Parents' perceptions of oral health, general health and dental health care for children with Down syndrome in Sweden.

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 child's general health and 74% their child's oral health as good or very good. Parents, who rated their child's oral health as poor (8%), also reported that dental procedures were difficult. Children received dental care at general (55%) and specialist clinics (53%). Ninety-four percent of parents of children receiving specialist dental health care were satisfied compared to 70% of parents with children in general clinics. The parents most valued characteristics of dental professionals were patience (63%) and their ability to engage the child (68%). Parents wanted multidisciplinary collaboration. CONCLUSION: Most parents rated their child's general and oral health as good or very good. Children with poor oral health were also reported to have difficulties coping with dental procedures. Parents wanted dental care to be tailored to meet their child's unique needs. They wanted dental professionals to have knowledge about children with a need for special care. Lastly, they requested multidisciplinary collaboration.

Sleep problems in Korean children with Down syndrome and parental quality of life.

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 children with DS and their parents' quality of life (QOL). METHOD: A cross-sectional survey was conducted in September and October of 2017. Parents of children with DS were recruited from an online self-support community for parents of children with DS in South Korea. The mean age of the parents and children with DS was 40.40 years (SD = 5.09) and 7.89 years (SD = 3.03), respectively. Children's sleep problems and parents' QOL were assessed using the Children's Sleep Habits Questionnaire and the abbreviated version of the World Health Organization Quality of Life scale, respectively. RESULTS: Results revealed that 83% of the parents reported that their child with DS experienced sleep problems. Children with DS had significantly more bedtime resistance, night waking, parasomnias and sleep-disordered breathing than did typically developing children. In addition, their Children's Sleep Habits Questionnaire scores were higher than those of typically developing children. Moreover, being older, being male and having more severe developmental delays were significant risk factors for sleep problems among children with DS. Furthermore, sleep problems in children with DS negatively affected parents' QOL. CONCLUSIONS: Sleep problems negatively affect children with DS as well as their parents; therefore, health care providers should be aware of these issues and help parents manage sleep problems proactively.

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, child's 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.

Caring for children with Down syndrome and their families.

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 practice for children with Down syndrome are presented. Finally, implications for pediatric nurses practicing in an expanded role are discussed.

Family-provider relationships and well-being in families with preterm infants in the NICU.

OBJECTIVE: 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. DESIGN: The study's design was descriptive and correlational. SETTING: The study took place in 5 NICUs in midwestern United States. PARTICIPANTS: The study included 55 mothers of preterm infants hospitalized in the NICU. MEASURES: Self-report measures: the Family-Provider Relationships Instrument-NICU, Ryff's measure of psychologic well-being, and the General Scale of the Family Assessment Measure. RESULTS: Mothers of preterm infants who depicted their family's relationship with their child's primary health care providers in the NICU as positive and family-centered reported more satisfaction with the care received. In addition, these mothers expressed a greater willingness to seek help from health care providers. When mothers reported a discrepancy between what they wanted the family-provider relationships to be like and what they believed the relationship was like, they were less satisfied with care received. Mothers who wanted and believed they had positive family-centered relationships with providers were more satisfied with the care received and they reported higher levels of psychologic well-being. CONCLUSION: The nature of the relationships that families develop with health care providers in the NICU may have a profound influence on how individuals and families respond to the experience of having a preterm infant. Health care providers who incorporate the key elements of family-centered care into their practice can have a positive influence on well-being in families of preterm infants.

Maternal perceptions of family-provider relationships and well-being in families of children with Down syndrome.

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 with Down syndrome. Data from 89 mothers are the focus of this report. The results indicate that when mothers of children with Down syndrome believe that their family's relationship with health care providers is positive and family-centered, they feel more satisfied with the care that their child is receiving and they are more likely to seek help from health care providers. In addition, when a discrepancy exists between what mothers want the family-provider relationship to be and what they believe the relationship is, mothers feel less satisfied with the care that their child is receiving. Finally, higher levels of individual and family well-being are reported by mothers who (a) want, and believe they have, positive family-centered relationships with providers, and (b) feel more satisfied with care received. Results of this study contribute to a better understanding of the role that health care providers play in individual and family adaptation to chronic conditions.

Death of a sibling: five sisters, five stories.

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, and this "unique" definition of reality influences the child's behavior. Giving children a chance to "tell their stories" may help nurses and other professionals to understand the meanings and values that are guiding how children respond following the unexpected death of a sibling.

Parental and family well-being in families of children with Down syndrome: a comparative study.

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-report measures. No significant differences were obtained between the two groups of families on any of the measures of individual, marital, or family functioning. The results of this study support a competence model in which parents may respond to the challenges associated with parenting a child with Down syndrome with resilience and adaptive functioning.

Symbolic interactionism: a perspective for understanding parent-nurse interactions following the birth of a child with Down syndrome.

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 others need to be explored. Next, the central concepts important to the symbolic interactionist perspective will be reviewed. Then, qualitative data from an ongoing study of 90 parents of children with Down syndrome (ages 3 months to 18 years) will be presented to illustrate how symbolic interactionism can be applied to the to care of children with Down syndrome and their families. Finally, implications for nurses working with families that include a child with Down syndrome will be addressed.