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.     

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.     

"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].     

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.     

Quality of life among Malaysian mothers with a child with Down syndrome

The purpose of this paper is to examine the quality of life (QOL) among mothers with a child with Down syndrome using The World Health Organization Quality of Life scale instrument. A convenience sample of 161 mothers was accessed through the various institutions which provide interventional or educational programmes to children with disabilities within two of the regions of the Borneo State of Malaysia (Sarawak). Nearly half of the group of mothers perceived their QOL as neither poor nor good (n = 73). An overall QOL score of 14.0 ± 1.84 was obtained. The highest and lowest domain scores were found for social relationship domain (Mean = 14.9 ± 2.1) and environmental support domain (Mean = 13.3 ± 2.1) respectively. Correlation analysis of selected background variables (i.e. locality, education, income and marital status) and overall QOL indicated rho (161) = 0.22–0.28 (P < 0.01). Inverse correlation between maternal age and overall QOL score was indicated, with rho (161) = ?0.17 (P < 0.05). Linear regression analysis indicated that the combination of these few variables together accounted for 14.5% of the QOL variability in the sample. Findings point to implications for priorities of care provisions by policy‐makers and care professionals in their practice.     

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.     

Mothers in postdivorce families caring for a child with cystic fibrosis

This study explored the experiences of mothers of children with cystic fibrosis (CF) in postdivorce family structures. In-depth interviews of mothers were conducted by registered nurses with expertise in CF. Interviews focused on responsibility for care of the CF child within the context of postdivorce families (e.g., extent of nonresidential fathers' involvement in children's care, communication between households). Interviews were audiotaped and transcribed verbatim. The constant comparison method was used for analyzing interview data. Marital transitions contributed to the closeness between mothers and children with CF, but they also added to the mothers' sense of being overwhelmed with responsibilities. It is likely that children and mothers are more at risk for stress-related problems when mothers are overburdened by the demands of caregiving, earning a living, and other responsibilities.     

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.     

Mental health of mothers caring for ventilator-assisted children at home

The complex management of ventilator-assisted children cared for in the home can place emotional and mental strain on parents, in particular, mothers. The purpose of this study was to explore the relationships among functional status of the child, impact of ventilator-assistance on the family, coping, social support, and depression in mothers caring for ventilator-assisted children at home. Thirty-eight mothers participated in the study. Almost half of the mothers experienced depressive mood symptoms. Impact on family was positively related to depression and social support was inversely related to depression. In addition, social support was a significant predictor of depression. The findings show that the high demands related to the care of ventilator-assisted children can be a significant risk factor for poor mental health outcomes of those mothers providing care at home. Interventions by mental health and pediatric nurses should focus on enhancing mothers' coping skills and assisting mothers in accessing a positive social network to help mediate the stress related to caring for their child.     

Mothers' decision-making processes regarding health care for their children

This research study explored mothers' decision-making processes regarding health care for their children. Identifying how decisions are made by mothers about health care for their children will assist health care professionals to be appropriate advocates for mothers, to improve quality of life, and to contain costs of health care for children. A sample of 114 rural mothers (51 with one child, 63 with more than one child) completed questionnaires identifying demographics, social support, client and professional interaction elements, self-determinism, competence in problem-solving skills, and relationships to responses to health care scenarios. Qualitative data were also gathered by structured in-depth interviews of 7 subjects. ANOVA, correlations, and factor analysis were completed to analyze data. Most of the mothers' decisions were based on the perceived degree of seriousness, mother's degree of fear of the child's condition, attitude of the health care provider, previous experience with the situation, and social support for the mother. There were no significant differences in decision-making processes by first time mothers and by mothers with more than one child. Implications include teaching mothers assessment skills to identify serious versus nonserious situations and to utilize other social supports.     

MENTAL HEALTH OF MOTHERS CARING FOR VENTILATOR-ASSISTED CHILDREN AT HOME

The complex management of ventilator-assisted children cared for in the home can place emotional and mental strain on parents, in particular, mothers. The purpose of this study was to explore the relationships among functional status of the child, impact of ventilator-assistance on the family, coping, social support, and depression in mothers caring for ventilator-assisted children at home. Thirty-eight mothers participated in the study. Almost half of the mothers experienced depressive mood symptoms. Impact on family was positively related to depression and social support was inversely related to depression. In addition, social support was a significant predictor of depression. The findings show that the high demands related to the care of ventilator-assisted children can be a significant risk factor for poor mental health outcomes of those mothers providing care at home. Interventions by mental health and pediatric nurses should focus on enhancing mothers' coping skills and assisting mothers in accessing a positive social network to help mediate the stress related to caring for their child.     

Leisure participation for school-aged children with Down syndrome

Purpose.?To describe leisure participation for school-aged children with Down syndrome and to investigate how factors, classified by the World Health Organisation's International Classification of Functioning, Disability and Health, influence their leisure participation.

Method.?Families in Western Australia with a child aged 5–18 years with Down syndrome were surveyed in a population-based study (n == 208) in 2004.

Results.?One-third of parents reported that their child with Down syndrome had no friends although half reported two or more friends. Factors affecting number of friendships included the child's functional ability, behavioural issues and parent's availability of time. Those children with higher functional independence scores in daily tasks were more likely to have two or more friends than those with lower functional independence scores (OR: 1.02, 95%% CI 1.01–1.04 for a single point increase in WeeFIM score). All children participated in predominantly solitary and sedentary leisure activities.

Conclusions.?Leisure participation was affected by complex factors both within and external to the child with Down syndrome. Further investigation of the relevance of these factors to leisure may enable more satisfying and meaningful participation in leisure for school-aged children with Down syndrome.     

Managing infant feeding practices: the competing needs of bulimic mothers and their children

Aim. This paper seeks to explain how bulimic mothers accommodated infant feeding demands in conjunction with managing their disordered eating practices. Background. Eating disorders are chronic and disabling illnesses primarily affecting women. There are few qualitative studies describing bulimia in the context of motherhood. Design. The study employed an inductive qualitative approach. Methods. A purposive sample of childbearing women (n = 16), who self‐defined as living with an eating disorder, were recruited. Data were generated from one‐to‐one interviews; a thematic analysis identified key issues. Results. Participants were primarily responsible for ensuring child/ren’s socialisation processes, including modelling appropriate dietary behaviours and these demands often conflicted with their personal needs for food restraint. Pressures to participate in social activities with children were widely experienced as stressful especially when these events focused on food. Participants viewed early and repeated exposure to ‘healthy’ eating as protective against their children acquiring an eating disorder and in this respect commercial child‐care facilities provided alternative environments for children to explore food‐related activities. Conclusions. Participants employed a variety of strategies to ensure children’s exposure to normalising influences and socialising processes. Concerns about personal competencies with respect to food preparation and storage were articulated by all participants. Relevance to clinical practice. Professionals involved with providing care to mothers and their infants are well placed to support bulimic clients and to foster confidence in their mothering skills. Early and appropriate intervention is key to effecting positive changes in bulimic patterns, with potential benefits to women’s future health and well‐being and that of their children.     

Factors influencing health promoting activities of mothers caring for ventilator-assisted children

The extensive care a ventilator-assisted child (VAC) requires when cared for in the home can impact the mother's ability to participate in health promotion activities. The purpose of this study was to examine health promotion activities and the relationships among functional status of the child, impact of the illness on the family, coping, social support, and health promotion activities of mothers who care for ventilator-assisted children at home. Thirty-eight primary female caregivers, mostly mothers, participated in the study and completed the Personal Lifestyle Questionnaire (PLQ), measures of child's functional status, impact of the illness on the family, coping, social support, and demographic data. Findings revealed that the mothers scored low on the nutrition, exercise, relaxation, and general health promotion subscales of the PLQ. Functional status of the child and coping were positively correlated with participation in health promotion activities, whereas impact of the child's illness on the family was inversely related to health promotion of the mothers. Regression analysis revealed that functional status of the child and coping were significant predictors of mothers' participation in health promotion activities. The high demands associated with caring for a VAC with poor functioning can be a significant risk factor for not participating in health promotion activities. Nurses need to help mothers with coping and finding resources to help mediate the stress related to caring for their child, thereby helping the mothers to maintain their own health.     

Child care use by low-income single mothers of preschoolers born preterm versus those of preschoolers born full term

This study describes prewelfare reform child care use by 64 primarily low-income single mothers (65.6% African American) with preschoolers (half born preterm). Forty percent used child care for more than 75% of their children's lives, 20% did when not employed. Preschool children born preterm were more likely to receive child care from nonrelatives throughout their lives than children born full term. Children with health problems used a greater number of child care arrangements. Findings suggest addressing child care issues with both employed and nonemployed mothers and adequacy of child care for children with special needs.     

Time use of mothers with school-age children: a continuing impact of a child's disability.

OBJECTIVE: The purpose of this study was to compare the time use of mothers of children with disabilities with the time use of mothers of children without disabilities. METHOD: Sixty mothers with children 3 to 14 years of age (30 mothers with children with disabilities and 30 mothers with children without disabilities) completed time diaries over seven 24-hour days. RESULTS: Significant differences were found between the two groups when comparing mean hours spent per week by mothers in occupations involving child-care activities and recreational activities. Mothers of children with disabilities spent significantly more time in child-care activities and significantly less time in recreational activities. In addition, mothers of children with disabilities reported fewer typical days and rated the quality of days as poorer. As children got older, the gap between the time mothers devoted to child care increased between the two groups. CONCLUSION: The type of occupations a mother participates in varies significantly dependent upon whether a child in the family has a disability and the age of the child. Professionals need to work collaboratively with families to assist parents to meet the family's daily needs particularly in light of the time demands of the mother.     

A Survey of Swedish Mothers' Views on Breastfeeding and Experiences of Social and Professional Support

The purpose of this cross-sectional study was to investigate conditions for breastfeeding among 452 mothers. Three different groups of women, participating in the Swedish health care system, were asked to complete a questionnaire about breastfeeding and related issues: 1) pregnant women attending the pregnancy care centres (n= 186), 2) women staying at the maternity wards after delivery (n= 171) and 3) women with two-month-old child attending the child health stations (n= 95). We found that the majority of the mothers were in favour of breastfeeding and intended to or had begun to breastfeed their infants. The main problems were “sore nipples”, “children who cannot take the breast” and “insufficient milk production”. Negative experiences of previous breastfeeding and overwhelming demands were motives for weaning. The personnel within the health care system were shown to be important for the mothers as regards advice and support. However, we found that certain routines could be revised to strengthen the mothers' attitude towards breastfeeding: 1) Information on and discussions about breastfeeding occurred infrequently at the pregnancy care centres. 2) Water or formulated milk was often given to the newborn baby at the maternity wards and 3) the participation of the fathers was limited. Continuous surveillance of the routines and education of the health care staff would be desirable to enable them to give the mothers the right breastfeeding support and advice at the right time.     

The meaning of respite care to mothers of children with learning disabilities: two Irish case studies

There is a growing interest in Ireland in the nature and significance of respite care for carers and those for whom they care. The relationship of individual stress with caring full time for a child who is learning disabled is well documented. Provision of respite care is seen as an important means of alleviating individual carer stress. Yet, the apparent benefits of respite care have been called into question. The present study looks at this issue within the context of respite service provision in Ireland for young people with learning disabilities. A phenomenological approach was used to explore the views of two mothers on respite care and, in particular, its personal significance for them within the context of their caring relationship for their children. The authors found that for these two mothers, whilst some of the predicted benefits of respite care were present, for example improved social activity, their use of respite care and the experience of separation initiated feelings of guilt and appeared to engender a degree of emotional stress. It is argued that providers of respite services in Ireland need to consider how they can support parents who use respite care so that they see its use as a mark of caring for their child and thereby alleviate such feelings of guilt.