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.     

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.     

Maternal responses to the life and death of a child with a developmental disability: a story of hope

Losing a child is probably the most devastating event that a mother can experience. When a child with a developmental disability dies, this painful loss may follow months or years of exhausting parenting. How do mothers of children with developmental disabilities respond to this dual loss (the loss of their ideal child and then the loss of their actual child)? This project used a semistructured interview and the Grief Experience Inventory to explore the bereavement experience of eight mothers who have lost such children. It explored variables that are associated with optimal or complicated bereavement. It was found that most of the mothers were very successful in using cognitive coping strategies to find meaning and benefit in the life and death of their children and were able to continue seeing the world as benevolent and purposeful. Exceptional cases are discussed, and implications for helping professionals are offered. The findings of this study fill a significant gap in the theory of parental coping and bereavement.     

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.     

Utilization of parenting groups and consultation services as parenting support services by Japanese mothers of 18 month old children

Aim: To clarify the factors related to the utilization of parenting groups and consultation services by mothers with children aged 18 months. Methods: This was a cross‐sectional study using a self‐report questionnaire survey at health examinations in five health centers of an urban city in Tokyo, Japan, from July to September 2003. The final study population was comprised of the 371 mothers who provided information on both demographics and the utilization of services. Results: Of these 371 mothers, 166 participated in parenting groups since the birth of their 18 month old child. Logistic regression analyses indicated the following factors related to such participation: past experience in the use of services provided by the local government, trust in the specific group, and worries about their children. Participation in the parenting groups was not related to child‐rearing anxiety or mental health status. The participants indicated that the groups provided friends and child‐rearing information and alleviated stress. Worries about children and past experience in the use of public services would enhance the utilization of services. Conclusion: It is essential for service‐providers to offer services specific to the situation or desires of mothers. Mothers might need both consultation services and support groups to reinforce the mother–child relationship, for social support, and to freely discuss worries with both professionals and peers.     

The relationship between maternal chronic pain and child adjustment: the role of parenting as a mediator.

The role of parenting in the relationship between maternal chronic pain and negative child outcomes, including internalizing, externalizing, and social and health problems, was investigated. Parenting strategies used by mothers with chronic pain were compared to parenting strategies used by a control group of mothers without pain. Thirty-nine mothers experiencing chronic pain, their 55 children, 35 pain-free mothers, and their 48 children participated in the study. The results showed that for mothers with chronic pain, dysfunctional parenting strategies and the quality of the mother-child relationship were related to negative child outcomes. Mothers with chronic pain were more likely to engage in lax parenting and report reduced relationship quality with children than were control mothers. For the chronic pain group, over-reactive parenting was found to mediate the relationship between maternal physical functioning and child adjustment. Dysfunctional parenting strategies may constitute part of the risk that maternal chronic pain poses for children. The similarities between the impact of maternal chronic pain on child adjustment and that of other maternal stressors, such as depression, are discussed. PERSPECTIVE: In mothers with chronic pain, poor maternal physical functioning was associated with increased maternal over-reactive behavior that was in turn related to poor child adjustment. Maternal over-reactive behavior did not, however, differ in chronic pain and control mothers.     

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.     

Parenting and Child Outcomes of HIV-Infected African American Mothers: A Literature Review

Parenting young children while living with HIV is an important public health concern. This article reviews maternal HIV and the impact it has on the parenting experience of African American mothers. Because living with HIV has been considered a family illness, the Family Systems Model provided a framework for this article. The model demonstrated an important link between maternal HIV and its impact on the health and wellbeing of not only the mother and her children, but her parenting and family roles as well. Research has documented an association between maternal HIV and negative parent–child outcomes among African American mothers. I examined studies on parenting and child outcomes among African American mothers living with HIV. The review assists in conceptualizing parenting with HIV as an area of increasing importance in health services delivery to HIV-infected African American mothers who are caring for young children.     

The lived experience of fathers who have children with asthma: a phenomenological study

Asthma is a common chronic illness of childhood and a major cause of school absenteeism and hospitalization. When a child is diagnosed with asthma, parents become responsible for the long-term management of a chronic condition that is characterized by unpredictable and irregular episodes. Much of the research concerning parenting children who have asthma had focused on mothers. Paternal experiences in caring for a child with asthma have received little attention. In this phenomenological study, van Manen's (Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. The Althouse Press: London, ON) method of inquiry was used to explore the lived experience of fathers who have children with asthma. Eight fathers with children aged between 7 and 11 years who had been diagnosed with asthma were interviewed. Five themes were identified: feeling relief in knowing the diagnosis, learning the ropes, being vigilant, living with concern, and being comfortable with asthma management. Understanding the experience of fathers who have children with asthma and gaining insight into their needs and concerns are essential first steps to providing supportive nursing care.     

Mothers' experiences of parenting a child with attention deficit hyperactivity disorder

Title. Mothers’ experiences of parenting a child with attention deficit hyperactivitydisorder. Aim. This paper is a report of a study to explore the perceptions and experiences of mothers parenting a child with attention deficit hyperactivity disorder. Background. Previous quantitative studies have focussed on parenting styles and treatments, and highlight that attention deficit hyperactivity disorder has a negative impact on family functioning. However, fewer researchers have explored maternal experiences of parenting a child with this disorder. A narrative‐based feminist approach can provide greater insights into complex issues related to mothering a child with this disorder. Method. Data were collected in 2007 with a volunteer sample of 11 mothers of children with attention deficit hyperactivity disorder via in‐depth interviews. Analysis was completed by listening for self‐evaluative statements, paying attention to meta‐statements and by identifying both consistencies and incongruities within participant’s narratives. Findings. Dominant issues identified were: It’s been 10 years of being on edge: The caring responsibility as overwhelming; If I had my time over again, I wouldn’t tell the truth: Stigmatized, scrutinized and criticized; What have I done? What did I do? How come I’ve got this child: Guilt and self‐blame and He doesn’t stand a chance: Mother as advocate. Conclusion. Mothering a child with attention deficit hyperactivity disorder is stressful and demanding, and mothers felt marginalized. Media portrayal of this disorder contributes to confusion related to causes, diagnosis and treatment choices. More education for healthcare professionals is needed to enable them to give appropriate guidance and support to enhance outcomes for children and their parents.     

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.     

Sense of Coherence,Parenting Attitudes and Stress among Mothers of Children with Autism in Hong Kong

Background The moderating and mediating relationships among sense of coherence, parental attitudes and parenting stress for caregiving parents of children with autism were tested. Materials and Methods One hundred and fifty‐seven mothers of children with autism recruited from representative community service centres in Hong Kong completed the Chinese versions of Sense of Coherence Scale (SOC), Confidence and Acceptance subscales of Parent‐Attitude Survey Scales and Parenting Stress Index Short Form. Results Accounting for mothers’ demographic background, SOC showed a moderating effect with child's symptoms and parenting stress. Mothers with a strong SOC perceived lower stress than their counterparts even when their children presented with more severe autistic symptoms. Two proximal factors in parenting, parental confidence and acceptance of the child, were found to partially mediate SOC and stress. Conclusions The stress experience of mothers of children with autism is related strongly to a global sense of coherence as well as more specific parenting attitudes.     

Parenting stress and related factors in parents of children with Tourette syndrome

The objective of this study was to assess the stress of parents and its influencing factors in caring for children with Tourette syndrome. A total of 150 subjects, either fathers or mothers of children diagnosed with Tourette syndrome between the ages of 6 and 12, were recruited by purposive sampling from the membership roster of the Taiwan Tourette Family Association. Study tools included a Parenting Stress Index Form and Social Support Index Form. The standardized score for parent perception of parenting stress was 83.5. The main stressor of parents of children with Tourette syndrome was found to be child care difficulties. A correlation was found between parenting stress and child gender, age, school situation and disease severity; parent age and family income. A significant negative correlation (r=-.459, p<.01) was found between social support and parenting stress. It was revealed that social support had a significant effect on parenting stress in this study. Multiple linear regression analysis found disease severity and family income to be the variables with the greatest predictive power for parenting stress, explaining 42% of total variance. Results showed that factors affecting parenting stress included family income and disease severity. These findings should help clinical professionals develop more effective health care strategies to address the needs of children with Tourette syndrome and their parents.     

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.     

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.     

The experiential meaning of well-being for employed mothers

Employed mothers must constantly juggle and balance the multiple roles they face on a daily basis, which can be overwhelming and may adversely affect well-being and health. Findings are presented from a naturalistic-inquiry study that explored how employed mothers with preschool-age children experience positive well-being in their lives. Interviews were conducted with 16 mothers who worked full time and had at least one preschool-age child living at home. Findings included seven categories reflective of experiential well-being: mutuality, spirituality, child-centeredness, acceptance, happiness, security, and enrichment of the world. Results of this study are anticipated to contribute to a foundation for theory development and subsequent theory testing for promoting well-being.     

"Living with risk": mothering a child with food-induced anaphylaxis

Food-induced anaphylaxis (FIA) affects an increasing number of children and families encountered in a variety of nursing environments. Sensitive nursing care requires consideration of the psychosocial impact of the condition. The purpose of this phenomenological study was to arrive at an understanding of the mother's lived experience of parenting a child with FIA. Semistructured interviews were conducted with six mothers of children 6 to 12 years old considered at risk for FIA. Data analysis was carried out concurrently with data collection, revealing "Living with Risk" as the essence of the experience, supported by five themes: "Living with Fear," "Worrying About Well-Being," "Looking for Control," "Relying on Resources," and "It Is Hard But It Is Not." These findings should assist nurses in meeting families' education and support needs related to FIA.