Individual and family adaptation in Taiwanese families living with down syndrome

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 completed mailed questionnaires. Data were analyzed using a principal component analysis and a mixed linear modeling. Gender, family demands, and family appraisal were significantly associated with individual health. Age of the child with Down syndrome, family demands, and family appraisal significantly accounted for family functioning. Family appraisal partially mediated the relationship between family demands and individual and family adaptation. Identification of family factors that influence adaptation will help in the development of culturally sensitive interventions to improve outcomes in Taiwanese families of children with Down syndrome.     

Parental satisfaction with an early family intervention program

The objective of this study was to evaluate parental satisfaction with a family intervention program. The program provides help and support for parents with newborns who have specific health problems (e.g., cleft palate and/or lip; Down syndrome). Four family subscales, personal (emotional and cognitive), marital, parental, and extended family and others, were examined. The majority of parents were satisfied with the intervention. Most felt that the intervention had helped them to adapt to the unexpected situation. They received guidance in discerning and discussing their own emotions and those of their partner or spouse, and the help they received gave them confidence about the care their child would receive. Results revealed significant differences in satisfaction levels (depending on the sex of the parent), the child's diagnosis, and annual income. Mothers of newborns with Down syndrome were more satisfied than fathers with the personal-emotional support they received. Low-income families were more satisfied than those with higher incomes for all subscales. On the parental subscale, those whose child had a cleft lip/palate were more satisfied than those whose child had Down syndrome. The results raised several important questions about this type of early intervention program, which will require further in-depth investigation.     

Families of children with Down syndrome: responding to "a change in plans" with resilience

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 solving and coping, and family adaptation in families of children with Down syndrome. Seventy-six mothers completed mailed questionnaires. Seventy percent of the mothers rated their family's overall functioning as either a 4 or a 5 on a 5-point scale (1 = poor; 5 = excellent). In their written comments, most mothers reported that their family was doing well or very well. Three family variables (i.e., family demands, family resources, and family problem-solving communication) were significantly associated with family adaptation. These results provide support for the belief that many families of children with Down syndrome respond to "a change of plans" with resilience. That is, they are able to endure, survive, and even thrive in the face of ongoing challenges associated with raising a child with Down syndrome.     

Parent perceptions of the psychological functioning of their children diagnosed with pediatric motility disorders and that of family members.

The aim of our study was to characterize the parental perceptions of the behavioral and emotional functioning of their children and families coping with gastrointestinal motility disorders. The American Pseudo-obstruction and Hirschsprung's disease Society sponsored an educational meeting for parents of children afflicted with a variety of pediatric gastrointestinal motility disorders. During the conference, parents completed a questionnaire pertaining to the behavioral and emotional functioning of the afflicted child and other family members. Parents perceived that the child's illness was more difficult on the parents than on the affected child or their siblings. Also, parents perceived support from professionals, family, and friends increased after the children were diagnosed with pediatric gastrointestinal motility disorders. Parents worried most about the health and medical management of their afflicted child. The most common behavioral problem of the afflicted children was fear of separation, whereas the most common behavioral problem of their siblings was jealousy. The majority of referrals to mental health professionals resulted from parental emotional problems or marital discord.     

Resilience in families of children with Down syndrome in Korea

This study aims to identify the factors related to resilience of the families of children with Down syndrome (DS). Data were collected from 126 parents of children with DS in Korea, using a self‐administered questionnaire. The age of the child, developmental level of the child, parental depression, and stress and strain were negatively related with family adaptation, whereas health of parents, family cohesiveness, flexibility, communication skills, supportive family/relatives, and quality of community service were positively related. Parental depression, family cohesiveness and communication skills were the factors that were strongly related to family resilience and adaptation. It is suggested that nursing interventions to decrease parental depression and increase family cohesiveness and communication skills should be included to increase resilience of the families of children with DS.     

Experiences of mothers of children with Down syndrome

This qualitative study explored the experiences and lifestyles of families in Turkey with children with Down syndrome, including the impact on family members. Twelve mothers with a Down syndrome child (three from each of the age groups 1-3 years, 4-6 years, 7-12 years and 13-18 years of age) participated in the study. The data were collected during in-depth interviews and were evaluated using qualitative data analysis methods. Families were affected socially, physically, economically and emotionally by having a child with Down syndrome.     

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.     

Age-Related Differences in Smiling and Personality in Down Syndrome

In this study, we explored age-related differences in smiling and related personality characteristics in individuals with Down syndrome. Participants were 65 children, adolescents, and young adults with intellectual disabilities aged 5–20 years (Down syndrome: 42, mixed etiologies: 23) and their parents. Both directly observable measures of social behavior (smiling frequency and duration) and parent report measures of child personality (subdomains of the Reiss profiles and Achenbach’s child behavior checklist) were examined. Significant interactions between group (Down syndrome versus mixed) and age were observed for smile frequency (decreased with age in Down syndrome), smile duration (decreased with age in Down syndrome), attention seeking (decreased with age in Down syndrome), and anxious/withdrawn (increased with age in Down syndrome). Relationships between smiling behavior and personality/psychopathology dimensions are also reported for both groups. Implications for developmental approaches to studying outcomes in specific genetic disorders are discussed.     

Stress-point intervention for parents of repeatedly hospitalized children with chronic conditions

Little is known about how to assist children with chronic conditions and their families cope with repeated hospitalizations. A two-group, pretest–posttest study was done to determine whether a community-based, stress-point nursing intervention for parents could decrease distress and improve child and family functioning. Fifty participants were randomly assigned to intervention or usual care control groups. The intervention focused on specific, parent-verified child and family issues. Three months after hospitalization, intervention parents had better coping and family functioning than those in the usual care group. Intervention parents' anxiety was initially higher and then lower. There were no child behavior differences between the groups after hospitalization. Intervention children had no developmental regression at 2 weeks and better developmental gains 3 months after discharge than the usual care children. Stress-point intervention for families and their children with chronic conditions improved family coping and functioning, and eliminated hospitalization-induced developmental regression. © John Wiley & Sons, Inc. Res Nurs Health 20: 475–485, 1997     

Families of Children with Developmental Disabilities: Assessment and Comparison of Self-Reported Needs in Relation to Situational Variables

Parents of children with a developmental disability completed a survey that sampled self-reported needs (information, support, giving explanations to others, community services, finances, and family functioning) in relation to situational variables, such as age (child and parents), type of educational service received by the child, number of siblings, marital status of parents, family income, parents' level of education, and the family's participation in support services. Families of younger children were found to have the greatest overall needs. Increased number of hours per week of employment by fathers was associated with reduced needs. There also was less reported need by families who had a child enrolled in a residential-care setting. These findings extend the assessment of family needs to a population and age of children not addressed in previous research. Recommendations for the types of professional services that should be offered to families on the basis of an assessment of need are presented and discussed.     

Religiosity, spirituality, and marital relationships of parents raising a typically developing child or a child with a disability

In order to discover if differences or relationships exist between religiosity, spirituality, and marital relationships, 111 parents raising a child with a disability (CWD) and 34 parents raising typically developing children independently completed self-report questionnaires assessing religiosity, spirituality, and marital relationships. Parents raising typically developing children scored higher on private and public religiosity and marital satisfaction than parents raising a CWD; mothers scored higher on religiosity variables than fathers. Mothers' ratings of spirituality and family type (disability or typically developing child) predicted their ratings of marital conflict. Higher spirituality and raising typically developing children were associated with higher ratings of marital satisfaction for both mothers and fathers. However, spirituality also moderated the relationship between private/public religiosity and marital satisfaction only for fathers. This information helps improve interventions for families raising CWD and adds to the literature on the interplay of religiosity/spirituality/marital relationship.     

Pain in Children with Down Syndrome: Assessment and Intervention by Parents

The aims of this study were: 1) to describe how parents assess pain in their child with Down syndrome; and 2) to examine the relationship between pain assessment and decisions by parents to intervene to relieve pain in the child. Twelve parents of school-age children with Down syndrome (ages 6-12 years) were interviewed. Data analysis followed Spradley's Developmental Research Sequence (1979). This included domain analysis, taxonomic analysis, componential analysis, and theme development. Four themes emerged from the data analysis. Theme 1: Being sensitive to verbal and behavioral attributes of pain in the child. Parents reported that they assessed pain in their child with Down syndrome through the child's use of words to express pain, pointing or showing pain location, crying, changes in usual activities, and seeking closeness to the parent. Theme 2: Recognizing emotional and social responses to pain. Parents reported that emotional responses (e.g., anger, fear, frustration, acting out) were part of the pain expressions of their child with Down syndrome. Theme 3: Identifying differences in pain expressions between child and siblings. Parents used strategies to assess pain based on their beliefs that the child was less verbal, slower to complain, and less bothered by pain than siblings. Strategies included questioning the child to elicit self-reporting of pain and observing the child's behaviors. Theme 4: Making decisions to intervene. Parents reported that actions to relieve pain in their child with Down syndrome included more psychologic measures than physical measures, but otherwise no differences were noted in the actions taken for the child and the child's siblings.     

Mediators for Internalizing Problems in Adolescents of Parents with Chronic Medical Condition

Parents’ chronic medical condition (CMC) is related to internalizing problem behavior in adolescents. Following the transactional stress and coping (TSC) model of Hocking and Lochman, our study examines whether the effect of illness and demographic parameters on the child’s internalizing problems is mediated by the ill parent’s quality of life, family functioning, and child adaptational processes. Participants were 160 adolescents (52 % female, mean age?=?15.1 years) from 100 families affected by parental CMC. Children completed a test battery including the Youth Self-Report. Family functioning was determined with the Interactional Problem Solving Inventory (marital functioning) and the Inventory of Parent and Peer Attachment (alienation from parents). Child adaptational processes were composed by cognitive processes, methods of coping, and child report of stress. Ill parents completed the Medical Outcome Study Short-Form and the Beck Depression Inventory, assessing quality of life. We used structural equation modeling to investigate the tenability of the TSC model. After a series of step-by-step modifications, the TSC model for children with parental CMC fitted the data closely. The ill parent’s quality of life, family functioning, and children’s daily hassles and stress mediated the effect of parental CMC on adolescent internalizing problems. Children’s active problem solving and social support seeking were not directly related to internalizing problems but significantly interfered with children’s self-esteem and stress. Child adaptational processes should be accorded a central role in support programs and interventions for children with parental CMC. Health practitioners and teachers are recommended to be alert for support needs in children.     

Pain,Fatigue, Family Functioning,and Attitude Toward Illness in Children with Juvenile Rheumatic Diseases

Pain and fatigue adversely affect the physical and psychosocial functioning of children with Juvenile Rheumatic Diseases (JRDs). Research investigating relations among disease severity and family functioning has produced mixed results. There is scant research examining the relations among illness attitudes and disease severity. Children (50 girls and 32 boys) with a JRD and their parents participated in this study. Parents completed a scale assessing family functioning and children completed information about their experience of pain and fatigue and attitude toward their illness. Regression analyses indicated that children experiencing more pain and fatigue were apt to hold negative attitudes toward their illness, and that parents reported lower family functioning when children were experiencing higher levels of fatigue. Research examining relations among child and reports of family functioning and children’s attitudes toward their illness will provide information for health care teams serving these children and their families.     

Mothers' perceptions of child care assistance: the impact of a child's disability.

OBJECTIVE: This study examined and compared mothers' perceptions of child care assistance provided by fathers and other caregivers. Awareness of child care division of labor will assist occupational therapists in addressing the needs of children with disabilities within the family context. METHOD: One hundred and thirty-five mothers living in two-parent households kept a time diary of their daily activities for 7 consecutive days using the Caregiver's Activity and Recording of Events Inventory and estimated the percentage of child care their partners performed, the amount of child care their partners performed, and their satisfaction with this division of labor. One third of the women had children with multiple disabilities, one third had children with Down syndrome, and one third had children who were typically developing. RESULTS: The majority of mothers in all three groups perceived that they were responsible for the majority of child care. There were no significant differences between groups in terms of mothers' perceptions of the amount of child care provided by fathers and other caregivers, including relatives, childsitters, nurses, school personnel, and neighbors. However, there were wide variations among families concerning child care arrangements and division of labor. Seventy-five percent of mothers indicated that they were satisfied with the division of child care labor between mothers and fathers, and no significant correlation was found between perceived percentage of child care performed and satisfaction with the division of labor. CONCLUSION: Mothers in this study were responsible for the majority of child care whether their child had a disability. The variation in number of hours that others spent performing child care activities within individual families suggests that there is no "best" or typical pattern. Occupational therapists need to collaborate with families to determine a system of accommodations to manage their daily routine that most effectively meets the family's needs.     

Parents' satisfaction at the birth of a handicapped child following a family intervention

The aim of this study is to estimate parents' satisfaction following a surgical procedure on their child. This includes support as well as additional information and documentation for the individual parent (cognitive and emotional), conjugal, parental and other family members. The majority of parents are satisfied with the treatment program, realizing that the treatment enables them to adapt to their new situation, that is, as parents of a newborn child suffering from health problems. This support allows them to recognize and talk about their own fears and emotions as well as those of their partner, to be reassured when facing their child's treatment, and to better understand the available resources. The results of the study show that there are significant differences in regards to the sex of the parent, the diagnosis of the child and the level of income. Mothers of children inflicted with Down's syndrome are more emotionally satisfied with the treatment than fathers, and lower income families are more satisfied with the treatment as well as with the sub-system of family health-care than middle and upper-income families. Parents of children with a labial and/or palatine cleft are more satisfied with the treatment in regards to the family plan than parents of children with Down's syndrome. These results raise several questions that, with more profound deliberation on the adequacy of early medical procedures with regards to the parents of children with health problems, shall not be overlooked. Let us highlight the heuristic qualities of this evaluative approach which possess the same relevance as the questionnaires developed in order to assess the families' satisfaction. After modifications, these questionnaires could eventually be used on different clientele as well.     

"It's not what you were expecting, but it's still a beautiful journey": the experience of mothers of children with Down syndrome

Aim: The purpose of this study was to describe qualitatively the experience of parenting for mothers of a child with Down syndrome and to explore what if any was the role of spirituality and organized religion in this experience. Method: A homogenous sample of eight mothers of children between 7 and 12 years of age with Down syndrome was recruited through a population-based source of families of children with Down syndrome in Western Australia. In-depth interviews were used to explore the mother's experience of parenting and to examine the role of spirituality and organized religion in their personal experience of mothering. Results: In this study, stressful life events recounted by the mothers included initial acceptance, developmental behaviour of the child, functionality of the child, health conditions and financial stress. Overall spirituality was described as a stronger and more dynamic source of support than organized religion in coping with stressors and life's challenges associated with raising a child with Down syndrome. Conclusion: Findings from this study revealed that being a mother to a child with Down syndrome can best be described as a mosaic of experiences, emotions and a journey of self growth. Both spirituality and organized religion to a greater or lesser extent were useful in mediating stress and supporting mothers particularly during challenging life events in the course of their journey with their child with Down syndrome. [Box: see text].     

Parental perceptions of sibling relationships in families rearing a child with a chronic condition

This study examined sibling relationships in families raising children with autism, Down syndrome, orthopedic conditions, and diabetes. Parents from 108 families independently completed the 28-item Schaefer Sibling Inventory of Behavior. Parents rated siblings as very empathetic, fairly often kind and involved, and rarely avoidant. Mothers rated sibling empathy higher than fathers did and older siblings more avoidant than younger siblings. Fathers rated male siblings kinder than female siblings; they also rated siblings of children with Down syndrome or autism more kind and involved than siblings of children with orthopedic conditions or diabetes. Sibling intervention efforts should consider these findings and be individualized according to the need of each child and family.