Hyunkyung Choi

Decision Making Following a Prenatal Diagnosis of Down Syndrome: An Integrative Review

INTRODUCTION 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 that influence womens decision making. METHODS A search of empirical studies was conducted through electronic databases, major journals, and reference lists that were published in English between January 1999 and September 2010. Inclusion criteria were that the research explored attitudes toward continuation of pregnancy or induced abortion for DS and included at least 1 variable that explored factors influencing womens decision making following a prenatal diagnosis of DS. Studies that did not specify DS, unpublished manuscripts, review articles, and book chapters were excluded. RESULTS A total of 11 studies were identified that met the inclusion criteria. The decision to undergo an induced abortion varied depending on whether participants were prospective parents recruited from the general population (23%-33% would terminate), pregnant women at increased risk for having a child with DS (46%-86% would terminate), or women who received a positive diagnosis of DS during the prenatal period (89%-97% terminated). Multiple factors influence womens decision making following a diagnosis of DS, including demographic factors such as religion, maternal age, gestational age, number of existing children, and history of induced abortion. Psychosocial factors including perceived parenting burden/reward, quality of life for a child with DS, attitudes toward and comfort with individuals with disabilities, and support from others also are important influences. DISCUSSION Multiple factors influence the decisions pregnant women make following the diagnosis of fetal DS. Therefore, it is critical that health care providers who work with pregnant women are aware of these factors.

Family-provider interactions surrounding the diagnosis of Down syndrome

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.15–25 Also, a number of educational programs have been developed to help healthcare providers feel better prepared to deliver the diagnosis of DS.26 –28 Additionally, parents of children with DS throughout the world have devoted a great deal of time, effort, and money to the development of educational resources (e.g., books, pamphlets, and videos) that can be used by healthcare providers to inform expectant or new parents about life with DS in the 21st century (http://www.ds-health.com/ds_sites.htm for links to resources). Furthermore, the Prenatally and Postnatally Diagnosed Conditions Awareness Act (S 1810) was signed into law on October 8, 2008, and became Public Law No: 110-374.29 One of the main goals of this legislation was to improve the quality of information and support services that pregnant women and new parents receive about DS and other prenatally and postnatally diagnosed conditions. Unfortunately, despite all of this attention being paid to family-provider interactions surrounding the diagnosis of DS, reports of parental dissatisfaction with the informing process continue to appear in the popular literature, as do reports of healthcare providers giving parents inaccurate, out-dated information about life with DS. Moreover, anecdotal reports of parents feeling pushed or coerced to make unwanted choices, such as undergoing invasive testing or terminating a pregnancy after the diagnosis of DS, are becoming more common.30–33 During a session on prenatal screening at the 10th World Down syndrome Congress in Ireland in 2009, many parents expressed concern that although advances in genomics may contribute to improved health and increased life span for individuals with DS, advances in genomics may also result in decreased support for individuals with DS and their families. A number of parents noted that once prenatal testing became a routine part of prenatal care in their country, there seemed to be a growing sentiment among healthcare providers that families who chose to continue a pregnancy after a prenatal diagnosis of DS are making the wrong choice. More importantly, because it is “their choice” to have a child with DS, questions are being raised about their government’s obligation to provide resources and support. At the heart of most arguments concerning termination as the “right choice” after a prenatal diagnosis of DS is the underlying assumption that individuals with DS have a negative impact on their family, their community, and society as a whole. Unfortunately, this is a widely held assumption, despite growing evidence that many families adapt successfully to the challenges associated with raising a child with DS and some even thrive.34–44 The continued existence of this assumption became very apparent during recent media coverage of a large-scale study by Chiu et al.45 demonstrating the clinical efficacy and practical feasibility of using multiplexed maternal plasma DNA sequencing analysis to screen for DS among high-risk pregnancies clinically indicated for amniocentesis or chorionic villus sampling. In most of the media coverage, the new test was presented as a way to prevent the unwanted birth of a child with DS without endangering the life of a “normal child.”46 Very little, if any, attention was paid to educating people about what life is like for individuals with DS and their families. The main purpose of this commentary is to advocate for the inclusion of accurate, up-to-date information about the family experience of living with DS in early discussions with expectant or new families after the diagnosis of DS. Preliminary findings from an ongoing study concerning adaptation and resilience in families of children with DS being conducted by the authors of this commentary suggest that although parental satisfaction with the informing process continues to be less than ideal, many parents of children with DS are satisfied with how they were informed, especially those who were given information about what life is like for children with DS and their families.47 Of the 224 mothers who completed the online survey, 52% were satisfied with how they were informed of their child’s diagnosis and 48% were dissatisfied. Twenty-three percent of the mothers who were satisfied were very satisfied, 22% were moderately satisfied, and 7% were slightly satisfied. Of those who were dissatisfied with how they were informed, 25% were very dissatisfied, 12% were moderately dissatisfied, and 11% were slightly dissatisfied. The 60 fathers who completed the survey responded in a similar manner, 50% were satisfied with how they were informed (25% very satisfied, 18% moderately satisfied, and 7% slightly satisfied) and 50% were dissatisfied (23 very dissatisfied, 17% moderately dissatisfied, and 10% slightly dissatisfied). Given the amount of attention that has been devoted to improving parental satisfaction with the informing process, one would hope to see improvement in parental satisfaction over time. However, for the current sample of parents, this was not the case. The relationship between age of child with DS and level of satisfaction was not significant. Parents of younger children with DS did not report higher levels of satisfaction than parents of older children with DS. Instead, levels of satisfaction remained fairly constant over the past 20 years, with approximately one half of the parents being satisfied and the other half being dissatisfied. Also, in terms of when parents first became aware of their child’s diagnosis (prenatally or postnatally), the relationship between timing of the diagnosis and satisfaction with how they were informed was not significant. From the School of Nursing, Family Health Division, Carolina Center for Genome Sciences, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.

Maternal perceptions of sibling adaptation in Korean families of children with Down syndrome.

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 were to explore how Korean mothers of children with DS perceive the adaptation of their typically developing (TD) children aged 4 to 19 and how family variables contribute to sibling adaptation. METHOD This descriptive, cross-sectional study was conducted with 105 Korean mothers. RESULTS Most mothers indicated that their TD children were not experiencing psychological or behavioural problems; however, many described problems in the sibling relationship. It was found that family factors (i.e. condition management effort, condition management ability, childs daily life, parental mutuality, family hardiness and social support) were strong predictors of sibling psychological, behavioural and relational adaptation. Demographic characteristics of the child with DS, the mother and the family appeared to significantly influence sibling adaptation. CONCLUSIONS These findings highlight the importance of familial contexts in understanding sibling adaptation. Knowledge of family factors associated with better adaptation in Korean siblings of child with DS will facilitate the development of culturally appropriate interventions for these children and their families. In addition, an awareness of demographic characteristics associated with sibling adaptation will help health care professionals identify siblings who are at increased risk of experiencing difficulties in adapting.

Adaptation in families of children with Down syndrome in East Asian countries: an integrative review

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 birth of a child with Down syndrome. Existing literature in this area has focused primarily on families from Western cultures. This is problematic because nurses care for families from all over the world. Therefore, the focus of this review is on families of children with Down syndrome living in East Asia, where Confucianism is dominant. DESIGN Integrative literature review. DATA SOURCES Online databases (i.e. PubMed, CINAHL and PsycINFO) and a public search engine (i.e. Google Scholar) were used along with manual searches of reference lists and major journals. Studies were limited to original publications written in English and published between 1990-2014. REVIEW METHODS Two authors independently performed integrative review processes proposed by Whittemore and Knafl and a quality assessment using the Mixed Methods Appraisal Tool. RESULTS Like families in Western cultures, some East Asian families of children with Down syndrome adapted well and even thrived while others struggled. Various socio-cultural factors, including some associated with Confucianism, played a role in how individuals, dyads and families adapted. CONCLUSION An understanding of socio-cultural influences can help nurses implement culturally sensitive family-centred interventions with families of children with Down syndrome. It may also facilitate policy changes concerning resources for these families.

Adaptation in Families of Children with Down Syndrome: A Mixed-methods Design

Purpose: The purpose of this study, which was guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, was twofold: (a) to explore family and parental adaptation and factors influencing family adaptation in Korean families of children with Down syndrome (DS) through a quantitative methodology and (b) to understand the life with a Korean child with DS through a qualitative method. Methods: A mixed-methods design was adopted. A total of 147 parents of children with DS completed a package of questionnaires, and 19 parents participated in the in-depth interviews. Quantitative and qualitative data were analyzed using stepwise multiple regression and content analysis respectively. Results: According to the quantitative data, the overall family adaptation scores indicated average family functioning. Financial status was an important variable in understanding both family and parental adaptation. Family adaptation was best explained by family problem solving and coping communication, condition management ability, and family hardiness. Family strains and family hardiness were the family factors with the most influence on parental adaption. Qualitative data analysis showed that family life with a child with DS encompassed both positive and negative aspects and was expressed with 5 themes, 10 categories, and 16 sub-categories. Conclusion: Results of this study expand our limited knowledge and understanding concerning families of children with DS in Korea and can be used to develop effective interventions to improve the adaptation of family as a unit as well as parental adaptation.PURPOSE The purpose of this study, which was guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, was twofold: (a) to explore family and parental adaptation and factors influencing family adaptation in Korean families of children with Down syndrome (DS) through a quantitative methodology and (b) to understand the life with a Korean child with DS through a qualitative method. METHODS A mixed-methods design was adopted. A total of 147 parents of children with DS completed a package of questionnaires, and 19 parents participated in the in-depth interviews. Quantitative and qualitative data were analyzed using stepwise multiple regression and content analysis respectively. RESULTS According to the quantitative data, the overall family adaptation scores indicated average family functioning. Financial status was an important variable in understanding both family and parental adaptation. Family adaptation was best explained by family problem solving and coping communication, condition management ability, and family hardiness. Family strains and family hardiness were the family factors with the most influence on parental adaption. Qualitative data analysis showed that family life with a child with DS encompassed both positive and negative aspects and was expressed with 5 themes, 10 categories, and 16 sub-categories. CONCLUSION Results of this study expand our limited knowledge and understanding concerning families of children with DS in Korea and can be used to develop effective interventions to improve the adaptation of family as a unit as well as parental adaptation.

Delays and Disabilities: NP Screening and Care Management

Neurodevelopmental Disorders (ND) impair functioning and are associated with increased physical and psychological health risks. ND care is increasingly being provided by NPs in primary care settings. To assess NPs knowledge and care management practices for pediatric patients with potential or existing ND, practicing NPs in North Carolina were invited to complete an online survey. NC NPs provide care to ND patients in a variety of settings and have varied levels of experience with ND. Differences in knowledge, screening, and management practices are identified. Methods for improving outcomes and supporting NPs providing care for this at-risk population are discussed.