Family adaptation in families of individuals with Down syndrome from 12 countries.

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 study, was twofold: (1) to compare family adaptation in 12 countries, and (2) to examine the relationships between family variables and family adaptation. The focus of this study is data collected in the 12 countries where at least 30 parents completed the survey. Descriptive statistics were generated, and mean family adaptation was modeled in terms of each predictor independently, controlling for an effect on covariates. A parsimonious composite model for mean family adaptation was adaptively generated. While there were cross-country differences, standardized family adaptation mean scores fell within the average range for all 12 countries. Key components of the guiding framework (i.e., family demands, family appraisal, family resources, and family problem-solving communication) were important predictors of family adaptation. More cross-country studies, as well as longitudinal studies, are needed to fully understand how culture and social determinants of health influence family adaptation in families of individuals with DS.

A Mixed Methods Analysis of Care Coordination Needs and Desirable Features of an M-Health Application to Support Caregivers of Children With Down Syndrome.

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. METHOD: In this mixed methods study, caregivers completed survey materials addressing the child's health care needs, m-health use, and care coordination experiences. A sample of caregivers and health care providers were interviewed to further understanding. RESULTS: Most caregivers reported having a primary health care provider but wanted increased communication and help with care coordination. Interview data identified themes related to care coordination challenges, including information management, information sharing, use of health care guidelines, tracking health data, resources, technology use, previous application use, and coordination of schedules. DISCUSSION: Qualitative themes were linked to desired features of an m-health application to aid in development.

Dental health care for children with Down syndrome: Parents' description of their children's needs in dental health care settings.

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 with dental health care in Sweden, free comments were analysed with content analysis and resulted in five categories: "Need for continuity of care in dental health care"; "Need for dental health care professionals to have knowledge and expertise in caring for children with Down syndrome and other disabilities"; "Need for dental health care professionals to use a caring approach with children with Down syndrome"; "Need for the child with Down syndrome to be prepared to participate in their dental health care visit" and "Need for the child with Down syndrome to be given the same rights as typically developing children". To support children with Down syndrome in an optimal way, dental health care needs to be tailored to meet the child's unique needs. In addition, dental health care professionals need knowledge of and expertise in the care of children with Down syndrome.

Adaptation and Resilience in Families of Children With Spina Bifida in South Korea.

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 using survey methodology. METHODS: Data were collected from 203 parents of children with SB between June 2013 and February 2014 at the SB clinic in South Korea and analyzed using stepwise linear regression. FINDINGS: The best predictors of family adaptation and resilience in children with SB included one risk factor (parental depression) and four protective factors (parental health, family cohesion, family communication skills, and supportive friends/relatives). These five factors explained 39.7% of the total variance in family functioning (an indicator of family adaptation and resilience; F = 26.43, p < .001). CONCLUSION AND CLINICAL RELEVANCE: Findings suggest that nursing interventions designed to strengthen protective factors and reduce risk factors are likely to promote adaptation and resilience in families of children with SB.

Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice.

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 have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the sequencing or analysis of specific genomic conditions (the menu approach) or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale-up of PGS will require a menu approach that may seem impractical to some, but that draws its justification from a rich mix of normative, legal, and practical considerations.

Development and content validation of the Pediatric Eating Assessment Tool (Pedi-EAT).

PURPOSE: In this article, the authors describe the development and content validation of a parent-report measure of problematic eating behaviors: the Pediatric Eating Assessment Tool (Pedi-EAT). METHOD: 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 Phase II, interdisciplinary experts on pediatric eating behaviors rated the items for clarity and relevance using content validity indices (CVI) and provided feedback on the comprehensiveness of the instrument. In Phases III and IV, 2 groups of parents of children with and without feeding difficulties participated in cognitive interviews to gain respondent feedback on content, format, and item interpretation. The authors analyzed interviews using matrix display strategies. RESULTS: Experts rated the total scale CVI > .90 for both relevance and clarity; item CVI ranged from .67 to 1.0 for relevance and .5 to 1.0 for clarity. Analysis of each item with low scores, along with experts' and parents' feedback, resulted in refinement of the items, scoring options, and directions. Experts and parents added additional items. Readability after refinements was acceptable at less than a 5th-grade level. CONCLUSION: The Pedi-EAT was systematically developed and content validated with input from researchers, clinicians, and parents.

Research on caregiving in Chinese families living with mental illness: a critical review.

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 databases, public search engines, and references from retrieved articles revealed 37 studies published from 1990 to 2009. Four studies were theory driven at an individual level, and one study was guided by a family-level framework. Thirty-two articles were quantitative studies, and 5 were qualitative studies. All but 5 of 37 studies were cross-sectional. Findings suggest that misconceptions about mental illness, behavior disturbances, inadequate social support, and the limited value placed on caregiving contribute to maladaptation. Future research should include longitudinal studies guided by culturally appropriate family frameworks and studies using mixed methods.

Individual and family adaptation in Taiwanese families of individuals with severe and persistent mental illness (SPMI).

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 mailed questionnaires and analyzed using principal component analysis and mixed linear modeling. Adaptation was associated with lower pile-up of demands, greater social support, and more positive interpretation of family caregiving. Partially mediating effects of social support and meaning of family caregiving were supported. The results imply a need for developing culturally sensitive interventions to decrease family demands and amplify individual, family, and community strengths and resources.