The Emerging Story of Disability Associated with Lymphatic Filariasis: A Critical Review

Globally, 40 million people live with the chronic effects of lymphatic filariasis (LF), making it the second leading cause of disability in the world. Despite this, there is limited research into the experiences of people living with the disease. This review summarises the research on the experiences of people living with LF disability. The review highlights the widespread social stigma and oppressive psychological issues that face most people living with LF-related disability. Physical manifestations of LF make daily activities and participation in community life difficult. The findings confirm the need for the Global Programme to Eliminate Lymphatic Filariasis (GPELF) to support morbidity management activities that address the complex biopsychosocial issues that people living with LF-related disability face

Developing curriculum to meet community rehabilitation needs: a multidisciplinary approach to education

It is increasingly acknowledged that community based therapists face unique and challenging situations when working in rural and remote settings. Skills required within community based therapy roles are specialised, multi-faceted and demanding, particularly within rural practice. In response to the expressed needs of clinicians, managers and clients of community rehabilitation services, James Cook University undertook a year long project aimed at increasing curriculum that prepared allied health students to work in community based roles. This project was undertaken using feedback from clinicians and managers to develop curriculum that would prepare graduates for the specific demands and skills required of therapists working in community based settings. The university was particularly focused on the development of graduate attributes which prepared students for practice in rural and remote community settings. The paper will outline specific outcomes which occurred as a result of the project. Feedback from students will be discussed, with a discussion of their expectations and views surrounding working within community settings. Future directions within the university will be discussed in regards to postgraduate study options for clinicians working in rural and remote regions. Finally, the curriculum's relevance to rural and remote practice will be discussed with a particular focus on potential outcomes for community based services and rural and remote regions

Hiccups and hurdles: a "warts and all" look at the online revolution

Within tertiary education, online learning tools are being used with greater frequency than ever before. Online education has been hailed as a method of providing flexible education to first year students with complex family, work and social commitments. However, little research has been conducted looking at the pragmatic and pedagogical issues educators face when developing an online learning curriculum. This nuts and bolts session explores the unique challenges faced by staff at James Cook University when developing the first year of an online health degree. The interactive session will then go on to explore the key ethical and pragmatic issues faced by educators in developing online curricular in today’s working environment

Developing curriculum to meet community rehabilitation needs:\ud a multidisciplinary approach to education

It is increasingly acknowledged that community based therapists face unique and challenging situations when working in rural and remote settings. Skills required within community based therapy roles are specialised, multi-faceted and demanding, particularly within rural practice. \ud In response to the expressed needs of clinicians, managers and clients of community rehabilitation services, James Cook University undertook a year long project aimed at increasing curriculum that prepared allied health students to work in community based roles. This project was undertaken using feedback from clinicians and managers to develop curriculum that would prepare graduates for the specific demands and skills required of therapists working in community based settings. The university was particularly focused on the development of graduate attributes which prepared students for practice in rural and remote community settings. \ud The paper will outline specific outcomes which occurred as a result of the project. Feedback from students will be discussed, with a discussion of their expectations and views surrounding working within community settings. Future directions within the university will be discussed in regards to postgraduate study options for clinicians working in rural and remote regions. Finally, the curriculum's relevance to rural and remote practice will be discussed with a particular focus on potential outcomes for community based services and rural and remote regions. \u

Measuring the impact of lymphatic filariasis: the development of a quality of life tool using mixed methods

Lymphatic filariasis (LF) is a neglected tropical disease and the leading cause of physical impairment in the world. Globally, it is estimated that 40 million people live with LF-disability.\ud \ud In its chronic stages, LF causes scrotal hydrocele and lymphoedema of the limbs and genitals. Approximately twenty five million men have LF-related scrotal hydrocele and 15 million people live with LF-related lymphoedema (World Health Organization [WHO], 2010). The disease is estimated to equate to 5.54 million disability adjusted life years (Fenwick, 2012). Impacts of LF-disability expand beyond physical impairment; social isolation, stigma, poverty and reduced workplace and school productivity are also common impacts of LF-disability.\ud \ud The Global Programme to Eliminate Lymphatic Filariasis (GPELF) has two pillars of focus (WHO, 2012). The first is to interrupt transmission of the disease through mass drug administration (MDA) programs. The second is to alleviate suffering due to LF-disability. The GPELF as a whole has focused efforts and funding on addressing the first pillar, whilst the second pillar remains poorly documented and addressed.\ud \ud Despite LF being a leading cause of disability globally, little research has been conducted on the lived experience of LF-disability. It remains unknown how LF-disability impacts quality of life (QOL) and what interventions improve the QOL for people with chronic manifestations of the disease.\ud \ud The GPELF has acknowledged the need for disability metrics to capture the impact of LF-disability and the outcomes of intervention programs (WHO, 2010). However, there remain no LF-specific disability measurement tools. This research developed and field tested an LFspecific QOL tool for use in Bangladesh.\ud \ud A literature review of the current studies of LF-disability found minimal research into the experiences of LF-disability. The majority of the qualitative research in the field was found to be lacking methodological rigour. However, there were 46 common findings across the studies indicating that some experiences may be common to LF-disability. These included negative impacts on daily activities, participation and psychological wellbeing. There were also a number of environmental barriers (such as attitudes and a lack of access to treatment) and personal factors (such as poverty) that compounded the impact of LF-disability for people across the studies. The review found no research on LF-disability in Bangladesh.\ud \ud A further review of the tools currently used in the field identified six tools that have been used or recommended for use to measure the impacts of LF-disability. These tools were generic disability or QOL tools and none were specific to LF. A review of the tools against known impacts of LF-disability found that the tools poorly measured the known impacts that were culturally and clinically relevant for people living with LF-disability. These findings confirmed the need for an LF-specific tool to be developed.\ud \ud Only one tool used in the field, the World Health Organization Quality of Life Brief (WHOQOL-Bref), had a Bangladeshi version. Cognitive interviewing was conducted (n=34) to test this tools language and cultural applicability for an LF-endemic population. The study found that 22 of the 26 items in the tool were problematic and that the WHOQOL-Bref Bangladesh was not culturally or linguistically valid for a Bangladeshi population with LF-disability. These findings further justified the development of a new Bangladeshi LF-specific tool.\ud \ud In order to develop a culturally and clinically effective QOL tool for LF in Bangladesh, research was undertaken to identify the constructs of QOL relevant to LF-disability in Bangladesh. Ten focus groups were conducted in Bangladesh with a purposefully selected sample of key informants (n=60). The focus groups identified an additional 43 new impacts of LF-disability relevant to a Bangladeshi context.\ud \ud The impacts found from the literature review (n=46) and in-country focus groups (n=43) were then combined into a tool with 122 items. Back translation occurred to translate the tool from English to Bangla before field testing was completed to test the linguistic and cultural validity of the tool.\ud \ud Cognitive interviews (n=16) were conducted to field test the initial 122 item tool. The interviews identified 41 items with wording, cultural and conceptual issues. The findings of the cognitive interviews informed revision, alteration and removal of many items, however 13 items still remained unresolved from the cognitive interview process.\ud \ud Focus groups were conducted with three patients groups (n=17) to explore if the constructs in the problem items were relevant to people living with LF-disability and if so, what language people used to describe the issues. The focus groups identified that the constructs of 11 problematic items were relevant, however they were described differently in the local language. The language used in the focus groups informed the revision of those 11 items. Two items were deemed to be not applicable and were removed from the tool. Cognitive interviewing (n=6) confirmed that the final 72 items on the tool were culturally and linguistically valid.\ud \ud Reliability testing of the final 72 item tool found the tool to have excellent overall internal consistency (0.917) and confirmed that the tool is reliable for use for community surveys in Bangladesh.\ud \ud The overall findings of this thesis have contributed to the field in the following ways:\ud \ud 1) Contribution to the understanding of LF-disability:\ud \ud - Demonstrated that the evidence into LF-disability is scarce and lacking methodological rigour. - Found that tools currently used in LF-disability measurement fail to capture the majority of the known impacts of the disease.\ud \ud - Identified an additional 43 impacts that relate to LF-disability in Bangladesh.\ud \ud 2) Contribution to cross-cultural QOL tool development methods:\ud \ud - Demonstrated that psychometric testing of international generic tools, such as the WHOQOL-Bref Bangladesh, were insufficient to confirm the linguistic or cultural validity of the tool in a new population.\ud \ud - Evidenced the importance of a mixed methods, iterative approach to cross-cultural tool development and field testing.\ud \ud - Evidenced the importance of cognitive interviewing to instrument testing and refinement.\ud \ud - Demonstrated the use of focus groups to assist with identifying and solving problem items when cognitive interviews fail to identify why an item is problematic.\ud \ud 3) Contribution to LF-disability measurement:\ud \ud - Developed the only QOL tool for LF-disability, the LF-QOL Bangladesh that has demonstrated validity and reliability in the field.\ud \ud Future research should utilise the LF-QOL Bangladesh in community surveys, to identify the impacts of LF-disability across presentation and stages of the disease and look at any potential demographic differences. A test-retest reliability study of the LF-QOL Bangladesh would identify if the tool is suitable for use as an outcome measurement and hence, whether the tool can capture changes in QOL status following intervention.\ud \ud The development of the LF-QOL Bangladesh is a significant contribution to the field and provides the first opportunity to reliably capture the impact of LF-disability in an LF-endemic community

Flexibility in the North: education to meet the unique, challenging and diverse needs of occupational therapy students

Occupational Therapy Students from James Cook University, Townsville, face many unique, challenging and diverse needs when compared to the average Australian university student. This poster will summarise findings from research which reveals the complex social, financial and educational challenges facing students studying occupational therapy within regional Queensland. Participants (N=170) were surveyed using a quantitative survey tool on a range of items covering demographics, life commitments and flexible learning preferences. Findings indicate that flexible learning options such as distance education and online learning would assist students to balance challenging work, family and social commitments. Results informed development of the first flexible delivery occupational therapy program in Australia. The poster will outline how program development provided flexible learning options for students with unique and diverse needs access occupational therapy training

Occupational Deprivation: A Consequence of Australia's Policy of Assimilation

Wilcock (2003) has recently reminded our profession of\ud the importance of understanding the occupational\ud experiences of the past, in order to recognise how\ud historical events impact on the health of individuals\ud and communities today. One area of Australia’s history\ud we have found to be notably absent from occupational\ud therapy and occupational science literature is that of\ud the forced removal of indigenous children from their\ud families. However, we believe this period of Australian\ud history holds many lessons for our profession. Hence,\ud within this paper we aim to give a brief overview of\ud Australia’s policy of assimilation of indigenous\ud Australians and how enactment of this policy deprived\ud indigenous youth of engagement in culturally significant\ud occupations. We argue that this lack of engagement\ud of culturally significant occupations is a clear example\ud of occupational deprivation. Whiteford (2000) describes\ud occupational deprivation as ‘a state of preclusion from\ud engagement in occupations of necessity and/or meaning\ud due to factors that stand outside the immediate\ud control of the individual’ (p. 201).\ud \ud Within this paper, we analyse how the forced removal of children from their families and communities, through the Commonwealth policy of assimilation, was indeed an external force of control that deprived indigenous children of culturally significant occupations.\ud \ud This paper outlines our analysis of three aspects of\ud occupational deprivation we believe resulted from\ud children being forcibly removed from their families.\ud (i) in Deprivation of a culturally significant social environment, we discuss how indigenous children were denied access to their families, and consequently prevented from\ud learning their cultures and their associated roles and\ud occupations; (ii) in Spiritual deprivation of one’s land and\ud story, we examine how children were prevented from\ud engaging in occupations relating to the stories of their\ud people, their land and their role within society (the\ud Dreamings, the Dreamtime and/or the Dreaming); (iii) in Deprivation of initiation processes, we analyse how children were denied their rightful place in initiation processes, ceremonies, and occupations, leading\ud to the preclusion of the establishment of culturally\ud significant roles within their community. We will examine\ud evidence of these significant forms of occupational\ud deprivation in an attempt to gain some insight into an\ud area of occupational justice which, so far, has been left\ud untouched within occupational therapy literature

Occupation: a rights based approach to disability in the Pacific

Currently many of our pacific neighbours are facing political turmoil. A growing body of evidence from the disability sector highlights the occupational issues these populations face as their countries evolve. With Australian aid focused on the Asia-Pacific region, this paper provides evidence of the need for occupational therapists to work within the Pacific, to assist with disability focused projects. Findings will be presented in regards to the occupational issues faced by people with disabilities in the Pacific, in particular, issues of occupational justice and occupational deprivation. These issues will be referenced to the outcomes from numerous disability surveys that have recently been conducted. The authors will present findings from their involvement in The Tongan National Disability Identification Survey. These findings provide evidence of occupational therapy’s unique role in identifying issues faced by people with disabilities in the Pacific. In particular, how occupational therapists have the potential to become leaders for change in a rights based approach to disability. Many of these issues are increasingly relevant to Australian health services

The flexible learning needs and preferences of regional occupational therapy students in Australia

This study aimed to explore the flexible learning needs and preferences of occupational therapy students from a regional Australian university. Participants (n = 170) were surveyed using a quantitative survey tool. Findings were analysed using SPSS to determine significant differences between variable attributes of the student cohort. The survey found that students have complex and competing lifestyle demands, which impact on study. In particular, paid work was found to negatively influence study and the university experience. Traditional face-to-face learning suited most students, however, flexible learning options were preferable for students where paid work, family commitments and geographic location interfered with study. These results will help inform the design and implementation of flexible delivery courses for occupational therapy. Further research is required to explore the experiences of staff and students who are involved in health courses run by flexible delivery