Dataset Information

Exploring key stakeholders' attitudes and opinions on medical assistance in dying and palliative care in Canada: a qualitative study protocol.

ABSTRACT:

Introduction

Canadians have had legal access to medical assistance in dying (MAiD) since 2016. However, despite substantial overlap in populations who request MAiD and who require palliative care (PC) services, policies and recommended practices regarding the optimal relationship between MAiD and PC services are not well developed. Multiple models are possible, including autonomous delivery of these services and formal or informal coordination, collaboration or integration. However, it is not clear which of these approaches are most appropriate, feasible or acceptable in different Canadian health settings in the context of the COVID-19 pandemic and in the post-pandemic period. The aim of this qualitative study is to understand the attitudes and opinions of key stakeholders from the government, health system, patient groups and academia in Canada regarding the optimal relationship between MAiD and PC services.

Methods and analysis

A qualitative, purposeful sampling approach will elicit stakeholder feedback of 25-30 participants using semistructured interviews. Stakeholders with expertise and engagement in MAiD or PC who hold leadership positions in their respective organisations across Canada will be invited to provide their perspectives on the relationship between MAiD and PC; capacity-building needs; policy development opportunities; and the impact of the COVID-19 pandemic on the relationship between MAiD and PC services. Transcripts will be analysed using content analysis. A framework for integrated health services will be used to assess the impact of integrating services on multiple levels.

Ethics and dissemination

This study has received ethical approval from the University Health Network Research Ethics Board (No 19-5518; Toronto, Canada). All participants will be required to provide informed electronic consent before a qualitative interview is scheduled, and to provide verbal consent prior to the start of the qualitative interview. Findings from this study could inform healthcare policy, the delivery of MAiD and PC, and enhance the understanding of the multilevel factors relevant for the delivery of these services. Findings will be disseminated in conferences and peer-reviewed publications.

SUBMITTER: Shapiro GK

PROVIDER: S-EPMC8646969 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:ObjectivesThe aims of this study are: (1) to create a flowchart process model of how medical assistance in dying (MAID) occurs in Nova Scotia (NS), Canada and (2) to detail how NS healthcare professionals are involved in each stage of MAID. The research questions are: how is the MAID process carried out and which professionals are involved at which points? and which roles and activities do professionals carry out during MAID?DesignQualitative process model flowchart study with semistructured interviews.SettingPrimary and secondary care in NS, Canada.ParticipantsThirty-two interviewees self-selected to participate (12 physicians, 3 nurse practitioners (NP), 6 nurses, 6 pharmacists and 5 healthcare administrators and advocates). Participants were included if they conduct assessments, provide MAID, fill prescriptions, insert the intravenous lines, organise care and so on.ResultsThe flowchart process model details five stages of how MAID occurs in NS: (1) starting the MAID process, (2) MAID assessments, (3) MAID preparation (hospital in-patient, hospital outpatient, non-hospital), (4) day of MAID and (5) post-MAID (hospital in-patient and outpatient, non-hospital, after leaving setting). Nineteen points where the process could stop or be delayed were identified. MAID differs slightly by location and multiple professionals from different organisations are involved at different points. Some physicians and NP provide MAID for free as they cannot be reimbursed or find it too difficult to be reimbursed.ConclusionsOur study adds knowledge about the MAID activities and roles of NS professionals, which are not documented in the international literature. Clinicians and pharmacists spend significant additional time to participate, raising questions about MAID's sustainability and uncompensated costs. The process model flowchart identifies where MAID can stop or be delayed, signalling where resources, training and relationship-building may need to occur. Knowing where potential delays can occur can help clinicians, administrators and policymakers in other jurisdictions improve MAID.

Project description:BackgroundIn June 2016, Canada legalized medical assistance in dying (MAiD). From the outset, some healthcare institutions (including faith-based and non-faith-based hospitals, hospices, and residential aged care facilities) have refused to allow aspects of MAiD onsite, resulting in patient transfers for MAiD assessments and provision. There have been media reports highlighting the negative consequences of these "institutional objections", however, very little research has examined their nature and impact.MethodsThis study reports on findings from 48 semi-structured qualitative interviews conducted with MAiD assessors and providers, MAiD team members (working to coordinate care and lead MAiD programs in institutions and health authorities), and family caregivers on their experiences with institutional objection. Participants were recruited from the Canadian provinces of British Columbia, Ontario, and Nova Scotia. Data were analyzed using inductive thematic analysis.ResultsThemes identified were: (1) basis for institutional objection (with objections commonly rooted in religious values and a particular philosophy of palliative care); (2) scope of objection (demonstrating a wide range of practices objected to); (3) lack of transparency regarding institutional position; (4) impacts on patients; (5) impacts on health practitioners; and (6) catalysts for change. Participants reported that many institutions' objections had softened over time, lessening barriers to MAiD access and adverse impacts on patients and health practitioners. Participants attributed this positive change to a range of catalysts including advocacy by health practitioners and family members, policymaking by local health authorities, education, and relationship building. Nevertheless, some institutions, particularly faith-based ones, retained strong objections to MAiD, resulting in forced transfers and negative emotional and psychological impacts on patients, family members, and health practitioners.ConclusionsThis paper adds to the limited evidence base about the impacts of institutional objection and can inform practical and regulatory solutions in Canada and abroad. Reform is needed to minimize the negative impacts on patients, their caregivers, and health practitioners involved in MAiD practice.

Project description:BACKGROUND:Malaria control in Tanzania currently relies primarily on long-lasting insecticidal nets and indoor residual spraying, alongside effective case management and behaviour change communication. This study explored opinions of key stakeholders on the national progress towards malaria elimination, the potential of currently available vector control interventions in helping achieve elimination by 2030, and the need for alternative interventions that could be used to supplement malaria elimination efforts in Tanzania. METHODS:In this exploratory qualitative study, Focus group discussions were held with policy-makers, regulators, research scientists and community members. Malaria control interventions discussed were: (a) improved housing, (b) larval source management, (c) mass drug administration (MDA) with ivermectin to reduce vector densities, (d) release of modified mosquitoes, including genetically modified or irradiated mosquitoes, (e) targeted spraying of mosquito swarms, and (f) spatial repellents. RESULTS:Larval source management and spatial repellents were widely supported across all stakeholder groups, while insecticide-spraying of mosquito swarms was the least preferred. Support for MDA with ivermectin was high among policy makers, regulators and research scientists, but encountered opposition among community members, who instead expressed strong support for programmes to improve housing for poor people in high transmission areas. Policy makers, however, challenged the idea of government-supported housing improvement due to its perceived high costs. Techniques of mosquito modification, specifically those involving gene drives, were viewed positively by community members, policy makers and regulators, but encountered a high degree of scepticism among scientists. Overall, policy-makers, regulators and community members trusted scientists to provide appropriate advice for decision-making. CONCLUSION:Stakeholder opinions regarding alternative malaria interventions were divergent except for larval source management and spatial repellents, for which there was universal support. MDA with ivermectin, housing improvement and modified mosquitoes were also widely supported, though each faced concerns from at least one stakeholder group. While policy-makers, regulators and community members all noted their reliance on scientists to make informed decisions, their reasoning on the benefits and disadvantages of specific interventions included factors beyond technical efficiency. This study suggests the need to encourage and strengthen dialogue between research scientists, policy makers, regulators and communities regarding new interventions.

Project description:BackgroundPoor participant recruitment is the most frequent reason for premature discontinuation of randomized clinical trials (RCTs), particularly if they are investigator-initiated. The aims of this qualitative study were to investigate (1) the views of clinical trial stakeholders from three different countries regarding reasons for recruitment failure in RCTs and (2) how these compare and contrast with the causes identified in a previous systematic review of RCT publications.MethodsFrom August 2015 to November 2016, we conducted 49 semi-structured interviews with a purposive sample of clinical trial stakeholders. This included investigators based in Germany (n = 9), Switzerland (n = 6) and Canada (n = 1) with personal experience of a discontinued RCT and 33 other stakeholders (e.g., representatives of ethics committees, clinical trial units, pharmaceutical industry) in Switzerland. Individual semi-structured qualitative interviews were conducted and analyzed using thematic analysis.ResultsInterviewees identified a total of 29 different reasons for recruitment failure. Overoptimistic recruitment estimates, too narrow eligibility criteria, lack of engagement of recruiters/trial team, lack of competence/training/experience of recruiters, insufficient initial funding, and high burden for trial participants were mentioned most frequently. The interview findings largely confirm the previous systematic review on published reasons for recruitment failure. However, eight new reasons for recruitment failure were identified in the interviews, which led to the checklist of reasons for recruitment failure being revised and a new category describing research environment-related factors being added.ConclusionsThis study highlights the diversity of often interlinked reasons for recruitment failure in RCTs. Integrating the findings of this interview study with a previous systematic review of RCT publications led to a comprehensive, structured checklist of empirically-informed reasons for recruitment failure. The checklist may be useful to guide further research on interventions to improve participant recruitment in RCTs and helpful for trial investigators, research ethics committees, and funding agencies when assessing trial feasibility with respect to recruitment.

Project description:BackgroundEven as healthcare providers and systems were settling into the processes required for Medical Assistance in Dying (MAID) under Bill C-14, new legislation was introduced (Bill C-7) that extended assisted death to persons whose natural death is not reasonably foreseeable. The purpose of this paper is to describe the experiences of nurses and nurse practitioners with the implementation and ongoing development of this transition.MethodsThis qualitative longitudinal descriptive study gathered data through semi-structured telephone interviews with nurses from across Canada; cross sectional data from 2020 to 2021 is reported here. The study received ethical approval and all participants provided written consent.FindingsParticipants included nurses (n = 34) and nurse practitioners (n = 16) with significant experience with MAID. Participants described how MAID had transitioned from a new, secretive, and anxiety-producing procedure to one that was increasingly visible and normalized, although this normalization did not necessarily mitigate the emotional impact. MAID was becoming more accessible, and participants were learning to trust the process. However, the work was becoming increasingly complex, labour intensive, and often poorly remunerated. Although many participants described a degree of integration between MAID and palliative care services, there remained ongoing tensions around equitable access to both. Participants described an evolving gestalt of determining persons' eligibility for MAID that required a high degree of clinical judgement. Deeming someone ineligible was intensely stressful for all involved and so participants had learned to be resourceful in avoiding this possibility. The required 10-day waiting period was difficult emotionally, particularly if persons worried about losing capacity to give final consent. The implementation of C-7 was perceived to be particularly challenging due to the nature of the population that would seek MAID and the resultant complexity of trying to address the origins of their suffering within a resource-strapped system.ConclusionsSignificant social and system calibration must occur to accommodate assisted death as an end-of-life option. The transition to offering MAID for those whose natural death is not reasonably foreseeable will require intensive navigation of a sometimes siloed and inaccessible system. High quality MAID care should be both relational and dialogical and those who provide such care require expert communication skills and knowledge of the healthcare system.

Project description:Rationale & objectiveFor patients requiring in-center hemodialysis, suboptimal transportation arrangements are commonly cited as a source of ongoing stress and anxiety and have been associated with a reduced quality of life and increased mortality risk. Transportation-related problems are especially pronounced in Canada given its size, low population density, and long, often snowy winters. We aimed to identify and better understand transportation options for hemodialysis patients in Canada and to describe stakeholder experiences.Study designWe used a qualitative descriptive research design to explore stakeholder experiences and perspectives of transportation to and from dialysis facilities.Setting & participantsWe recruited participants from a large urban hemodialysis program in Western Canada and included 11 participants from a project group, 45 participants from an open forum, and a survey of 8 social workers. Data collection occurred at a series of project group meetings and an open forum (n=45). In addition, we asked 8 renal social workers based in major cities across Canada to comment on the provision of transport for patients in their area via email or telephone consult.Analytical approachWe used conventional content analysis to explore stakeholder experiences.ResultsTraveling to and from dialysis facilities remains a source of stress and anxiety for many patients and their families. Patients described several factors contributing to these feelings including: the challenges of physically getting to the treatment center, particularly in adverse weather conditions; being a burden on family and friends; difficulties accessing the treatment facility; issues with public transport; and financial worries related to high costs.LimitationsFindings may not be relevant in low- and middle-income countries and those with a warmer climate.ConclusionsWithout a concerted and collaborative approach to address the barriers identified here, it is likely that travel to and from in-center hemodialysis will continue to adversely affect patients' quality of life.

Project description:BackgroundDespite aspects of the SAFE strategy for reducing trachoma in Tanzania have been somewhat successful, the disease still persists in marginalised communities even with repeated trachoma control interventions. This study aims to understand the facilitators and barriers associated with implementing trachoma control programmes in these communities, from the perspective of non-governmental organisations (NGOs).MethodsParticipants were the representatives of NGOs who had knowledge and experience in the implementation of trachoma control programmes. Data was collected using in-depth, semi-structured interviews guided by a topic guide, which was updated after each interview using a constant comparative method. Interviews were audio-recorded and then transcribed verbatim. Thematic analysis was done inductively. Codes were generated from the transcripts and then clustered into themes.FindingsThe context within marginalised communities often acted as a perceived barrier to successful implementation of control programmes. This included poor environmental cleanliness, lack of trust, poor disease knowledge and traditional lifestyles. Community values could either be a facilitator or a barrier, depending on the scenario. The anatomical location of the disease and the poor understanding of the disease progression also served as barriers. Considerations affecting decision-making among NGO's include financial feasibility, community needs and whether the quality of the intervention could be improved. NGOs felt that the collaboration and the opportunity to learn from other organisations were beneficial aspects of having different actors. However, this also resulted in variability in the effectiveness of interventions between districts.ConclusionNGOs should focus on behaviour change and health education that is tailored to marginalised communities and seek innovative ways to implement trachoma intervention programmes whilst being minimally intrusive to the traditional way of life. Partners should also implement ways to ensure high quality programmes are being provided, by increasing staff accountability and compensating volunteers fairly.