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.

Understanding type and quality of relationships between individuals with chromosome 18 syndromes and their siblings.

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 were recruited through the lay advocacy organization, the Chromosome 18 Registry & Research Society. Fifty-seven siblings from 36 families participated, using an investigator designed instrument, were asked to agree or disagreed with statements from four content areas (information and knowledge about the syndrome, feelings about the sibling relationship, involvement with and caregiving for their sibling, and support and advocacy). Siblings reported that they know their sibling with a disability very well and reported a wide range of emotions regarding their sibling. There was a strong sense of pride in their brother/sister's abilities, and many participants reported attempts to help others understand their brother/sister. Many siblings reported a dislike for the common assumption that their affected sibling is a burden on the family. Most participants reported feeling some degree of responsibility for their affected sibling, but many also reported that they enjoy this role. Sixty-three parents from 36 families responded to the survey. Most parents felt their typically developing children enjoyed teaching new things to their affected child as well as being a good role model for them. Most parents also felt their typically developing child was comfortable telling others about their sibling's condition. Recommendations for interventions and future research are discussed.

Adaptation at the Family Level in Families of Individuals With Down Syndrome: A Scoping Review.

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 concerning adaptation in families of individuals with DS with a focus on family adaptation rather than individual or dyadic adaptation. Three literature indexes were searched from 2017 to 2022, with 41 articles included. Foci of the studies included strength/resilience, stress/coping, and negative/challenge. Thirteen studies reported using a family framework. Multiple methodological approaches and family measures were used in the studies and are outlined. Findings from this review show there has been a shift in focus when researching families of individuals with DS from a negative and challenging experience to one of strength and resilience.

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.

Perceived Experiences of Korean Immigrant Mothers Raising Children With Disabilities in the United States.

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 based on the Resilience Model of Family Stress, Adjustment, and Adaptation. Directed content analysis was used. RESULTS: Six Korean mothers participated in the interview and 16 codes were identified in relation to the five concepts of the Resilience Model, namely family demands, family resources, family appraisal, family problem-solving and coping, and family adaptation. Overall, mothers thought their families were well-functioning and viewed their quality of life positively within the context of immigration despite experiencing various family demands. DISCUSSION: Findings of this study showed the resilience of Korean immigrant mothers and revealed the importance of understanding and considering unique cultural differences when providing care to this population.

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families.

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 the evidence base for developing interventions by using an mHealth application (mHealth apps) for these families. Using established guidelines for scoping reviews, we searched five databases, yielding 2149 articles. Following abstract and full-text review, we identified 38 articles meeting our inclusion criteria. Studies incorporated varied in regard to research designs, samples, measures, and analytic approaches, with only one testing an intervention by using mHealth apps. Across studies, data came from 4882 families. Common aspects of families' care coordination needs included communication and information needs and utilization of healthcare resources. Additional themes were identified related to individual, family, and healthcare contextual factors. Authors also reported families' recommendations for desirable characteristics of an mHealth apps that addressed the design of a personal health record, meeting age-specific information needs, and ensuring access to up-to-date information. These results will further the development of mHealth apps that are tailored to the needs of families with a child with DS.

Family Variables and Quality of Life in Children with Down Syndrome: A Scoping Review.

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 conducted to find studies published between January 2007 and June 2018. The initial search yielded 2314 studies; of these, 43 were selected for a final review. Researchers most often addressed family resources and family problem-solving and coping concerning child personal development and physical well-being. Little attention to child emotional well-being was observed, with none considering family appraisal of child emotional well-being. The relationship between family variables and child QoL rarely was the primary focus of the study. Methodologically, most reviewed studies used cross-sectional designs, were conducted in North America and based on maternal report. From future research considering the issues found in this review, healthcare providers can obtain an in-depth understanding of relationships between children and family variables.

Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation.

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 countries completed the FaMM. The analysis provided evidence of internal consistency reliability exceeding .70 for four of six FaMM scales for the entire sample. Across countries, there was a pattern of positive family management. Cross-cultural comparisons revealed parents from Brazil, Spain, and the United States had the most positive family management and respondents from Ireland, Italy, Japan, and Korea had the least positive. The rankings were mixed for the four remaining countries. These findings provide evidence of overall strong internal consistency reliability of the FaMM. More cross-cultural research is needed to understand how social determinants of health influence family management in families of individuals with DS.

Quality of life in individuals with Down syndrome aged 4 to 21 years.

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 online survey that included a consent form, a demographic questionnaire and the English version of KidsLife, which is a measure of children's QoL. RESULTS: Our results demonstrated moderate or favourable levels of QoL except for the emotional well-being domain among children with DS. The children's QoL showed no variance by gender. However, emotional and material well-being, interpersonal relations and social inclusion varied by age. CONCLUSIONS: The current findings provide important evidence that will help healthcare, educational and social services professionals to understand the multiple aspects of QoL in children with DS and support parents in their efforts to ensure the child's QoL. The results also point to the need to develop interventions aimed at improving QoL in those areas where children with DS are at increased risk for poorer QoL.

Connections between Family Assets and Positive Youth Development: The Association between Parental Monitoring and Affection with Leisure-Time Activities and Substance Use.

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 questionnaire. Multiple logistic regressions were performed to analyse the association between the parental monitoring and affection variables and the outcomes in terms of the children's lifestyles. The results indicate that parental monitoring is conducive to more constructive leisure and less non-constructive leisure and seems to be conducive to the prevention of substance use. Furthermore, parental affection is conducive to constructive leisure and the prevention of substance use. The discussion focuses on the fact that the family can be a protective resource associated with positive adolescent development.

Parent-Reported Contribution of Family Variables to the Quality of Life in Children with Down Syndrome: Report from an International Study.

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 variables reflecting the negative aspects of family functioning contributed to poorer QoL. DESIGN AND METHODS: A cross-sectional study was carried out. Invitation letters were sent to DS support groups. Upon agreement, the parents of the children were sent a link to an online survey that included a consent form, demographic questionnaire, and child and family measures. RESULTS: Results demonstrated the contribution of family demands to children's interpersonal relations. Family appraisals concerning the child and the family's ability predicted the children's physical and material well-being, personal development, self-determination, social inclusion, interpersonal relations, and rights. Family problem-solving served as a prominent predictor for children's physical and emotional well-being, personal development, interpersonal relations, and rights. Also, family resources predicted various aspects of children's QoL including physical, emotional, and material well-being, self-determination, social inclusion, interpersonal relations, and rights. CONCLUSION: Results confirmed the significant relationship between family and children's QoL variables. Family appraisal and family problem-solving were especially identified as significant predictors of children's QoL that can be targeted for family interventions, since the family variables are modifiable aspects of family life. PRACTICE IMPLICATIONS: Nurses can use current findings to develop interventions to enhance QoL of children with DS and families.

Adaptation to Technology Use in Families of Children With Complex Communication Needs: An Integrative Review and Family Theory Application.

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 integrative review, guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation was conducted to assess conceptual foundations and the state of the science of family adaptation among children utilizing AAC. Web-based searches were conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis and the Mixed Methods Appraisal Tool. Thirty-three studies met eligibility. Findings demonstrated that to enhance the science underpinning family adaptation to AAC use, future research should be grounded conceptually and address important components of the Resiliency Model. Work in this emerging area will identify and facilitate nursing efforts to assist families as they adapt to communication technology.

mHealth Family Adaptation Intervention for Families of Young Children with Down Syndrome: A Feasibility Study.

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 employed. Sixteen parents from eight families of young children with DS (under the age of three years) participated in this study between September 2015 and September 2016. A Wilcoxon signed rank test was used to identify the difference between the pre-test and post-test scores. RESULTS: All parents perceived that the program was feasible to use and they were willing to recommend the intervention to other families. Improvements were noted between pre-test and post-test scores. For fathers, views of their child's daily life became more positive, their child's condition became more manageable, their problem-solving communication became more affirming and their family functioning scores improved. Mothers reported less difficulty managing their child's condition. CONCLUSIONS: These findings suggest that FamilyAdapt-DS is a feasible m-Health intervention for families of young children with DS; however, scaling up of this program with larger and more diverse samples is needed to test its effectiveness. PRACTICE IMPLICATIONS: Nurses and other healthcare providers may find it helpful to use therapeutic conversations and mHealth interventions such as the one described in this paper to tailor the care they provide to families of young children with DS.

Family-clinician communication in the ICU and its relationship to psychological distress of family members: A cross-sectional study.

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 nurses) communication quality and symptoms of anxiety, depression, and stress among family members of chronically critically ill patients in intensive care units (ICUs). DESIGN: A cross-sectional study. SETTINGS AND PARTICIPANTS: The participants were 71 adult family members of 71 patients who required prolonged mechanical ventilation in ten ICUs at three medical centres in Korea. METHODS: Participants completed the Quality of Communication (QOC) questionnaire, Hospital Anxiety and Depression Scale (HADS), and Impact of Event Scale-Revised (IES-R). The data were analysed using correlation, bivariate regression, and multiple regression analysis. RESULTS: The mean (SD) QOC score for physicians and nurses was 50.3 (15.2) and 42.9 (14.2), respectively. Forty-six participants (64.8%) were identified as being at risk for having anxiety symptoms; 22 (31%) had a mild risk and 24 (33.8%) had a moderate or severe risk. More family members (76.1%) were at risk for having depressive symptoms; 15 (21.1%) had a mild risk and 39 (54.9%) had a moderate or severe risk. For post-traumatic stress symptoms, 48 (67.6%) were at risk. While the QOC scores for nurses were negatively associated with participants' HADS-depression scores (ß = -.01, p = .03), the QOC scores for physicians were not associated with the HADS or IES-R scores. This conclusion held after consideration of covariates. CONCLUSIONS: The findings suggest that communication between family members and ICU nurses may be more influential than that with ICU physicians on psychological distress of family members in Korea. However, further research is warranted to confirm this relationship. Future interventions to reduce psychological distress in family members of chronically critically ill patients may need to target ICU nurses for improving communication skills.

Breastfeeding Experiences of Mothers of Children with Down Syndrome.

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 breastfeeding process and their specific practices. This is a qualitative study with 10 participants, mothers of children aged between 2 months and 9 years. Snowball sampling was used for participants' selection, and semi-structured interviews conducted in participants' households. Three categories emerged: "the breastfeeding experience," involving the process of breastfeeding, the breast milk, feelings, and difficulties of this practice; "experiences of health care," encompassing the support received by health professionals, dissatisfaction with health services, lack of support in breastfeeding, and discontent with health professional behavior; and "learning about Down syndrome," with search for information by parents and advice to health professionals. In this study, we found evidence that breastfeeding success relies very much on mothers' willingness and support of health professionals, namely, nurses. Findings from this study suggest that support of a multidisciplinary team is essential to the success of breastfeeding. Greater awareness is needed regarding the unique rewards and challenges of breastfeeding these infants, as well as how families cope with the ongoing challenges. Therefore, this research is relevant to understand the experiences of mothers of children with DS about breastfeeding, identifying the inhibiting factors, in order to create more appropriate strategies to intervene and implement practices that contribute to the support and promotion of breastfeeding. Results will also influence the education of health professionals, emphasizing the importance of multidisciplinary teams for a comprehensive care and contributing to increasing evidence available about this topic.

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.

"It's a Long-Term Process": Description of Daily Family Life When a Child Has a Feeding Disorder.

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 from the child and intensifies well-intentioned but unguided parental mealtime efforts. Family has an essential influence on feeding; however, studies to date neglect to address the family context of feeding difficulty. In this study we describe, in the context of everyday life, family management of feeding when a child had a significant feeding problem. Parents of children with feeding problems were interviewed with the Family Management Style Framework components as a guide. Twelve parents participated, representing nine families of children with feeding disorder. Description of family management of feeding provides a foundation for development of family feeding interventions.

Family management of childhood chronic conditions: Does it make a difference if the child has an intellectual disability?

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 groups across the six FaMM scales. After accounting for the covariate effects of race, ethnicity, family income, and child age, we found significant differences in four of the six FaMM scales, with parents of children with Down syndrome reporting a significantly more positive view on the Condition Management Effort and View of Condition Impact scales and a significantly less positive view on the Child's Daily Life and Condition Management Ability scales than parents of children with a chronic physical condition. There were no significant differences between groups on the Family Life Difficulty and the Parental Mutuality scales. The analysis provided evidence of the applicability of the FaMM for studying families in which there is a child with Down syndrome and its utility in identifying the common and unique challenges of family management between the groups.