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Critically Examining Diversity In End-Of-Life Family Caregiving: Implications for Equitable Caregiver Support and Canada’s Compassionate Care Benefit

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2012
Abstract: 

Introduction

Family (i.e., unpaid) caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB).

Methods

This analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued.

Results

Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference.

Conclusions

We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced in health policy. Based on our findings, we demonstrate that re-framing categorizations of caregivers can expose specific vulnerabilities and inequities while identifying implications for the CCB program as it is currently administered. From a policy perspective, this analysis demonstrates why diversity needs to be acknowledged in policy circles, including in relation to the CCB, and seeks to counteract single dimensional approaches for understanding caregiver needs at end-of-life. Such findings illustrate how diversity analysis can dramatically enhance evaluative health policy research.

Document type: 
Article
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Social Interactions of Eating Behaviour among High School Students: A Cellular Automata Approach

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2012
Abstract: 

BACKGROUND:Overweight and obesity in children and adolescents is a global epidemic posing problems for both developed and developing nations. The prevalence is particularly alarming in developed nations, such as the United States, where approximately one in three school-aged adolescents (ages 12-19) are overweight or obese. Evidence suggests that weight gain in school-aged adolescents is related to energy imbalance exacerbated by the negative aspects of the school food environment, such as presence of unhealthy food choices. While a well-established connection exists between the food environment, presently there is a lack of studies investigating the impact of the social environment and associated interactions of school-age adolescents. This paper uses a mathematical modelling approach to explore how social interactions among high school adolescents can affect their eating behaviour and food choice.METHODS:In this paper we use a Cellular Automata (CA) modelling approach to explore how social interactions among school-age adolescents can affect eating behaviour, and food choice. Our CA model integrates social influences and transition rules to simulate the way individuals would interact in a social community (e.g., school cafeteria). To replicate these social interactions, we chose the Moore neighbourhood which allows all neighbours (eights cells in a two-dimensional square lattice) to influence the central cell. Our assumption is that individuals belong to any of four states; Bring Healthy, Bring Unhealthy, Purchase Healthy, and Purchase Unhealthy, and will influence each other according to parameter settings and transition rules. Simulations were run to explore how the different states interact under varying parameter settings.RESULTS:This study, through simulations, illustrates that students will change their eating behaviour from unhealthy to healthy as a result of positive social and environmental influences. In general, there is one common characteristic of changes across time; students with similar eating behaviours tend to form groups, represented by distinct clusters. Transition of healthy and unhealthy eating behaviour is non-linear and a sharp change is observed around a critical point where positive and negative influences are equal.CONCLUSIONS:Conceptualizing the social environment of individuals is a crucial step to increasing our understanding of obesogenic environments of high-school students, and moreover, the general population. Incorporating both contextual, and individual determinants found in real datasets, in our model will greatly enhance calibration of future models. Complex mathematical modelling has a potential to contribute to the way public health data is collected and analyzed.

Document type: 
Article

Interpreting the Results of a Modified Gravity Model: Examining Access to Primary Health Care Physicians in Five Canadian Provinces and Territories

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2012
Abstract: 

Background

Primary health care (PHC) encompasses an array of health and social services that focus on preventative, diagnostic, and basic care measures to maintain wellbeing and address illnesses. In Canada, PHC involves the provision of first-contact health care services by providers such as family physicians and general practitioners – collectively referred as PHC physicians here. Ensuring access is a key requirement of effective PHC delivery. This is because having access to PHC has been shown to positively impact a number of health outcomes.

Methods

We build on recent innovations in measuring potential spatial access to PHC physicians using geographic information systems (GIS) by running and then interpreting the findings of a modified gravity model. Elsewhere we have introduced the protocol for this model. In this article we run it for five selected Canadian provinces and territories. Our objectives are to present the results of the modified gravity model in order to: (1) understand how potential spatial access to PHC physicians can be interpreted in these Canadian jurisdictions, and (2) provide guidance regarding how findings of the modified gravity model should be interpreted in other analyses.

Results

Regarding the first objective, two distinct spatial patterns emerge regarding potential spatial access to PHC physicians in the five selected Canadian provinces: (1) a clear north–south pattern, where southern areas have greater potential spatial access than northern areas; and (2) while gradients of potential spatial access exist in and around urban areas, access outside of densely-to-moderately populated areas is fairly binary. Regarding the second objective, we identify three principles that others can use to interpret the findings of the modified gravity model when used in other research contexts.

Conclusions

Future applications of the modified gravity model are needed in order to refine the recommendations we provide on interpreting its results. It is important that studies are undertaken that can help administrators, policy-makers, researchers, and others with characterizing the state of access to PHC, including potential spatial access. We encourage further research to be done using GIS in order to offer new, spatial perspectives on issues of access to health services given the increased recognition that the place-based nature of health services can benefit from the use of the capabilities of GIS to enhance the role that visualization plays in decision-making.

Document type: 
Article
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Use Of Medical Tourism For Hip And Knee Surgery In Osteoarthritis: A Qualitative Examination Of Distinctive Attitudinal Characteristics Among Canadian Patients

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2012
Abstract: 

Background

Medical tourism is the term that describes patients’ international travel with the intention of seeking medical treatment. Some medical tourists go abroad for orthopaedic surgeries, including hip and knee resurfacing and replacement. In this article we examine the findings of interviews with Canadian medical tourists who went abroad for such surgeries to determine what is distinctive about their attitudes when compared to existing qualitative research findings about patients’ decision-making in and experiences of these same procedures in their home countries.

Methods

Fourteen Canadian medical tourists participated in semi-structured phone interviews, all of whom had gone abroad for hip or knee surgery to treat osteoarthritis. Transcripts were coded and thematically analysed, which involved comparing emerging findings to those in the existing qualitative literature on hip and knee surgery.

Results

Three distinctive attitudinal characteristics among participants were identified when interview themes were compared to findings in the existing qualitative research on hip and knee surgery in osteoarthritis. These attitudinal characteristics were that the medical tourists we spoke with were: (1) comfortable health-related decision-makers; (2) unwavering in their views about procedure necessity and urgency; and (3) firm in their desires to maintain active lives.

Conclusions

Compared to other patients reported on in the existing qualitative hip and knee surgery literature, medical tourists are less likely to question their need for surgery and are particularly active in their pursuit of surgical intervention. They are also comfortable with taking control of health-related decisions. Future research is needed to identify motivators behind patients’ pursuit of care abroad, determine if the attitudinal characteristics identified here hold true for other patient groups, and ascertain the impact of these attitudinal characteristics on surgical outcomes. Arthritis care providers can use the attitudinal characteristics identified here to better advise osteoarthritis patients who are considering seeking care abroad.

Document type: 
Article
File(s): 

Chronically Ill Canadians’ Experiences Of Being Unattached To A Family Doctor: A Qualitative Study Of Marginalized Patients In British Columbia

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2012
Abstract: 

Background

Unattached patients do not have a regular primary care provider. Initiatives are being developed to increase attachment rates across Canada. Most existing attention paid to patient unattachment has focused on quantifying the problem and health system costs. Our purpose is to qualitatively identify the implications of chronically ill patients’ experiences of unattachment for health policy and planning to provide policy-relevant insights for Canadian attachment initiatives.

Methods

Three focus groups were conducted with marginalized chronically ill individuals residing in a mid-sized city in British Columbia who are unattached to a family doctor. We use the term marginalized as a descriptor to acknowledge that by virtue of their low socio-economic status and lack of attachment the participants are marginalized in Canada’s health care system Focus groups were structured as an open conversation organized around a series of probing questions. They were digitally recorded and transcribed verbatim. Thematic analysis was employed.

Results

Twenty-six individuals participated in the focus groups. The most common chronic illnesses reported were active drug addiction or recovery (and their associated symptoms), depression, arthritis, and hepatitis C. Participants identified life transitions as being the root cause for not having a family doctor. There was a strong sense that unsuccessful attempts to get a family doctor reflected that they were undesirable patients. Participants wanted to experience having a trusting relationship with a regular family doctor as they believed it would encourage greater honesty and transparency. One of the main health concerns regarding lack of access to a regular family doctor is that participants lacked access to preventative care. Participants were also concerned about having a discontinuous medical record due to unattachment.

Conclusions

Participants perceived that there are many benefits to be had by having attachment to a regular family doctor and that experiencing unattachment challenged their health and access to health care. We encourage more research to be done on the lived experience of unattachment in order to provide on-the-ground insights that policy-makers require in order to develop responsive, patient-centred supports and programs.

Document type: 
Article

Canada's Compassionate Care Benefit: Is it An Adequate Public Health Response to Addressing the Issue of Caregiver Burden in End-of-Life Care?

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2011
Abstract: 

Background: An increasingly significant public health issue in Canada, and elsewhere throughout the developedworld, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economicconsequences. In this article, we specifically examine how Canada’s Compassionate Care Benefit (CCB) - acontributory benefits social program aimed at informal P/EOL caregivers - operates as a public health response insustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects ofcaregiver burden that are addressed within the population health promotion (PHP) model.Methods: As part of a national evaluation of Canada’s Compassionate Care Benefit, 57 telephone interviews wereconducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths andweaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software andemerging themes were identified by the research team, with such findings published elsewhere. The purpose ofthe present analysis was identified after comparing the findings to the literature specific to caregiver burden andpublic health, after which data was analyzed using the PHP model as a guiding framework.Results: Informal caregivers spoke to several of the determinants of health outlined in the PHP model that areimplicated in their burden experience: gender, income and social status, working conditions, health and socialservices, social support network, and personal health practises and coping strategies. They recognized the need forimproving the CCB to better address these determinants.Conclusions: This study, from the perspective of family caregivers, demonstrates that the CCB is not living up toits full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfillthe potential it holds for serving as one public health response to caregiver burden that forms part of a healthypublic policy that addresses the determinants of this burden.

Document type: 
Article

Tracking the Evolution of Hospice Palliative Care in Canada: A Comparative Case Study Analysis of Seven Provinces

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2010
Abstract: 

Background: An aging population, rise in chronic illnesses, increase in life expectancy and shift towards care beingprovided at the community level are trends that are collectively creating an urgency to advance hospice palliative care(HPC) planning and provision in Canada. The purpose of this study was to analyze the evolution of HPC in sevenprovinces in Canada so as to inform such planning and provision elsewhere. We have endeavoured to undertake thisresearch out of awareness that good future planning for health and social care, such as HPC, typically requires us to firstlook backwards before moving forward.Methods: To identify key policy and practice events in HPC in Canada, as well as describe facilitators of and barriers toprogress, a qualitative comparative case study design was used. Specifically, the evolution and development of HCP in7 strategically selected provinces is compared. After choosing the case study provinces, the grey literature wassearched to create a preliminary timeline for each that described the evolution of HPC beginning in 1970. Keyinformants (n = 42) were then interviewed to verify the content of each provincial timeline and to discuss barriers andfacilitators to the development of HPC. Upon completion of the primary data collection, a face-to-face meeting of theresearch team was then held so as to conduct a comparative study analysis that focused on provincial commonalitiesand differences.Results: Findings point to the fact that HPC continues to remain at the margins of the health care system. Thedevelopment of HPC has encountered structural inheritances that have both sped up progress as well as slowed itdown. These structural inheritances are: (1) foundational health policies (e.g., the Canada Health Act); (2) servicestructures and planning (e.g., the dominance of urban-focused initiatives); and (3) health system decisions (e.g.,regionalization). As a response to these inheritances, circumventions of the established system of care were taken,often out of necessity. Three kinds of circumventions were identified from the data: (1) interventions to shift the system(e.g., the role of advocacy); (2) service innovations (e.g., educational initiatives); and (3) new alternative structures (e.g.,the establishment of independent hospice organizations). Overall, the evolution of HPC across the case studyprovinces has been markedly slow, but steady and continuous.Conclusions: HPC in Canada remains at the margins of the health care system. Its integration into the primary healthcare system may ensure dedicated and ongoing funding, enhanced access, quality and service responsiveness.Though demographics are expected to influence HPC demand in Canada, our study confirms that concerned citizens,advocacy organizations and local champions will continue to be the agents of change that make the necessary andlasting impacts on HPC in Canada.

Document type: 
Article

Fly-By Medical Care: Conceptualizing the Global and Local Social Responsibilities of Medical Tourists and Physician Voluntourists

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2011
Abstract: 

Background: Medical tourism is a global health practice where patients travel abroad to receive health care.Voluntourism is a practice where physicians travel abroad to deliver health care. Both of these practices often entailtravel from high income to low and middle income countries and both have been associated with possiblenegative impacts. In this paper, we explore the social responsibilities of medical tourists and voluntourists toidentify commonalities and distinctions that can be used to develop a wider understanding of social responsibilityin global health care practices.

 

Discussion: Social responsibility is a responsibility to promote the welfare of the communities to which onebelongs or with which one interacts. Physicians stress their social responsibility to care for the welfare of theirpatients and their domestic communities. When physicians choose to travel to another county to provide medicalcare, this social responsibility is expanded to this new community. Patients too have a social responsibility to usetheir community’s health resources efficiently and to promote the health of their community. When these patientschoose to go abroad to receive medical care, this social responsibility applies to the new community as well. Whilevoluntourists and medical tourists both see the scope of their social responsibilities expand by engaging in theseglobal practices, the social responsibilities of physician voluntourists are much better defined than those of medicaltourists. Guidelines for engaging in ethical voluntourism and training for voluntourists still need betterdevelopment, but medical tourism as a practice should follow the lead of voluntourism by developing clearernorms for ethical medical tourism.

 

Summary: Much can be learned by examining the social responsibilities of medical tourists and voluntouristswhen they engage in global health practices. While each group needs better guidance for engaging in responsibleforms of these practices, patients are at a disadvantage in understanding the effects of medical tourism andorganizing responses to these impacts. Members of the medical professions and the medical tourism industry musttake responsibility for providing better guidance for medical tourists.

Document type: 
Article

A Web-Based Graphical User Interface for Evidence-Based Decision Making for Health Care Allocations in Rural Areas

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2008
Abstract: 

Background: The creation of successful health policy and location of resources increasingly relieson evidence-based decision-making. The development of intuitive, accessible tools to analyse,display and disseminate spatial data potentially provides the basis for sound policy and resourceallocation decisions. As health services are rationalized, the development of tools such graphicaluser interfaces (GUIs) is especially valuable at they assist decision makers in allocating resourcessuch that the maximum number of people are served. GIS can used to develop GUIs that enablespatial decision making.Results: We have created a Web-based GUI (wGUI) to assist health policy makers andadministrators in the Canadian province of British Columbia make well-informed decisions aboutthe location and allocation of time-sensitive service capacities in rural regions of the province. Thistool integrates datasets for existing hospitals and services, regional populations and road networksto allow users to ascertain the percentage of population in any given service catchment who areserved by a specific health service, or baskets of linked services. The wGUI allows policy makersto map trauma and obstetric services against rural populations within pre-specified travel distances,illustrating service capacity by region.Conclusion: The wGUI can be used by health policy makers and administrators with little or noformal GIS training to visualize multiple health resource allocation scenarios. The GUI is poised tobecome a critical decision-making tool especially as evidence is increasingly required fordistribution of health services.

Document type: 
Article

Defining Rational Hospital Catchments for Non-Urban Areas Based on Travel-Time

Peer reviewed: 
Yes, item is peer reviewed.
Date created: 
2006
Abstract: 

Background: Cost containment typically involves rationalizing healthcare service delivery throughcentralization of services to achieve economies of scale. Hospitals are frequently the chosen site ofcost containment and rationalization especially in rural areas. Socio-demographic and geographiccharacteristics make hospital service allocation more difficult in rural and remote regions. Thisresearch presents a methodology to model rational catchments or service areas around ruralhospitals – based on travel time.Results: This research employs a vector-based GIS network analysis to model catchments thatbetter represent access to hospital-based healthcare services in British Columbia's rural andremote areas. The tool permits modelling of alternate scenarios in which access to different basketsof services (e.g. rural maternity care or ICU) are assessed. In addition, estimates of the percentageof population that is served – or not served -within specified travel times are calculated.Conclusion: The modelling tool described is useful for defining true geographical catchmentsaround rural hospitals as well as modelling the percentage of the population served within certaintime guidelines (e.g. one hour) for specific health services. It is potentially valuable to policy makersand health services allocation specialists.

Document type: 
Article