What is Important to Older People with Multimorbidity and Their Caregivers? Identifying Attributes of Person Centered Care from the User Perspective

Introduction: Health systems are striving to design and deliver care that is ‘person centred’—aligned with the needs and preferences of those receiving it; however, it is unclear what older people and their caregivers value in their care. This paper captures attributes of care that are important to older people and their caregivers. Methods: This qualitative descriptive study entailed 1–1 interviews with older adults with multimorbidity receiving community based primary health care in Canada and New Zealand and caregivers. Data were analyzed to identify core attributes of care, important to participants. Findings: Feeling heard, appreciated and comfortable; having someone to count on; easily accessing health and social care; knowing how to manage health and what to expect; feeling safe; and being independent were valued. Each attribute had several characteristics including: being treated like a friend; having contact information of a responsive provider; being accompanied to medical and social activities; being given clear treatment options including what to expect; having homes adapted to support limitations and having the opportunity to participate in meaningful hobbies. Conclusions: Attributes of good care extend beyond disease management. While our findings include activities that characterize these attributes, further research on implementation barriers and facilitators is required.

Given the mismatch between the goals of person centered care and the disease focused orientation of current health care systems, it is not surprising that care experiences, particularly among people with multimorbidity, are generally reported as poor [15][16][17][18][19][20][21][22].
To improve these care experiences we must endeavor to understand what matters most to people. A systematic review conducted in 2016 by Mangin et al. [23] noted few tools that capture priorities and preferences among people with multimorbidity. Furthermore, existing definitions, conceptual models, and measurement tools on patient experience and person centered care are not always informed by patient or caregiver input [24][25][26].
In this paper we sought to explore what characterizes a good care experience and what is occurring in the patient's and caregiver's environment to enable this experience. If person centered care is truly a central aim of modern health systems, then some action is required to elicit, directly from patients and caregivers, what is important to them. Understanding attributes of a good care experience requires closer examination and can be used to guide efforts to implement models of care that truly reflect the needs of people and their caregivers and enable more positive care experiences. This paper has two objectives: First, to capture what matters to older people with complex care needs and their caregivers (i.e., attributes of good care) and second, to outline the characteristics of these attributes (the core activities and actions that coincide with each attribute).

Methods
This is a qualitative descriptive study entailing one-to-one semi-structured interviews with 172 patients and caregivers from 9 community based primary health care (CBPHC) sites located in Ontario, Quebec and New Zealand (NZ). A description of the nine case-study sites [27] and the process used to select them are described elsewhere [28].
A convenience sampling technique was used to recruit patients and caregivers. Patients were eligible for inclusion in the study if they were 65 years of age or older and had two or more chronic conditions. For NZ Māori, patientparticipants were 50 years of age or older because, compared to the total NZ population, Māori experience chronic conditions earlier, more severely, and have a higher burden of multimorbidity. All participants were cognitively capable of participating in an interview. Non-English speaking participants were interviewed with the aid of an interpreter. Caregivers were eligible to participate if they were currently, or in the past, provided support for a patient that was enrolled in one of the nine case study sites. Administrative and front line staff from each of the CBPHC sites approached patients who met the inclusion criteria (in person or by phone) to assess interest and seek permission to have a researcher contact them. Among patients and caregivers who consented to participate, an interview was scheduled at a location of the participant's choice (typically their home or the main site of care/primary care clinic). Ethics approval was given by the University of Auckland Human Participants Ethics Committee, University of Toronto Research Ethics Board, Michael Garron Hospital Research Ethics Board and Bridgepoint-West Park Toronto Central CCAC-Toronto Grace Research Ethics Board. Interviews were audio-recorded and transcribed verbatim by a transcriptionist. Interviews were not returned to participants for comment. Table 1 outlines the characteristics of patients and caregivers across all study jurisdictions.

Analysis
The research question: "What is most important to patients and their caregivers in their care?" was applied to the dataset. Consistent with a directed content analysis approach [29], specific codes (i.e., common passages of text) which the team felt would help them understand the attributes of care that were important to patients and caregivers were selected for review. These codes included perceptions of unmet need; feelings related to health, symptoms and limitations; perceptions of care provided to them; caregiver experiences and needs; self-management support; and roles and relationships with a range of providers and services including primary care, homecare; hospital; emergency department, etc.) These codes were analyzed in-depth using an inductive approach which entailed reading all text line by line and organizing similar text into core categories. Four members of the research team (KK, AP, AG and SD) conducted the analysis individually and then came together periodically to discuss emergent categories -each of which represented an attribute of good care from the perspectives of patients and caregivers.
Part way through the analysis the coding framework was presented to the broader team for feedback (including those who had conducted the patient and caregiver interviews in other jurisdictions). It was agreed that the selected codes were appropriate and the emergent categories consistent with expectations of what was relevant to patients and caregivers.
The data were recoded using the categories as an organizing framework to ensure all relevant content was captured. Any other content that was thought to be relevant were also selected and categorized separately for further discussion. Modifications to the categories were made by three members of the team (KK, AP and AG) following several in-depth discussions (some of the categories were merged and renamed). A descriptive memo was written for each attribute detailing the key characteristics.

Findings
Six core attributes were identified. Each of these attributes were relevant to all study jurisdictions and represented within both patient and caregiver groups: feeling heard, appreciated and comfortable; having someone to count on; easily accessing health and social care; knowing how to manage health and what to expect; feeling safe; and being independent. A description of each attribute along with example quotes from a range of cases and jurisdictions is provided below. Table 2 (at the end of the findings section) provides a summary of each attribute and corresponding characteristics. During the analysis it was clear that each attribute was not mutually exclusive, but rather complementary and informative of other attributes. As a result, the attributes were organized into a schematic (see Figure 1 at the end of the Findings section).  Provide caregivers with additional supports to offer peace of mind so they are able to attend appointments or social outings and know the care recipient is safe • caregivers must be able to trust and easily access these resources -(e.g., access to consistent providers who understand the needs of the patient). Another caregiver appreciated help planning care across time and providers: "Yeah, they'll write things down. And they also ring up to remind me of my appointments, which I forget otherwise, they're beautiful. They're awesome." (NZ, Case 2, Caregiver 25) Patients and caregivers appreciated having someone that was both accessible and able to coordinate with other providers: "Yeah, absolutely. She's only a phone call away and she has the inside running of the know…She can make appointments with the doctor." (NZ, Case 2, Patient 29)

Easily Accessing Health and Social Care
Easily accessing health and social care was facilitated by the 'go-to' person as illustrated above. Importantly, it was not enough to just access services, the resources accessed had to bring value and meaning to the person. The value of service was enhanced by providers and organizations fulfilling more than one role (supporting health and social care needs simultaneously) such as a primary care clinic that had fresh food available or medical and financial supports available under the same roof.  Similarly, in the excerpt below a volunteer connected a patient and their caregiver to financial benefits they did not know about. Prior to that they were spending their limited resources unnecessarily.
"So I made the arrangements, get all the doctor's letters and everything, make an appointment, accompany them for the interview. So eventually they got their disability social benefit. So from then on, their drugs are free." (Canada, Case 1, Caregiver 9) On the other hand, some services had limiting characteristics that did not fully meet the patients and families' needs. In other words, the resource was provided but was not fully accessible to patients: "…the occupational therapy rang me on the Tuesday that was, I think, the bed arrived a week before, I think, and she said, ' oh, has the bed arrived?, and I said yes and explained that it was in the garage, and, you now. And she was really annoyed with the company who was supposed to pull it out. So I think there could be a bit more communication." (NZ, Case 1, Patient 7) Similarly, this patient talked about the limitations of a food delivery program: … "I didn't know how to prepare them [raw food]. If they had sent along paper saying this is a recipe for how to prepare the stuff, it would have been different, but they just send it out expecting: Look we have this great, big box of fruits and vegetables! And you're staring at them going, well I can eat these five but these 20 goes in the garbage because you don't know what it is." (Canada, Case 3, Patient 1)

Knowing How to Manage Health and What to Expect
Knowing how to manage health at the present time and into the future was contingent on having clear explanations from health care providers-who spoke in lay language, avoided "big flash words," and used communication aids like diagrams to illustrate key points. Clear explanations were often coupled with taking time with the patient and family to verify understanding, provide opportunities to collaborate and negotiate next steps.
"She's [health provider] a very relaxed type of person. She's not, you know, in your face or anything like that, she just sits back and, you know, explains things to me and talks about what problems I've got, you know. And why they're putting me on this or why they're putting me on that." (NZ, Case 1, Patient 7) In addition, knowing why certain treatment options were being recommended by the doctor, nurse practitioner or nurse was important and often linked to adherence:

"And the medication they've given me, they've explained to me what it is for. And because I under-
stand what it is for now, I take them. Whereas before, oh no, didn't know, so out the window it went." (NZ, Case 3, Patient 1) Managing illness (as is often the case for people with multiple chronic health problems) was unpredictable and required some level of trial and error or continuous adaptations with the care provider.
"After you have taken the medication for a day or two, he would phone to ask if you have any reactions or the outcomes, like how is the result. Through this I think he is very caring." (NZ, Case 1, Caregiver 38) For patients who had dementia, caregivers tried different approaches (such as purchasing gates with locks to prevent wandering, and installing alarms in the home) to keep their family members safe. A caregiver appreciated having a care provider come to her home to teach her how to manage her mother's unpredictable behaviors: "She [social worker] contacted the different departments about the dementia behavior, and asked them to come to me to interview and teach me how to handle his behavior." (Canada, Case 1, Caregiver 3) Having the 'tools' to manage health was critically important and included having a list of results to take from provider to provider (a traveling record) and having someone accompany the patient to a doctor's appointment (to either drive, take notes, interpret or advocate if needed).

Yeah. Because [care provider] prints it out for me, my blood pressure results and that, she'll print it out. And that's, like she said, that's just in case I might have to go and see [other care provider] sometime. And I can take the list with me, so it's in a folder. (NZ, Case 3, Caregiver 16)
Caregivers played a huge role in helping patients figure out how to manage illness; stay on top of things; liaise with the care team; decode language that was hard to understand; get explanations from care staff and organize follow-up appointments to manage health.
It was also important to 'future proof', or get things in order for the future. This included getting onto a longterm care wait list (particularly important for caregivers with capacity limitations) and end-of -life planning.
"So I'm thinking for the future I can put him on a wait list [for long-term care]. It gives me time to shop around, look for the best place…" (Canada, Case 2, Caregiver 13)

Feeling Safe
Safety was a major concern among caregivers. Caregivers had to carefully navigate the balance between restricting behaviors and actions of those they cared for with enabling or honoring the patients' preference to do activities independently.
This caregiver had to constantly monitor her mother to ensure she could do activities in a safe way: A caregiver described the dangerous events that prompted her to move her mother into a residential care facility. There were signs that her mother's dementia had reached a point where she needed 24/7 care and the caregiver was worried about her mother's safety.
"She left the stove on. You know and fat all on the stove and stuff like that. And when I asked her about it, she would, she was angry, she didn't want to talk to me. She wanted me to leave. She didn't wanted anything to do with me. Because she knew that she was not coping." (NZ, Case 3, Caregiver 10) Some caregiver's resisted recommendations made by care staff if they felt it could potentially lead to an unsafe situation: "I wasn't the type of person that was assertive; they would have sent her home. And she would have had an accident, and she would have killed herself. I am absolutely certain of that. I mean I have to physically take her car away from her because even though she knew she wasn't allowed to drive…" (NZ, Case 3, Caregiver 10) Patients expressed their own personal fears including slipping in the shower or falling and getting lost outside: Patients and caregivers wanted to adapt their homes (with grab bars, appropriately sized wheel-chairs and walkers) to support confidence and ease of mobility both inside and outside the home.
"I would love to have a shower but at the moment I can't step on onto the bath. But they're going to take all that out for me […] so I can just walk into the shower." (NZ, Case 1, Patient 6)

Being Independent
The health care system, oriented toward safety sometimes restricted patient independence. The patient detailed below was living with her children and did not want to be put in a nursing home. She preferred to age in her own home. The act of caregiving limited caregivers' independence. It was difficult for caregivers to make plans too far from home, go on vacation and partake in social activities. Some caregivers constantly checked in with their loved ones if they were concerned about leaving them alone for too long. For some, this stemmed from a lack of trust in care providers in their absence, (particularly if staff turnover was high). Patients with dementia were uncomfortable with new staff which limited the caregiver's ability to get away and have a break. On the other hand, the health care system also enhanced independence. Paid supports such as respite care (if structured in long enough blocks of time), adult day programs where patients could spend time with their peers, allowed both patients and caregivers to feel a sense of independence and contentment. Even small things like providers' arranging to drive and accompany a patient to an appointment, even when a caregiver was present, freed up time for caregivers to get other activities done or have a much needed break.
"It's like when Mum has to go to the hospital and stuff like that, appointments, they come pick her up and take her there, bring her home. It saves me doing it." (NZ, Case 2, Caregiver 19) Finally, supportive housing in the Canadian context provided a structure that enabled patients to easily self-manage and call on providers, if and when they needed supports (such as taking food out of the oven) or hitting a call bell if they felt dizzy.

Discussion
The paper provides an overview of what matters most to older adults with chronic conditions and the people who care for them. The paper draws from 172 in-depth interviews with patients with complex care needs and their caregivers from a range of jurisdictions in two countries. Our sample was ethnically diverse including participants who identified as Māori, New Zealand European, East Asian, European, Caribbean and South Asian; 10% of participants were non-English speaking. Core attributes of care that were important to patients and caregivers were identified-feeling heard, appreciated and comfortable; having someone to count on; easily accessing health and social care; knowing how to manage health now and in the future; feeling safe; and being independent. We explore our findings further under three broad categories: the social side of care, 'managing' health and trading off.

The Social Side of Care
Each of the attributes, articulated by patients and caregivers pointed to the importance of the social side of care, including the importance of relationships between patients, caregivers and the care team. Access to social and instrumental supports was critical and this ranged from healthy food, to reliable transportation, and access to hobbies of interest.
The human side or relational aspects of care are often taken for granted in favor of foci on cure, treatment and symptom control. Busy health care environments afford little time for providers to develop relationships with patients and families, to reflect, listen and engage meaningfully. It is during these encounters that trust can be established, comfort increased and priorities and preferences of all parties revealed-critical to creating a care plan that works. This stands in stark contrast to medical models of care and clinical practice guidelines that create parameters around the roles and activities of care teams and perpetuates an orientation toward disease management.
In some cases, patients and caregivers recognized the constraints of the provider and adjusted their expectations and actions accordingly, choosing priorities to discuss now versus later. In these cases, they seemed cognizant of the providers' constraints within the busy health setting. Patients in these cases did not express dissatisfaction with their care; they simply acknowledged the reality of their situation. This type of situational awareness may have drawbacks as well as benefits. For example, patients may lower their expectations to a point where their needs are not fully met because they censor the conversation with providers, potentially leaving out important aspects of their needs and preferences.
There is some emphasis in the patient centered care literature for providers to put themselves in the shoes of the patient it is also incumbent upon patients to put themselves in the shoes of the provider. Like any relationship, putting yourself in the shoes of the other, can foster empathy within a relationship and facilitate a strong therapeutic alliance. The concept of counter-transference is relevant here-the "sensitivity and insight into the reactions of both parties [9, p. 236]." The management of multiple complex health and social needs in a system of care that is not wholly integrated requires some level of sensitivity to the other party. Perhaps this should be considered an essential component of person centered care; a more realistic goal as we look to create conditions in health systems to foster better care experiences. However, caregivers may find themselves doing more than they should, or doing things they do not feel confident doing and being empathetic to providers will not solve this issue. The patient/caregiver and provider relationship is one of unequal power so there is a risk that patients and caregivers will limit their demands based on available resources.

'Managing' Health
Having a "connector"-someone to rely on in times of need was critically important to people managing complex health needs. In a paper by Haggerty entitled "Ordering the Chaos for patients with multmorbidity" [30] the importance of having a core coordinator to ' connect the dots' for people with multiple conditions was discussed. She suggests this role should be fulfilled by the person with the most comprehensive knowledge, pointing to the general practitioner. While this could be the case, our study also shows that such roles are effectively undertaken by nurse practitioners, nurses and community social workers (particularly in NZ) as well as unpaid family and friend caregivers or volunteers. When the core 'go-to' person was not the physician, it freed up the physician's time to do other things. Care delivery appeared streamlined as as long as the primary care team still effectively communicated with the connector. The importance of care navigators (also referred to as case managers or care coordinators) are well cited in the literature [31][32][33] but coordinators often get stuck within a specific sector or boundary (e.g., such as hospital but requires the mobilization of resources in the homecare or housing sector). These findings relate to the literature on inter-organizational work and the importance of individuals working across boundaries or 'boundary spanners' [34][35][36] to meet the diverse needs of patients. In our study, 'go to' people had access to and relationships with providers in other sectors and were able to access resources from them. When providers could cross boundaries (i.e., organizations and sectors)-either by wearing multiple hats (e.g., providing both health and socially oriented care), or working in a space that allowed patients and caregivers to easily access social resources (fresh food, exercise programs, community gardens, opportunities to engage with peers) it facilitated an overall, better health care experience and easier access to needed resources that were meaningful.
Knowing how to manage health and what to expect was important for both patients and caregivers who at times found themselves with no clear answers as they attempted to manage multiple and often conflicting treatment regimens. There is a burgeoning literature on self-management support including tool-kits and taxonomy's that are meant to operationalize self-management activities. For example, the Promoting Resilience, Independence and Self-Management Support (PRISMS) taxonomy outlines 14 components or 'tools' that support self-management and care of people with chronic conditions including information about conditions and available resources, an agreed upon clinical action plan, regular review, ongoing monitoring, practical support of medicines and behaviors, provision of equipment, easy access to advice and support when needed, learning how to communicate with providers, training for everyday activities including selfmanagement of conditions, coping, access to social support and advice on how to handle lifestyle stressors [37]. As acknowledged by co-author (NS), in a previous paper [38], this taxonomy does not provide enough detail on the relationship and engagement between patients, caregivers and providers. Our work also acknowledges the 'trial and error' approach to managing multiple chronic conditions, and the 'work' required by both the provider and patient/caregiver to continually communicate, and make adaptations. The 'work' needs to be situated within a trusting relationship where patients and caregivers feel comfortable expressing their needs and disagreements. The continuous 'back and forth' and elicitations of preferences and goals supports the idea of 'minimally disruptive medicine' -improving outcomes that matter to people with the smallest burden of treatment possible [39].

Trading Off
Our analysis suggests that not all attributes are perceived equally. In addition to overlapping and intersecting, the attributes may trade-off for patients and caregivers. The clearest example was the trade-off between 'safety' and 'independence.' While both attributes were important to patients and caregivers, for caregivers, patient safety was prioritized over patient independence. Achieving the right balance between safety and independence was difficult and caregivers often experienced guilt and uncertainty with the decisions and actions they took. Caregivers witnessed angst among those they cared for who yearned to do activities that placed them at risk. This trade-off was particularly apparent among people with dementia where caregivers were concerned about patient's safety and wellbeing, would limit a patient's outside activity and hobbies unless they were there to closely monitor them. A tradeoff was mitigated when providers included caregivers in the care plan and were aware of their needs as well as the patient's needs. For example, arranging time for respite care so the caregiver could participate in an enjoyed activity; scheduling longer blocks of care; and arranging transportation for the patient to get to and from appointments; took the burden off the caregiver. Another example is the personal modifications made by patients and caregivers themselves as they adjusted to their reality with illness. In these cases, changes to regular activities and routines were self-imposed but, at times, led to mental anguish and a restricted life (e.g., patients would stay indoors and experience sadness at not being able to do an enjoyed activity like playing sports or gardening). The more the care team could do to help patients and caregivers keep some semblance of a 'normal' life was appreciated (which could include access to day program, home and virtual visits with the care team and access to volunteers).
Finally, as noted in Figure 1, it seemed that certain attributes activated other attributes. Our research suggests that access to care is activated by having someone to count on (a key point person who is responsive). When the provider/team is responsive and open to patient and caregiver needs, they are more likely to feel heard. Knowing how to manage health and what to expect is a key component of their interactions with the provider/team. It seems that there is always some division between health care and social care which is why they sit at opposite sides of the jagged line. We define health care as support for medical concerns, symptoms and activities of daily living (bathing, mobility, etc.). Social care is defined as instrumental activities of daily living (e.g., housekeeping, meal planning, paying bills, etc.), respite care, socialization, as well as social determinants (including housing and food security). Balancing safety and independence is a key goal for caregivers and providers but tend to trade-off. For example, caregivers and providers tend to prioritize safety while patients prioritize independence. Also, as caregiver's strive to keep their loved ones safe, they too, may feel a loss of independence.

Findings in relation to previous work
The relational attribute in our study (feeling heard, appreciated and comfortable) coincide with key tenets of person centered care [8][9][10] also described in the early works of Balint [40] and Rogers [41]. It also reflects more meaningful engagement as described in the patient engagement continuum by Carman et al. [11], as it moves beyond consultation to involvement and partnership. Mead and Bower [9] conducted a review of the empirical and conceptual literature of patient centered care, with a focus on the patient-doctor relationship. They identified 5 dimensions: biopsychosocial perspective, 'patient as person', sharing power and responsibility, therapeutic alliance and doctor as person. Similarly, in a recent narrative review, Santana et al. [14] synthesized the patient centered care literature by Donabedian's structure-process-outcome framework. Structural variables included factors such as supporting a workforce committed to patient centered care and structures to support health information technology across sectors; process variables included respectful and compassionate care and engaging patients and families; and outcome variables included access to care and patient reported outcomes. These findings align with our work while drawing attention to the structural components required to enable patient and caregiver centered attributes to be realized.
Our findings are also supported by a qualitative study conducted by Bayliss et al. [42] of 26 community dwelling older adults with multimorbidity who wanted easy access to their care providers, clear communication of care plans that were tailored to their needs, support from a single coordinator, and providers who listened to them.
Finally, our work coincides with and extends an emerging body of literature on goals of care. Goals of care, often elicited from questions directed to patients such as "What matters to you?" often reveal things that are social in nature, as opposed to medical. Literature on goals of care reveals that people may rather face death than lose their independence [43]. As pointed out by Bernsten et al. health goals and social goals are intricately connected as health issues may get in the way of achieving life oriented or social goals [44]. We saw this in our study as patients and caregivers both voluntarily and involuntarily adjusted their routines and hobbies of interest due to their health issues. In a recent study, Vermunt et al. [45] outlined a 3 goal model for patients: disease or symptom level goals; functional goals as well as fundamental goals (patient priorities and values). Our paper extends this work by exploring what these fundamental goals look like and how they might be operationalized in Community Based Primary HealthCare for older adults with complex needs.
The activities and attributes of outcomes that matter to people (summarized in Table 2) can support the implementation of programs that are designed with the user and their families in mind [11]. Our study also demonstrates how these outcomes overlap and trade-off with one another.

Limitations
This paper provides an analysis of high level attributes that were identified by both patients and caregivers across multiple jurisdictions within two countries providing insight into things that matter to people, generally. Our paper does not provide a comparative analysis of attributes, by key subgroups such as patients, caregivers, or geographical factors (jurisdictions) or individual characteristics (ethnicities, language groups, etc.) which would help to answer important implementation questions including, what works for whom and in what conditions? Future work of the team will consider the perspectives of providers, organization leads and decision makers; required to inform the implementation of person centered CBPHC.

Conclusions
Many key attributes of good care extend beyond the management of disease. The importance of comfortable and reliable relationships, being independent, having access to social care resources and the trade-offs that patients and caregivers make as their needs change need to be considered as health care systems seek to better coordinate and integrate care for vulnerable populations and their families. While our findings shed light on activities that characterize these attributes, further research on implementation barriers and facilitators is required. The analysis presented in this paper is the fundamental first step in understanding core attributes that should be considered in the design and delivery of care from the perspectives of people with complex care needs and their caregivers.