Abstract
Informed by a critical turn underway in rural gerontology, this article explores how the intersection of global and local trends relating to population aging and rural change create ...contested spaces of rural aging. The aim is to build our understanding of rural as a dynamic context within which the processes, outcomes, and experiences of aging are created, confronted, and contested by older adults and their communities. A review of key developments within gerontology and rural studies reveals how competing policies, discourses, and practices relating to healthy aging and aging in place, rural citizenship and governmentality, and social inclusion and inequality combine in particular ways to empower or disempower a diverse range of older rural adults aging in a diverse range of rural communities. The article provides a contextually sensitive perspective on potential sources of conflict and exclusion for older adults in dynamic rural spaces and further enhances our understanding of how rural physical and social environments are constructed and experienced in older age. A framework for interrogating emergent questions about aging in rural contexts is developed and implications for advancing research, policy, and practice are discussed.
For 50 years, the World Federation of Hemophilia (WFH) has been working globally to close the gap in care and to achieve Treatment for All patients, men and women, with haemophilia and other ...inherited bleeding disorders, regardless of where they might live. The WFH estimates that more than one in 1000 men and women has a bleeding disorder equating to 6,900,000 worldwide. To close the gap in care between developed and developing nations a continued focus on the successful strategies deployed heretofore will be required. However, in response to the rapid advances in treatment and emerging therapeutic advances on the horizon it will also require fresh approaches and renewed strategic thinking. It is difficult to predict what each therapeutic advance on the horizon will mean for the future, but there is no doubt that we are in a golden age of research and development, which has the prospect of revolutionizing treatment once again. An improved understanding of “optimal” treatment is fundamental to the continued evolution of global care. The challenges of answering government and payer demands for evidence‐based medicine, and cost justification for the introduction and enhancement of treatment, are ever‐present and growing. To sustain and improve care it is critical to build the body of outcome data for individual patients, within haemophilia treatment centers (HTCs), nationally, regionally and globally. Emerging therapeutic advances (longer half‐life therapies and gene transfer) should not be justified or brought to market based only on the notion that they will be economically more affordable, although that may be the case, but rather more importantly that they will be therapeutically more advantageous. Improvements in treatment adherence, reductions in bleeding frequency (including microhemorrhages), better management of trough levels, and improved health outcomes (including quality of life) should be the foremost considerations. As part of a new WFH strategic plan (2012–2014) the WFH has identified several key initiatives for particular emphasis – continuation of the Global Alliance for Progress (GAP) program, a new initiative to address underserved countries and regions (The Cornerstone Initiative), enhancing health outcomes research and analysis, and a new research mentorship program. Despite our progress to date in closing the global gap in care, our work is not complete. Too many patients remain undiagnosed and too few receive adequate treatment. This paper will also discuss historical, present and future challenges and opportunities to close the gap in care and achieve Treatment for All.
This paper contributes to the literature on Indigenous health, human dimensions of climate change, and place-based dimensions of health by examining the role of environment for Inuit health in the ...context of a changing climate. We investigated the relationship between one key element of the environment – sea ice – and diverse aspects of health in an Inuit community in northern Canada, drawing on population health and health geography approaches. We used a case study design and participatory and collaborative approach with the community of Nain in northern Labrador, Canada. Focus groups (n = 2), interviews (n = 22), and participant observation were conducted in 2010–11. We found that an appreciation of place was critical for understanding the full range of health influences of sea ice use for Inuit. Negative physical health impacts were reported on less frequently than positive health benefits of sea ice use, which were predominantly related to mental/emotional, spiritual, social, and cultural health. We found that sea ice means freedom for sea ice users, which we suggest influences individual and collective health through relationships between sea ice use, culture, knowledge, and autonomy. While sea ice users reported increases in negative physical health impacts such as injuries and stress related to changing environmental conditions, we suggest that less tangible climate change impacts related to losses of health benefits and disruptions to place meanings and place attachment may be even more significant. Our findings indicate that climate change is resulting in and compounding existing environmental dispossession for Inuit. They also demonstrate the necessity of considering place meanings, culture, and socio-historical context to assess the complexity of climate change impacts on Indigenous environmental health.
•Sea ice use means Inuit autonomy, plus mental, cultural, and social health benefits.•Changing environment is altering place meanings, reducing access to health benefits.•Climate change is an agent of environmental dispossession for Inuit.•Need to consider place meanings to understand climate influences on Indigenous health.
Age-friendly initiatives often are motivated by a single funding injection from national or sub-national governments, frequently challenging human and financial resources at the community level. To ...address this problem, this paper examines the challenges and opportunities to sustaining age-friendly programs in the context of a Canadian age-friendly funding program. Based on a qualitative thematic content analysis of interview data with 35 age-friendly committee members drawn from 11 communities, results show that age-friendly sustainability may be conceptualized as an implementation gap between early development stages and long-term viability. Consistent over-dependence on volunteers and on committees' limited capacity may create burnout, limiting sustainability and the extent to which communities can truly become "age-friendly". To close this implementation gap while still remaining true to the grass-roots intention of the global age-friendly agenda, sustainable initiatives should include community champions, multi-disciplinary and cross-sector collaborations, and systemic municipal involvement.
Rural fire services increasingly rely on older volunteers, providing an opportunity to examine the challenges of the ageing volunteer base that is underway in rural communities. To advance knowledge ...on the phenomena of ‘older voluntarism’, a case study of a rural volunteer fire department in Ontario, Canada was undertaken, drawing on semi-structured interviews with 24 fire service members. Findings from an iterative collaborative qualitative analysis demonstrate that the dynamics and intergenerational challenges of ageing volunteers and rural interconnectedness and cohesion combine to influence the experiences and sustainability of older volunteers, volunteer-based services and ageing rural places. The discussion advances a framework for understanding personal, program and community sustainability of rural ageing, and highlights emergent questions for research, policy and practice to guide further research into the sustainability of older voluntarism in ageing rural communities.
•Rural volunteer fire departments act as catalyst for rural community sustainability.•Experiences of volunteer firefighters provide insights into the challenges of older voluntarism in ageing rural places.•The dynamics of age within the department pose challenges for the sustainability of rural volunteer fire departments.•Challenges of older voluntarism are mitigated through cohesion of volunteer-based programs and ageing rural communities.•Age and the nature of rural communities raise important questions regardings the sustainability of older voluntarism.
Research into the sustainability of age-friendly initiatives is important and timely, particularly from the rather neglected perspective of older adults living in non-metropolitan (rural) ...environments. This paper addresses this gap by reporting on a Canadian rural community case study to understand the perspectives of older adults on the implementation and sustainability of their local age-friendly program. Findings from exploratory interviews with 10 older adults suggest that rural age-friendly initiatives may be limited in their ability to achieve larger-scale outcomes aimed at addressing broad aging issues facing rural communities. Further, our findings demonstrate that those ‘aging in place’ may continue to do so with the support of age-friendly programing, while those ‘stuck in place’ are largely unaffected by age-friendly programs. We advocate for additional in-depth examinations of rural age-friendly sustainability, including a greater emphasis on the diversity of older adult perspectives.
•Rural communities are hindered in their ability to implement larger-scale initiatives aimed at addressing aging issues.•Older adult perspectives provide insight into the scope, reach and sustainability of rural age-friendly programs.•Older adults' experience with age-friendly programs are influenced by their life course and the dynamic of their community.•Older adults ‘aging in place’ are supported by age-friendly programing, while those ‘stuck in place’ are largely unaffected by those programs.
Class II myosin complexes are responsible for muscle contraction as well as other non-sarcomeric contractile functions in cells. Myosin heavy chain molecules form the core of these structures, while ...light chain molecules regulate their stability and function. MYL9 is a light chain isoform that is thought to regulate non-sarcomeric myosin. However, whether this in only in specific cell types or in all cells remains unclear. To address this, we generated MYL9 deficient mice. These mice die soon after birth with abnormalities in multiple organs. All mice exhibited a distended bladder, shortening of the small intestine and alveolar overdistension in the lung. The Myl9 allele in these mice included a LacZ reporter knockin that allowed for mapping of Myl9 gene expression. Using this reporter, we show that MYL9 expression is restricted to the muscularis propria of the small intestine and bladder, as well as in the smooth muscle layer of the bronchi in the lung and major bladder vessels in all organs. This suggests that MYL9 is important for the function of smooth muscle cells in these organs. Smooth muscle dysfunction is therefore likely to be the cause of the abnormalities observed in the intestine, bladder and lung of MYL9 deficient mice and the resulting neonatal lethality.
Recent efforts to better understand how rural communities are coping with population ageing have highlighted ageing rural volunteers as key issues for ageing in place of rural residents and the ...sustainability of ageing rural communities. Drawing on a case study of a volunteer-based rural public library in Ontario, Canada, this paper explores this issue from the perspectives of volunteers, library staff and community stakeholders to better understand the experiences of older volunteers and dynamics of older voluntarism, and how they connect to rural community development. Findings from interviews and focus groups reveal how the opportunities and challenges associated with older voluntarism (such as participation and wellbeing vs. burden of care and conflict) can inform our understanding of rural ageing in general and the ‘contested spaces of rural ageing’ in particular. The conceptual and applied implications of researching older voluntarism in ageing rural communities, via social institutions such as libraries, are discussed.
•Findings about the challenges and opportunities facing older volunteers (or 'older voluntarism') inform our understanding of rural ageing.•Older voluntarism is conceptualized and observed to be a particular form of 'contested spaces of rural ageing'.•Activities and experiences of older volunteers impacts the sustainability of rural public services (e.g., libraries).•Burden of care, territorial conflict and loyaly motivate older volunteers to overcome barriers of participation.•Rural public libraries are sources of insight into ageing, voluntarism and community development.
Achieving the unimaginable: Health equity in haemophilia Skinner, Mark W.; Nugent, Diane; Wilton, Pam ...
Haemophilia : the official journal of the World Federation of Hemophilia,
January 2020, Letnik:
26, Številka:
1
Journal Article
Recenzirano
Odprti dostop
Historically, treatment based on the availability of clotting factor replacement has resulted in an arcane guideline for the correction of factor deficiencies in people with haemophilia (PwH). While ...all other disease entities seek to restore function to a normal level, PwH are restricted to factor nadirs still equivalent to mild or moderate disease, resulting in continued risk of bleeding. A new treatment paradigm is needed based on the defined needs of PwH. A treatment model was developed by a panel of haemophilia providers, patient advocates and health economists to establish specific treatment milestones and targeted outcomes. The panel defined a series of treatment milestones to characterize the activity and outcomes linked to level of factor deficiency correction. All agreed that the ultimate goal should be ‘functional cure’ and ‘health equity’. Seven levels to achieving a functional cure were identified, (a) Sustain life; (b) Minimal joint impairment; (c) Freedom from any spontaneous bleeds; (d) Attainment of ‘normal’ mobility; (e) Able to sustain minor trauma without additional intervention; (f) Ability to sustain major surgery or trauma; and (g) Normal haemostasis. A parallel set of patient‐reported outcomes to achieve health equity was identified. These guidelines are now comparable with other disorders where the goal is to replace missing proteins to attain normal activity levels. As we are no longer limited by plasma supply due to the manufacture of recombinant factors, mimetics, and the early success of gene therapy, health equity is now achievable.
PDF
