From Advocate to Activist? Mapping the Experiences of Mothers of Children on the Autism Spectrum

Background For parents of disabled children, the role of advocate often develops to a level of frequency and complexity that other parents do not usually face. This paper considers whether this high level of advocacy translates into a form of activism on the part of mothers and if so, why this shift might occur. Materials and Methods The broader study from which the data are taken aimed to explore the experiences of living with autism. Qualitative methods were used to understand how participants made sense of their lives and negotiated the social world. This analysis is based on interviews with 36 mothers of children on the autism spectrum. Results Most mothers adopted an enhanced advocacy role acting either independently or collectively through involvement with support groups. In both cases, some mothers demonstrated an activist role and extended their efforts towards campaigning for change outside of their families. Conclusions Mothers’ experiences do not sit comfortably within existing articulations of activism but suggest that advocacy and activism may be experienced on a continuum. For many mothers, advocacy and activism are a major part of the experience of mothering a disabled child yet this remains a largely unrecognized role.     

Reducing burnout in mothers with an intellectually disabled child: an education programme

Title. Reducing burnout in mothers with an intellectually disabled child: an education programme. Aim. This paper is a report of a study conducted to examine the effect of participating in an education program on burnout for mothers of children with an intellectual disability. Background. Mothers with an intellectually disabled child are prone to suffer from excessive stress and burnout. There is limited evidence for the effectiveness of education interventions aimed at reducing burnout levels in this population. Methods. After baseline screening, mothers who agreed to participate (n = 90) were randomized to an intervention or control group. The intervention group participated in an interactive education programme for 1 hour, in addition to using an educational booklet designed and presented by the researchers. The booklet contained information about the characteristics of intellectually disabled children, the specific health care and education they require, non‐profit organizations and foundations providing assistance, and ways in which mothers can cope with stress. The control group received the same intervention separately after completing the post‐test. The study was carried out from 2004 to 2005. Findings. Intervention group members reported fewer episodes of emotional burnout compared to the control group, indicating that participation in a nursing education programme reduced the level of burnout experienced by mothers who have an intellectually disabled child. There were no effects of the education programme on perceptions of personal success, i.e. mother’s feelings of competence and successful achievement in care of their intellectually disabled child. Conclusion. Nurse‐administered education should be provided for mothers who have an intellectually disabled child in order to reduce the degree of emotional burnout that these mothers typically experience.     

The mothering experience: perspectives of women from Indonesia married and living in Taiwan

The purpose of this study was to explore the mothering experiences of Indonesian women married to Taiwanese and living in Taiwan. Women with children aged from three to twelve years old were qualified to participate and we used snowballing to recruit participants. A total of 21 mothers agreed to participate in semi-structured interviews, the contents of which were recorded and immediately transcribed following each session. All 21 mothers completed their interviews, in which two common themes appeared. These were: (1) reflection: searching for self-worth through the mothering role and (2) projection: spending all of the "self" for their children. The results of this study provide valuable information necessary to understand the experience of Indonesian mothers in Taiwan.     

Outcome of children with prenatally diagnosed central nervous system malformations.

OBJECTIVE: To study the outcome of pregnancies with a prenatally diagnosed central nervous system (CNS) malformation. METHODS: Leiden University Medical Centre is a tertiary referral center for fetal ultrasound and invasive prenatal diagnosis. Maternal and neonatal records of prenatally diagnosed CNS malformations were retrospectively reviewed over a 6-year period (1993-1998). Information on current development of surviving children was obtained by contacting the care-giving pediatric neurologist. RESULTS: During the study period 124 fetuses were diagnosed with a CNS malformation. Data on pregnancy and delivery were available for 118 pregnancies. Additional malformations were present in 47% of fetuses (55/118). A total of 46% of pregnancies (54/118) were terminated, and 15% (18/118) ended in spontaneous intrauterine death. A total of 39% of pregnancies (46/118) resulted in live birth, and 29 of the infants were still alive at the age of 3 months. One child was lost to follow-up, one infant died at the age of 4 months, and two children died at the age of 3 years. Psychomotor development of the remaining 25 children was normal for five, slightly disabled for seven, moderately disabled for five and severely disabled for eight. CONCLUSION: Due to the high rate of termination of pregnancy and to the frequent association with other anomalies, the survival rate of pregnancies in which a CNS defect had been diagnosed prenatally was only 25%. More than 50% of surviving children were moderately or severely disabled.     

Impact of chronic illness in children on parental living conditions. A population-based study in a Swedish primary care district.

In a geographically defined child population aged 0-15, every twelfth child suffered from chronic illness. Their parents and randomly selected control children's parents were asked about their living conditions using questionnaires. Non-responders (30%) had the same sociodemographic profile as responders. The socioeconomic level in index families (n = 95) was lower than in control families (n = 166). Both parents worked fewer hours in index than in control families. Index mothers had more health problems and sick days than control mothers. The parents' social relations were most hampered by having children with allergic disorders or mental retardation. Despite reduced hours, more absence from work to care for sick children, and reduced leisure activities, two thirds of the parents of moderately/severely disabled children found it difficult to cater adequately to the needs of their child. A family approach is recommended to provide comprehensive care of children with chronic illness, in which both specialized and primary care are needed.     

Toward an understanding of mothering: a comparison of two motherhood stages.

OBJECTIVE: This study sought to understand the tasks and activities involved in the caring and nurturing work of mothering, a common and important occupation for many women. METHOD: In-depth, semistructured individual interviews were conducted with 40 mothers: 20 mothers of preschool-age children and 20 mothers of young adults. In addition, participants completed a questionnaire describing the tasks and activities that they currently engage in when caring for their children. RESULTS: The activities involved in mothering are different for the mothers at the two stages of mothering examined. The mothers of preschool-age children are very involved in caretaking tasks and meeting the basic needs of the child, whereas the mothers of young adults are involved in emotional and supportive type activities. Mothers at both stages are involved in caring and nurturing work but this work evolves and changes as children mature. CONCLUSION: These findings extend our awareness of mothering and the tasks and activities involved in the occupation of mothering at both the preschool stage and young-adult stage.     

Single mothering as experienced by Burundian refugees in Australia: a qualitative inquiry

Background

Refugee mothers have fled from their homeland to escape persecutions with their children only to find other threats to their well-being in the new country. Building on previous research, it is known that being a new immigrant is challenging and requires adaptation. The adaptation process, known as acculturation, may not be successful leading to psychological distress. It is also known that a generation gap can occur when children acculturate faster than their parents. What was lacking was understanding about the experiences of single refugee mothers.

Methods

Interpretative phenomenological study was undertaken to explore the lived experiences of eight Burundian refugee single mothers in Australia. Data were collected by in-depth interviews. Each interviews were transcribed and analyzed using thematic analysis.

Results

Findings revealed three themes. First theme ‘Traditional mothering practices of Burundian culture’ illustrated mothering strategies as practiced prior to their arrival in Australia including mothering with sufficient social support, strong position of parents, and regular use of physical disciplining. Second theme ‘Challenges identified after arrival to new country’ revealed that mothers felt their children acculturated faster than themselves which led to intergenerational gap. This has also led participants to live in a continuous dilemma, experiencing inner conflicts and struggles associated with their mothering practices, especially when mothers had arrived with a lack of knowledge relating to acceptable mothering practices in a new culture. Final theme, ‘Reforming family life in Australia’ highlighted the decisions made by single refugee mothers which is to embrace both new and original cultures, leading to successful acculturation. However, lack of appropriate knowledge of acceptable mothering practices led to involvement of legal authorities who threatening to remove children from the mother’s care. This has led mothers feeling change of power from ‘mother to child, ‘to child to mother’, raises concerns for family wellbeing.

Conclusions

A need for parenting information when entering a new country including education about any legal obligations for parents such as a Child Protection Act will assist successful acculturation. As nurses are likely to encounter refugee single mothers, they are well placed to provide support and education to new refugee single mothers.

     

Maternal Time and the Care of Disabled Children

Caring for disabled children has become increasingly the responsibility of parents, even when the medical care is complex. To assess the time commitment required, 133 mothers of disabled children were asked to estimate by specific task categories the extra time required to care for the children. Total average daily care time was reported at 12 hours and 6 minutes, with 6 hours and 30 minutes consumed in "vigilant" tasks (i.e., watching a child who cannot be left alone and/or providing emotional support). Multiple regression analysis showed an increase in total caregiving hours associated with a younger child who was more physically and mentally impaired, and who required more medical treatments. The amount of time required by parents to care for their chronically ill children of necessity results in lost opportunities. Because this burden is experienced primarily by women and because professional nurses could alleviate some of the burden, this issue deserves further study.     

"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].     

Alternate child care, history of hospitalization, and preschool child behavior

BACKGROUND: With more single mothers entering the workforce due to welfare reform efforts, more hospitalized children from single-parent families will have experienced alternate child care arrangements where routine care is provided by adults other than the child's mother. OBJECTIVES: To investigate with secondary analysis of data whether experience with alternate child care has a moderating effect on the relationship between hospitalization and behavior of preschool children living in female-headed single-parent families. METHOD: A sample of 60 preterm and 61 full-term children who were 3, 4, or 5 years old was recruited for the larger longitudinal study. Behavior problems were measured with the Child Behavior Checklist. History of hospitalization and alternate child care arrangements were measured with the Life History Calendar. RESULTS: Preschool children who experienced hospitalization without alternate child care experience had more somatic complaints, but those with both hospital and alternate child care experience had fewer aggressive behaviors than other children. For children with a history of hospitalization, aggressive behaviors decreased as the proportion of the child's life in alternate child care increased. CONCLUSIONS: Experience with alternate child care may ameliorate some of the negative effects of hospitalization, and potentially other novel and negative experiences, for preschool children. This could be due to child care providing positive experiences with separation from the mother, a peer group with which to talk about the novel experience, or actual instruction about the novel experience.     

Mothering young children with disabilities in a challenging urban environment.

OBJECTIVE: This study examined the occupations of mothering very young children with physical disabilities. METHOD: Two single, urban, Black mothers in their mid-20s were interviewed with a semistructured protocol. The audiotaped, transcribed data were analyzed with a phenomenological method. RESULTS: The context of the challenging urban environment was a constant influence that shaped the participants' occupations of mothering. The major over-arching theme derived from the data was that mothering was "what I got to do" in relation to their particular child. Two sub-themes were identified: (a) mothering as caring and (b) the impact of social supports on the occupations of mothering. CONCLUSION: To plan meaningful, effective interventions, occupational therapy practitioners need to understand the context in which mothering occupations occur and to ensure that mothers' caring occupations and social support needs are addressed in the therapeutic partnership.     

Utilization of maternal and child health services in rural areas of Jammu and Kashmir.

Researchers analyzed data on 100 14-45 year old mothers who had a child whose age was 0-3 years old and lived in Gurihaker village in Zachaldara block in Kupwara district of Jammu and Kashmir in India to determine use of maternal and child health care (MCH) services, their perception of needing these services, and the relationship between MCH utilization and social, economic, and demographic factors. 68 had 1-3 children. Only 57 registered with a health facility, mainly primary health centers (26), during their last pregnancy. Most (30) registered during the 4th-6th month of pregnancy. 56.14% of registered mothers visited the facility 4 times. The major reason for visiting the facility was problems (87.72%). 60 mothers were not vaccinated against tetanus. Only 15% of the 40 who did receive the tetanus toxoid received 2 doses. Just 54 took iron/folic acid tablets. Only 13 went to a facility for postpartum follow up; 8 went to a private practitioner. 84% gave birth to their child a home. A traditional birth attendant (dai) were present for all home births. The leading reasons for delivering at home were tradition (79.76%), no obstetric problems (75%), family demanded a home delivery (61.9%), convenience (48.8%), and high hospital costs (48.85%). Reasons for having a dai present included tradition (77.38%), family preferences (65.47%), privacy (60.71%), and less expensive (47.61%). Only 18 children did not receive any vaccinations. 29 used family planning methods especially female sterilization (10) and copper T IUD (7). 61 believed they need prenatal services. 78 perceived the need for intranatal care. 70 and 80 expressed the need for child care/immunization and family planning, respectively. Women of the high socioeconomic group, 15-29 years old, and with 3 children were more likely to adequately use prenatal care. These results highlighted the need to develop a strong health education program using the mass media, recruiting more female health guides than male, and training dais in MCH services.     

Adolescent mothering: assessing their parenting capabilities and their health education needs

Adolescent mothering was investigated in 95 adolescent mothers who were 15-19 years old. Adolescent mothering behavior was found to be related to age of the mother, grade in school, sex of the infant and maintenance of a relationship with the baby's father. Specific deficits were noted in areas of social, emotional and cognitive growth-fostering behavior and in response to infant distress. Health teaching, support, reinforcement and anticipatory guidance were some implications for nursing.     

Intensive‐invisible mothering: The experiences of mothers of adult children with dual diagnosis

The experiences of mothers of adult offspring with a dual diagnosis have rarely been discussed in the literature, despite growing involvement and responsibility of mothers for daily care of their children. Interpretive phenomenological analysis of in‐depth interviews was used to examine the mothering experience of 12 mothers of adult offspring with dual diagnosis. The analysis revealed that the mothers’ experiences were intensive, abusive, and isolating, and simultaneously rendered them invisible, undervalued, or ignored by professionals, community, and family. Furthermore, the analysis indicated that this experience of ‘intensive‐invisible’ mothering was promoted or prevented by three intersecting mechanisms, identified here as discursive, institutional, and spatial. The research contributes to the fields of knowledge regarding family members of people with mental health problems, by adding a theoretical layer that takes into account how public discourses of motherhood mould women’s accounts of their mothering experience. Practical implications of these findings for professionals working with these mothers are discussed. Specifically, therapeutic intervention that focuses on identifying and modifying the underlying psychological and social processes associated with the ‘intensive‐invisible’ mothering experience could be useful.     

Transition experience of parents caring of children with epilepsy: a phenomenological study

BACKGROUND: Families who have a child with epilepsy show a significant impact on both the dynamics of the child's development and family systems in a social context. Knowledge of a family's lived experience in dealing with the early stages of their child's illness will provide a deeper understanding of their life and coping process. Most studies have focused on the child's developmental issues, parental attitudes, coping strategies and the child's adjustment. In order to assist families to cope with the early stage of having a child with epilepsy, nurses need to understand the nature of a family's lived experience. OBJECTIVE: The purpose of this study was to investigate the essence of the family health-illness transition experience from the parental perspective when a child is afflicted with epilepsy. DESIGN: Colaizzi's phenomenological approach was used. In-depth interviews were conducted with ten couples with regard to the first one and a half years after the diagnosis of epilepsy. SETTINGS AND PARTICIPANTS: Ten couples from two medical centers in Taiwan participated in the study. The age range of the children at diagnosis was 0.2-4.3 years. METHODS: Open attitude and imaginative variation techniques were used to investigate the meanings of the experience. This study used Colaizzi's method with both destructured and restructured analysis. Lincoln and Guba's trustworthiness criteria were employed to evaluate methodological rigor. RESULTS: Three concepts emerged: parents' psychological reactions, parental coping patterns and family resources. The parents' psychological reaction was that of being emotionally traumatized and physically exhausted. Parental coping patterns were vigilant parenting and aimed at reframing roles, facing the social challenge and assisting the child's social re-integration. The nature of family resources was family resiliency. The findings provide a scientific knowledge base for nurses when assisting parents and children during the health to illness transitional phase following a diagnosis of epilepsy.     

Care of disabled children and women's time use

Previous research has estimated the effect of children's health care needs on women's market and nonmarket roles. This article reports the results of a study on the impact of health care for disabled children on women's nonmarket work. (Effects on women's market work are reported elsewhere.) Data from 369 families of disabled children and 456 randomly selected families were analyzed. Disabled children increase the time spent in household work by married mothers. Single mothers do not show significant effects. Estimates are also presented of parents' time spent in administering therapy to the disabled child and in escorting the child to the site of medical care.     

Maladaptive Mother-Child Relationships: A Pilot Study

The primary purposes of this pilot study were to identify maternal psychosocial correlates of unrealistic expectations of children and of child abuse potential, and to investigate the relationships of these factors with child behavior. A cross-sectional, two-group design was used. One group consisted of 20 low-income mothers whose preschool children were referred to a family care center for suspected abuse or neglect. A comparison group was made up to 20 low-income mothers whose children attended a university-based pediatric clinic and who were not referred for abuse or neglect. Data were collected during structured in-home interviews with the mothers. Measures of parental bonding, maternal depressive symptoms, unrealistic expectations of children, child abuse potential, and child behavior were obtained. Preschool teachers of the children also rated the children's behavior. Mothers with high depressive symptoms reported more unrealistic expectations of children and had greater child abuse potential scores than those with fewer symptoms. The more child behavior problems mothers reported, the greater their unrealistic expectations of the children and the higher their score for child abuse potential. Maternal depressive symptoms were not directly related to child behavior. Teacher reports of child behavior were moderately correlated with maternal reports, but no study variable was associated with teacher reports.