What was lost, missing, sought and hoped for: Qualitatively exploring medical crowdfunding campaign narratives for Lyme disease.

Lyme disease remains a contested illness in Canada, thereby making the diagnostic and treatment journeys difficult for some people. One outcome of this is that increasing numbers of people are turning to medical crowdfunding to support access to alternative therapies, non-local health care providers and assist with managing the costs of everyday life. In this analysis, we qualitatively explore the narratives shared in Canadians' crowdfunding campaigns to support Lyme disease treatment or diagnosis to identify whether or not any common elements shared in these narratives exist, and if so, what they are. We identified 238 campaigns for inclusion from three prominent crowdfunding platforms. Thematic analysis of the campaign narratives shows four consistent themes shared in these campaigns: what is lost (e.g. bodily ability), what is missing (e.g. local care options), what is sought (e.g. funds to cover treatment abroad) and what is hoped for (e.g. return to wellbeing). These themes demonstrate the highly personal and emotional nature of medical crowdfunding, particularly in the context of a contested illness that may lead some to question the legitimacy of one's financial need. This analysis contributes valuable new insights to the nascent scholarship on medical crowdfunding, and particularly to our understanding of how people communicate about their health and bodily needs on this public platform. It also identifies important directions for future research, including the potential for crowdfunding narratives to be used for advocacy.

"I didn't have to prove to anybody that I was a good candidate": a case study framing international bariatric tourism by Canadians as circumvention tourism.

BACKGROUND: Medical tourism is a practice where patients travel internationally to purchase medical services. Medical tourists travel abroad for reasons including costly care, long wait times for care, and limited availability of desired procedures stemming from legal and/or regulatory restrictions. This paper examines bariatric (weight loss) surgery obtained abroad by Canadians through the lens of 'circumvention tourism' - typically applied to cases of circumvention of legal barriers but here applied to regulatory circumvention. Despite bariatric surgery being available domestically through public funding, many Canadians travel abroad to obtain these surgeries in order to circumvent barriers restricting access to this care. Little, however, is known about why these barriers push some patients to obtain these surgeries abroad and the effects of this circumvention. METHODS: Semi-structured phone interviews were conducted with 20 former Canadian bariatric tourists between February and May of 2016. Interview questions probed patients' motivations for seeking care abroad, as well as experiences with attempting to obtain care domestically and internationally. Interviews were digitally recorded, transcribed verbatim, and then thematically analyzed. RESULTS: Three key barriers to access were identified: (1) structural barriers resulting in limited locally available options; (2) strict body mass index cut-off points to qualify for publicly-funded surgery; and (3) the extended wait-time and level of commitment required of the mandatory pre-operative program in Canada. It was not uncommon for participants to experience a combination, if not all, of these barriers. CONCLUSIONS: Collectively, these barriers restricting domestic access to bariatric care in Canada may leave Canadian patients with a sense that their health care system is not adequately addressing their specific health care needs. In circumventing these barriers, patients may feel empowered in their health care opportunities; however, significant concerns are raised when patients bypass protections built into the health system. Given the practical limitations of a publicly funded health care system, these barriers to care are likely to persist. Health professionals and policy makers in Canada should consider these barriers in the future when examining the implications medical tourism for bariatric surgery holds for Canadians.

Family caregivers' ideal expectations of Canada's Compassionate Care Benefit.

We present the findings of 57 interviews conducted in 2007-2008 with Canadians who have cared for a dying family member to examine their ideal expectations of the Compassionate Care Benefit (CCB) - a social programme providing job security and income support for workers caring for a dying person. Our aims are to (1) appreciate how intended users and other family caregivers view the programme's very nature; (2) identify programme challenges and improvements that emerge from considering family caregivers' ideal expectations; and (3) contribute to a larger evaluative study designed to make policy-relevant recommendations for CCB improvement. Review of transcripts across three respondent groups reveals four categories of ideal expectations: (1) eligibility, (2) informational, (3) timing and (4) financial. Ideal expectations were typically derived from respondents' experiences of care-giving, their knowledge of the programme and, for some, of applying for and/or receiving the CCB. Findings reveal that there are gaps between respondents' ideal expectations and their experienced realities. Such gaps may lead to disappointment being experienced by those who believe they should be eligible for the programme but are not, or should be entitled to receive some form of support that is not presently available. This analysis plays an important role in identifying potential changes for the CCB that may better support family caregivers, in that the ideal expectations serve as a starting point for articulating desirable programme amendments. This analysis also has wider relevance. For jurisdictions looking to create new social programmes to support caregivers based upon labour policy strategies and legislation, this analysis identifies considerations that should be made at the outset of development. For jurisdictions that already have employment-based caregiver support programmes, this analysis demonstrates that programme challenges may not always be met through legislative changes alone but also through measures such as increasing awareness.

Tracking the evolution of hospice palliative care in Canada: a comparative case study analysis of seven provinces.

BACKGROUND: An aging population, rise in chronic illnesses, increase in life expectancy and shift towards care being provided 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 seven provinces in Canada so as to inform such planning and provision elsewhere. We have endeavoured to undertake this research out of awareness that good future planning for health and social care, such as HPC, typically requires us to first look backwards before moving forward. METHODS: To identify key policy and practice events in HPC in Canada, as well as describe facilitators of and barriers to progress, a qualitative comparative case study design was used. Specifically, the evolution and development of HCP in 7 strategically selected provinces is compared. After choosing the case study provinces, the grey literature was searched to create a preliminary timeline for each that described the evolution of HPC beginning in 1970. Key informants (n = 42) were then interviewed to verify the content of each provincial timeline and to discuss barriers and facilitators to the development of HPC. Upon completion of the primary data collection, a face-to-face meeting of the research team was then held so as to conduct a comparative study analysis that focused on provincial commonalities and differences. RESULTS: Findings point to the fact that HPC continues to remain at the margins of the health care system. The development of HPC has encountered structural inheritances that have both sped up progress as well as slowed it down. These structural inheritances are: (1) foundational health policies (e.g., the Canada Health Act); (2) service structures 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 study provinces 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 health care 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 and lasting impacts on HPC in Canada.