Access to medical and supportive care for rural and remote cancer survivors in northern British Columbia.

BACKGROUND: Rural cancer survivors (RCS) potentially have unique medical and supportive care experiences when they return to their communities posttreatment because of the availability and accessibility of health services. However, there is a limited understanding of cancer survivorship in rural communities. PURPOSE: The purpose of this study is to describe RCS experiences accessing medical and supportive care postcancer treatment. METHODS: Interviews and focus groups were conducted with 52 RCS residing in northern British Columbia, Canada. The data were analyzed using qualitative content analysis methods. RESULTS: General Population RCS and First Nations RCS experienced challenges accessing timely medical care close to home, resulting in unmet medical needs. Emotional support services were rarely available, and, if they did exist, were difficult to access or not tailored to cancer survivors. Travel and distance were barriers to medical and psychological support and services, not only in terms of the cost of travel, but also the toll this took on family members. Many of the RCS lacked access to trusted and useful information. Financial assistance, for follow-up care and rehabilitation services, was rarely available, as was appropriate employment assistance. CONCLUSION: Medical and supportive care can be inaccessible, unavailable, and unaffordable for cancer survivors living in rural northern communities.

The Knowledge Exchange-Decision Support Model: application to cancer navigation programs.

PURPOSE: The Knowledge Exchange-Decision Support (KE-DS) Model provides a framework outlining essential components of knowledge generation and exchange. The purpose of this research was to illustrate how the Model makes explicit the different contextual aspects implicit in the planning and implementation of two cancer navigation programs in Canada. METHODS: The KE-DS Model guided the collection and analysis of interviews with program personnel and narrative data. A qualitative thematic analysis was conducted wherein we compared and contrasted the planning and implementation of these two navigation programs. RESULTS: The planning and implementation of these two programs was conceptualized differently and adapted to meet local contingencies. The KE-DS Model highlighted three factors that influenced program delivery. First, the structure of health services was shaped by the interaction of professionals and services operating in the region, and the existing health services influenced the program's approach to navigation. Second, while there were similarities in the professional roles and responsibilities of the navigators, these roles and responsibilities also reflected local context in their approaches to patient assessment, referral, education, coordination of services, and advocacy. Third, these two distinct approaches to navigation have responded to the needs of diverse populations being served by improving access to care. CONCLUSIONS: Evidence generated using the KE-DS Model could ensure a more robust and structured approach to the planning and implementation of future navigation programs. The Model prompts users to make explicit the different types of evidence utilized during program planning and implementation. The systematic collection of new information on program implementation using the KE-DS Model in future initiatives will contribute to an improved understanding of the science of knowledge exchange.

Trajectories of social isolation in adult survivors of childhood cancer.

PURPOSE: Long-term childhood cancer survivors may be at increased risk for poor social outcomes as a result of their cancer treatment, as well as physical and psychological health problems. Yet, important challenges, namely social isolation, are not well understood. Moreover, survivors' perspectives of social isolation as well as the ways in which this might evolve through young adulthood have yet to be investigated. The purpose of this research was to describe the trajectories of social isolation experienced by adult survivors of a childhood cancer. METHODS: Data from 30 in-depth interviews with survivors (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, constant comparative methods. RESULTS: Experiences of social isolation evolved over time as survivors grew through childhood, adolescence and young adulthood. Eleven survivors never experienced social isolation after their cancer treatment, nor to the present day. Social isolation among 19 survivors followed one of three trajectories; (1) diminishing social isolation: it got somewhat better, (2) persistent social isolation: it never got better or (3) delayed social isolation: it hit me later on. CONCLUSIONS: Knowledge of when social isolation begins and how it evolves over time for different survivors is an important consideration for the development of interventions that prevent or mitigate this challenge. IMPLICATIONS FOR CANCER SURVIVORS: Assessing and addressing social outcomes, including isolation, might promote comprehensive long-term follow-up care for childhood cancer survivors.

Evaluating a knowledge exchange intervention in cancer survivorship care: a workshop to foster implementation of Online Support Groups.

PURPOSE: The purpose of the research described here is to assess the overall effectiveness of the workshop format as a Knowledge Exchange (KE) strategy in (1) disseminating scientific evidence, clinical experience, and systems information related to professionally led Online Support Groups (OSG) for cancer survivors and (2) facilitating the implementation of this intervention by a select group of end users--decision makers and clinical leads in psychosocial supportive care. METHODS: The KE-Decision Support (KE-DS) Model, operationalizing the Health Technology Approach, guided the development of pre- and postworkshop questionnaires, and a follow-up questionnaire administered 5 months after the workshop. Questionnaire results were categorized according to participants' responses to these elements: methods of engagement, evidence (scientific, experiential, systems) and the delivery of this evidence, and external factors at the institutional level, such as administrative support, budgetary issues, etc., that influence decision-maker abilities and strategies. RESULTS: Traditional KE strategies such as peer-reviewed journal articles are optimal for disseminating scientific evidence, while face-to-face interactions, such as in a workshop, are best used to disseminate systems-level implementation information, such as fiscal implications, budgetary requirements, and policy relevance, which is not found in journal articles or conferences. An apparent shift in workplace culture signifies the availability of institutional support for high-level staff to engage in KE. CONCLUSIONS: As a KE strategy with identified end users, the workshop format is effective in facilitating the implementation of this intervention in participants' institutions.

A structured approach to knowledge exchange: understanding the implementation of a cancer survivor program.

PURPOSE: The purpose of this research was to describe the application of a model of knowledge exchange, the Knowledge Exchange-Decision Support (KE-DS) Model, to the Canadian pilot of Cancer Transitions, a psychosocial program for cancer survivors. METHOD: We compared and contrasted the program planning and implementation processes across three diverse sites offering Cancer Transitions. The KE-DS Model guided the collection and analysis of observations and written data according to specific model components. RESULTS: The use of the KE-DS Model highlighted four pertinent factors that influenced knowledge exchange during planning and implementation processes of this psychosocial program. First, the geographic diversity of where these programs were offered affected strategies for program promotion, recruitment and means of access. Second, the variation of the professional and organizational capacity of the three sites was critical to program planning and delivery. Third, cultural values and norms shaped each site's approach. Fourth, the KE-DS Model identified populations who were included and excluded from participation. CONCLUSIONS: The KE-DS Model was useful in elucidating the processes of knowledge exchange during the planning and implementing of an intervention for survivor care. This process information will inform future offerings of Cancer Transitions.