Publication
Research Article
Though they fluctuate, hope and positivity comfort people with multiple sclerosis as their circumstances change and they progress toward end-of-life discussions and planning.
Background: Medical assistance in dying (MAID) is a legally available option in Canada. Bill C-14 determined initial eligibility requirements (eg, a patient having a reasonably foreseeable natural death), program safeguards, and a definition of who can assess and administer MAID. Subsequently, Bill C-7 removed the requirement that death must be reasonably foreseeable. Saskatchewan’s multiple sclerosis (MS) prevalence rate is among the highest in the world, and some individuals with MS have already accessed MAID. This project explored the perceptions of end of life (EOL) in Saskatchewan, Canada.
Methods: Using an interpretive description methodology, 22 interviews were conducted with individuals with MS and 5 with key informants for data triangulation. Demographic and symptom severity contextual data, field notes, and reflective interview content were also collected and triangulated. Inductive reflexive thematic analysis was completed.
Results: Participants had a mean age of 41.8 years with a wide variability in symptom severity. Their main concerns were retaining self-agency, combating stigma, and leaning into hope and positivity. While valuing decision-making autonomy, they recognized that MS can complicate EOL decision-making. Participants looked to family and health care providers for cues about cognitive changes and found that hope and positivity provided comfort as the disease progressed.
Conclusions: Understanding participants’ perspectives will help clinicians support individuals as they navigate their disease trajectory during EOL care planning, will help policy makers enhance the health care system to ensure EOL care accessibility for the MS community, and support individual choice for people with MS.
From the Faculty of Nursing (JB, LH) and the Centre on Aging and Health (MNA), University of Regina, Regina, Saskatchewan, Canada; Department of Physical Medicine and Rehabilitation (KBK), Department of Community Health and Epidemiology (LT), Department of Anatomy, Physiology, and Pharmacology (MCL), and Department of Neurology (MCL, IP), College of Medicine, University of Saskatchewan, Saskatoon, Saskatchewan, Canada. Correspondence: Janine Brown, PhD, University of Regina, Faculty of Nursing, 111-116 Research Dr, Saskatoon, Saskatchewan, S7N 3R3, Canada; email: janine.brown@uregina.ca.
Note: MCL is the Saskatchewan MS Clinical Research Chair. IP is the Saskatchewan MS Clinic Clinical Director.
Canada has one of the highest multiple sclerosis (MS) prevalence rates,1 with Saskatchewan having a crude prevalence rate of approximately 313.6 per 100,000.2 MS is a chronic and progressive neurological condition leading to physical and cognitive decline, and comprehensive care planning is crucial to support disease management and plan for advancing care needs.3 The rising average age of individuals living with MS increases the risk of age-related comorbidities.4,5 Older adults with MS face lower employment, reduced physical activity, and increased disability compared with other older Canadians.6 For people with MS, end-of-life (EOL) care includes managing complex symptoms such as pain, chronic fatigue, mood disorders, mobility and visual impairments, dysarthria, dysphagia, and related complications.7 They often fear future disability, are concerned about caregiver burden, and worry about the challenges of navigating their home as mobility declines.8 People with MS value partnerships in health care decision-making and prefer timely communication and recognition of all care options, including the limitations of medical science.9 This complexity highlights the need for interdisciplinary care team management, involving collaboration with pain specialists, social workers, neurologists, pharmacists, nurses, physiatrists, and other medical specialists.10
Since its legalization, the use of medical assistance in dying (MAID) as an EOL option has increased yearly.11 MAID involves a physician or nurse practitioner prescribing or administering medications that intentionally cause death for individuals who meet legislated eligibility criteria and provide voluntary, informed consent.11 In 2023, 15,343 individuals accessed MAID, a 15.8% increase from 2022.11 In Saskatchewan, 257 people completed MAID, representing 2.3% of total deaths in the province.12 Access to specialty care in rural areas of Saskatchewan can be limited, underscoring the importance of understanding the experiences and needs of individuals with MS in this context.13 The eligibility criteria for MAID are determined by the legislation: Individuals must be eligible for Canadian health services, be 18 years or older, have decision-making capacity, voluntarily request MAID and give informed consent, and be diagnosed with a grievous and irremediable medical condition.14 Bill C-7 in 2021 removed the original criterion that death must be reasonably foreseeable.14 This removal resulted in separate tracks: track 1 (eligibility criteria and safeguards for individuals whose death is reasonably foreseeable) and track 2 (eligibility criteria and safeguards for individuals whose death is not reasonably foreseeable). Bill C-7 also initially included a sunset clause that lifted the exclusion of eligibility for those individuals whose sole medical condition is a mental illness, but the clause was delayed until March 2027.
The intersection of MS and MAID involves complex disease trajectories and the challenge of medical, spiritual, and ethical decision-making for people with MS, their family members, and their care providers. Data from 2 quantitative studies reflect a high hypothetical interest in assisted dying for people with MS.15,16 With the changes resulting from Bill C-7, individuals with disease, illness, or disability without temporal proximity to death14 may request a MAID assessment as they consider their EOL goals.17 Understanding the perspectives of people with MS on EOL choices in the context of MAID is essential to ensure patient-centered care and respect for the value and autonomy of patient-driven decision-making.16 However, to the best of the authors’ knowledge, there is no qualitative work exploring their perspectives on EOL in the context of legally available assisted dying. The purpose of this project is to address this gap. This project was funded by the Saskatchewan Health Research Foundation and included multiple distinct objectives. The objective of this study is to determine the perspectives of individuals living with MS regarding EOL in a context where MAID is a legally available option to support patient-driven decision-making in practice.
Methodology
This qualitative exploratory study was rooted in interpretive description (ID), an analytical method that contributes to a detailed description and interpretation of the phenomenon and to an understanding of disease-related consequences in a clinical context through an iterative inductive process.18 It aligns with the constructivist approach to understanding the context from the perspective of those who live it through collaborative knowledge generation between researcher and participant.19 ID can address complex questions uniquely while producing pragmatic outcomes,20 and contributes research that goes beyond mere description to providing insights into practice-based issues that are directly relevant to patient-centered decision-making.19,21 We used the ID approach to address the practice-based issue of patient-centered decision-making for people with MS as they consider EOL care.
ID was also chosen because it helps describe and interpret research data from the research team’s different perspectives. Our research team includes a patient-partner who was diagnosed with MS in 2005 (L.H.) and their spouse, who live in rural Saskatchewan. They were involved in formulating and reviewing the grant application, recruitment material, and interview guide (Appendix A, available in a PDF at the end of the online article). They also participated in data analysis and knowledge mobilization activities. The remaining research team consists of a registered nurse who works in an EOL care research program (J.B.), a student in a master’s of aging science research program (M.N.A.), a physiatrist (K.B.K.), a physician who is a MAID assessor and provider (L.T.), and 2 MS neurologists (M.C.L. and I.P.).
Ethical Considerations
Approval for this study was granted by the University of Regina Research Ethics Board (REB#029). As a safeguard, our research assistant (M.N.A.) was trained in LivingWorks safeTALK, a standardized, half-day training program that helps participants recognize the signs of distress and thoughts of suicide and connects individuals to intervention resources for further support. If she had been concerned about any participant’s well-being due to the expression of acute suicidality, the interview would have been stopped, and the data would not have been used. She would have then communicated directly with the Saskatchewan HealthLine (available 24 hours a day, provincewide) to connect the participant to care or bring care to the participant. All participants in the study received written information on accessing mental health support after the interview, and M.N.A. followed up with them within 1 week of the initial interview.
Study Setting and Recruitment
The study was conducted in Saskatchewan, a Canadian province where approximately 40% of the population resides in rural areas.22 To meet our objectives and understand real-life experience, we selected people with MS who were Saskatchewan residents, 18 years and older, and diagnosed with MS by a neurologist according to the McDonald criteria at least a year before potential research participation.23 Exclusion criteria were people with MS younger than 18 years, with decision-making proxies, and with communication challenges that could not be remedied via supportive technology or through a communication support person.
Purposive sampling was conducted in collaboration with the office of the Saskatchewan Multiple Sclerosis Clinical Research Chair, which facilitated access to the MS clinical research database of individuals who agreed to be contacted about future research projects. Within the database, we input the following search parameters:
Once a list of potential participants with the above parameters was determined, initial invitation letters were emailed that included the project goals and objectives, a brief introduction to how the interview could be conducted, and how the project results would be shared. Approximately 200 individuals were contacted. In addition, we posted information in MS clinic areas and raised project awareness through support from the MS Society and social media platforms. The complete project information form was emailed to individuals who expressed interest in additional information or in participating.
Perspectives of key informants (KI) included MS health care providers (HCPs), and those working in health administration and/or policy development. Their interview data were used to triangulate the results from the people with MS. KIs were identified by the entire research team in partnership with the Saskatchewan Health Authority and via direct referrals.
Data Production
After reviewing the project information and consent document, invitees who were willing to participate were contacted by the team to set a mutually agreeable interview date, time, and modality. As thematic content data are similar conceptually for both online and in-person,24,25 we provided the participants with the choice of face-to-face, telephone, or Zoom interviews. This choice was offered to support the development of conversation on sensitive topics in an open and comfortable manner.26 It also was inclusive of people with varying levels of mobility and from all areas of the province.
The interview guide was not piloted with participants; however, the patient partners were integral to the development and refinement of the guide. At the beginning of each interview, the interviewer reviewed the consent form with the participant, documented informed consent on the recording, and provided a link to a Qualtrics survey that collected demographics and personal context. One participant did not complete the demographic and contextual survey, but fully participated in the interview, so their data were included in the qualitative analyses. Demographics are detailed in Table 1.
Table 1. Demographics of Participants With Multiple Sclerosis
At the interview, we collected Multiple Sclerosis Impact Scale-29 (MSIS-29) and Patient-Determined Disease Steps (PDDS) scores. The MSIS-29 is a validated measure of the impact of MS symptoms on well-being. Twenty questions relate to the physical and 9 to the psychological impact, each rated on a 5-point scale. The raw physical and psychological subscores range from 20 to 100 and
9 to 45, respectively. Higher scores indicate greater symptom severity, while lower scores indicate no symptom impact. Raw scores were converted to percentages for interpretation. The MSIS-29 has demonstrated strong internal consistency and convergent validity in assessing MS impact.27 The PDDS is a self-reported assessment of disability levels for individuals with MS. It measures mobility impairment on a scale from 0 (normal) to 8 (bedridden), providing an effective tool to track disease progression.28 The PDDS has demonstrated construct validity in the assessment of mild to moderate disability among individuals with MS.28
Each semistructured interview lasted approximately 60 minutes and was audio-recorded and transcribed. There were set questions but also space for conversation, clarification, and exploration. This approach aligns with our methodology and is centered on an effort to understand participants’ perspectives and foster collaborative knowledge creation.29 Data collection continued until thematic saturation was reached with no new themes emerging from subsequent interviews. Field notes and reflective content (completed by M.N.A. after each interview) were also collected as part of the ID approach to support data triangulation. Interviewees were offered a C$50 honorarium. NVivo 12 was used to support the qualitative data processing and interpretation process.
Data Processing and Interpretation
The demographic and contextual data were summarized using frequencies and percentages. Recordings were transcribed while redacting potentially identifying information, and included the participants’ filler words while redacting any filler words used by the interviewer. M.N.A. then reviewed the transcriptions for quality and to redact any remaining possible identifying information left by the transcriptionist.30 Following Clarke and Braun’s 6-step reflexive thematic analysis,31-33 we then inductively coded to elucidate our first project objective, following an iterative process that allowed us to understand and interpret the data fully: M.N.A. and J.B. read the transcripts repeatedly for familiarity and then coded them with the support of NVivo 12 to produce initial themes. These themes were then reviewed by other research team members (K.B.K., L.T., M.L., I.P.) and triangulated with the HCP data, field notes, and reflective notes. The themes, with narrative definitions and supporting quotations, were collated, and the structure of the results was formulated. The findings were reviewed collaboratively with the research team and the patient partner (L.H.), and themes were finalized through consensus-building. We followed the Consolidated Criteria for Reporting Qualitative Studies checklist to report this study.34
Demographic and Contextual Data
Twenty-seven interviews were conducted, 22 with people with MS and 5 with KIs. Of the participants with MS, most were female (66.67%) and aged 18 to 44 years (57.14%). The majority were married or in a domestic partnership (71.43%). Most were working full-time (40%) or on disability (40%), reflecting the impact of MS on work ability. Most participants had a formal degree, while 23.81% had a high school education or less. In terms of disease duration, many had been diagnosed for 4 to 9 years (38.1%) or 10 to 14 years (33.33%), highlighting a sample with moderate to long-term MS experience.
People with MS had impairment levels ranging from no restrictions on daily activities (33.33%) to requiring a wheelchair for mobility (9.52%) on the PDDS rating scale (Table 2). The mean scores for the MSIS-29 physical (48.95 ± 21.08) and psychological subscales (21.67 ± 9.71) indicated moderate to high symptom impact. The relatively large SDs suggest substantial variability in symptom impact across participants. Most participants lived independently with others (47.62%) or lived with others and received help from them (38.10%). Only 1 participant reported using home care or interdisciplinary supports. Spirituality was of moderate to low importance for most participants. While many were comfortable discussing EOL care with family (42.86%), fewer expressed the same level of comfort with HCPs (33.33%). Full demographic and contextual data for the KIs are in Table 3.
Table 3. Key Informant Demographics (n = 5)
Themes
When considering the end of their lives, when MAID is a legally available option, participants were concerned with retaining self-agency, combating stigma, and leaning into hope and positivity. Example quotations illustrating the themes have been incorporated into Table 4.
Concerned With Retaining Self-Agency
Interviewees strongly valued autonomy and decision-making control. While acknowledging the importance of information and options from the care team, they believed EOL decisions would be theirs and expected everyone to respect them. They also acknowledged the possibility of future decision-making difficulty due to their illness and were concerned about their ability to make key decisions and enact their self-agency at the end of their life. They highlighted that family, friends, and their care team act as consultants as they navigate changing/fluctuating cognition, disease progression, and EOL options.
Combating Stigma
Participants discussed the impact of juggling stigmatizing elements, such as living with a chronic illness and considering MAID. They also highlighted the strength required to exercise self-agency to pursue MAID, for which they often faced societal biases and stigma. They navigated external judgment while asserting their autonomy, emphasizing the emotional and psychological resilience needed to make EOL decisions. Some participants also shared their belief that people compared MAID to suicide, while they believed it was a dignified way to relieve intolerable pain. Some also reflected that the consequences of an incomplete suicide can be catastrophic, further decreasing quality of life. Others reflected on how they spoke with others (faith leaders, family, and care partners) to make peace with EOL decisions.
Leaning Into Hope and Positivity
Even in the face of chronic illness and EOL discussions, participants discussed the importance of hope and positivity while being realistic about disease trajectory. They recognized that hope can change and look different as their illness progresses. As they faced EOL discussions, they hoped for autonomy in decision-making, for comfort, for choice, and for family harmony. They felt it was important to remain positive despite the changing circumstances of disease progression.
To the authors’ knowledge, this is the first qualitative study of people with MS concerning EOL in a context where MAID is legally available. The interviewees stressed self-agency in personal decision-making. Agency refers to being “in the driving seat when it comes to our actions.”35 HCPs also recognize that patient autonomy in decision-making may improve quality of life as care options are explored,36 and family members play a crucial role by providing emotional support and respecting the individual’s decision to explore all EOL care options as well as their final choice.37
Under current Canadian federal law, individuals cannot provide advance consent or direction for MAID. Though advance care directives empower individuals, there has been controversy regarding advance requests for MAID, particularly for individuals with neurodegenerative conditions such as dementia.38 Brown et al discuss potential challenges for HCPs regarding advance directives, including confirming the individual’s wishes and determining proxy decision-makers.36 EOL options have evolved and may continue to evolve, so robust patient, family, and HCP support systems and transparent guidelines will ensure individuals have the correct information while respecting individual self-agency. These same robust support systems and transparent guidelines should also support the family through the individual’s decisions and support HCPs as they work with patients and families.
Our study participants were well aware of how MS presents unique decision-making challenges related to EOL care planning in the context of MAID. They discussed how they involved family members, friends, legal advisers, and the care team as consultants, relying on them to indicate signs of fluctuating cognition as decision-making for people with MS may be complicated by cognitive impairment, especially changes in processing speed, memory, and visuospatial learning.39 With cognitive impairment, EOL care and decision-making discussions become more complicated.39 These consultative roles can be delicate and challenging as they provide information on cognitive disease progression and emotional support; however, there is a risk of conflict due to differences in perception, disease progression acceptance, culture, and values.37 Early discussions support individual decision-making and the opportunity to explore goals of care and EOL options, while delays risk the loss of individual capacity for decision-making due to disease progression.40
Navigating changing circumstances during EOL with hope and positivity was crucial for participants in this project. Despite changing circumstances, hope helped them to be realistic about disease progression and treatments, and positivity influenced their daily outlook. According to Beuthin et al, positivity may foster an environment that respects autonomy in decision-making without emotional or ethical pressure.41 Hope and positivity can shape EOL care decisions, fostering resilience and guiding choices that align with patients’ values.42
Strengths, Limitations, and Future Research
One of this study’s strengths is using ID, which allowed us to explore the dimensions of EOL in the context of MAID. We had significant sample variation as evidenced by the participants’ demographic and contextual variables, but a potential for response bias remains, as we may have included only participants who felt comfortable discussing the subject of EOL. The study was done in 1 province of Canada and did not collect data from diverse communities, such as immigrants, or include representation from minority groups or Indigenous communities, whose perspectives may differ significantly. Participants could make hypothetical assumptions about their future symptom severity and disability level and project how that might influence their EOL care perspectives. As such, this study has limitations for understanding possible relationships between current symptom severity and present EOL care perspectives. As a person experiences higher levels of symptom severity or disability, their perspective on living with MS and EOL care may change. A longitudinal study design that includes a larger cohort of older adults is recommended to better understand the complexity of possible changes in the relationships between symptom severity and disability within EOL care perspectives. Future studies could include the perspectives of family members and HCPs as well. Finally, knowing and investigating the perspectives of policy makers on EOL care in Canada is essential, regardless of the future direction of MAID legislation, if advance consent/directives for MAID become legalized federally.
MAID is an EOL care option that some people with MS wish to explore and may choose. It is clear from this study that individuals deeply and thoughtfully consider EOL decisions. In the context of MAID, individuals living with MS are aware of and consider how they will navigate decision-making challenges related to disease progression, are resolute in their desire for self-agency, navigate timing within various decision-making considerations, and lean into hope and positivity through all stages of their disease. Open, nonjudgmental relational approaches between individuals living with MS, their families, and their care providers are required and support individuals living with MS as they navigate decision-making considerations, potential cognitive decline, and personal autonomy. Equally, hope and positivity must be fostered and supported at all stages of the MS journey, including its end.
Acknowledgments: The authors thank the patient-partners for their guidance and acknowledge the interviewees who gave so generously of themselves and their time in support of this project.
Prior Presentation: These results were presented at the Canadian Association of MAiD Assessors and Providers Research Forum, May 2025, Vancouver, Canada; and at the Association for the Study of Death in Society conference, August 2025, Netherlands.
Financial Disclosures: The authors declare no relevant conflicts of interest.
Funding/Support: We also acknowledge the operational assistance of the Saskatchewan Health Authority. The Saskatchewan Health Authority did not have any involvement with the interpretation of results or the preparation of the manuscript. This work was financially supported by the Saskatchewan Health Research Foundation Establishment Grant.
Public Health Agency of Canada. Multiple sclerosis in Canada. 2024. Accessed July 9, 2026. https://www.canada.ca/content/dam/phac-aspc/documents/services/publications/diseases-conditions/multiple-sclerosis-infographic/multiple-sclerosis-infographic.pdf.
Al-Sakran LH. The epidemiology and pharmacoepidemiology of multiple sclerosis in Saskatchewan. Doctoral thesis. University of Saskatchewan; 2020. Accessed July 9, 2026. https://harvest.usask.ca/server/api/core/bitstreams/90cb4858-aa45-4400
-98d9-568b2e588c48/content
Sjöberg M, Edberg AK, Rasmussen BH, Beck I. Documentation of older people’s end-of-life care in the context of specialised palliative care: a retrospective review of patient records. BMC Palliat Care. 2021;20(1):91. doi:10.1186/s12904-021-00771-w
Hauer L, Perneczky J, Sellner J. A global view of comorbidity in multiple sclerosis: a systematic review with a focus on regional differences, methodology, and clinical implications. J Neurol. 2021;268(11):4066-4077. doi:10.1007/s00415-020-10107-y
Koch-Henriksen N, Magyari M. Apparent changes in the epidemiology and severity of multiple sclerosis. Nat Rev Neurol. 2021;17(11):676-688. doi:10.1038/s41582-021-00556-y
Ostolaza A, Corroza J, Ayuso T. Multiple sclerosis and aging: comorbidity and treatment challenges. Mult Scler Relat Disord. 2021;50:102815. doi:10.1016
/j.msard.2021.102815
Mercadante S. Palliative care aspects in multiple sclerosis. J Pain Symptom Manage. 2024;67(5):e425-e437. doi:10.1016/j.jpainsymman.2024.01.006
Pourhaji F, Peyman N, Taraghdar MM, Jamali J, Tehrani H. Explaining the burden of psychosocial factors on the worsening symptoms of MS: a qualitative study of patients’ experiences. BMC Neurol. 2023;23(1):98. doi:10.1186/s12883-023-03148-z
Lakin L, Davis BE, Binns CC, Currie KM, Rensel MR. Comprehensive approach to management of multiple sclerosis: addressing invisible symptoms-a narrative review. Neurol Ther. 2021;10(1):75-98. doi:10.1007/s40120-021-00239-2
Murteira D, Rego F. Integrating palliative care in patients with advanced multiple sclerosis: a scoping review. Ann Palliat Med. 2024;13(2):386-396. doi:10.21037/apm-23-455
Health Canada. Fifth annual report on medical assistance in dying in Canada, 2023. Government of Canada. Accessed July 9, 2026. https://www.canada.ca/en/health-canada/services/publications/health-system-services/annual-report-medical-assistance-dying-2023.html
Health Canada. Fourth annual report on medical assistance in dying in Canada 2022. Government of Canada. Accessed July 9, 2026. https://www.canada.ca/en/health-canada/services/publications/health-system-services/annual-report-medical-assistance-dying-2022.html
Karunanayake CP, Rennie DC, Hagel L, et al. Access to specialist care in rural Saskatchewan: The Saskatchewan Rural Health Study. Healthcare (Basel). 2015;3(1):84-99. doi:10.3390/healthcare3010084
Parliament of Canada. An act to amend the criminal code (medical assistance in dying). Accessed July 9, 2026. https://www.parl.ca/legisinfo/en/bill/43-2/c-7
Berkman CS, Cavallo PF, Chesnut WC, Holland NJ. Attitudes toward physician-assisted suicide among persons with multiple sclerosis. J Palliat Med. 1999;2(1):51-63. doi:10.1089/jpm.1999.2.51
Marrie RA, Salter A, Tyry T, Cutter GR, Cofield S, Fox RJ. High hypothetical interest in physician-assisted death in multiple sclerosis. Neurology. 2017;88(16):1528-1534. doi:10.1212/wnl.0000000000003831
Pesut B, Wright DK, Thorne S, et al. What’s suffering got to do with it? a qualitative study of suffering in the context of Medical Assistance in Dying (MAID). BMC Palliat Care. 2021;20(1):174. doi:10.1186/s12904-021-00869-1
Teodoro IPP, Rebouças V de CF, Thorne SE, Souza NKM de, Brito LSA de, Alencar AMPG. Interpretive description: a viable methodological approach for nursing research. Escola Anna Nery. 2018;22(3). doi:10.1590/2177-9465-ean-2017-0287
Thompson Burdine J, Thorne S, Sandhu G. Interpretive description: a flexible qualitative methodology for medical education research. Med Educ. 2021;55(3):336-343. doi:10.1111/medu.14380
Ramanadhan S, Revette AC, Lee RM, Aveling EL. Pragmatic approaches to analyzing qualitative data for implementation science: an introduction. Implement Sci Commun. 2021;2(1):70. doi:10.1186/s43058-021-00174-1
Hibbert P, Siedlok F, Beech N. The role of interpretation in learning practices in the context of collaboration. Acad Manag Learn Educ. 2016;15(1):26-44. doi:10.5465/amle.2014.0004
Statistics Canada. Population growth in Canada’s rural areas, 2016 to 2021. February 9, 2022. Accessed February 12, 2026. https://www12.statcan.gc.ca/census-recensement/2021/as-sa/98-200-x/2021002/98-200-x2021002-eng.cfm
Thompson AJ, Reingold SC, Cohen JA. Applying the 2017 McDonald diagnostic criteria for multiple sclerosis – authors’ reply. Lancet Neurol. 2018;17(6):499-500. doi:10.1016/s1474-4422(18)30168-6
Abrams KM, Wang Z, Song YJ, Galindo-Gonzalez S. Data richness trade-offs between face-to-face, online audiovisual, and online text-only focus groups. Soc Sci Comput Rev. 2014;33(1):80-96. doi:10.1177/0894439313519733
Namey E, Guest G, O’Regan A, Godwin CL, Taylor J, Martinez A. How does mode of qualitative data collection affect data and cost? findings from a quasi-experimental study. Field Methods. 2019;32(1):58-74. doi:10.1177/1525822x19886839
Namey E, Guest G, O’Regan A, Godwin CL, Taylor J, Martinez A. How does qualitative data collection modality affect disclosure of sensitive information and participant experience? Findings from a quasi-experimental study. Qual Quant. 2021;56(4):2341-2360. doi:10.1007/s11135-021-01217-4
Hobart J. The Multiple Sclerosis Impact Scale (MSIS-29): initial development, subsequent revision, lessons learned.In: Jenkinson C, Peters M, Bromberg MB, eds. Quality of Life Measurement in Neurodegenerative and Related Conditions. Cambridge University Press; 2011:24-40. doi:10.1017/cbo9780511975363.004
Marrie RA, McFadyen C, Yaeger L, Salter A. A systematic review of the validity and reliability of the Patient-Determined Disease Steps Scale. Int J MS Care. 2023;25(1):20-25. doi:10.7224/1537-2073.2021-102
Al-Balushi K. The use of online semi-structured interviews in interpretive research. Int J Sci Res (IJSR). 2018;7(4):726-732. doi:10.21275/ART20181393
McMullin C. Transcription and qualitative methods: implications for third sector research. Voluntas. 2023;34(1):140-153. doi:10.1007/s11266-021-00400-3
Clarke V, Braun V. Thematic analysis. J Posit Psychol. 2017;12(3):297-298. doi:10.1080/17439760.2016.1262613
Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Health. 2019;11(4):589-597. doi:10.1080/2159676X.2019.1628806
Braun V, Clarke V, Hayfield N, Davey L, Jenkinson E. Doing reflexive thematic analysis. In: Bager-Charleson S, McBeath A, eds. Supporting Research in Counselling and Psychotherapy. Palgrave Macmillan, Cham; 2023:19-38. doi:10.1007/978-3-031-13942-0_2
Booth A, Hannes K, Harden A, Noyes J, Harris J, Tong A. COREQ (Consolidated Criteria for Reporting Qualitative Studies). In: Moher D, Altman DG, Schulz KF, Simera I, Wager E, eds. Guidelines for Reporting Health Research: A User’s Manual. John Wiley & Sons. 2014:214-226. doi:10.1002/9781118715598.ch21
Moore JW. What is the sense of agency and why does it matter? Front Psychol. 2016;7:1272. doi:10.3389/fpsyg.2016.01272
Brown J, Goodridge D, Harrison A, Kemp J, Thorpe L, Weiler R. Medical assistance in dying: patients’, families’, and health care providers’ perspectives on access and care delivery. J Palliat Med. 2020;23(11):1468-1477. doi:10.1089/jpm.2019.0509
Hales BM, Bean S, Isenberg-Grzeda E, Ford B, Selby D. Improving the Medical Assistance in Dying (MAID) process: a qualitative study of family caregiver perspectives. Palliat Support Care. 2019;17(5):590-595. doi:10.1017/S147895151900004X
Nakanishi A, Cuthbertson L, Chase J. Advance requests for medical assistance in dying in dementia: a survey study of dementia care specialists. Can Geriatr J. 2021;24(2):82-95. doi:10.5770/cgj.24.496
Marafioti G, Cardile D, Culicetto L, Quartarone A, Lo Buono V. The impact of social cognition deficits on quality of life in multiple sclerosis: a scoping review. Brain Sci. 2024;14(7):691. doi:10.3390/brainsci14070691
Variath C. Loss of capacity to consent and access to medical assistance in dying: healthcare providers’ experiences and perspectives. June 2023. Accessed February 12, 2026. https://utoronto.scholaris.ca/items/339bb12b-9a69-45af-8d21-f609063171c9
Beuthin R, Bruce A, Scaia M. Medical assistance in dying (MAiD): Canadian nurses’ experiences. Nurs Forum. 2018;53(4):511-520. doi:10.1111/nuf.12280
Ghosh O, Subin M. The vital role of emotions in health decision-making. In: Jayasankara Reddy K, ed. Behavioral Economics and Neuroeconomics of Health and Healthcare. IGI Global. 2025;299-332. doi:10.4018/979-8-3693-6055-2.ch013
