This study integrates the research on the social construction of motherhood as it applies to mothers of children with special needs. More specifically, it, looks at how writings by these mothers can (a) help them cope with the emotional ramifications of having such a child, (b) contribute to the knowledge base of professionals who deal with and nurture not only children with special needs but also their mothers, and (c) constitute an effective qualitative research tool. / The study focuses on the relationship between writing processes and products and the development of mothers' emotional states and emotional development, their self-image, self-confidence, role identity, and comfort. It investigates feelings of inadequacy, guilt, anger, and frustration, especially those engendered by good mother/bad mother social judgments, to which mothers of children with special needs are particularly vulnerable. / I came to this area of research organically---as a clinician, as a teacher, and as a mother of a child with special needs myself. Van Manan (1990) suggests there is no better way to understand a phenomenon than to live it. I realized I was uniquely positioned to understand, examine, and synthesize the therapeutic effects of mothers' writing, reading, and storytelling, and understand the social environment that fuels it. As a clinician and educator, I also recognized its value as a rich, yet relatively unexplored, source of knowledge. / In preparation for designing the study, I looked beyond peer-reviewed literature to popular literature, including diaries and autobiographies of mothers, to familiarize myself with their writings and the impact of such writings on the mothers' emotional adjustments, including their need for expression, support, and advocacy---for themselves and others. / The study describes the experiences of a writing group (eight participants) comprised of mothers of children with special needs. The group met weekly for ten weeks to examine and share their feelings and life stories through a series of written assignments. Common themes and individual responses to this experience were captured anecdotally throughout the sessions, as well as in pre- and post-group interviews. / Following a description of how the study evolved, coinciding with my personal shift from quantitative to qualitative researcher, I begin with a comprehensive review of mothering as a research area in literature, and a review of literature on the therapeutic effects of reading, writing and storytelling. I then discuss the methodology of this study with an emphasis on the literature on focus groups, memory work, narratives and writing, as well as qualitative research tools and techniques. The results of the study are presented descriptively using primarily a narrative approach, including a more detailed analysis of the experiences of four mothers who participated in the study. / All the mothers reported beneficial effects from their participation. They felt empowered by the experience and inspired to continue to use writing, not only for its individual therapeutic effect but also as a means to advocate and inform others. The connection between writing and advocacy was a recurrent theme that emerged from the study---a strong common desire to help others, and the recognition that writing was an effective means to accomplish the mothers' goal to have professionals understand them better, individually and as a whole, and to be more empathetic. / Other findings include the incongruence of thought between mothers and professionals, and the need to deepen our understanding of parent-professional interaction; and how much more impact the mothering debate has on mothers of children with special needs, particularly the stay-at-home versus working mothers' argument. / This study provides insight into the extensive thoughts and emotions experienced by these mothers, and furthers our understanding of themes like stages of mourning for the not-so-perfect child, and the inter-related processes of storytelling, reading, and writing. It also has implications in the field of memory work, looking at how these mothers recalled early events in the lives of their children and how they remembered their experience in the study, months after its conclusion. Finally, it discusses the implications of using therapeutic writing as a qualitative research tool. / The study concludes with suggestions for using writing to facilitate communication and understanding between parents and educators as well as between parents and other professionals, for their mutual benefit.

No description available.

A family-focused intervention model, based on Bailey at al. (1986) was adapted and utilized with 16 families having infants (birth to three years) with moderate or severe developmental disabilities. The intervention included the selection and development of appropriate instruments as well as a 20-week treatment program for the entire family unit. Individualized family service plans were developed and incorporated the collaborative efforts of parents and the interventionist. Multiple baselines across targeted, individualized, familial behaviors resulted in progressive skill attainment by each family member. As a result of intervention, predominantly positive interactions were exhibited between infants with handicaps and their family members. Data obtained from the family assessment tools revealed statistically significant relationships among the family variables. Qualitative analyses of parental and sibling statements and behaviors confirmed enhancement of their skill repertoire and the identification of specific events that impacted upon families. Evaluation of the effectiveness of the family-focused intervention model resulted in high levels of parental satisfaction, accelerated rates of progress by children with moderate or severe developmental disabilities, and acquisition of functional skills by families. Positive benefits of the model exceeded family gains acquired with previously implemented child-focused programs. Implications for future research are described.

The purpose of this study was to explore the challenges parents of children with mental health disabilities and disorders in Namibia face when attempting to access mental healthcare resources. The study used a qualitative exploratory approach. Purposive sampling was used to include parents, caregivers and relatives of children with metal health disabilities and disorders. The sample also included key informants. Data was collected through focus group discussions with the participants and individual interviews with the key informants. Overall, a total of 41 people provided information for this study. Thematic data analysis was used to assess the data. The results suggest that parents/caregivers and relatives of children with mental health disabilities and disorders do experience barriers accessing mental health care. The challenges go beyond commonly-reported problems in the literature such as stigma and discrimination and include basic challenges such as a lack of transportation to healthcare services and a lack of acceptance of the mental health disorders by the parents. The study offers recommendations for how service provision can be improved and how parents of children with mental health challenges can have better access to services.

The purpose of this study was to determine the knowledge level and degree of satisfaction of parents whose mentally handicapped child was receiving special education and/or related services provided by public school systems.One-hundred and thirty parents responded to three instruments constructed for this study.Findings MANOVA results revealed significant differences among the three parental groups (parents of mild, moderate, and severe/profound children) on the attitude measure toward the special education placement of their children. Post hoc tests and mean comparison data indicated that parents of mildly mentally handicapped children were more satisfied with the special education services than were the two other comparison groups.Data analysis using ANOVA indicated that sex of parents and level of retardation of the child had no significant main effect on the knowledge level of services mandated by Public Law 94-142.Pearson correlation coefficient results suggested that the special education program variables indicated higher positive linear correlation with the degree of parental satisfaction with the special education placement of their mentally handicapped children, than did the demographic variables.Conclusions and Recommendations Parents in this study lacked knowledge of their legal rights pertaining to special education programming and related services. Future research should be directed to understand the interactions among factors that might affect parents' knowledge of PL 94-142.Workshops and inservice programs should be organized and on-going to inform parents of their rights and responsibilities under state and federal special education laws, as well as implementing ways for increasing their involvement in supporting their child's education in the least restrictive educational setting.Inservice workshops should be carried out for regular teachers to ensure that those involved with the education of exceptional children possess competencies necessary to perform their jobs adequately. An array of service alternatives and placement options is necessary to meet the varied needs of all young mentally handicapped children.Future research on parental attitudes toward the special education placement of their mentally handicapped children should take into consideration cause-effect relationships, as well as the interrelatedness of child, parent, and program variables. / Department of Special Education

Advances in medical technologies and changing philosophies of health care have led to a rapid increase in home-based care for children with disabilities. While there are cost savings for health services if children are cared for at home there are extensive additional demands on the time and resources of parents, particularly primary caregivers, who are usually mothers. Previous studies have shown that parents caring for children with disabilities experience considerable stress and increased rates of mental health problems. The present dissertation investigated the impact of caring on the daily lives of parents and in particular, a model proposing factors contributing to parental psychological, social and health outcomes. A preliminary qualitative study found time demands to be a core theme when discussing the consequences of caring, and when describing tasks of caring. A second, larger scale quantitative study focused on assessing the time constraints facing parents of children with developmental disabilities. Participants were 95 primary caregivers (mostly mothers) and 65 secondary caregivers (mostly fathers) of children (mean age = 4½ years) with developmental disabilities who were clients of the Early Childhood Service, part of Disability Services SA. Children‟s diagnoses included global developmental delay, Down syndrome, and autism. Caring and other activities of parents were assessed using a 24 hour pre-coded time-use diary. Parents also completed questionnaires measuring characteristics of child disability; their experience of time pressure and partner support; and psychological, social and physical well-being. Examination of time-use diaries found parents of children with disabilities spent more time in “active” rather than “passive” caring tasks, than parents of children in the general community. As well, they spent less time in personal care, and less time in recreational activities. Intensity of caring, rather than total time caring was correlated with reports of daily stress for primary caregivers. Patterns of caring and non-caring activities carried out by primary caregivers on weekdays and weekend days differed from those undertaken by secondary caregivers, reflecting gender differences in parenting roles. Analysis of questionnaire data showed children to have high levels of emotional and behavioural problems. Parents (particularly primary caregivers) had significantly poorer psychological, social and physical health outcomes than normative samples. Feelings of time pressure had a stronger association with parental depression than actual time spent caring. Further, testing of the model showed time pressure and partner support to be potential mechanisms by which caring for a child with a disability may lead to poor parental mental health. It is suggested that professionals providing early intervention services need a greater awareness of the constraints of the caring role undertaken by parents, together with the key role played by feelings of time pressure and partner support in contributing to the mental health of parents of children with disabilities. / http://proxy.library.adelaide.edu.au/login?url= http://library.adelaide.edu.au/cgi-bin/Pwebrecon.cgi?BBID=1346851 / Thesis (Ph.D.) - University of Adelaide, School of Paediatrics and Reproductive Health, 2008

Doctor of Philosophy / Human service professionals provide a range of services to support the health and development of children with a disability and to assist their families. Over the past two decades, family-centred approaches have become widely acclaimed as a means of providing quality services. To date, research has focused predominately on identifying or measuring discrete elements of professionals’ practice with families, such as parent–professional partnerships, family-centred practice and family empowerment, often neglecting to consider the broader practice context. What is missing is an empirical and contextually grounded understanding of how professionals interpret and enact the multiple concepts informing practice. This study addresses this gap by exploring how professionals think, feel and act when working with families and by examining more broadly, the multi-dimensional and contextual concept of ‘professional practice’. In this study, professional practice with families is conceptualised as a cultural activity. The study sought to identify and describe the culture of professional practice with families and how this culture is instantiated in daily work practice. The theoretical framework underpinning this study comes from Jerome Bruner’s cultural psychology, and specifically his writings on situated action, culture and narrative. Accordingly, narrative was considered a means to identify, describe and understand the daily work practices of professionals ‘situated’ in their cultural setting and their own intentions when working with families. One hundred and sixty three stories about professional practice were collected in focus groups and individual interviews with human service professionals in New South Wales, Australia. These narratives were analysed deductively to identify the culture of professional practice. This culture comprised of ten components reflecting professionals’ understanding of the culturally acceptable ways of working with families. The cultural components reflected principles underlying family-centred practices as well as traditional medically framed and emerging business-like principles associated with managerialism and economic rationalism. Narrative analysis was employed to inductively develop four cultural core narratives grounded V in participants’ stories: Making it work, having to fight, hopeless struggle and making the best of it. Professionals potentially have all of these narratives available to them to explain their actions in each practice situation. The results of this study provide a description and analysis of the cultural world of professional practice with families. For family-centred approaches to become a reality, these findings emphasise the critical importance of education, policy and staff development for professionals working with families that addresses the broader practice context. Suggestions are made regarding further exploration of the crosscultural validity and the application and implications of these narratives for professionals and families. By exposing the culture of professional practice and the four cultural narratives, this study challenges professionals, managers, academics and policymakers alike to critically examine the practice culture and their contribution to creating and sustaining it.

Thesis (Ph.D.)--Auburn University, 2007. / Abstract. Vita. Includes survey instruments. Includes bibliographic references (ℓ. 133-154)

Thesis (Ph. D.)--University of Toronto, 2006. / Source: Dissertation Abstracts International, Volume: 67-06, Section: A, page: 2116. Includes bibliographical references (leaves 244-250).

Thesis (M.S.W.)--Smith College School for Social Work, Northampton, Mass., 2007 / Thesis submitted in partial fulfillment for the degree of Master of Social Work. Includes bibliographical references (leaves 42-46).