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Characteristics of Outpatients receiving Physical Therapy Services at a Provincial Hospital in Papua New Guinea: A Descriptive Case Study

Saito, Takashi
Bai, Angelberth
Matsui, Nobuko
Izawa, Kazuhiro P
Shuichiro Watanabe
Alfred Malagisa
2020

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Purpose: Development of Physical Therapy (PT) services for people with disability is one of the urgent challenges in the health sector in Papua New Guinea (PNG). However, information on the current status of PT services in PNG is scarce, as also is the case for the hospital-based outpatient PT services. This study aimed to describe the characteristics of outpatients receiving PT services in a provincial hospital in West New Britain (WNB) Province, PNG and to compare them with the characteristics of inpatients.

 

Method: This was a retrospective case study using outpatient and inpatient records. The records of clients receiving PT services as either outpatients (413 records, outpatient group) or inpatients (350 records, inpatient group) were reviewed in relation to sex, age and diagnosis. Comparisons were made between the two groups on basis of quantitative data of the two patient groups .

 

Results: The final analysis comprised 404 records in the outpatient group and 344 records in the inpatient group. In the outpatient group, injury and musculoskeletal disease were forming the most dominant diagnosis groups with 52.5% and 22.0%, respectively. Injury was most common in the age group 20 to 39 years and musculoskeletal diseases was most common in the age group 40 to 59 years. These two diagnosis groups and congenital malformations were significantly more represented among outpatients than among inpatients.

 

Conclusions: Young to middle-aged clients with injury or musculoskeletal disease were predominant among outpatient PT services as compared to inpatient services. The study findings serve to provide information on the current situation and potential needs of hospital-based outpatient PT services in one provincial hospital of PNG. These findings could be the base for planning outpatient PT service in WNB Province and PNG.

The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers

ROBINSON, Sally
GRAHAM, Anne
FISHER, Karen R
NEALE, Kate
DAVY, Laura
JOHNSON, Kelley
HALL, Ed
2020

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The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

Use of technology by orientation and mobility professionals in Australia and Malaysia before COVID-19

DEVERELL, Lil
BHOWMIK, Jahar
LAU, Bee Theng
AL MAHMUD, Abdullah
SUKUNESAN, Suku
ISLAM, Fakir M Amirul
MCCARTHY, Chris
MEYER, Denny
2020

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Purpose

Orientation and Mobility (O&M) professionals teach people with low vision or blindness to use specialist assistive technologies to support confident travel, but many O&M clients now prefer a smartphone. This study aimed to investigate what technology O&M professionals in Australia and Malaysia have, use, like, and want to support their client work, to inform the development of O&M technologies and build capacity in the international O&M profession.

 

Materials and Methods

A technology survey was completed by professionals (n = 36) attending O&M workshops in Malaysia. A revised survey was completed online by O&M specialists (n = 31) primarily in Australia. Qualitative data about technology use came from conferences, workshops and interviews with O&M professionals. Descriptive statistics were analysed together with free-text data.

 

Results

Limited awareness of apps used by clients, unaffordability of devices, and inadequate technology training discouraged many O&M professionals from employing existing technologies in client programmes or for broader professional purposes. Professionals needed to learn smartphone accessibility features and travel-related apps, and ways to use technology during O&M client programmes, initial professional training, ongoing professional development and research.

 

Conclusions

Smartphones are now integral to travel with low vision or blindness and early-adopter O&M clients are the travel tech-experts. O&M professionals need better initial training and then regular upskilling in mainstream O&M technologies to expand clients’ travel choices. COVID-19 has created an imperative for technology laggards to upskill for O&M tele-practice. O&M technology could support comprehensive O&M specialist training and practice in Malaysia, to better serve O&M clients with complex needs.

Life altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions

DAWES, Kate
CARLINO, Ashley
VAN DER BERG, Maayken
KILLINGTON, Maggie
May 2020

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Objective: To investigate the impact of familial acquired brain injury on children and adult family members, including their views of the support provided, gaps and recommendations for future interventions.

 

Research design: Qualitative exploratory study using a phenomenological approach.

 

Method: Twenty-six participants were recruited from 12 families across the South AustralianBrain Injury Rehabilitation Service (SABIRS) and external community brain injury agencies in Adelaide, South Australia. Sixteen children aged 5–18 participated through ten semi-structured interviews. Ten adults attended six interviews. Following transcription and member checking, thematic analyses occurred with pooled data from all interviews undergoing open, axial and selective coding.

 

Main results: Analyses revealed four main themes: (1) help parents help their children, (2) improve family functioning by giving children meaningful roles, (3) staff: don’t leave children “in the dark,” and (4) support for children is not one size fits all.

 

Conclusions: Children and adults reported significant gaps in support offered by acute and brain injury services after familial acquired brain injury. Children and adults need to receive intervention in addition to the patient. To fill identified gaps, participants recommended more input by clinical staff including the use of technology; specifically, the development of age-appropriate applications, educational videos and interactive games.

Catering for ‘very different kids’: distance education teachers’ understandings of and strategies for student engagement

HARRIS, Lois
DARGUSCH, Joanne
AMES, Kate
BLOOMFIELD, Corey
2020

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Compulsory distance education has always sought to be inclusive, providing educational opportunities for K-12 students unable to attend mainstream, face-to-face schools for medical, geographical, or personal reasons. However, how to effectively engage these diverse learners has remained a perpetual challenge, with a need for further investigation into the nature of student engagement with compulsory school distance contexts and how teachers can best support it. This qualitative study used focus groups (n=2 groups, n=16 participants) to examine teacher definitions and student engagement strategies within eKindy-12 distance education in Queensland, Australia. Categorical analysis was conducted using a priori codes for definitions, focusing on four previously established engagement types (i.e. behavioural, emotional, cognitive, and agentic engagement), and in vivo codes for strategies. Teacher definitions focused strongly on behavioural engagement, but most also contained elements of emotional and cognitive engagement; agentic engagement was only occasionally evidenced via practice descriptions. Teachers described engaging students by: building relationships, creating a safe classroom environment through differentiation, using inclusive technological tools to facilitate interaction and monitor progress, making learning fun and relevant, drawing on school-wide pedagogical frameworks and teaching strategies, and encourage self-regulation. Findings suggest distance education teachers face unique challenges around evidencing engagement and supporting student agency.

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

Sport coaches as policy actors: an investigation of the interpretation and enactment of disability and inclusion policy in swimming in Victoria Australia

HAMMOND, Andrew M
PENNEY, Dawn
JEANES, Ruth
2019

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This paper draws upon education policy sociology, and sport coaching literature, in critically examining sport coaches as policy actors. Stephen Ball and colleagues’ conceptualisation of different policy actor positions and roles provided the framework for research that investigated how eight professional swimming coaches in Victoria, Australia, interpreted and enacted disability and inclusion policy. A discourse analysis of semi-structured interviews with the eight coaches reveals the complexities associated with how and why different coaches interpret and enact disability and inclusion policy imperatives in different ways in their specific club contexts. Data are presented that shows coaches adopting multiple and hybrid policy actor positions and roles as disability and inclusion policy was interpreted, translated and ultimately, expressed as pedagogic rules and practices. Our discussion brings to the fore questions about power, agency and control in coaching, while highlighting both limits and possibilities for the enactment of inclusive disability sport policies by swimming coaches working in Victoria, Australia. In conclusion we suggest that this research illustrates that coaches are capable of enacting social change, and have some agency to do so, but at the same time appear constrained by established discourses that shape policy and give important direction to pedagogic practice. We advocate that further in-depth research is required into the coaching policy-practice nexus, particularly as it relates to the advancement of equity and inclusion.

Interpretative accounts of work capacity assessment policy for young adults with disabilities

STAFFORD, Lisa
MARSTON, Greg
BEATSON, Amanda
CHAMORRO-KOC, Marianella
DRENNAN, Judy
2019

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Young adults with disabilities are a specific target of the welfare-to-work policy introduced by many OECD countries over the past decade. The implementation of these policies is a significant concern for service delivery organisations and advocates in Australia and internationally due to complex intersecting structural barriers that persist for many young adults with disabilities. A particular focus of this article is work capacity assessments. Drawing on socio-political theories and interpretive policy analysis, the 22 in-depth interviews with personnel from service delivery organisations and advocacy organisations reveal how the deemed capacity to work process is not only interpreted as flawed, but the current policy approach disables young adults, perpetuates stigma, and creates division between service users and service providers. The accounts reinforce the need to contest such assessments and instead turn towards a rights-based capability approach permitting young adults with disability self-determination over their education-to-employment pathway.

Impact of transition to an individualised funding model on allied health support of participation opportunities

FOLEY, Kristen
ATTRILL, Stacie
MCALLISTER, Sue
BREBNER, Chris
February 2019

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Introduction: The National Disability Insurance Scheme is the new consumer-controlled funding system for people with disability in Australia, and is expected to enhance participation outcomes of people with disability. This research explored participation opportunities for people with disability during the formative period of transition to the scheme, through stakeholder accounts of changes in allied health service contexts.

 

Materials and methods: Qualitative data were generated during interviews, workshops and meetings with industry, policy, practice and education stakeholders involved in scheme services. Inductive coding explored key themes within the data. The International Classification of Functioning model was then applied as a deductive coding framework to illuminate how the scheme was perceived to be impacting participation opportunities for recipients of scheme funding.

 

Results and discussion: Using the International Classification of Functioning helped us illuminate whether changes resulting from scheme transition posed participation opportunities or barriers for scheme recipients. Research participants often framed these changes negatively, even when examples suggested that changes had removed participation barriers for scheme recipients. Some participants viewed changes as obstructing equitable and quality professional practice. We explore potential opportunities to resolve tensions that also optimise the participation outcomes of individuals who receive services through individualised funding.

Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability

DOUGLAS, Jacinta
BIGBY, Christine
November 2018

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Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains.

 

Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway.

 

Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.

 

Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.

Understanding barriers, enablers, and long-term adherence to a health behavior intervention in people with multiple sclerosis

BARNARD, Emma
BROWN, Chelsea R
WEILAND, Tracey J
JELINEK, George A
MARCK, Claudia H
October 2018

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Background: The optimal management strategy for multiple sclerosis (MS), and many other chronic diseases, likely involves health behavior modification. Multimodal behavioral interventions may be most effective, but little is known about long-term adherence in people with MS.

 

Methods: This qualitative study assessed barriers and enablers to long-term adherence by people with MS who self-selected for a 5-day health behavior intervention 3–5 years prior. Thirteen women and five men participated in semi-structured phone interviews, which were transcribed and thematically analyzed.

 

Results: The experience was described as useful for information gathering, decision making, and practical strategies regarding health behaviors. The majority still followed supplementation and dietary recommendations most of the time, although consuming non-recommended food while eating out was common. Support at home, ability and enjoyment in food preparation, and ability to resist unhealthy foods were both barriers and enablers. Adherence to “time-consuming” exercise and meditation recommendations were less common and episodic. Many reported competing interests on time from work and family; and barriers including injuries and symptoms, weather, financial or geographical barriers, and lack of person-centred support and motivation. Increased fitness and mobility, weight loss, and a sense of accomplishment and control were advantages and motivators. Practical and attitudinal strategies employed included planning, tailoring activities to ability and preference, and self-monitoring.

 

Conclusion: While most people attempted to engage with all components of the intervention initially, only some still engaged with all components, and none to the recommended levels. These data can inform future quantitative studies and health behavior interventions.

The Convention on the Rights of Persons with Disabilities and its implications for the health and wellbeing of indigenous peoples with disabilities: A comparison across Australia, Mexico and New Zealand

RIVAS VELARDE, Minerva C
O'BRIEN, Patricia
PARMENTER, Trevor R
2018

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This paper explores how the expressed health needs of Indigenous peoples with disabilities resonate with the mandate of Article 25 ‘Health’ of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The perceptions of indigenous peoples with disabilities are investigated, regarding their access to, and expectations of, health care. Their views are compared to those of health workers, senior bureaucrats and United Nations delegates. An exploratory case study approach was taken to compare three jurisdictions: Australia, Mexico and New Zealand. The data collection techniques used involved semi-structured interviews, focus groups and field notes. The findings suggest that the health needs of indigenous peoples with disabilities are largely underserved and misunderstood by health departments. Specialised and preventive health care for those with disabilities was found to be particularly problematic. Poverty, discrimination and disenfranchisement emerged as being the possible major determinants of the ill health experienced by indigenous peoples with disabilities. The findings and conclusions outlined in this paper advocate the need to build capacity and rights literacy for indigenous peoples with disabilities, particularly with respect to the CRPD, in order to enhance its impact on the health of indigenous people. A legitimate redistribution of resources and decision-making in response to the expressed health needs of indigenous peoples with disabilities is needed if the vision of the CPRD is to be realised in relation to Article 25. 

 

Disability and the Global South, 2018, Vol.5, No. 2

Inclusion of marginalised Aboriginal and Torres Strait Islander peoples with neurocognitive disability in the National Disability Insurance Scheme (NDIS)

TOWNSEND, Clare
McINTYRE, Michelle
LAKHANI, Ali
WRIGHT, Courtney
WHITE, Paul
BISHARA, Jason
CULLEN, Jennifer
2018

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Given the ambiguity surrounding the extent and experience of neurocognitive disability (NCD) among marginalised Aboriginal and/or Torres Strait Islander peoples in Australia, evidence regarding the level and nature of NCD is crucial to ensure equitable access and inclusion into the National Disability Insurance Scheme (NDIS). This paper reports the results of the implementation of The Guddi Protocol (a culturally informed and appropriate screening protocol for Aboriginal and/or Torres Strait Islander peoples) at two locations in Queensland. Results indicated high levels of NCD, and additional qualitative data revealed a number of factors associated with the complex disablement of study participants, namely: i) intergenerational trauma; ii) a social context of disadvantage, marginalisation and exclusion; and iii) the nonidentification of disability. The results are linked to implications for NDIS inclusion for this population, and recommendations are made. Unless the extent and nature of complex disability and the issues surrounding culturally safe policy, and service design and engagement are addressed with and by Aboriginal and Torres Strait Islander peoples, including those who experience complex disablement, marginalised people will continue to be effectively excluded from the NDIS.

 

Disability and the Global South, 2018, Vol.5, No. 2

Re-theorising inclusion and reframing inclusive practice in physical education

PENNEY, Dawn
JEANES, Ruth
O'CONNOR, Justen
ALFREY, Laura
2017

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Inclusion remains a key political agenda for education internationally and is a matter that teachers across subject communities and phases of education are challenged to respond to. In physical education specifically, research continues to highlight that current practice often reaffirms rather than challenges established inequities. This paper critically explores the understandings of inclusion that contribute to this situation and addresses the challenge of advancing inclusion in physical education from conceptual and pedagogical viewpoints. DeLuca’s [(2013). “Toward an Interdisciplinary Framework for Educational Inclusivity.” Canadian Journal of Education 36 (1): 305–348] conceptualisation of normative, integrative, dialogical and transgressive approaches to inclusion is employed as a basis for critical analysis of current practice and for thinking afresh about inclusive practice in physical education in relation to curriculum, pedagogy and assessment. Analysis informs the presentation of a set of principles that are designed to assist teachers and teacher educators to transform inclusive practice in physical education and in doing so, realise visions for physical education that are articulated in international policy guidelines and contemporary curriculum developments.

Communication Disability in Fiji: Community Cultural Beliefs and Attitudes

HOPF, Suzanne C
MCLEOD, Sharynne
MCDONAGH, Sarah H
RAKANACE, Epenisa N
2017

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Purpose: Beliefs about communication disability vary according to the cultural context, and influence people’s attitudes and help-seeking behaviour. Little is known about Fijians with communication disability or the communities in which they live, and specialist services for people with communication disability are yet to be established in Fiji. An understanding of Fijian beliefs about the causes of communication disability and attitudes towards people with communication disability may inform future service development.

 

Method: An interpretivist qualitative research paradigm and the International Classification of Functioning, Disability and Health (ICF) framework informed this project’s design. Scenarios of adults and children with communication disability were presented to 144 participants, randomly sampled across multiple public spaces in two Fiji cities. Thematic analysis of responses to 15 survey questions revealed participant beliefs about the causes and attitudes towards people with communication disability.

 

Results: Three clusters describing perceived causes emerged from the analysis - internal, external, and supernatural. Major clusters across child and adult scenarios were similar; however, response categories within the scenarios differed. Community attitudes to people with communication disability were predominantly negative. These community attitudes influenced individual participants’ beliefs about educational and employment opportunities for Fijians with communication disability.

 

Conclusion: Determination and acknowledgement of individuals’ belief systems informs development of culturally appropriate intervention programmes and health promotion activities.

 

Implications: Speech-language pathologists and other professionals working with Fijian communities should acknowledge community belief systems and develop culturally-specific health promotion activities, assessments, and interventions.

Entering the SDG era: What do Fijians prioritise as indicators of disability-inclusive education?

SPRUNT, Beth
DEPPELER, Joanne
RAVULO, Kitione
TINAIVUNIVALU, Savaira
SHARMA, Umesh
2017

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Sustainable Development Goal (SDG) 4 is to ‘Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all’ and the targets and indicators for SDG 4 emphasise the importance of measuring outcomes for children with disabilities (United Nations, 2015b). This paper reports on findings from qualitative research investigating Fijian stakeholders’ priorities for measuring success of efforts within a contextually and culturally meaningful process of disabilityinclusive education; that is, achievement of SDG 4 for children with disabilities. The priorities are presented in light of the specific challenges in Fiji to fulfilling this goal. The research presented in this paper is one part of a much larger mixed method study funded by the Australian aid program that aimed to develop and test indicators for the education of children with disabilities in the Pacific (Sharma et al., 2016). Fijian researchers with lived experience of disability undertook key informant interviews and focus group discussions with 28 participants. The findings include the need for or role of: an implementation plan and resourcing to ensure the national inclusive education policy is activated; improved awareness and attitudes; competent, confident and compassionate teachers; disability-specific services and assistive technology; accessible buildings and transport; and the important role of special schools. Inclusive education reform requires that Fiji incorporates and builds on existing strengths in special and inclusive education to ensure that systems and people are prepared and resourced for inclusion. The paper concludes that targets within SDG 4 are compatible with priorities within Fiji, however additional indicators are required to measure locally-prioritized changes related to barriers which need to be addressed if Fiji is to make progress towards the higher-order targets of SDG 4.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

Identifying Rehabilitation Workforce Strengths, Concerns and Needs: A Case Study from the Pacific Islands

GARGETT, Alexandra Lewis
LLEWELLYN, Gwynnyth
SHORT, Stephanie
KLEINITZ, Pauline
2016

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Purpose: This exploratory case study was undertaken to inform capacity development of the rehabilitation workforce in member nations of the Pacific Islands Forum (PIF).

 

Method: Participants at the 1st Pacific CBR Forum in June 2012 were key informants for this study. They comprised the disability focal points from government departments in each of the 14 countries, representatives of DPOs and disability service providers. The study was conducted in 3 phases:  a template to gather data on rehabilitation workers; key informant interviews; and, stakeholder workshops to identify strengths and needs of the rehabilitation workforce in the Pacific.

 

Results: The detailed case study findings suggest two critical drivers for rehabilitation health workforce development in the Pacific context. The first is leadership and commitment from government to serve rehabilitation needs in the community. The second is the urgent need to find alternative ways to service the demand for rehabilitation services as it is highly unlikely that the supply of specialist personnel will be adequate.

 

Conclusions: A multi-sectoral view of health and social service systems is a key element for the development of a rehabilitation health workforce. The endorsement of the WHO Global Disability Action Plan by the World Health Assembly in 2014 further enhances the opportunity to work collaboratively across sectors in Pacific countries. Specialist personnel are and will remain in short supply. There is opportunity for the region to lead the development of alternate workforce mechanisms through the training and supply of skilled community-based rehabilitation personnel.

Exploring Conceptualisations of Disability: A Talanoa approach to Understanding Cultural Frameworks of Disability in Samoa

Picton, Catherine
Horsley, Mike
Knight, Bruce Allen
2016

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Purpose: The concepts of disability were explored from a Samoan cultural frame. The impact of disability conceptualisations on identity development and cultural inclusion were assessed through the Samoan language. The study also evaluated the extent of endorsement of global policy initiatives at a local level.

 

Methods: Through facilitating a Talanoa approach, which is a rich cultural tradition of sharing knowledge, space emerged for dialogue around the lived experiences of members of the disability community in Samoa.

 

Results: Incongruous conceptualisations of disability were identified as a contributing factor in the persistence of stigmatising attitudes and beliefs. Borrowing concepts and terms from moral, medical, and social disability models, this disparity of conceptualisation is reflected in Samoan disability terminology. It was also found that while global policy initiatives are generally politically embraced, they engage more effectively with the community when they areunderpinned by Samoan cultural ontologies.

 

Conclusion: The findings suggest that multiple ideologies regarding rights, capabilities and experiences, challenge the development of identity, self-worth, and inclusion. There is significant value in merging cultural concepts with a social disability model framework. It is important to future development that people with disability can express a sense of cultural identity without risking the right to inclusion and equality.

Participatory Monitoring of Community-Based Rehabilitation and other Disability- Inclusive Development Programmes: the Development of a Manual and Menu

Madden, Rosamond H
et al
2016

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Purpose: This paper describes a three-year research project leading to the development of the CBR Monitoring Manual and Menu (MM&M). The MM&M is a practical toolkit that meets the needs of CBR managers and stakeholders, and is consistent with the philosophy of CBR and community- based disability-inclusive development. It is designed to produce meaningful and locally useful information and data, based on international data standards where possible, to enable aggregation at regional, national and international levels.

 

Methods: Five complementary workstreams of research were carried out from 2011 to 2014: 1) literature review and analysis; 2) participatory action research with CBR stakeholders; 3) analysis and refinement of validity of concepts andstructures; 4) consultation and review; and 5) synthesis of results. This article documents the method and key results of each of the five workstreams, and the lessons learned along the way.

 

Results: The MM&M is now freely available on-line at thttp://sydney.edu. au/health-sciences/cdrp/projects/cbr-monitoring.shtml. Collaboration among members of the development team continues, chiefly via an on-line group to which new members have been welcomed.

 

Conclusion and Implications: At the time of writing, the MM&M is the only international monitoring product, known to the authors, that consciously sets out to reflect both a ‘bottom- up’ and ‘top-down’ perspective of monitoring information and data.To achieve this for a complex programme such as CBR, and to align with its principles, it was essential to use a multi-component and multi-stage strategy for tool development, involving a diverse multidisciplinary team including collaboration with CBR stakeholders.

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