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.     

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.     

"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].     

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.     

Care demands on mothers caring for a child with Down syndrome: Malaysian (Sarawak) mothers' perspectives

This paper examines the experiences of mothers caring for a child with Down syndrome in the Malaysian (Sarawak) context. Qualitative interviews were conducted with 26 biological mothers of children with Down syndrome aged 18 years and below. They were accessed through selected child health clinics, community‐based rehabilitation centres and schools using purposive sampling within two regions in Sarawak, one of the two Borneo States of Malaysia. Major themes emerging within the context of care demands were children's health, developmental delays, daily needs and behaviour issues. The insights obtained into the care demands experienced by mothers of children with Down syndrome have several implications for practice by care professionals.     

Differences in stress and coping for mothers and fathers of children with Asperger's syndrome and nonverbal learning disorders

Research conducted on families of children with disabilities shows that family cohesion and positive family outcomes are influenced by how mothers and fathers cope with raising their child with disabilities. This study was designed to examine stress and coping differences between mothers and fathers (n = 103) of children with Asperger's syndrome (AS) and nonverbal learning disorders (NLD). A repeated measure design was used to compare how mothers and fathers cope with caring for a particular child to control for differences in the severity and nature of the disability across children. Few studies that compare mothers and fathers do so at the couple level. Responses indicated that mothers had higher rates of stress related to family problems and pessimism about their child's future, higher rates of antidepressant use, and higher rates of therapy use than did fathers. Mothers found some coping strategies more helpful than fathers did. Maternal education and child's age also were related to some stress and coping variables. Implications for nurses and future research are discussed.     

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.     

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.     

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.     

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.     

The adaptation of mothers of children with intellectual disability in Lebanon.

In many Middle Eastern countries, including Lebanon, there is a stigma attached to families who have an intellectually impaired child. These families complain of isolation and lack of community resources that could help them cope with their circumstances to optimize the child's abilities. Health professionals and researchers should be cognizant of factors related to the process of stress adaptation to help families cope with their circumstances. The aim of this cross-sectional study was to identify factors that play a role in mothers' adaptation to the care of their intellectually impaired children. The results, based on a sample of 127 mothers from Lebanon, reveal that a high percentage of mothers had depressive symptoms. Multiple regression analysis demonstrates that by order of importance, the factors that determine maternal depression are family strain, parental stress, and family income. The conclusions about nursing implications from a cultural perspective are discussed and recommendations proposed.     

Self-reported adjustment, chronic sorrow, and coping of parents of children with Down syndrome

Mothers and fathers of children with Down syndrome were surveyed on overall patterns of adjustment and on frequency of chronic sorrow and coping behaviors. Fathers overwhelmingly (83%) depicted their adjustment in terms of steady, gradual recovery, while the majority of mothers (68%) reported a peaks-and-valleys, periodic crises pattern; chi 2 = 8.64, p less than .01. Mothers also reported higher frequencies for chronic sorrow as well as for behaviors such as self-blame and expression of negative affect. Thus, mothers and fathers in the same family may experience distinct differences in adjustment and coping as parents of a handicapped child.     

Hardiness in families of young children with asthma

AIMS: This paper reports a study (a) to assess whether there are cultural and gender differences in parents' general well-being, sense of coherence and perception of family hardiness when they have a young child with asthma; and (b) to examine the effects of parents' sense of coherence and well-being on family hardiness. BACKGROUND: Research on hardiness, a resilience factor that fosters adaptation over time, has been widely studied from an individual perspective, but less from the viewpoint of the family unit. In particular, no study was found that assessed how members of a couple interact to affect their family's hardiness. Consideration of this dyadic phenomenon may provide unique insight about how family members interact with each other faced with a challenge, such as the chronic illness of a child. METHODS: A cross-sectional research design was used with a sample of 137 two-parent families [76 from Iceland and 61 from the United States of America (USA)]. Questionnaires measuring sense of coherence, parents' well-being and family hardiness were used, and demographic data were also collected. RESULTS: The most striking differences in well-being were between mothers and fathers. In addition to a lower average on the total score for the well-being scale, mothers had poorer scores than fathers on the subscales of depression, self-control, vitality, and general health. Family hardiness differed between countries. The regression indicated that the individual's sense of coherence, depression and positive well-being (all actor effects), as well as the partner's anxiety (partner effect) all contributed significantly to family hardiness, as did nationality. CONCLUSION: Focused interventions for families with young children with asthma should be developed to enable them to feel more confident in using their resources to meet their demands and increase parents' general well-being and family adaptation. Research is needed to develop and test such interventions, particularly with diverse participant samples, encompassing not only a variety of ethnicities, but also a range of children's ages.     

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.     

Comparison of single-mother and two-parent families on metabolic control of children with diabetes

OBJECTIVE: To understand the impact of family structure on the metabolic control of children with diabetes, we posed two research questions: 1) what are the differences in sociodemographic, family, and community factors between single-mother and two-parent families of diabetic children? and 2) to what extent do these psychosocial factors predict metabolic control among diabetic children from single-mother and two-parent families? RESEARCH DESIGN AND METHODS: This cross-sectional study included 155 diabetic children and their mothers or other female caregivers. The children were recruited if they had been diagnosed with diabetes for at least 1 year, had no other comorbid chronic illnesses, and were younger than 18 years of age. Interviews and self-report questionnaires were used to assess individual, family, and community variables. RESULTS: The findings indicate that diabetic children from single-mother families have poorer metabolic control than do children from two-parent families. Regression models of children's metabolic control from single-mother families indicate that age and missed clinic appointments predicted HbA1c levels; however, among two-parent families, children's ethnicity and adherence to their medication regimen significantly predicted metabolic control. CONCLUSIONS: This study suggests that children from single-mother families are at risk of poorer metabolic control and that these families have more challenges to face when raising a child with a chronic illness. Implications point to a need for developing strategies sensitive to the challenges of single mothers.     

Wonders and worries of parenting a child with Asperger syndrome & nonverbal learning disorder

PURPOSE: To describe the prevalent joys and pressing concerns of parents of children with Asperger syndrome (AS) and nonverbal learning disorder (NLD). DESIGN AND METHODS: An exploratory study of written responses of 103 matched couples from survey data gathered in a larger study that examined the parental experiences of raising a child with AS and NLD. Participants were recruited from two national Internet Web sites for parents of children with AS and NLD. Data were qualitatively analyzed to develop categories and themes. RESULTS: Prevalent joys of mothers and fathers included child characteristics such as personality traits of the child, observing their child happy, and watching him/her grow, mature, and succeed. Parents' most pressing worries focused on adulthood and the future of their child. CLINICAL IMPLICATIONS: The findings of this study can inform the care given by nurses in the pediatric, family, and mental health settings. Family nurses are in a unique position to assess and respond to the special adaptive needs of families of children with learning disorders such as AS/NLD. As part of routine health screening and well-child visits, providers can ask about the joys and assess the beliefs and worries parents have; this could lead to reinforcement of their strengths and motivations and better meeting of their needs.