Ask : a health advocacy program for adolescents with an intellectual disability : a cluster randomised controlled trial

Background Adolescents with intellectual disability often have poor health and healthcare. This is partly as a consequence of poor communication and recall difficulties, and the possible loss of specialised paediatric services. Methods/Design A cluster randomised trial was conducted with adolescents with intellectual disability to investigate a health intervention package to enhance interactions among adolescents with intellectual disability, their parents/carers, and general practitioners (GPs). The trial took place in Queensland, Australia, between February 2007 and September 2010. The intervention package was designed to improve communication with health professionals and families’ organisation of health information, and to increase clinical activities beneficial to improved health outcomes. It consisted of the Comprehensive Health Assessment Program (CHAP), a one-off health check, and the Ask Health Diary, designed for on-going use. Participants were drawn from Special Education Schools and Special Education Units. The education component of the intervention was delivered as part of the school curriculum. Educators were surveyed at baseline and followed-up four months later. Carers were surveyed at baseline and after 26 months. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Qualitative interviews of educators occurred after completion of the educational component of the intervention and with adolescents and carers after the CHAP. Discussion Adolescents with intellectual disability have difficulty obtaining many health services and often find it difficult to become empowered to improve and protect their health. The health intervention package proposed may aid them by augmenting communication, improving documentation of health encounters, and improving access to, and quality of, GP care. Recruitment strategies to consider for future studies in this population include ensuring potential participants can identify themselves with the individuals used in promotional study material, making direct contact with their families at the start of the study, and closely monitoring the implementation of the educational intervention.

Existential place-making : the dialogical realms of design for dwelling with disability

The world of disability is often neglected or taken for granted in able-bodied society. Apart from the challenge that disability is a social construct (Linton, 1998, 2006; Longmore, 2003; Thompson, 1997) there is an impact on the people with disability that they either feel left out or they don’t belong in the larger community. The able-bodied community is also left with very little knowledge or no sensitivity towards people with disability. These internal whirlpools do not contribute to any community only to create larger gaps and higher differences between the groups of people. Peace (2010) claims that disability is something imposed on to a person on top of a physical impairment. Nord (2008) advocates that while environmental barriers and social attitudes are crucial aspects of a person’s experience, they can indeed disable a person. The study reported high-lights what is home for people with disability and their family members. The way the person with disability and family members without disability share the same home and nurture personal relationships with each other demands greater attention. This research sheds light on the intricate relationships that exists between the family members including person with disability and their built environment. These existential connections provide a holistic viewpoint and the glimpse into the lived experiences of homes for people with disability and their care-givers. Concepts of universal design or barrier free design have not been successful (Connell and Sanford, 1999) in revealing in-depth the nature of place-making for people with disability and their care-givers. Such studies fail to incorporate the holistic needs of individuals with disability and their family members in terms of their bodily, visceral, emotional, social, psycho-social, intuitive, spiritual and temporal needs, to name a few (Franz, Bitner, 2010). This paper reports on some preliminary findings on phenomena of dwelling for people with different kinds of disability and their care-givers sharing the same home from an interior design perspective.

Years lived with disability (YLDs) for 1160 sequelae of 289 diseases and injuries 1990–2010 : a systematic analysis for the Global Burden of Disease Study 2010

Background Non-fatal health outcomes from diseases and injuries are a crucial consideration in the promotion and monitoring of individual and population health. The Global Burden of Disease (GBD) studies done in 1990 and 2000 have been the only studies to quantify non-fatal health outcomes across an exhaustive set of disorders at the global and regional level. Neither effort quantified uncertainty in prevalence or years lived with disability (YLDs). Methods Of the 291 diseases and injuries in the GBD cause list, 289 cause disability. For 1160 sequelae of the 289 diseases and injuries, we undertook a systematic analysis of prevalence, incidence, remission, duration, and excess mortality. Sources included published studies, case notification, population-based cancer registries, other disease registries, antenatal clinic serosurveillance, hospital discharge data, ambulatory care data, household surveys, other surveys, and cohort studies. For most sequelae, we used a Bayesian meta-regression method, DisMod-MR, designed to address key limitations in descriptive epidemiological data, including missing data, inconsistency, and large methodological variation between data sources. For some disorders, we used natural history models, geospatial models, back-calculation models (models calculating incidence from population mortality rates and case fatality), or registration completeness models (models adjusting for incomplete registration with health-system access and other covariates). Disability weights for 220 unique health states were used to capture the severity of health loss. YLDs by cause at age, sex, country, and year levels were adjusted for comorbidity with simulation methods. We included uncertainty estimates at all stages of the analysis. Findings Global prevalence for all ages combined in 2010 across the 1160 sequelae ranged from fewer than one case per 1 million people to 350 000 cases per 1 million people. Prevalence and severity of health loss were weakly correlated (correlation coefficient −0·37). In 2010, there were 777 million YLDs from all causes, up from 583 million in 1990. The main contributors to global YLDs were mental and behavioural disorders, musculoskeletal disorders, and diabetes or endocrine diseases. The leading specific causes of YLDs were much the same in 2010 as they were in 1990: low back pain, major depressive disorder, iron-deficiency anaemia, neck pain, chronic obstructive pulmonary disease, anxiety disorders, migraine, diabetes, and falls. Age-specific prevalence of YLDs increased with age in all regions and has decreased slightly from 1990 to 2010. Regional patterns of the leading causes of YLDs were more similar compared with years of life lost due to premature mortality. Neglected tropical diseases, HIV/AIDS, tuberculosis, malaria, and anaemia were important causes of YLDs in sub-Saharan Africa. Interpretation Rates of YLDs per 100 000 people have remained largely constant over time but rise steadily with age. Population growth and ageing have increased YLD numbers and crude rates over the past two decades. Prevalences of the most common causes of YLDs, such as mental and behavioural disorders and musculoskeletal disorders, have not decreased. Health systems will need to address the needs of the rising numbers of individuals with a range of disorders that largely cause disability but not mortality. Quantification of the burden of non-fatal health outcomes will be crucial to understand how well health systems are responding to these challenges. Effective and affordable strategies to deal with this rising burden are an urgent priority for health systems in most parts of the world. Funding Bill & Melinda Gates Foundation.

Measurement of environmental constructs in disability assessment instruments

The International Classification of Functioning, Disability and Health (ICF) assumes a biopsychosocial basis for disability and provides a framework for understanding how environmental factors contribute to the experience of disability. To determine the utility of prevalent disability assessment instruments, the authors examined the extent to which a range of such instruments addressed the impact of environmental factors on the individual and whether the instruments designed for different disability groups focused differentially on the environment. Items from 20 widely used disability assessment instruments were linked to the five chapters of the ICF environment component using standardized classification rules. Nineteen of the 20 instruments reviewed measured the environment to varying degrees. It was determined that environmental factors from the Natural Environment and Attitudes chapters were not well accommodated by the majority of instruments. Instruments developed for people with intellectual disabilities had the greatest environmental coverage. Only one instrument provided a relatively comprehensive and economical account of environmental barriers. The authors conclude that ICF classification of environmental factors provides a valuable resource for evaluating the environmental content of existing disability-related instruments, and that it may also provide a useful framework for revising instruments in use and for developing future disability assessment instruments.

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.

Australia's disabling income support system : tracing the history of the Australian disability income support system 1908 to 2007 : disablism, citizenship and the basic income proposal

The present study examined the historical basis of the Australian disability income support system from 1908 to 2007. Although designed as a safety net for people with a disability, the disability income support system within Australia has been highly targeted. The original eligibility criteria of "permanently incapacitated for work", medical criteria and later "partially capacitated for work" potentially contained ideological inferences that permeated across the time period. This represents an important area for study given the potential consequence for disability income support to marginalise people with a disability. Social policy and disability policy theorists, including Saunders (2007, Social Policy Research Centre [SPRC]) and Gibilisco (2003) have provided valuable insight into some of the effects of disability policy and poverty. Yet while these theorists argued for some form of income support they did not propose a specific form of income security for further exploration. Few studies have undertaken a comprehensive review of the history of disability income support within the Australian context. This thesis sought to redress these gaps by examining disability income support policy within Australia. The research design consisted of an in-depth critical historical-comparative policy analysis methodology. The use of critical historical-comparative policy analysis allowed the researcher to trace the construction of disability within the Australian disability income support policy across four major historical epochs. A framework was developed specifically to guide analysis of the data. The critical discourse analysis method helped to understand the underlying ideological dimensions that led to the predominance of one particular approach over another. Given this, the research purpose of the study centred on: i. Tracing the history of the Australian disability income support system. ii. Examining the historical patterns and ideological assumptions over time. iii. Exploring the historical patterns and ideological assumptions underpinning an alternative model (Basic Income) and the extent to which each model promotes the social citizenship of people with a disability. The research commitment to a social-relational ontology and the quest for social change centred on the idea that "there has to be a better way" in the provision of disability income support. This theme of searching for an alternative reality in disability income support policy resonated throughout the thesis. This thesis found that the Australian disability income support system is disabling in nature and generates categories of disability on the basis of ableness. From the study, ableness became a condition for citizenship. This study acknowledged that, in reality, income support provision reflects only one aspect of the disabling nature of society which requires redressing. Although there are inherent tensions in any redistributive strategy, the Basic Income model potentially provides an alternative to the Australian disability income support system, given its grounding in social citizenship. The thesis findings have implications for academics, policy-makers and practitioners in terms of developing better ways to understand disability constructs in disability income support policy. The thesis also makes a contribution in terms of promoting income support policies based on the rights of all people, not just a few.

Nurses’ role in caring for people with a comorbidity of mental illness and intellectual disability : A literature review

This article examines literature on the role of the nurse caring for people with a dual disability (DD) of intellectual disability and mental illness. A search of the literature between 2000 and 2010 resulted in a total of 21 articles that met the inclusion criteria. Seven key categories of the role of the nurse were identified: (i) advocacy/health promotion (including working with family); (ii) assessment/case management; (iii) behavioural interventions; (iv) communication; (v) leadership and the nurse’s role within the multidisciplinary team; (vi) functions regarding medication administration; and (vii) safety/risk management. There is a paucity of research about the role of nurses working with people with DD, although a number of opinion-based articles exist. This article identifies a need for the role of the nurse working in DD to be more clearly articulated and for the development of evidence to guide best practice.

Preventing the selection of “deaf embryos” under the Human Fertilisation and Embryology Act 2008 : problematizing disability?

Section 14(4) of the Human Fertilisation and Embryology Act 2008 imposes – within the general licensing conditions listed in the Human Fertilisation and Embryology Act 1990 – a prohibition to prevent the selection and implantation of embryos for the purpose of creating a child who will be born with a “serious disability.” This article offers a perspective that demonstrates the problematic nature of the consultation, review, and legislative reform process surrounding s 14(4). The term “serious disability” is not defined within the legislation, but we highlight the fact that s 14(4) was passed with the case of selecting deaf children in mind. We consider some of the literature on the topic of disability and deafness, which, we think, casts some doubt on the view that deafness is a “serious disability.” The main position we advance is that the lack of serious engagement with alternative viewpoints during the legislative process was unsatisfactory. We argue that the contested nature of deafness necessitates a more robust consultation process and a clearer explanation and defence of the normative position that underpins s 14(4).

Copyright protections and disability rights : turning the page to a new international paradigm

This paper argues that governments around the world need to take immediate coordinated action to reverse the 'book famine.' There are over 129 million book titles in the world, but persons with print disabilities can obtain less than 7% of these titles in formats that they can read. The situation is most acute in developing countries, where less than 1% of books are accessible. Two recent international developments – the United Nations Convention on the Rights of Persons with Disabilities (‘CRPD’) and the new Marrakesh Treaty to Facilitate Access to Published Works for Persons who are Blind, Visually Impaired, or otherwise Print Disabled (somewhat ironically nicknamed the ‘VIP Treaty’) – suggest that nation states are increasingly willing to take action to reverse the book famine. The Marrakesh Treaty promises to level out some of the disparity of access between people in developed and developing nations and remove the need for each jurisdiction to digitise a separate copy of each book. This is a remarkable advance, and suggests the beginnings of a possible paradigm shift in global copyright politicsmade all the more remarkable in the face of heated opposition by global copyright industry representatives. Now that the Marrakesh Treaty has been concluded, however, we argue that a substantial exercise of global political will is required to (a) invest the funds required to digitise existing books; and (b) avert any further harm by ensuring that books published in the future are made accessible upon their release.

Genotypes of the MTHFR C677T and MTRR A66G genes act independently to reduce migraine disability in response to vitamin supplementation

BACKGROUND: Migraine is a chronic disabling neurovascular condition that may in part be caused by endothelial and cerebrovascular disruption induced by hyperhomocysteinaemia. We have previously provided evidence indicating that reduction of homocysteine by vitamin supplementation can reduce the occurrence of migraine in women. The current study examined the genotypic effects of methylenetetrahydrofolate reductase (MTHFR) and methionine synthase reductase (MTRR) gene variants on the occurrence of migraine in response to vitamin supplementation. METHODS: This was a 6-month randomized, double-blinded placebo-controlled trial of daily vitamin B supplementation (B(6), B(9) and B(12)) on reduction of homocysteine and of the occurrence of migraine in 206 female patients diagnosed with migraine with aura. RESULTS: Vitamin supplementation significantly reduced homocysteine levels (P<0.001), severity of headache in migraine (P=0.017) and high migraine disability (P=0.022) in migraineurs compared with the placebo effect (P>0.1). When the vitamin-treated group was stratified by genotype, the C allele carriers of the MTHFR C677T variant showed a higher reduction in homocysteine levels (P<0.001), severity of pain in migraine (P=0.01) and percentage of high migraine disability (P=0.009) compared with those with the TT genotypes. Similarly, the A allele carriers of the MTRR A66G variants showed a higher level of reduction in homocysteine levels (P<0.001), severity of pain in migraine (P=0.002) and percentage of high migraine disability (P=0.006) compared with those with the GG genotypes. Genotypic analysis for both genes combined indicated that the treatment effect modification of the MTRR variant was independent of the MTHFR variant. CONCLUSION: This provided further evidence that vitamin supplementation is effective in reducing migraine and also that both MTHFR and MTRR gene variants are acting independently to influence treatment response in female migraineurs.

Communicating personal amnesty : a model for health promotion in an Australian disability context

Currently pathological and illness-centric policy surrounds the evaluation of the health status of a person experiencing disability. In this research partnerships were built between disability service providers, community development organizations and disability arts organizations to build a translational evaluative methodology prior to implementation of an arts-based workshop that was embedded in a strengths-based approach to health and well-being. The model consisted of three foci: participation in a pre-designed drama-based workshop program; individualized assessment and evaluation of changing health status; and longitudinal analysis of participants changing health status in their public lives following the culmination of the workshop series. Participants (n = 15) were recruited through disability service providers and disability arts organizations to complete a 13-week workshop series and public performance. The study developed accumulative qualitative analysis tools and member-checking methods specific to the communication systems used by individual participants. Principle findings included increased confidence for verbal and non-verbal communicators; increased personal drive, ambition and goal-setting; increased arts-based skills including professional engagements as artists; demonstrated skills in communicating perceptions of health status to private and public spheres. Tangential positive observations were evident in the changing recreational, vocational and educational activities participants engaged with pre- and post- the workshop series; participants advocating for autonomous accommodation and health provision and changes in the disability service staff's culture. The research is an example of translational health methodologies in disability studies.

The effects of vitamin supplementation and MTHFR (C677T) genotype on homocysteine-lowering and migraine disability

BACKGROUND: Migraine is a prevalent and debilitating disease that may, in part, arise because of disruption in neurovascular endothelia caused by elevated homocysteine. This study examined the homocysteine-lowering effects of vitamin supplementation on migraine disability, frequency and severity and whether MTHFRC677T genotype influenced treatment response. METHODS: This was a randomized, double-blind placebo, controlled trial of 6 months of daily vitamin supplementation (i.e. 2 mg of folic acid, 25 mg vitamin B6, and 400 microg of vitamin B12) in 52 patients diagnosed with migraine with aura. FINDINGS: Vitamin supplementation reduced homocysteine by 39% (approximately 4 mumol/l) compared with baseline, a reduction that was greater then placebo (P=0.001). Vitamin supplementation also reduced the prevalence of migraine disability from 60% at baseline to 30% after 6 months (P=0.01), whereas no reduction was observed for the placebo group (P>0.1). Headache frequency and pain severity were also reduced (P<0.05), whereas there was no reduction in the placebo group (P>0.1). In this patient group the treatment effect on both homocysteine levels and migraine disability was associated with MTHFRC677T genotype whereby carriers of the C allele experienced a greater response compared with TT genotypes (P<0.05). INTERPRETATION: This study provides some early evidence that lowering homocysteine through vitamin supplementation reduces migraine disability in a subgroup of patients. Larger trials are now warranted to establish whether vitamin therapy is a safe, inexpensive and effective prophylactic option for treatment of migraine and whether efficacy is dependant on MTHFRC677T genotype.