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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

Disadvantage and disability: Experiences of people from refugee backgrounds with disability living in Australia

KING, Julie
EDWARDS, Niki
CORREA-VELEZ, Ignacio
HAIR, Sara
FORDYCE, Maureen
2016

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This study of people of refugee backgrounds explored how disability is culturally constructed in the family context, including barriers and enablers to social inclusion and service uptake in Brisbane, Australia. Key themes included the lived experiences of people with disability in their country of origin; experiences of the functioning of government and non-government services; family; barriers in communication and language; transport as a barrier to access; the community of people from their country within Australia; and service gaps and needs. Participants had experienced stigma in their country of origin, and for some this continued within their community of origin. Language and lack of engagement by government and non-government services contributed to service gaps and access barriers. Family remained important. People from refugee backgrounds living in Australia experience significant and compounding barriers to service access, and have unmet needs. They have a limited voice in the current policy context, and lack knowledge and support to facilitate interactions with the current system. Further research would assist in development of a more detailed understanding of these issues.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 1

Promoting social inclusion in adaptation to climate change : discussion paper

STANLEY, Janet
February 2010

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"This paper is a scoping study on the numbers and location of people who may have particular adaptation difficulties, the resources which are presently in place to respond to this identified need and the additional resources needed to prevent growth in the numbers of people in the region who will have difficulties adapting to climate change. The paper considers ways of addressing adaptation needs, particularly how local communities can be assisted to provide social capital and resources to improve their resilience"
Monash Sustainability Institute Report 09/4

International best practices in universal design : a global review

DION, Betty
et al
August 2007

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This review provides an international overview of the technical information on accessibility criteria for the built environment that is being used by countries as they prepare to ratify the Convention on the Rights of Persons with Disabilities. The document compares the accessibility codes and standards from 16 international jurisdictions, including the new standards from Canada and the USA, as well as standards from Mexico, Uruguay, Sweden, Ireland, Spain, South Africa, Bangladesh, Philippines, Malaysia, Singapore, Australia and Lebanon

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