Is it worth it?: The experiences of persons with multiple sclerosis as they access health care to manage their condition

Abstract Background People with multiple sclerosis (MS) require complex care throughout life. Canadians with MS are high users of health‐care services, yet still report unmet health‐care needs and low satisfaction with services received. Objective This study aimed to investigate the health‐care access experiences of Ontarians with MS as they manage their condition. Design and Participants Interpretive description guided data collection and analysis. Forty‐eight people living across seven communities participated. Thirty‐eight participated in one of five focus groups; the remaining 10 participated in an individual semi‐structured interview. Results Participants described the experience of accessing care as a decisional process, guided by a form of cost‐benefit analysis. The process determined whether seeking conventional health‐care services ‘is worth it’. Most participants felt that the energy and resources required to access the health‐care system outweighed their expected outcomes, based on past experiences. Participants who did not see the benefit of care seeking turned to self‐treatment, use of complementary and alternative services, and engaged in patterns of health‐care avoidance until a crisis arose. Discussion and Conclusion Findings suggest that a renewed effort to promote patient‐centred care and a biopsychosocial approach may improve the health‐care access experiences of persons with MS and reduce service avoidance.

world 3 . MS has an unknown aetiology, an unpredictable course and symptomology, and no available cure. Together, these factors make MS difficult to manage, contributing to the need for complex care throughout life 4,5 .
Researchers report high use of health-care services among individuals with chronic illnesses [6][7][8] , and Canadians with MS rank among the highest 9,10 . Annually, Canadians with MS visit their family physician nearly twice as often 10 , are admitted to hospital 2.5 times more and consult mental health professionals 2.6 times more than ageand sex-matched peers 9 . Nevertheless, they report unmet health needs, poor health ratings and low satisfaction with health-care services [11][12][13] . International research has uncovered a link between these outcomes and poor access to healthcare within the MS population 14,15 , raising questions about the health-care access experiences of Canadians with MS. This international research used a biopsychosocial approach, which recognizes the combined impact of biological, psychological and social factors on an individual's health and wellbeing 16 . Therefore, using this approach may offer insights into the experiences of access to health care among persons with MS in Canada.
'Access to health care' is a complex multidimensional process that includes an individual's path to care seeking, their point of entry into the health-care system, and their use of services within that system 17 .
In health service research, investigation of access tends to focus on the point of entry and use of services, considering issues of utilization, supply and demand, availability, accessibility, affordability and acceptability [18][19][20] . Within the social sciences, investigations of access tend to focus on the social, cultural, psychological and behavioural factors that influence an individual's path to care seeking and point of entry [21][22][23][24] . We choose to use a combined perspective, considering access to healthcare as spanning from the path to care seeking through to actual use of services 25,26 . Using this perspective, and a biopsychosocial approach, we investigated the health-care access experiences of Canadians with MS as they manage their condition.

| ME THODS
We used interpretive description to inform all aspects of this study's design. This applied qualitative methodology aligns with a constructivist approach and focuses on knowledge generation to inform clinical practice 27 . Initial data collection involved five focus groups (FG). To explore emerging concepts, we added 10 semi-structured telephone interviews (TI) with participants from communities in northern Ontario. These interviews allowed in-depth exploration of access issues related to rural geography and self-management. Recruitment, data collection and analysis occurred between November 2017 and April 2018.

| Participants and recruitment
The Health Science Research Ethics Board of the researchers' university granted ethical approval for the study. We purposefully recruited focus group participants from five communities of different sizes. We called 21 persons with MS who had previously consented to be re-contacted by our research team. We also distributed study information through the MS Society's research portal, social media platforms, local chapters' email lists, support groups and educational events, and by distributing flyers in local communities.
Focus group participants were screened to ensure that they met the following criteria: (a) self-reported having a definite diagnosis of MS from a neurologist; (b) at least 18 years of age; (c) able to tolerate a 90-minute discussion; (d) able to communicate in English; (e) and able and willing to attend one focus group.
For the telephone interviews, we recruited persons with MS living in rural communities in Northern Ontario (≥3 hours from tertiary care) through the Ontario Division of the MS Society of Canada.
Potential participants were screened to the criteria above, with the following revisions: (3) able to tolerate a 60-minute discussion (5) by telephone.

| Data collection
Participants completed a self-reported questionnaire to capture demographic, clinical and information about health service use before the session. The first author facilitated all focus groups, after receiving training.
All focus groups had a co-facilitator who provided logistical support. The focus groups ranged from 5-12 participants and lasted between 90-110 minutes. The sessions were facilitated using a semi-structured interview guide. To ensure that the interview guide would elicit a full range of experiences about accessing healthcare services, it was informed by previous MS access research 5,28 and health-care access theory grounded in a biopsychosocial approach 25,26 . The guide was piloted with five individuals with MS to ensure clarity and relevance prior to use and was adjusted iteratively to reflect emerging concepts and themes (eg health-care provider communication; preconceptions of outcomes). For exemplar questions from the guide, see Table 1.
The first author conducted individual interviews by telephone, which lasted 51-116 minutes. The same semi-structured guide was used; however, additional follow-up questions were added to gain more in-depth information about certain concepts (eg rural living, self-management, delayed care seeking). Focus groups and telephone interviews were recorded and professionally transcribed verbatim. We verified the transcripts against the audio recordings to ensure accuracy and de-identified them using pseudonyms.

| Data analysis
Analysis began immediately after the first focus group. Concurrent collection and analysis allowed for comparisons of concepts and ideas between focus groups and interviews, using constant comparison analysis 29 , consistent with interpretive description methodology 27 .
The analysis process involved the first author reading and re-reading the transcripts to become familiar with the data. During this process, we continually questioned the data, searching for similarities and differences across ideas, perceptions, attitudes and experiences. Open coding was initiated with the assistance of the focus group co-facilitators and an additional arms-length individual.
All individuals coded independently and then met to discuss and explore interpretations. The first and senior author met on a weekly basis to discuss the ongoing coding process.
The initial open codes were examined for patterns and relationships across incidents and sessions, allowing coding to become more specified. These narrower codes were examined for similarities and differences, which allowed for clearer understanding of the categories and themes. However, consistent with interpretive description no theoretical framework was ascribed to the data 27 , rather the data were interpreted through a biopsychosocial lens. We re-contextualized and organized the findings to illuminate the essence of the health-care access experiences of participants. We deepened the overall analytic process by using the sorting and query functions of the data management programme, ATLAS.ti 30 .

| Establishing rigour
We invited all focus group participants to be a part of the membercheck process. Thirteen accepted the invitation and received a summary of the group discussion for input. They did not suggest any major changes. The first author also kept an analytic and reflexive journal throughout the study. All meetings, notes and coding steps were kept, maintaining a robust audit trail. To ensure the credibility of the findings, triangulation of data sources (interviews and focus groups) and researchers (multiple individuals on analysis team) was employed. The findings are presented with contextual information to inform the readership of the analytic logic.

| Participant demographics
Participants were recruited primarily through local MS chapter personnel (n = 23) and word of mouth (n = 11), followed by local MS events (n = 4), previous participant list (n = 6), social media (n = 4) and flyers (n = 2). Everyone who was interested met the eligibility criteria, although two could not attend the focus group. A final fortyeight participants shared their experiences on accessing health-care services in managing their MS. Participants were 49.6 years of age

| Overview of findings
Participants' experiences of accessing care to manage their condition revolved around the process of seeking care and the factors that impacted this process. Past experiences of engaging with the conventional health-care system, defined by participants as including hospitals, clinics and emergency departments employing doctors, nurses and/or specialists, were the most important factor. Participants were using a form of cost-benefit analysis to decide whether seeking conventional health-care services was worth it. The question 'Is it worth it?' became the overarching analytic theme. Other themes reflected the process participants engaged in to answer this question. This section provides an overview of the themes and their relationships (see  (Salinda, FG2) Appraisal of the health issue also involved an evaluation of its potential threat. Appraisals led to one of two main outcomes: (a) health-care seeking as a requirement or (b) health-care seeking as optional.
In cases where individuals felt they were in a state of 'crisis,' their decisional process ended, as health-care seeking became a requirement. However, individuals who did not feel threatened or in a state of crisis (low to moderate threat) continued their decisional process: I usually don't seek out a lot of intervention, unless I feel really threatened in my situation.
(Terry, FG3) One participant described normalizing a health issue and waiting until it has progressed significantly before feeling the need to attempt accessing care: (Alexis, TI) The answer to the question 'Is it worth it?' was also described as ongoing, as participants engaged in reappraisal of their current state on a continual basis. If at any time a reappraisal leads to a high threat perception, individuals described care seeking as a requirement.

| Factors moderating care seeking
When health-care seeking was deemed optional, they continued the decisional process to determine if accessing care was worth it, by taking into account past experiences, outcomes of care seeking and other complicating factors.

Past experiences and outcomes
Participants described a range of previous experiences that informed their present and future decisions about accessing care.
The most common accounts converged on encounters with healthcare providers. Two main subthemes were associated with driving the access experience and weighed heavily on participants' decisional processes: patient-centred care and health-care provider knowledge.

| Patient-centred care
Participants' perceptions of the usefulness of a health-care encounter were strongly influenced by whether the health-care provider practised patient-centred care. More specifically, they described three main components as being key to their overall experience: active communication and shared decision making, a holistic approach, and a respectful and empathetic provider. Participants positively described experiences when aspects of a patient-centred approach When providers were not patient-centred, multiple negative outcomes ensued. Participants described feeling disregarded, invalidated and dismissed. Ryan described feeling judged: It looks like they're not even listening to me and they're saying, It's in your head. (FG4)

| Provider knowledge
Providers' MS-related knowledge also impacted their access experiences. Participants understood that it was not possible for generalists to be specialized in MS; however, they expected them to know the basics and provide symptom management or referrals.

| The decision
After appraising their current health state as low to moderately threatening and weighing this appraisal against the accumulating negative past experiences and outcomes, and additional complicating factors, many participants decided that accessing health-care was probably not worth it. Individuals described postponing healthcare access, and instead engaging in trial and error. In this transitory phase, participants attempted to self-manage or deal with the health issue on their own or with peer support. One participant pointed out that she considers herself the best source of care: The only, effective resource that I've ever had, consistently, is myself. Because I know how that person's going to respond and I know how to deal with her.
(Danielle, FG1) Many participants also sought complementary and alternative medicine, or simply waited to see if the issue worsened with time.
Catherine described how she proceeded: If it's something I can take care of myself, or something I had before and it's not that bad, I will take care of it myself. And then, if it doesn't work, then I'll seek care. Help, either my naturopath, or the ER if it's bad enough. (TI) Participants also described searching for new providers that practised in a patient-centred approach. Many discussed cycling through different family physicians and neurologists in order to find one practising this approach: Throughout the trial and error phase of this decision-making process, participants were continually reappraising their current health state. If their health state stabilized and the impact on their activity and participation was reduced, participants decided that accessing healthcare services was not worth it. If, however, participants appraised their health state as lasting or worsening, having a more pronounced impact on their daily functioning, or causing fears about their safety, then, at last, the answer to 'Is it worth it?' would be yes.

| D ISCUSS I ON
Experiences of access to health-care, described by Ontarians with MS, were centred on the processes of seeking health care. These Most participants felt that accessing the conventional health-care system was not worth it, until they were in a state of 'crisis' with no other options.

| Findings in context
Interestingly, these findings show that persons with MS describe the process of seeking help for an MS-related concern as central to their experience of access. This finding is consistent with newer conceptualizations of access to care 25,26 that integrate concepts from help-seeking literature 24,31,32 . Our findings highlight the importance of bridging conceptualizations of access in health services research, often guided by the five As (affordability, accessibility, accommodation, availability and appropriateness) 33  for health-care providers to focus more on function and structure, as opposed to the desired, participatory outcomes left participants feeling unheard, de-legitimized and un-helped. This led many to engage in 'doctor shopping' until they found a provider practising in a patient-centred approach that supported overall wellbeing. Many participants turned towards allied health or complementary healthcare providers 43 . Unfortunately, lack of funding for many of these services made them unrealistic as long-term options, consistent with previous findings 5,44

| What are the strengths and limitations?
A strength of this study is its focus on the perspectives and expe-

| What are the next steps and practical implications?
Patient-centred care is not a new concept within the Canadian health-care system. The Charter for Patient-centred Care was established in 2010, which is at the heart of health-care reform 37,49 .
Our findings highlight the need to continue implementing strategies that improve the adoption of patient-centred care, underlined by a biopsychosocial ideology 45,49 . This will allow the health-care system to respond more appropriately to the needs of persons living with These units are meant to function in a patient-centred approach 58 and posses the ability to incorporate affordable allied care, coordination and continuity of care, and MS knowledge, which encompass many factors that make seeking care worth it.

| CON CLUS ION
Multiple sclerosis is a complex, variable and unpredictable chronic neurological condition that requires lifelong management and care.
The findings from this study suggest that persons with MS feel as though the energy requirements needed to overcome barriers to accessing health-care services were not worth the outcomes of seeking the care. Patient-centred care and health-care provider knowledge were perceived as being pivotal yet oftentimes missing components of the current services available to them in Ontario.
Findings suggest that a renewed effort to promote patient-centred care with an underlying biopsychosocial approach to health-care systems may improve persons with MS' experiences of healthcare services, reduce their associated avoidance and improve their quality of life.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available from the corresponding author upon reasonable request.