Mothers of young children with special health care needs : maternal well-being and engagement in work

This thesis reports research focused on the well-being and employment experiences of mothers who have a child with special health care needs. Data are drawn from Growing Up in Australia: The Longitudinal Study of Australian Children (LSAC). This is a public access database. The thesis uses the social ecological theory of Bronfenbrenner (1984) and the work of Zubrick et al. (2000) on human and social capital to inform the conceptual framework developed for the research. Four studies are reported. LSAC has a nationally representative sample of Australian children and their families. The study is tracking the development of 10,000 children, with data collected every two years, from 2004 to 2018. This thesis uses data from the Kindergarten Cohort of LSAC. The 4,983 children in the Kindergarten Cohort were aged 4 years at recruitment into the study in 2004. The analyses in this thesis use child and family data from Wave 1 (2004) and Wave 2 (2006) for a subsample of the children who are identified as having special health needs. This identification is based on a short screening questionnaire included in the Parent 1 Interview at each wave of the data collection. It is the children who are identified as having special health care needs which can be broadly defined as chronic health conditions or developmental difficulties. However, it is the well-being and employment experiences of the mothers of these children that are the primary focus in three of the four studies reported in this thesis.

Men, wage work and family

In the last two decades there has been a plethora of research on a range of subjects collectively and rhetorically known as ‘work-life balance’. The bulk of this research, which spans disciplines including feminist sociology, industrial relations and management, has focused on the significant concerns of employed women and/or dual career couples. Less attention has been devoted to scholarship which explicitly examines men and masculinities in this context. Meanwhile, public and organizational discourse is largely espoused in gender neutral terms, often neglecting salient gendered issues which differentially impact the ability of women and men to successfully integrate their work and non-work lives. This edited book brings together empirical studies of the work-life nexus with a specific focus on men’s working time arrangements, how men navigate and traverse paid work and family commitments, and the impact of public and organizational policies on men’s participation in work, leisure, and other life domains. The book is innovative in that it presents both macro (institutional, how policy affects practice) and micro (individual, from men’s own perspectives) level studies, allowing for a rich and contrasting exploration of how men’s participation in paid work and other domains is divided, conflicted, or integrated. The essays in this volume address issues of fundamental social, labor market, and economic change which have occurred over the last 20 years and which have profoundly affected the way work, care, leisure and community have evolved in different contexts. Taking an international focus, Men, Wage Work and Family contrasts various public and organizational policies and how these policies impact men’s opportunities and participation in paid work and non-work domains in industrialised countries in Europe, North America, and Australia.

Alcoholism and family interaction

In i6 families, half of which had an alcoholic parent, both parents and an adolescent were videotaped interacting with each other. Mothers, fathers and the adolescent in each family viewed the videotaped interaction and completed ratings of themselves and the other two family members on levels of anxiety, involvement, dominance and friendliness. In families with an alcoholic parent, adolescents and their mothers rated family members as less anxious than did adolescents and mothers in families without a drinking problem. Also mothers in the alcoholic families rated family members as being more involved, and their ratings were higher than mothers in other families. Alcoholic families rated parent-adolescent interactions as more dominant and friendlier. At least in these videotaped interactions where alcohol was not being consumed, mothers in alcoholic families adopted a more positive view of family members than mothers in other families. In addition, possibly due to the efforts of fathers not to drink and memories of interactions when he was drunk, alcoholic families perceived their family interactions as more dominant and friendlier than families without an alcohol-related problem. [Schweitzer R, Wilks j, Callan vJ. Alcoholism and family interaction.

Threat vigilance in child witnesses of domestic violence: a pilot study utilizing the ambiguous situations paradigm

Research has found that children exposed to family violence exhibit higher rates of maladjustment. We review relevant literature on family violence, marital conflict, and cognitive factors implicated in child behaviour problems. A bias toward perceiving threat in ambiguous contexts has been identified as one factor mediating both aggressive and anxious behaviour disorders. We conducted a study utilizing the ambiguous situations paradigm to assess whether children exposed to violent spousal conflict were more likely than children not exposed to violence (divided into children with an externalizing behaviour disorder and non-clinic children) to perceive threat in two classes of ambiguous situations: Peer and Inter-Parental. The results indicated that children exposed to violent spousal conflict perceived more threat in parental situations than either of the other two groups. A number of considerations were taken into account given the exploratory nature of the study, particularly sample limitations. We conclude with suggestions for improvements to the research design and the further relevance of exploring cognitive factors involved in the adjustment of children from backgrounds of violence.

How stable is the well-being of Australian mothers who care for young children with special health care needs?

Ninety-seven percent of children who have special health care needs are cared for by their mothers. These mothers cite that their informal care work can be intrinsically rewarding, however, the role is not without substantial difficulties and consequences. We investigated differences in the health and well-being of mothers whose young children do and do not have special health care needs. Quantitative data are drawn from Growing Up in Australia: The Longitudinal Study of Australian Children. This study employs a matched-case control methodology to compare the experiences of a group of 292 mothers whose children are identified as having long term special health care needs to those mothers whose children are typically developing at two time points; Wave 1 (2004) and Wave 3 (2008). The findings support previous research that mothers of children with special health care needs have poorer general health and mental health than mothers whose children do not have special needs. Mothers of children with special health care needs also perceived life as more difficult. Longitudinally, this study also shows that maternal well-being remains relatively stable during the years when children are transitioning to formal schooling. Implications for policy makers, practitioners and early childhood professionals are discussed.

Understanding negation and family history to improve clinical information retrieval

We present a study to understand the effect that negated terms (e.g., "no fever") and family history (e.g., "family history of diabetes") have on searching clinical records. Our analysis is aimed at devising the most effective means of handling negation and family history. In doing so, we explicitly represent a clinical record according to its different content types: negated, family history and normal content; the retrieval model weights each of these separately. Empirical evaluation shows that overall the presence of negation harms retrieval effectiveness while family history has little effect. We show negation is best handled by weighting negated content (rather than the common practise of removing or replacing it). However, we also show that many queries benefit from the inclusion of negated content and that negation is optimally handled on a per-query basis. Additional evaluation shows that adaptive handing of negated and family history content can have significant benefits.

Long-term care and family bargaining

We present a structural model of how families decide who should care for elderly parents. We use data from the National Long-Term Care Survey to estimate and test the parameters of the model. Then we use the parameter estimates to simulate the effects of the existing long-term trends in terms of the common but untested explanations for them. Finally, we simulate the effects of alternative family bargaining rules on individual utility to measure the sensitivity of our results to the family decision-making assumptions we make.

Formal home health care, informal care, and family decision making

We use the 1993 wave of the Assets and Health Dynamics Among the Oldest Old (AHEAD) data set to estimate a game-theoretic model of families' decisions concerning the provision of informal and formal care for elderly individuals. The outcome is the Nash equilibrium where each family member jointly determines her consumption, transfers for formal care, and allocation of time to informal care, market work, and leisure. We use the estimates to decompose the effects of adult children's opportunity costs, quality of care, and caregiving burden on their propensities to provide informal care. We also simulate the effects of a broad range of policies of current interest. © (2009) by the Economics Department of the University of Pennsylvania and the Osaka University Institute of Social and Economic Research Association.

Mobility in the child (and carer) friendly city : SEQ vs. Stockholm

The rationale for providing state subsidised public transport has changed over time from a social obligation to provide transport options for those without access to private transport to an environmental and economic imperative to minimize congestion and greenhouse gas emissions. In many jurisdictions this shift has seen a greater focus on the provision of peak hour commuter services and a shift in the demographic profile of the riding public and a significant increase in the number of commuter passengers relative to others. The scheduling of commuter services is not geared to meet the needs of children and their generally female carers who often need to engage in trip chaining and travel outside peak commuting periods and on weekends. In addition to service scheduling difficulties, transport infrastructure, both on-board and supporting infrastructure such as bus stops, train stations and connecting footpaths often do not support children and their carers to use public transport services. Combined with a negative attitude by passengers and service providers, such as bus drivers, which may see children, babies and young people as out of place and unwelcome on commuter services, these issues conspire to hinder the use of public transport by children and their carers. Overlaying feminist geography analysis and insights and child-friendly cities objectives, this paper proposes some basic criteria for the provision of public transport services and supporting infrastructure which meets the needs of children, babies and their carers and juxtaposes the achievement of these in South East Queensland, Australia and Stockholm, Sweden.

Prevalence of asymptomatic malaria and bed net ownership and use in Bhutan, 2013 : a country earmarked for malaria elimination

Background With dwindling malaria cases in Bhutan in recent years, the government of Bhutan has made plans for malaria elimination by 2016. This study aimed to determine coverage, use and ownership of LLINs, as well as the prevalence of asymptomatic malaria at a single time-point, in four sub-districts of Bhutan. Methods A cross-sectional study was carried out in August 2013. Structured questionnaires were administered to a single respondent in each household (HH) in four sub-districts. Four members from 25 HH, randomly selected from each sub-district, were tested using rapid diagnostic tests (RDT) for asymptomatic Plasmodium falciparum and Plasmodium vivax infection. Multivariable logistic regression models were used to identify factors associated with LLIN use and maintenance. Results All blood samples from 380 participants tested negative for Plasmodium infections. A total of 1,223 HH (92.5% of total HH) were surveyed for LLIN coverage and use. Coverage of LLINs was 99.0% (1,203/1,223 HH). Factors associated with decreased odds of sleeping under a LLIN included: washing LLINs and >nine months compared to washing LLINs every six months; HH in the least poor compared to the most poor socio-economic quintile; a HH income of Nu 5,001-10,000 (US$1 = Nu 59.55), and Nu >10,000, compared to HH with income of and keeping LLINs in a box compared to keeping them hanging in the place of use. Factors associated with use of LLINs for purposes other than the intended use included: income group Nu 1,501-3,000 and HH located one to three hours walking distance from a health centre. Conclusions There was high coverage of LLINs in the study area with regular use of LLINs throughout the year. LLIN use for purposes other than malaria prevention was low. With high coverage and regular use of LLINs, and a zero prevalence of malaria infection found in historically high-risk communities during the peak malaria season, it appears Bhutan is on course to achieve malaria elimination.

Connecting the person with dementia and family : a feasibility study of a telepresence robot

Background Maintenance of communication is important for people with dementia living in long-term care. The purpose of this study was to assess the feasibility of using “Giraff”, a telepresence robot to enhance engagement between family and a person with dementia living in long-term care. Methods A mixed-methods approach involving semi-structured interviews, call records and video observational data was used. Five people with dementia and their family member participated in a discussion via the Giraff robot for a minimum of six times over a six-week period. A feasibility framework was used to assess feasibility and included video analysis of emotional response and engagement. Results Twenty-six calls with an average duration of 23 mins took place. Residents showed a general state of positive emotions across the calls with a high level of engagement and a minimal level of negative emotions. Participants enjoyed the experience and families reported that the Giraff robot offered the opportunity to reduce social isolation. A number of software and hardware challenges were encountered. Conclusions Participants perceived this novel approach to engage families and people with dementia as a feasible option. Participants were observed and also reported to enjoy the experience. The technical challenges identified have been improved in a newer version of the robot. Future research should include a feasibility trial of longer duration, with a larger sample and a cost analysis.