Towards ending the silence: working women caring for children with chronic illness

This paper presents stories from women who work and care for a child with a significant chronic illness or disability. The purpose of this paper is to move towards ending the silence on their lives. A three-phase emergent research design responds to the question: What is life like for a full-time worker who is concurrently the primary carer of a chronically ill child? This paper considers the theory of Silencing the Self (Jack, 1991) in relation to the emergent themes of “Otherness” and “Doing it All.” As in Jack’s study, these women also engaged in silencing of the self. However, unlike the respondents in Jack’s study, these women did not demonstrate feelings of worthlessness and hopelessness for the future, nor were they alone in contributing to their silence. Indeed, many experienced silencing behaviors from others around them, and many rallied against the silence, not accepting that their burden should continue. Consideration of Jack’s theory is made to point out the distinctions between the women in this study and Jack’s study, and analytical commentary is provided to demonstrate the relevance of this analysis in light of the current debates surrounding the Work–Home Conflict and the rising levels of informal care provided by women in our communities.

The road map to building new dreams : raising a child with developmental delay or disability

Research on early childhood education emphasises the importance of quality in early childhood intervention. This study examines the quality of Early Childhood Intervention Services based on parents’ experiences raising a child with developmental delay or disability. The study builds on the philosophy of Family-Centred Practice and professionals’ experiences with family-centred interventions. A qualitative case study approach was adopted to gain insight about families who are raising a child with additional needs. Nine in-depth parent-interviews and three focus groups with professionals were conducted in the first two terms of 2010. The case explicates the experiences of parents and professionals who were associated with Specialist Children’s Services in a metropolitan region of Victoria. The research concentrated on the first point of entry to early intervention, the referrals process and the waiting list. It also addressed parents' experiences, priorities and expectations. As a small-scale study, it examined parents’ and children’s needs as well as children’s access to therapy in early intervention. It also investigated community support and parent-professional relationships in the context of early childhood intervention services. The study found that family-centred intervention is beneficial to both parents and children with developmental delay or disability. However, to implement an effective family-centred approach, practitioner support in the form of professional development, supervision and peer mentorship is required to develop professionals’ reflexivity and self-efficacy in family-centred interventions. The study also identified strategies to promote effective practice, gaps in universal and specialised services, and implications for policy.

Religion and suicide in patients with mental illness or cancer

In Switzerland, the highest rates of suicide are observed in persons without religious affiliation and the lowest in Catholics, with Protestants in an intermediate position. We examined whether this association was modified by concomitant psychiatric diagnoses or malignancies, based on 6,909 suicides (ICD-10 codes X60-X84) recorded in 3.69 million adult residents 2001-2008. Suicides were related to mental illness or cancer if codes F or C, respectively, were mentioned on the death certificate. The protective effect of religion was substantially stronger if a diagnosis of cancer was mentioned on the death certificate and weaker if a mental illness was mentioned.

Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with multiple sclerosis and comparisons with children of healthy parents

Objective: To examine adjustment in children of a parent with multiple sclerosis within a stress and coping framework and compare them with those who have 'healthy' parents. Subjects: A total of 193 participants between 10 and 25 years completed questionnaires; 48 youngsters who had a parent with multiple sclerosis and 145 youngsters who reported that they did not have a parent with an illness or disability. Method: A questionnaire survey methodology was used. Variable sets included caregiving context (e.g. additional parental illness, family responsibilities, parental functional impairment, choice in helping), social support (network size, satisfaction), stress appraisal, coping (problem solving, seeking support, acceptance, wishful thinking, denial), and positive (life satisfaction, positive affect, benefits) and negative (distress, health) adjustment outcomes. Results: Caregiving context variables significantly correlated with poorer adjustment in children of a parent with multiple sclerosis included additional parental illness, higher family responsibilities, parental functional impairment and unpredictability of the parent's multiple sclerosis, and less choice in helping. As predicted, better adjustment in children of a parent with multiple sclerosis was related to higher levels of social support, lower stress appraisals, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial). Compared with children of 'healthy' parents, children of a parent with multiple sclerosis reported greater family responsibilities, less reliance on problem solving and seeking social support coping, higher somatization and lower life satisfaction and positive affect. Conclusions: Findings delineate the key impacts of young caregiving and support a stress and coping model of adjustment in children of a parent with multiple sclerosis.

Brave New World of Health

"Within contemporary society the meaning of 'health' is surprisingly unstable. Guiding principles that once seemed self-evident have been challenged by new social, scientific and economic forces. This book argues that the foundational terms and concepts, which form the basic building blocks of dialogue about health, are now in flux. While the forces in play differ, and the pace of change is varied, there is now a 'brave new world' of health which characterises policy debate about health (and illness or disability). This permeates even the more narrow technical issues within clinical medicine, the law and medical science. This construction and reconstruction of health has important implications for the development of law and policy. The book draws on international and local experts to explore these issues. It opens with consideration of the economic and social forces of 'globalisation' - the macro level forces which now shape the 'lived realities' of health for the world's people. This is then contextualised through a series of detailed 'case studies' of more localised examples including; pharmaceuticals, preimplantation genetic diagnosis, body modification, abortion, anorexia and post-traumatic stress disorder. The book also interrogates the way modern health research influences public conceptions of health. Across these issues the book canvasses the social forces at work in the construction of health, disability and illness in shaping our understandings of such concepts by the public, by individuals, by the courts, and by international bodies. Brave New World of Health is an important contribution to advancing that understanding."--Publisher's website.

"Getting-by', Coping and Resilience in Difficult Times: Initial Findings

A report provided the initial findings from a research project that examined the resilience of households in Northern Ireland. Drawing on baseline survey data and qualitative interviews with households across four neighbourhoods, it outlined a range of challenges and the strategies used by households to 'get by'. The report said that, for these households, resilience was not about 'bouncing back', 'flourishing', or 'thriving' in the face of adversity, but was about not being overcome, 'getting-by', enduring, surviving, just 'getting on with things', and 'keeping their heads above the water'. The report noted the susceptibility of households to future stressors, such as welfare reform, especially those on means-tested benefits or with long-term illness or disability. Place, and relationships with family and friends, appeared to be important for resilience and future work would investigate this further. The report highlighted issues around the measurement of resilience and noted the importance of qualitative work.

The cost of a minimum essential food basket in the Republic of Ireland: Study for six household types.

A Minimum Essential Standard of Living (MESL) is derived from a negotiated consensus on what people believe is a minimum standard. It is a standard of living that meets an individual’s or a household’s physical, psychological and social needs. This is calculated by identifying the goods and services required by different household types in order to meet their needs. While an MESL is based on needs, not wants, it is a standard of living below which nobody should be expected to live. This report focuses on food, one of the 16 elements of the Minimum Essential Standard of Living (MESL) data. It is based on a methodology called Consensual Budget Standards (CBS). The report is presented in the context of increasing concerns about the issue of food poverty in the Republic of Ireland (ROI) and an increase in the number of people reporting that they do not have enough money to buy food. Recent data from The Organisation for Economic Co-operation and Development (OECD) have shown that the number of people believing they cannot afford food doubled from 4.2% in 2008 to 9% in 2014. Data from Eurostat show that in 2013, food and non-alcoholic beverage prices in Ireland were 17% higher than the EU average. Moreover, research by Carney and Maitre, using data from the Survey on Income and Living Conditions (SILC), found that one in ten people are living in food poverty in Ireland. Food poverty is defined as the inability to have an adequate and nutritious diet due to issues of affordability and access to food. This has related effects on health, culture and social participation. The 2013 data from the Survey on Income and Living Conditions (SILC) show that 1.4 million people, almost 31% of the population, suffer from deprivation. This means that they are unable to afford two items from a list of 11 very basic items (of which one is not being able to eat a meal with meat, chicken, fish or a vegetarian equivalent every second day). The highest levels of deprivation are experienced by lone parents (63%), unemployed people (55%) and people not at work because of illness or disability (53%). The experience of the Vincentian Partnership for Social Justice (VPSJ) is that expenditure on food tends to be one of the least important considerations when households are dealing with competing demands on an inadequate income. A Minimum Essential Standard of Living (MESL) is derived from a negotiated consensus on what people believe is a minimum standard. It is a standard of living that meets an individual’s or a household’s physical, psychological and social needs. This is calculated by identifying the goods and services required by different household types in order to meet their needs. While an MESL is based on needs, not wants, it is a standard of living below which nobody should be expected to live. This report focuses on food, one of the 16 elements of the Minimum Essential Standard of Living (MESL) data. It is based on a methodology called Consensual Budget Standards (CBS). The report is presented in the context of increasing concerns about the issue of food poverty in the Republic of Ireland (ROI) and an increase in the number of people reporting that they do not have enough money to buy food. Recent data from The Organisation for Economic Co-operation and Development (OECD) have shown that the number of people believing they cannot afford food doubled from 4.2% in 2008 to 9% in 2014. Data from Eurostat show that in 2013, food and non-alcoholic beverage prices in Ireland were 17% higher than the EU average. Moreover, research by Carney and Maitre, using data from the Survey on Income and Living Conditions (SILC), found that one in ten people are living in food poverty in Ireland. Food poverty is defined as the inability to have an adequate and nutritious diet due to issues of affordability and access to food. This has related effects on health, culture and social participation. The 2013 data from the Survey on Income and Living Conditions (SILC) show that 1.4 million people, almost 31% of the population, suffer from deprivation. This means that they are unable to afford two items from a list of 11 very basic items (of which one is not being able to eat a meal with meat, chicken, fish or a vegetarian equivalent every second day). The highest levels of deprivation are experienced by lone parents (63%), unemployed people (55%) and people not at work because of illness or disability (53%). The experience of the Vincentian Partnership for Social Justice (VPSJ) is that expenditure on food tends to be one of the least important considerations when households are dealing with competing demands on an inadequate income. - See more at: http://www.safefood.eu/Publications/Research-reports/The-cost-of-a-healthy-food-basket.aspx#sthash.RiBpj5no.dpuf A Minimum Essential Standard of Living (MESL) is derived from a negotiated consensus on what people believe is a minimum standard. It is a standard of living that meets an individual’s or a household’s physical, psychological and social needs. This is calculated by identifying the goods and services required by different household types in order to meet their needs. While an MESL is based on needs, not wants, it is a standard of living below which nobody should be expected to live. This report focuses on food, one of the 16 elements of the Minimum Essential Standard of Living (MESL) data. It is based on a methodology called Consensual Budget Standards (CBS). The report is presented in the context of increasing concerns about the issue of food poverty in the Republic of Ireland (ROI) and an increase in the number of people reporting that they do not have enough money to buy food. Recent data from The Organisation for Economic Co-operation and Development (OECD) have shown that the number of people believing they cannot afford food doubled from 4.2% in 2008 to 9% in 2014. Data from Eurostat show that in 2013, food and non-alcoholic beverage prices in Ireland were 17% higher than the EU average. Moreover, research by Carney and Maitre, using data from the Survey on Income and Living Conditions (SILC), found that one in ten people are living in food poverty in Ireland. Food poverty is defined as the inability to have an adequate and nutritious diet due to issues of affordability and access to food. This has related effects on health, culture and social participation. The 2013 data from the Survey on Income and Living Conditions (SILC) show that 1.4 million people, almost 31% of the population, suffer from deprivation. This means that they are unable to afford two items from a list of 11 very basic items (of which one is not being able to eat a meal with meat, chicken, fish or a vegetarian equivalent every second day). The highest levels of deprivation are experienced by lone parents (63%), unemployed people (55%) and people not at work because of illness or disability (53%). The experience of the Vincentian Partnership for Social Justice (VPSJ) is that expenditure on food tends to be one of the least important considerations when households are dealing with competing demands on an inadequate income. - See more at: http://www.safefood.eu/Publications/Research-reports/The-cost-of-a-healthy-food-basket.aspx#sthash.RiBpj5no.dpuf A Minimum Essential Standard of Living (MESL) is derived from a negotiated consensus on what people believe is a minimum standard. It is a standard of living that meets an individual’s or a household’s physical, psychological and social needs. This is calculated by identifying the goods and services required by different household types in order to meet their needs. While an MESL is based on needs, not wants, it is a standard of living below which nobody should be expected to live. This report focuses on food, one of the 16 elements of the Minimum Essential Standard of Living (MESL) data. It is based on a methodology called Consensual Budget Standards (CBS). The report is presented in the context of increasing concerns about the issue of food poverty in the Republic of Ireland (ROI) and an increase in the number of people reporting that they do not have enough money to buy food. Recent data from The Organisation for Economic Co-operation and Development (OECD) have shown that the number of people believing they cannot afford food doubled from 4.2% in 2008 to 9% in 2014. Data from Eurostat show that in 2013, food and non-alcoholic beverage prices in Ireland were 17% higher than the EU average. Moreover, research by Carney and Maitre, using data from the Survey on Income and Living Conditions (SILC), found that one in ten people are living in food poverty in Ireland. Food poverty is defined as the inability to have an adequate and nutritious diet due to issues of affordability and access to food. This has related effects on health, culture and social participation. The 2013 data from the Survey on Income and Living Conditions (SILC) show that 1.4 million people, almost 31% of the population, suffer from deprivation. This means that they are unable to afford two items from a list of 11 very basic items (of which one is not being able to eat a meal with meat, chicken, fish or a vegetarian equivalent every second day). The highest levels of deprivation are experienced by lone parents (63%), unemployed people (55%) and people not at work because of illness or disability (53%). The experience of the Vincentian Partnership for Social Justice (VPSJ) is that expenditure on food tends to be one of the least important considerations when households are dealing with competing demands on an inadequate income. - See more at: http://www.safefood.eu/Publications/Research-reports/The-cost-of-a-healthy-food-basket.aspx#sthash.RiBpj5no.dpuf

Digital accessibility challenges: the impact of locality, usability and technology

Abstract: It is estimated that 1 in 5 will, at some point in their lives, experience a long-term illness or disability that will impact their day to day lives. Access to digital information and technologies can be life changing and a necessity to fully participate in education, work and society. Specialist assistive technologies, such as screen readers, have been available for many years and are now built-into operating systems and devices. In addition, web accessibility standards have been compiled and published since the advent of the World Wide Web over two decades ago. However, internet use by people with disabilities continues to lag significantly behind those with no disability and use of assistive technologies remains lower than should be the case with tools often abandoned. In this seminar we will talk about our work to identify digital accessibility challenges; the barriers experienced by those with disabilities and how computer scientists can play a part in removing obstacles to access and ease of use. We will discuss some of our projects focussing on: • Development of assistive technologies for niche groups of users, • improving accessibility standards to cover a wider range of disabilities, • creating accessibility training resources for developers and stakeholders • embedding accessibility practice within development projects.

Calidad de vida en personas con hemofilia: una revisión de la literatura

Introducción: La hemofilia es una enfermedad poco frecuente; no obstante, los avances en los tratamientos de pacientes hemofílicos en las últimas décadas han generado cambios en su calidad de vida. Esto ha motivado el desarrollo de múltiples investigaciones al respecto. Objetivo: Revisar la literatura sobre la calidad de vida en el paciente hemofílico, producida en el periodo 2008-2012. Método: Se consultaron algunas bases de datos científicas utilizando como palabras clave “hemofilia” y “calidad de vida”. Se recopiló la información encontrada y se organizó según los objetivos propuestos en “factores negativos” y “factores protectores” de la calidad de vida a nivel fisiológico, psicosocial y cultural; “instrumentos para la evaluación de la calidad de vida” a nivel específico y general; y antecedentes empíricos de los últimos cinco años en los que se evaluara la calidad de vida o se realizara alguna intervención en la misma. Resultados: En general la información disponible sobre el comportamiento epidemiológico de la hemofilia es limitada. El interés por factores protectores y negativos es principalmente de tipo fisiológico, aunque se encontraron factores de tipo psicosocial y cultural, lo que indica la importancia de profundizar en esta temática. Existen pocos instrumentos especializados para la evaluación de la calidad de vida en hemofílicos. La evidencia empírica se centra en la evaluación. Conclusión: El estudio de la calidad de vida en pacientes hemofílicos amerita ser abordado de manera interdisciplinaria.

The use and usefulness of a parent questionnaire to help schools identify disability

The Equality Act 2010 will be implemented in full in 2011, and schools in the UK will have to provide special aids or services for children with disabilities where this provision is considered reasonable. This paper reports on staff perspectives on the use and usefulness of a parental questionnaire on disability from a sample of 49 schools (mainstream and special) located in 12 local authorities. Most schools found the process of administering the parent questionnaire undemanding; just under half of the sample indicated that they would take some action as a result of the data collected from the parental questionnaire (e.g., to inform plans for targeting or monitoring support for children, and to contact parents and follow-up issues they had mentioned); and about one-third of schools recorded unanticipated findings from the parental questionnaire, that is, the identification of children whose disabilities were not previously known to the school. Implications for schools are discussed.

Poor functional health literacy : the silent disability for older people

In this information age, people are confronted by verbal, visual and written information. This is especially important in the health field, where information is needed to follow directions, understand prescriptions and undertake preventive behaviours. If provided in written form, much of this information may be inaccessible to people who cannot adequately read. Although poor literacy skills affect all groups in the population, older adults with fewer years of education seem to be particularly disadvantaged by an increasing reliance on written communication of health information. With older age comes a higher risk of illness and disability and a greater potential need to access the health system. As a result, poor literacy skills of older individuals may directly impact their health status. This paper explores the link between functional literacy and health, particularly for the older population, provides strategies to practitioners for the management of this problem, and suggests research initiatives in this area.

Skin preparation with alcohol versus alcohol followed by any antiseptic for preventing bacteraemia or contamination of blood for transfusion (Review)

Background: Blood for transfusion may become contaminated at any point between collection and transfusion and may result in bacteraemia (the presence of bacteria in the blood),severe illness or even death for the blood recipient. Donor arm skin is one potential source of blood contamination, so it is usual to cleanse the skin with an antiseptic before blood donation. One-step and two-step alcohol based antiseptic regimens are both commonly advocated but there is uncertainty as to which is most effective.----- Objectives: To assess the effects of cleansing the skin of blood donors with alcohol in a one-step compared with alcohol in a two-step procedure to prevent contamination of collected blood or bacteraemia in the recipient.----- Search strategy: We searched the Cochrane Wounds Group Specialised Register (March 10 2009); The Cochrane Central Register of Controlled Trials(CENTRAL) The Cochrane Library 2009, Issue 1; Ovid MEDLINE - (1950 to February Week 4 2009); Ovid EMBASE - (1980 to 2009 Week 9); and EBSCO CINAHL - (1982 to February Week 4 2009). We also searched the reference lists of key papers.----- Selection criteria: All randomised trials (RCTs) comparing alcohol based donor skin cleansing in a one-step versus a two-step process that includes alcohol and any other antiseptic for pre-venepuncture skin cleansing were considered. Quasi randomised trials were to have been considered in the absence of RCTs.----- Data collection and analysis: Two review authors independently assessed studies for inclusion.----- Main results: No studies (RCTs or quasi RCTs) met the inclusion criteria. Authors’ conclusions We did not identify any eligible studies for inclusion in this review. It is therefore unclear whether a two-step, alcohol followed by antiseptic skin cleansing process prior to blood donation confers any reduction in the risk of blood contamination or bacteraemia in blood recipients, or conversely whether a one-step process increases risk above that associated with a two-step process.

Patient expectations, outcomes and satisfaction : related, relevant or redundant?

Abstract Study design: A prospective investigation of patients undergoing lumbar spine surgery. Objective: Is there a correlation between patient’s expectations before lumbar surgery, postoperative outcomes and satisfaction levels? Methods: A prospective study of 145 patients undergoing primary, single-level surgery for degenerative lumbar conditions was conducted. Oswestry Disability Index (ODI), back visual analogue scale (VAS) and leg VAS were assessed pre-operatively and at 6 weeks and 6 months post-surgery. Patients’ expectations were measured pre-operatively by asking them to score the level of pain and disability that would be least acceptable for them to undergo surgery and be satisfied. Satisfaction was assessed six weeks post-operatively with a Likert scale. Differences in patient expectations between actual and expected improvements were quantified. Results: Most patients had a clinically relevant improvement, but only about half achieved their expectation. Satisfaction did not correlate with pre-operative pain or disability, or with patient expectation of improvement. Instead, satisfaction correlated with positive outcomes. Conclusions Patient expectations have little bearing on final outcome and satisfaction.

Communicating personal amnesty : a dismodernist approach to arts intersections between disability, personal stories and well-being

This thesis investigates the role of narrative devices in the process of improving an individual’s psychological and physiological experience of health and well-being using two methods of inquiry: a theoretical research project and a comparative analysis of two case studies. Through these two approaches the research examines how the health status of people experiencing disability can be re-positioned and re-designed to develop creative, narrative-based approaches to strengthen communication between the mainstream community and those marginalised by pathological, social and biological illness-centric policy. The theoretical section of the thesis examines two different, but complementary bodies of research: health and well-being, and narrative reconstruction. By invoking Antonovksy’s (1985a) theory of salutogenesis and Davis’s (2002) theory of dismodernism, the study examines the role of language and narrative in the defining of health in social, pathological and ableist spheres. The research positions health and well-being as disparate from historical and contemporary readings of illness and disability and presents literature to support the potential to improve health well-being through a creative re-narration of the experience of disability. The research examines the theoretical concepts of resilience, autonomy and social inclusion through a detailed examination of narratology and the amnesty narrative. The study links these theoretical approaches to a practical Arts-Health intersection program developed for the research project called Communicating Personal Amnesty. Through a comparative analysis of a Pilot Study and Major Case study, the research presents findings derived from theory-building participatory action research showing the efficacy of the program. The research provides a detailed analysis of key narrative structures through a variety of experimental methodological approaches to encourage an important dialogue between the creative components of the thesis and the more traditional health-based academic critique. The research is an example of emergent translational health methodologies, in disability studies.