 18 conditions and their siblings and to identify the ways to support this relationship. Participants...

Down syndrome (DS) is a chromosomal disorder associated with intellectual and physical disabilities and has historically been viewed by health care providers through a negative lens when considering the effect the condition has on the individual, family, and community. The purpose of this scoping review was to provide an overview of recent research...

Introduction: Care coordination is critical for the management of health care needs of children with Down syndrome by encompassing management of health information and linking of providers. This study was designed to identify caregiver and health care provider experiences of care coordination to inform the development of an m-health application....

A visit to the dental clinic may be challenging for a child with Down syndrome due to medical and oral health problems as well as communication problems. The aim of the present study was to explore how parents of children with Down syndrome describe their child's needs in the dental health care setting. In a survey concerning parental experiences w...

Abstract Introduction: The challenges of acculturation that immigrant families experience could intensify if they have a child with a disability. This qualitative descriptive study aimed to describe the experiences of Korean mothers raising children with a disability in the United States. Methodology: Semi-structured interviews were conducted base...

Care coordination is a critical component of health management aimed at linking care providers and health-information-involved care management. Our intent in this scoping review was to identify care coordination needs of families of children with Down syndrome (DS) and the strategies they used to meet those needs, with the goal of contributing to t...

Objective: To analyze problem-solving and coping strategies of parents of children with Down Syndrome in family adaptation. Method: This is a qualitative research that used the Resiliency Model of Family Stress, Adjustment, and Adaptation. Participants were mothers and/or fathers from 40 families of children aged 1 to 7 years diagnosed with DS. Di...

The purpose of this scoping review was to identify the family and child quality of life variables that have been studied in relation to one another in children with Down syndrome, the frequency with which different relationships have been studied, and the extent to which family variables were the focus of the research aims. A literature search was...

Down syndrome (DS) is the most common genetic cause of intellectual disability worldwide. The purpose of this analysis was to determine the internal consistency reliability of eight language versions of the Family Management Measure (FaMM) and compare family management of DS across cultures. A total of 2,740 parents of individuals with DS from 11 c...

Purpose: The intent of this study was to determine parents' views of the contribution of family variables to the quality of life (QoL) of children with Down Syndrome (DS). Based on prior research, we hypothesized that parents would report that family variables reflecting positive aspects of family functioning contributed to better QoL; and family...

This study aimed to determine the associations between parental monitoring and affection and three adolescent lifestyle aspects: constructive leisure, non-constructive leisure and substance use. A cross-sectional study was conducted in four countries (Chile, Mexico, Spain and Peru). Adolescents aged 12–15 self-completed a multi-purpose questionnair...

Aim To describe parental perceptions of general health, oral health and received dental health care in Swedish children with Down syndrome (DS). Methods Online questionnaire, quantitative data analysis (Chi-square test). Results Parents of 101 children with DS (52 boys, 49 girls, mean age: 9.6 years) participated. Seventy percent rated their chil...

Background: To date, investigations of quality of life (QoL) in children with Down syndrome (DS) are rather limited. The purpose of this study was twofold: to examine QoL in children with DS and to explore possible differences in the QoL by age and gender. Methods: A cross-sectional study of 211 parents of children with DS was conducted using an...

Families with children who have developmental disabilities and complex communication needs (CCNs) face challenging demands affecting family adaptation. Many children with CCNs use augmentative and alternative communication (AAC) devices to support communication, yet little is known about family adaptation to such technology. To fill this gap, an in...

Objective: to analyze the family appraisal about the Down syndrome diagnosis. Method: this is a qualitative, exploratory study, guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation. Semi-structured interviews were conducted with 20 Brazilian parents of children with Down syndrome (19 mothers and 1 father). The data were coll...

Background: Sleep problems are common among children with Down syndrome (DS), and they can have a serious impact on children with DS as well as their parents and other family members. Specific aims of this study were to evaluate parent-reported sleep problems in children with DS and to examine the relationship between the sleep behaviour of childr...

Background: Effective communication between family and clinicians has been identified as one of the most important factors in end-of-life care. Family members' perception of communication quality with clinicians may be associated with their psychological symptoms. Objectives: To examine the association between family-clinician (physicians or nur...

Purpose: The aim of this study was to explore the feasibility of using the mHealth Family Adaptation Intervention (FamilyAdapt-DS), with families of young children with Down syndrome (DS), and to assess the effect of participating in this mHealth intervention on family adaptation. Design and methods: A one-group pre-test post-test design was emp...

Purpose: To predicate the way in which families incorporate the work of managing a child with thalassemia within family life and its outcomes. Methods: A correlational design with a structural equation modeling (SEM) approach was used. A total of 309 parents of children with thalassemia from 4 tertiary care hospitals in Thailand completed our quest...

Aims With a worldwide incidence of one in every 1000 – 1100 live births, Down Syndrome (DS) is the most common genetic cause of intellectual disability. How families incorporate the child's special needs into everyday family life (family management) influences both child and family adaptation. The purpose of this analysis was to assess the internal...

Purpose: The purpose of this study, which was guided by the Family Resilience Model, was twofold: (1) to assess the risk and protective factors related to adaptation and resilience in families of children with spina bifida (SB) in South Korea and (2) to examine predictors of family adaptation and resilience. Design: This is a descriptive study u...

Children with Down syndrome are less likely to be breastfed than typically developing children, and breastfeeding has a lower duration compared to recommendations of the World Health Organization. The aim of this study was to understand the breastfeeding experiences of mothers of children with Down syndrome, including their perceptions of the breas...

Accessible Summary • This study describes an Irish‐based study that examined how families of children with Down syndrome living in Ireland adapt to their child’s diagnosis. • We found that good family communication and family hardiness have a positive affect on how families adapt. • Families of children with Down syndrome have the potential to lea...

Pediatric feeding problems occur in 25% of the general pediatric population and up to 80% of those who have developmental delays. When feeding problems place the child at nutritional risk, families are typically encouraged to increase their child's intake. Family mealtime can become a battle, which further reinforces problematic feeding behaviors f...

Effective communication between family members and clinicians is one of the most important factors in end-of-life care, yet little is known about the extent of such communication in Korea. The purpose of this review was to describe the state of the science in family-clinician communication about end-of-life care in Korea, including the timing of co...

The purpose of this analysis was to assess the applicability of the Family Management Measure (FaMM) to families in which there was a child with an intellectual disability versus a chronic condition. Drawing on data from 571 parents of children with a chronic physical condition and 539 parents of children with Down syndrome, we compared the two gro...

Based on the authors’ experiences conducting family research using varied methodological and conceptual approaches, the intent of this article is to offer practical advice for developing a successful research proposal that builds on existing work and makes a compelling case for the investigator’s family focus, study design, and analytic approach. T...

Children with congenital adrenal hyperplasia (CAH) are exposed to high levels of testosterone in utero often resulting in nontypical genitalia at birth for girls. The purpose of this analysis, which draws on data from a larger study, was to examine, based on the gender of the child, the family experiences of having a child with CAH. Sixteen parents...

Background: There are no Korean instruments to assess the concepts associated with end-of-life communication quality. Objectives: To translate and culturally adapt the Quality of Communication (QOC) questionnaire into Korean and evaluate its acceptability and internal consistency. Methods: We first translated the QOC from English into Korean,...

Purpose: Congenital adrenal hyperplasia (CAH) requires parents to inject their child with hydrocortisone intramuscularly during times of illness and adrenal crisis. The purpose of this study was to describe circumstances surrounding adrenal crisis events in children with CAH; to explore parents' perceptions of the consequences of having a child wi...

Congenital adrenal hyperplasia (CAH) is an endocrine condition that requires parents to administer steroids up to three times daily, supplementing maintenance doses with oral or injectable doses during times of illness. The purpose of this integrative review was to explore the management, care, and associated health issues for children with CAH and...

Recent advances in genomics and related technologies have the potential to improve health care throughout the world. In this cross-sectional study, we examine genetics education, knowledge, and genetics-related experiences among the nurses and physicians who provide primary care in a Brazilian city. Fifty-four healthcare professionals from family h...

Background The emerging dual imperatives of personalized medicine and technologic advances make population screening for preventable conditions resulting from genetic alterations a realistic possibility. Lynch syndrome is a potential screening target due to its prevalence, penetrance, and the availability of well-established, preventive interventio...

Neurodevelopmental Disorders (ND) impair functioning and are associated with increased physical and psychological health risks. ND care is increasingly occurring in primary care settings by NPs. To assess NP's knowledge and care management practices for pediatric patients with potential or existing ND practicing NPs in NC were invited to complete a...

Aim: The purpose of this integrative literature review was to understand the experiences of East Asian families of children with Down syndrome and identify factors affecting their adaptation in the Resiliency Model of Family Stress, Adjustment and Adaptation. Background: Socio-cultural factors influence how well families adapt following the birt...

Theme: Cross-cultural nursing.

Theme: Ethical issues: dignity and humanity.

In this study the authors explored maternal perceptions of life with Down Syndrome (DS) in Korea. Written responses to open-ended questions were collected as a part of a larger study and examined using content analysis. Most mothers commonly reported responses toward children with DS at both the societal and community level were negative. Many moth...

Thalassemias are among the most common genetic disorders that have a high prevalence in Thailand. It is estimated that 900,000 babies with thalassemia are expected to be born during the next 20 years. This figure reveals that 30%-40% of populations in Thailand are living with thalassemia syndrome. Qualities of life of children with Thalassemia depe...

Advances in genomics have led to calls for developing population-based preventive genomic sequencing (PGS) programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should ha...

Background There is growing evidence that while some families of individuals with Down Syndrome (DS) find it difficult to adapt to the ongoing challenges associated with raising an individual with DS, others adapt successfully and some even thrive. However, few studies have examined the experiences of families living in different countries. Therefo...

Background It is estimated that more than 500 infants with Down syndrome (DS) are born each year in Korea. DS affects not only these individuals, but family members as well. Some siblings deal successfully with the challenges of living with a child with DS and adapt well while others struggle or fail to adapt. The aims of this descriptive study wer...

To describe the development and content validation of a parent-report measure of problematic eating behaviors: the Pediatric Eating Assessment Tool (Pedi-EAT). Methods In Phase I, items were generated from parents' descriptions of problematic feeding behaviors of children, review of literature, and review of existing eating-related instruments. In...

The purpose of this review was to understand the experience of siblings living with a child with Down syndrome (DS) and to identify factors influencing siblings' adaptation. There were both positive and negative consequences associated with being the sibling of a child with DS. Various factors affected siblings' adaptation, but many of these factor...

Purpose: Thousands of single gene, mitochondrial, and chromosomal disorders have been described in children. The purpose of this article is twofold. The first is to increase nurses’ awareness of new developments in genetic disorders that are commonly seen in practice and taught in schools of nursing. The second is to illustrate important genetic co...

Prenatal screening for Down syndrome (DS) is a routine part of prenatal care in many countries, and there is growing interest in the choices women make following a prenatal diagnosis of DS. This review describes what is known about actual and hypothetical decision making following a prenatal diagnosis of DS and adds understanding about the factors...

Aim: Pharmacists are positioned to provide medication counseling and drug information to patients. This study assessed the knowledge, attitudes and education of over 700 pharmacists concerning pharmacogenetics and pharmacogenetic testing. Methods: A multiquestion, online survey was developed to assess healthcare provider knowledge, attitudes and...

Aim: The use of genetic information to guide a patient's drug therapy will have a great influence on clinical practice within healthcare. However, despite the prospective benefits of pharmacogenetic testing, little is known regarding what clinicians actually think about this promising technology. The purpose of this study was to assess attitudes t...

During the past 40 years, much has been written about parental satisfaction with family-provider interactions surrounding the diagnosis of Down syndrome (DS).1–14 In addition, there have been numerous articles about how to break bad or difficult news to patients and families, with the unexpected diagnosis of DS frequently being used as an exemplar....

To examine perceived knowledge and clinical comfort with genetics among Taiwanese undergraduate nursing students. Information about the integration of genetics into the nursing curriculum was also assessed. A descriptive, cross-sectional study. A self-report survey designed to assess perceived knowledge and clinical comfort with genetics was distri...

The primary aim of this study was to examine the effects of family demographics, family demands, and family appraisal on adaptation in Taiwanese families of children with Down syndrome. A second aim was to assess the potential mediating effect of family appraisal on the relationship between family demands and adaptation. Eighty-three families compl...

Recent advances in genetics and genomics are having a profound impact on our understanding of the biological underpinnings of health and human development (Cutfield, Hofman, Michell, & Morison, 2007; Grigorenko, 2009; Obradovic & Boyce, 2009). In addition, recognition that many of the health conditions seen in childhood, both rare (e.g., sickle cel...

Much of the existing research on caregiving in families of individuals with mental illness has been conducted in Western societies. Therefore, the purpose of this review was to critically examine research on caregiving in families of individuals with mental illness living in Taiwan, Hong Kong, and Mainland China. A search using computerized databas...

The Institute for Pharmacogenomics and Individualized Therapy (IPIT) at the University of North Carolina at Chapel Hill (NC, USA) is a collaborative, multidisciplinary unit that brings together faculty from different disciplines and crosses the traditional departmental/school structure to perform pharmacogenomics research. IPIT investigators work t...

The purpose of this study was to examine individual and family adaptation in Taiwanese families of persons with severe and persistent mental illness. Mediating effects of social support and meaning of family caregiving on the relationship between pile-up of demands and family adaptation were also assessed. Data were collected from 84 families using...

The purpose of the present investigation, which was guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, was twofold: (a) to describe maternal perceptions of parental and family adaptation in families raising a child with Down syndrome, and (b) to examine linkages between family demands, family resources, family problem solv...

This chapter provides an overview of some of the complex ethical, legal, and social issues associated with advances in genomics and molecular medicine, such as equity in access to genetic information and services, use of genetic information in nonhealth-related settings, and genetic discrimination. It is hoped that this discussion will stimulate fu...

The family experience of genetic testing is explored in this article. Two family stories are presented to illustrate how families define and manage the ethical and social issues that emerge during 2 types of genetic testing: mutation analysis for Huntington's disease and genetic testing for breast and ovarian cancer susceptibility. These 2 families...

The purpose of this article is to provide an overview of current knowledge concerning genetic testing for breast and ovarian cancer susceptibility. This overview includes 1) a brief history of genetic testing for breast and ovarian cancer susceptibility, 2) a review of factors that midwives and other health care providers need to consider before of...

The purpose of this article is to provide an overview of current knowledge concerning genetic testing for breast and ovarian cancer susceptibility. This overview includes 1) a brief history of genetic testing for breast and ovarian cancer susceptibility, 2) a review of factors that midwives and other health care providers need to consider before of...

Although faculty members often come to a university school of nursing with little or no experience in teaching, research, or other forms of scholarship, few schools of nursing have a comprehensive, formalized faculty development program. In considering the need to find and retain the best faculty in this competitive market, the University of North...

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The main purpose of this integrative review is to summarize existing nursing research on the sibling experience of living in a family that includes a child with a chronic illness or disability, specifically highlighting nurse researchers who have conducted more than two studies concerning the sibling experience. A secondary purpose is to determine...

The overall purpose of this article is to provide pediatric nurses with the knowledge and motivation necessary to implement best clinical practice with children who have Down syndrome and their families. First, changes that have occurred in the care of children with Down syndrome are briefly reviewed. Next, recommendations concerning best clinical...

The purposes of this study were the following: (1) to describe maternal perceptions of family-provider relationships in the neonatal intensive care unit (NICU) and (2) to examine associations between maternal perceptions of family-provider relationships in the NICU and well-being in families with preterm infants. The study's design was descriptive...

The purpose of this research was to examine relationships among family demands, family resources, family problem-solving communication, family coping, and sibling well-being in 41 families of children with Down syndrome. The guiding framework for this research was the resiliency model of family stress, adjustment, and adaptation. Mailed questionnai...

The purpose of this study was twofold: (a) to describe parental perceptions of family-provider relationships, and (b) to explore links between parental perceptions of family-provider relationships and well-being in families with children who have Down syndrome. Mailed questionnaires were used to collect data from 94 families that include a child wi...

Guided participation and development of care-giving competencies for families of low birth-weight babies¶The concept of guided participation is central to theory for supporting families in developing competencies for care of their low birth-weight infants. Guided participation is a process through which an experienced person helps another person wh...

The sudden, unexpected death of a child is likely to have profound and enduring implications for surviving siblings. In this article, stories from five sisters are presented to demonstrate how children's experiences of and responses to the death of a sibling can vary greatly, even within the same family. Each child creates his or her own reality, a...

The purpose of this study was to examine the effects of a child with Down syndrome on the individual functioning of both parents, marital functioning, and family functioning. Thirty-four families of children with Down syndrome were compared to 41 families with nondisabled children. Mothers and fathers in both groups completed a series of self-repor...

The birth of a child with Down syndrome is a challenge to parental and societal expectations. Feelings of shock, sadness, confusion, denial, fear, anger, guilt, and helplessness may be evoked. In this paper, the impact of stigma on individuals with Down syndrome and their families will be reviewed to clarify why interactions between parents and oth...