“It's a fight to get anything you need” — Accessing care in the community from the perspectives of people with multimorbidity

Abstract Background There is a growing interest in redesigning health‐care systems to better manage the increasing numbers of people with multimorbidity. Knowing how patients experience health‐care delivery and what they need from the health‐care system are critical pieces of evidence that can be used to guide health system reforms. Objective The purpose of this study was to understand the challenges patients with multimorbidity face in accessing care in the community, and the implications for patients and their families. Methods A secondary analysis of qualitative data was conducted on semi‐structured interviews with 116 patients who were receiving care in an urban rehabilitation facility in 2011. Exploratory interpretive analysis was used to identify themes about access to care. Results Challenges occurred at two levels: at the health system level and at the individual (patient) level. Issues at the health system level fell into two broad categories: availability of services (failing to qualify, coping with wait times, struggling with scarcity and negotiating the location of care) and service delivery (unreliable care, unmet needs, incongruent care and inflexible care). Challenges at the patient level fell into the themes of logistics of accessing care and financial strain. Patients interacted and responded to these challenges by: managing the system, making personal sacrifices, substituting with informal care, and resigning to system constraints. Conclusion Identifying the barriers patients encounter and the lengths they go to in order to access care highlights areas where policy initiatives can focus to develop appropriate and supportive services that are more person and family‐centred.

chronic conditions simultaneously). 2 As our population ages rapidly, and life expectancy and survival rates improve, the effects of multimorbidity are likely to drive health-care utilization needs and associated costs. [3][4][5][6] Multimorbidity has major implications for patients, their families and society. Therefore, redesigning models of care towards systems that have a chronic disease focus is necessary to help combat the challenges associated with managing multimorbidity.
The needs and health problems of patients with multimorbidity tend to carry a high treatment burden due to increased use of health services, 7 complicated treatment and medication regimes, 8

and interactions
with care providers across an array of settings. 9 Patients may experience frustration with care providers, as well as, lack confidence in the overall health system. 10 At times, patients may fail to utilize services all together, even when available. However, there is limited understanding of why this occurs in the existing literature. More is to be learned about the various factors that influence the way in which people with multimorbidity access (or fail to access) the health-care system when needed.
The concept of access is discussed widely in the health service performance and utilization literature 11,12 and is considered an important indicator of care quality. 13,14 Scholars have conceptualized "access" in a variety of ways. In the 1970s and 1980s, the early period of health services utilization research, researchers described access as the "fit" between patients and services. 15 Penchansky and Thomas 15 theorized that patient satisfaction was determined by whether services met patient expectations, and the level of satisfaction was an indicator of "fit" or degree of accessibility to services. Andersen 12 distinguished the degree of service utilization as "realized access" rather than a measure of "potential access". Donabedian's 16 evaluation framework for health quality suggests the characteristics of health-care resources as instrumental in determining access or service use by potential patients. A recent scoping review on the concept of access by Levesque et al. 17 proposes a "patientcentred" view of access, defined as "the opportunity to reach and obtain appropriate health care services in situations of perceived need for care" (p. 4). Levesque et al. 17 framework considers the process of access as the interface of supply-side factors of health care (approachability, acceptability, availability and accommodation, affordability, appropriateness) and demand-side characteristics of populations (ability to perceive, ability to seek, ability to reach, ability to pay, ability to engage).
"Access" to health care and its associated issues (eg, equity, health outcomes, institutional structures) is a continuous area of interest for researchers and health-care decision-makers. Indeed, understanding the shortcomings of health systems in meeting patients' needs and more broadly the patient experience has become an important focus of health services administration and research. Health-care providers and policy makers are increasingly concerned with the patient experience as this concept is seen as an indicator of quality in health-care systems. 18,19 The emergent scholarship on patient experience, in the 1980s and 1990s, tended to assume proxy measurements, such as rates of patient satisfaction, 20,21 captured the necessary information regarding access to care. This approach is still routinely used today.
Standardized surveys that measure patient satisfaction with settings of care, 22 treatment modalities 23 and interactions with care providers 24 are ubiquitous administrative tools in quality improvement initiatives. While it may be useful to have a general sense of these factors, we argue these metrics do not give a full picture of the patient experience because they are largely defined by the "supply-side" (the care provider-side) perspective, while the "demand-side" (patient-side) conceptualization of what is meaningful about access is largely absent.
This article presents the view that patients have to "work" or actively engage and negotiate with health policies and services in order to manage multimorbidity. While we acknowledge that, in general, all patients may also engage in this "work", we suggest that how patients with multimorbidity experience health services requires closer examination because they are an "experienced" subpopulation of patients due to their multiple encounters with the health system and their long-term use of health services. As intense users with multiple needs, the challenges these patients face are likely to bring to the forefront salient issues relevant to improving the patient experience.
Patients with multimorbidity and their families often have to navigate a web of programmes in the community, many of which have their own entry criteria, waiting lists and assessment tools. Patients may have little choice but to negotiate these complexities all while managing health conditions that affect them and their caregivers mentally, emotionally and physically. 25 This inquiry focuses on access in community services (home care, community services, primary care) which arguably are some of the most crucial settings in the chronic disease management journey. The purpose of our study was to both illuminate the types of challenges, as well as, gain insight into how patients deal with these challenges.

| METHODS
This article describes a secondary analysis of 116 patient interviews drawn from a mixed methods cross-sectional study conducted at a 404-bed urban rehabilitation and complex continuing care facility in Toronto, Canada in 2011. The intent of the primary study was to understand the needs and experiences of patients with complex chronic disease, and to use this knowledge to inform quality improvement and policy making within the facility and at similar facilities. The patients were interviewed by experienced qualitative researchers who met with patients one-on-one, and asked a combination of openand closed-ended questions informed by a complex chronic disease framework comprised of five health dimensions (medical/physical health, mental health, demographics, social capital, health and social experiences), the result of a scoping literature review on multimorbidity and expert consultation conducted by the same research team. 26 The patients in this study had an average of five health conditions and several illness symptoms including problems with daily activities, pain management and mental health issues. The qualitative results of the primary study revealed three broad themes that represent the important components of care delivery: components of the care plan, care capacity and quality and the patient-provider relationship. 27 The senior author (KK) of this article was the lead investigator for the primary study. The lead author (JH) led an earlier study 28 based on a secondary analysis of data from the primary study but did not | 1313 participate in the original study. The third author (JI) was not involved in the primary study. The data were reviewed by the lead author for overall quality, appropriateness for the secondary research question and presence of thick descriptions. 29 The data analysed were drawn from responses to the open-ended question: "Please describe any challenges you have had with accessing health services in the past" and any references in other parts of the interview where the patient described challenges in access to health services. Asking about access issues in "the past" was appropriate given that the patients interviewed were currently in hospital. Although interviewing patients during a vulnerable time may elicit particular perspectives on health services, we acknowledge this context and suggest that understanding how patients view health-care access during a time when they are engaged in the health system (while in hospital) captures patient reflections during an "embedded" state in their health-care journey.
NVivo software version 10 was used to generate a node report that included all patient comments related to challenges in accessing care in the community from the entire pool of participants. We determined the themes inductively through a systematic process of dividing the data into meaning units, organizing the units into domains, constant comparison of meaning units to the final generation of themes that reflected the relational nature of the phenomena. 30,31 Themes were determined using exploratory interpretive analysis, a qualitative analysis approach that explores meanings and explanations of phenomena. 32 The data were analysed by a three-member research team. The lead author (JH) is a nurse who has worked in the home and community care sector for a number of years and has conducted previous qualitative research on patients with multimorbidity. The senior author of this article (KK) is an experienced qualitative researcher whose main programme of research is patient and caregiver experience in the health system. The third author (JI), is also a trained qualitative researcher and focuses her research on palliative care and ethics.
We were attentive and conscious throughout the analysis process of how our personal views and experiences may have influenced our interpretations of the data. We acknowledge that our clinical experiences, research projects and previous contacts with patients with multimorbidity guides us in the construction of meaning in the transcripts. The lead author and third author independently coded the transcripts, and then met with the senior author on multiple occasions to discuss the study's findings. The process of independent coding by two researchers, in addition to the prolonged engagement garnered by a core researcher from the original study is intended to promote credibility and fittingness of the findings. 33 The themes went through several iterations where the team members had in-depth discussions to ensure that particular themes were not over/under emphasized and that the themes were representative of all findings. A consensus was reached between the three researchers to determine the final themes presented in this article.

| RESULTS
We determined the following broad categories and associated themes to accessing health-care services in the community (see figure 1).
Challenges occurred at two levels: at the health system level and at the individual (patient) level. Issues at the health system level fell into two broad categories: availability of services (failing to qualify, coping with wait times, struggling with scarcity and negotiating the location of care) and service delivery (unreliable care, unmet needs, incongruent care and inflexible care). Challenges at the patient level were categorized as logistics of accessing care and financial strain. Patients interacted and responded to these challenges by: managing the system, making personal sacrifices, substituting with informal care and resigning to system constraints. to deal with. These patients characterized "access" as a process of attainment because although the types of services they required were available, due to programme rules, the services were not available to them. The results of this effort or work were captured in the themes:

| Availability of services
failing to qualify, coping with wait times, struggling with scarcity and negotiating the location of care.
Failing to qualify Some patients described how they "failed" to meet the minimum threshold for service enrolment. A 51-year-old patient, recovering in hospital from knee surgery described her experience with accessing post-discharge services: Being "just nicely over the dividing line" (CMB048), yet not quite meeting the threshold of eligibility, was a source of disappointment for patients. Furthermore, the work or the inability to prove themselves "worthy" of care was a common sentiment amongst these patients.

Coping with wait times
Some patients commented on long waits for health services. This patient described her reaction to the news that she had to wait months before diagnostic tests: In summary, the broad category of "availability of services" described here depicts how health policies affect the daily activities of managing health conditions for patients with multimorbidity and brings attention to the forms of engagement enacted by patients: "failing to qualify," "coping with wait times," "struggling with scarcity," and "negotiating the location of care".

| Service delivery
The category of "service delivery" represents the challenges that some patients had with their formal care providers. The themes of "unreliable care," "unmet needs," "incongruent care," and "inflexible care," characterize the types of problems that patients encountered.

| Unreliable care
Patients were frustrated with service providers who were late for or missed appointments: Patients relied on their care providers to follow through with home visits because daily routines, such as a spouse handing-off care to a formal care provider, were contingent on timely care provision. patients' expectations and care provision was a source of stress for patients and the sentiment that this relationship was like "fighting the system" was prevalent in this theme. Some patients also framed these problems as unresolvable or there were no alternatives to their current care provision.

| Inflexible care
Some patients discussed the bureaucratic nature of service delivery.
For example, one patient questioned the process in which her care was delivered: But why do I have to pay for a nurse that comes for blood pressure and a nurse that comes the same day to do my blood? One nurse should do both.

(CMB 001)
Some patients described how frustrated they were with certain home care practices. For example, after patients received their prescribed allotment of physiotherapy treatments, patients' family members were expected to take over treatments, a practice which patients felt was unreasonable as they believed their family members did not have the capacity to take over these tasks.
Challenges in service delivery were experienced by patients as care that was "unreliable," "unable to meet needs," "incongruent with expectations," and "inflexible". In short, some patients believed they received suboptimal care from the health system.

| Patient level challenges
Patient level challenges, or issues that pertained to individual circumstances rather than at a system level, included: "the logistics of accessing care" and "experiencing financial strain".

| Logistics of accessing care
Arranging for and travelling to services was problematic for some pa-

| Financial strain
Patients talked about feeling financially stressed because they needed to pay out of pocket for services or for incidental costs (eg, paying for parking at appointments) in order to access services. A patient described the consequences of out-of-pocket payment:

| Responding to the barriers to care
Some of the patients who were disappointed with the system and/or felt necessary care was not readily available, took matters in their own hands and responded by: "managing the system," "making personal sacrifices," "paying out-of-pocket for care," "substituting with informal care," or "resigning to system constraints". Similarly, other patients had to "fight", "persuade" and "persevere"

| Managing the system
to gain access to home care services, specialists and rehabilitation programmes. This theme is named "managing the system" because patients and their families felt they had to perform work-arounds and make extraordinary efforts by negotiating the rules and regulations of the health system to access care.

| Making personal sacrifices
Some patients, who could not receive the services they required, had to travel long distances, or move closer to their formal care providers.

| Paying out-of-pocket for care
Some patients purchased services, some of which were not typically Other types of supports patients paid out of pocket for included home care nursing, PSW care and speciality transportation services.

| Substituting with informal care
Patients' family members and friends were important sources of informal care when the formal system could not meet their needs. For example, a patient described how her son participated in her care: So my son had to come every morning before he was going to work. He came to give me a needle for 6 months before I went to the hospital… (CMB001)

| Resigning to system constraints
Some patients appeared to resign to system constraints by character- In summary, "managing the system," "paying out-of-pocket for care," "making personal sacrifices," "substituting with informal care," and "resigning to system constraints" represent the ways in which some patients responded to barriers to accessing care. These actions illustrate the agency required to navigate health services and suggest patients may form adversarial relationships with the health system. The process of "responding to barriers to care" was also one which was fraught with frustration with the system and drove patients to "fight" for care.

| DISCUSSION
This study's findings suggest that there are gaps and barriers in health services provision for people with multimorbidity and as a result, they experience considerable challenges trying to navigate the health system to access the services they need.  35 An "individualized care plan", tailored to fit the patient's needs and goals, is developed by the case manager, the care team, and the patients and caregivers, and the case manager is responsible for the coordination and the on-going management of services. 37 In light of the individualized contexts of how each patient experiences accessing care, we argue that any improvement strategies must first recognize that for some people with multimorbidity navigating the health system is like "fitting a square peg into a round hole". Normative assumptions about who may need community services, such as the elderly or people with severe disabilities may mean younger people or those with only temporary or less complex impairments are excluded.
Community-based agencies are largely organized around delivering care to target populations, such as seniors, people with acquired brain injuries, and people with developmental disabilities. While parsing out resources by demographic group or health condition is likely to remain the norm in health services, we propose that this "siloed" approach to care needs to be reexamined because people with multimorbidity may not be able to access services as they do not fit into the narrowly defined thresholds of existing programmes.
This study also suggests that some patients are actively engaged with health services delivery and when faced with barriers, they may advocate, negotiate, and essentially "work the system" to access care.
For example, some of the patients in our study who were denied access to services did not accept the status quo; instead, they persevered or coped by "managing the system". Patients described an adversarial relationship with care providers and the health system.
In fact, we found that people had to "fight" to gain access to necessary services like primary care, home care and physiotherapy services.
Patients had to go beyond their roles as recipients of health-care services and become advocates for what some described as "entitlements". On the other hand, we also found the counter-theme to managing the system-resigning to system constraints, or in other words "giving up the fight", which may limit some patients' access in comparison to those who actively seek workarounds. Both themes suggest patients who are ill, may not only have to manage their ailments but also manage the system. In consideration of Penchansky and Thomas' 15 conceptualization of access as the "fit" between patients and services, our findings indicate patients who do not "fit" are either left without services or those who are able to access services have to alter their personal circumstances (eg, incurring financial strain) to 'fit' the system.
Patient-health-care services interaction is the core of Levesque et al. 17 framework for access to care and presents the process of obtaining care (perceiving, seeking, reaching, paying and engaging) as "abilities". We agree that their conceptualization of access is analytically useful, as findings from our study reveal types of "work" which requires "abilities" to access care. Indeed, some of the themes in our study map onto Levesque et al. 17 conceptual framework. For example, the theme of "financial stress" from this study, meets their definition of the "ability to pay". Our study expands on Leveque and colleagues 17 conceptualization of "ability to engage", characterized as the ability to participate and be involved in decision-making, because findings from our study suggests that patients may need to employ more covert ways of engagement, such as "working the system" to access care.
In addition to patients' abilities, it is important to consider the context which necessitates the deployment of such abilities. Especially salient to the dynamics of patient-health services interaction are the health policies and health system arrangements that create the conditions in which patients feel like they have to fight, struggle and negotiate to gain access to care.

| LIMITATIONS
One of the methodological challenges inherent to a secondary qualitative analysis is that researchers need to address the extent of the difference between the primary study's focus and the secondary analysis' research question. 28 The primary study was a large-scale mixed methods study, 27,38 of which the issue of challenges to accessing care in the community comprised just one question in the interview guide.
The interview guide for the primary study was fairly structured and broad. We attempted to capture as much as we could within the data set related to our research question. Although there were rich responses to the types of challenges patients experienced, the feelings and reactions of patients were not fully captured by the interviews.
However, we were able to elicit some insight into patient responses as illustrated in the "responses to barriers to care" theme. Also, it is important to note that the primary study's interview guide's wording of the question: "have you experienced any challenges in accessing care in the past?" may have led interview participants to recount only negative experiences, rather than eliciting more balanced responses.

| CONCLUSION
Patients with multimorbidity have to contend with a host of system and individual level barriers when endeavouring to access services in the community. The barriers to qualify for and actually receive services require patients to go beyond the role of health-care recipients.
Responding to systemic barriers and limitations in administration and