Study design

We used Thorne’s qualitative methodology, interpretive description (ID),20 that addresses clinical questions using a flexible structure for inductively describing a phenomenon and understanding it from the perspective of those experiencing it.21 ID acknowledges ‘the constructed and contextual nature of human experience that at the same time allows for shared realities’. (Thorne et al, p3)21 Two philosophical underpinnings of the ID design and this research are that: (a) reality is subjective, constructed, complex and contextual; and (b) the researcher and researched interact to produce research understandings.21 ID studies are focused on clinical realities, conducted in naturalistic contexts and are intended to positively impact clinical care.20 21

Study setting and sample

Purposeful sampling strategies were used to recruit older adults with MCC including criterion sampling and maximum variation sampling. Eligible participants: (a) were ≥65 years, (b) were community-dwelling, (c) were English-speaking, (d) had three or more chronic conditions and (e) had at least one chronic condition that included diabetes, dementia or stroke. These conditions were selected because they are among the leading causes of death among Canadians and are associated with high use of healthcare services.22 23 Maximum variation sampling ensured that there was diversity among older adults in relation to age, gender and chronic conditions; we monitored the demographic characteristics of participants as they were recruited, and tried to ensure approximately equal proportions of older adults who: (a) were male and female; (b) were 67–74 years and 75 and over; and (c) had each of the three chronic conditions as above. These sampling decisions were informed by the literature we reviewed on MCC. Recruitment and analysis were conducted in parallel. Data collection ended when we had some confidence that the variation and complexity of participant responses were addressing the research question, recognising that there is always more to study on the topic.20

Eligible participants were identified from: (a) the patient rosters of two primary care practice settings in southern Ontario, Canada; (b) persons receiving support from the local Alzheimer Society and (c) through media postings (local newspapers, senior centres and on partner websites). In the ongoing analysis, we identified the need to better understand perspectives of persons with dementia, so the final three participants were recruited from the local Alzheimer Society. The main recruitment sites received an honorarium of $3000 (Canadian dollars). All participants received a $25 honorarium. Community-based programme representatives, not caring directly for the older adult, identified and contacted potential participants by phone. At the time of the first phone call to participants, the Research Coordinator asked each person if they had been diagnosed with any of a list of 20 chronic conditions. Only those with three or more conditions were included in the study. Research Coordinators provided additional information for participants, confirmed their study eligibility and arranged a mutual location and time for the interview.

Data collection

Data were collected from July 2013 to November 2013 through individual face-to-face digitally recorded semistructured interviews of 1–1.5 hours using an interview guide informed by relevant literature. Box 1 provides a sample of the interview questions. The interview guide consisted of 20 questions with a number of probes for each question. Based on a pilot interview, we simplified the wording of some questions and added probes. Participants were encouraged to introduce novel ideas throughout the interview through the use of: (a) a broad opening question related to their experiences of living with MCC, (b) probes such as ‘is there anything else’ throughout the interview and (c) a final question asking if there was anything else they wanted to share. Experienced research coordinators, trained in consent and data collection procedures, interviewed participants. For individuals who had cognitive issues related to stroke or dementia, the Research Coordinator ensured simple language was used and extra time was provided in conducting interviews. In cases where a spouse or family caregiver was present in the home at the time of the interview, the Research Coordinator asked them to kindly leave the room while the interview was taking place, so that the interview could focus on understanding the perspective of the participant.

Data analysis

Digital recordings of interviews were transcribed verbatim by a trained transcriptionist and cleaned for accuracy by a research assistant. We used inductive thematic analysis24 as an analytic approach, which is consistent with the ID design25 and has been used in other ID studies. Our theoretical positioning was consistent with the two philosophical underpinnings of ID described previously. We followed the 6 steps of thematic analysis. In step 1, becoming familiar with the data, three research team members (two qualitative experts and one graduate student) each read through all transcripts and noted preliminary ideas about possible themes. We also reflexively documented our own feelings and reactions to the transcripts and how these influenced our understandings of the data, and discussed these in our team meetings. In step 2, performing coding, the three team members developed a coding scheme inductively from the data based on independent review of five transcripts. We met to reach agreement on a final coding scheme and two people used this to code all transcripts using NVivo V.11.0 to assist with data management. In steps 3 and 4, seeking themes and reviewing themes, the three team members met weekly over 3 months to identify recurring and converging themes. We used constant comparative analysis to identify similarities and differences in themes across participants. The entire research team then reviewed the themes and data within each theme and made suggestions for the final themes. In step 5, we created definitions of themes and named each theme. In step 6, we developed a written report of the themes generated.

Methodological integrity and rigour

Credibility, or the accurate reflection of the experiences of participants26 was achieved through transparent descriptions of the research process and investigator triangulation that involved analysis conducted by investigators with divergent backgrounds. Transferability, or the ability to apply findings to similar contexts, was met through clear descriptions of the participants, settings and the research process.20 26 Maximum variation sampling facilitated diverse perspectives and enhanced the transferability of findings.27 Dependability, or the consistency and quality of the inquiry processes over time,26 was addressed though the use of field notes and an audit trail of study decisions. Confirmability, the degree to which the data and interpretations are grounded in real events,26 was met by including participants’ direct quotes in the findings and staying true to their exact words. Direct quotes in this paper have been labelled with participant numbers.

Patient involvement

This study was conducted through the Aging, Community and Health Research Unit (ACHRU) at McMaster University (http://achru.mcmaster.ca). Researchers within ACHRU work with a Stakeholder Advisory Group (including patients and caregivers) to identify research priorities, conduct studies and disseminate findings with the goal of promoting optimal ageing at home. All participants received a mailed summary of the study findings.

Ethical considerations

This study was conducted in accordance with the Tri-Council Policy Statement, Ethical Conduct for Research Involving Humans.28 Written informed consent was obtained from all participants prior to data collection. Older adults who had dementia were deemed capable to consent if they met the following three criteria identified by Cohen-Mansfield29: (1) understood the proposed research activities, (2) made an informed decision concerning willingness to participate in those activities and (3) communicated this decision to the Research Coordinator.

Demographic characteristics, chronic conditions and support

Twenty-one older adults (mean age=76.9 years, SD=7.4 years) participated in the study (table 1). There were similar proportions of male (52.4%) and female (47.6%) participants. Older adults reported having between 3 and 13 chronic conditions (mean=7.4, SD=2.7). All participants were Caucasian. Participants were recruited from two primary care practice settings (n=15), the local Alzheimer Society (n=3) and media postings (n=3). Most older adults (90.5%) reported having a family member as a caregiver (table 2). These caregivers provided a wide range of support including help with daily activities, personal care, managing care and social and emotional support.

Experiences of living with MCC

Older adults’ experiences of living with MCC were characterised by five themes: (1) trying to stay healthy while living with MCC, (2) depending on family caregivers for support with just about everything, (3) paying the high costs of living with MCC, (4) making healthcare decisions by proxy and (5) receiving healthcare services that do not address the complex needs of persons living with MCC.

Trying to stay healthy while living with MCC

Older adult participants tried to stay as healthy as they could while recognising that they were living with MCC that were progressively worsening over time. They explained that ‘you just do your best at looking after yourself.’ (P07) Most participants talked about engaging in physical activity and eating healthy foods to promote health and prevent their chronic conditions from getting worse. Walking was one of the most commonly mentioned activities; ‘Well, I just keep on top of everything and make sure that I move…I walk a lot.’ (P07) Some participants felt that physical activity was limited by chronic conditions and they paced themselves given their declining health: ‘I try to go for walks. I have to go slowly. Before, I could walk as much as I wanted.’ (P17)

Individuals living with diabetes spoke extensively about eating well as a way to manage MCC: ‘I haven’t touched dessert with any amount of sugar in it. I basically stick to the diet…And my blood sugar has been staying down.’ (P06) One individual made major changes to his smoking and alcohol use after a new diagnosis of a chronic heart condition: ‘That’s another thing to deal with, the addictions. I went to a treatment centre and today I don’t even think about a drink…and then the smoking…it’s been a year and 5 days [without].’ (P09)

Participants described maintaining mental and emotional health through positive attitudes and coping strategies. Most older adults held a positive attitude to life in spite of living with MCC: ‘My life doesn’t revolve around illness at all’ (P01); ‘I don’t look on it as managing more than one condition at a time; it’s just a matter of managing my life and getting the best out of my life and putting as much into it as I can.’ (P13) Participants learnt to accept the reality of MCC in order to cope with new and ongoing conditions: ‘I’ve adapted to it as it’s happened; you get this problem and then you get this problem and then you have another problem and I’ve just dealt with it.’ (P11)

Participants described staying healthy while living with MCC through active engagement in social and community activities: ‘I do mostly volunteer work; get out and do things…I have a circle of friends who meet once a month.’ (P01) These activities gave participants a sense of purpose and connection. Some individuals who were more limited in their activities due to their MCC made connections through social media: ‘I get a lot of support from friends and the people I know on Facebook.’ (P07) Finally, individuals spoke of the importance of being part of a spiritual community: ‘I belong to three groups of my church…and an Alzheimer’s group…they offer friendship, and we laugh.’ (P21)

Participants living with MCC were prescribed multiple medications and they explained that taking these medications as prescribed was a way to stay healthy: ‘What do you do to stay healthy? Just take pills.’ (P20) They talked about being careful with their medications; one person described it as a form of vigilance: ‘I am vigilant about taking the medication that’s prescribed for me.’ (P10) One of the main challenges participants experienced, sometimes related to cognitive issues, was forgetting to take their medications: ‘I forgot one night to take them and I went over to the hospital… they told me that I should get them done up in a dosette and they’re all labelled for the day.’ (P06) Many participants described the use of such clearly labelled weekly packages of medications in order to manage their complex medication regimens.

Participants described keeping lists of medications and sharing these with doctors and pharmacists. They often worked with pharmacists to manage their medications; some talked about having an annual medication review to ‘go over the medications and identify any changes and confirm what the current level of dosage is.’ (P10) Participants also obtained information from pharmacists about possible drug interactions when new medications were added to an already long list of medications: ‘I have often called the druggist and said, ‘Okay, I have to take such and such and such and such, is that okay with what I am taking now?’ (P18) Many older adults relied on family caregivers to help with medication management: ‘I rely completely on my wife…[She] puts out all my prescriptions on a weekly basis.’ (P04) In summary, older adults living with MCC tried to stay as healthy as they could by enacting healthy lifestyles, taking prescribed medications and maintaining social and community connections.

Depending on family caregivers for help with just about everything

These older adults, who had on average 7.4 chronic conditions, were heavily reliant on family caregivers (primarily spouses and children) for help with many areas of their daily lives including daily living activities and emotional and social support. Participants reported receiving help with a broad range of daily living activities such as personal care (eg, bathing and dressing) as well as instrumental activities (eg, cooking, housekeeping, driving, scheduling and attending appointments, and managing medications). One participant gave this example that clearly illustrates her almost total reliance on her spouse in order to continue living at home:

He [husband] sometimes helps me get dressed on a ‘stiff day.’ He drives me for most of my errands; he does all the carrying; he does the laundry. Sometimes he’ll do the dishes. He helps quite a bit with the housework and with the grandchildren. (P01)

Given the number of medical appointments participants had, not only with their family physicians but also specialists, they relied heavily on others for transportation. This was particularly important when the older adult did not drive, or in situations where their license had been revoked (eg, after a stroke, or when living with dementia): ‘We have to rely on our two sons or somebody to take us anyplace we want to go. We don’t drive.’ (P04)

Participants also described how they depended on family and friends for emotional and social support in living with the complexity of MCC. Participants spoke of the strain and stress of living with conditions that worsened with time and that placed them at increased risk of no longer being able to live at home. An older man with dementia spoke of the support he received from his wife as a form of comfort: ‘The very fact that we’re always together, we do things together, that’s the comfort and the emotional support.’ (P04) Participants spoke of the value of having someone to talk to about their experiences with MCC so they would not feel alone and isolated in their journey: ‘My brother has been through all this. We sit and we talk on the phone every week… and he’s always, ’You got to do this; you got to do that, because that’s part of what you have to do to make this work.'’ (P14) Participants also described how family helped to motivate them and encourage them to remain independent: ‘She [spouse] keeps me motivated in a lot of things. We both try to push each other to independence and do what we want to do.’ (P14) In summary, participants living with MCC were heavily dependent on their family caregivers for many kinds of support, without which they would be unable to continue living in the community.

Paying the high costs of living with MCC

Older adults talked extensively about the financial costs of living with MCC. They explained that paying for these costs, whether it was transportation, medications or lost work income, forced them to make choices that negatively impacted their lives and health. Many participants spoke of the high costs of transportation and parking related to their many medical appointments. Some participants spoke of having to pay privately for personal support workers, homemakers or others to assist them with daily living activities so that they could continue to live in their own homes: ‘the support persons or unfunded OT/PT [occupational or physical] therapy that my family physician believes would be helpful.’ (P10) Participants also described having to pay high costs for special medications that then stretched their ability to pay: ‘She [doctor] put me on medication for Alzheimer’s. But every month I have to pay for it myself, sixty-nine dollars, so that’s something else I want to ask her: Is there another medication that is covered [by the health insurance plan]?’ (P21)

Older adults spoke about how they had to carefully manage their finances given the costs associated with living with MCC. Two older adults living with MCC were still working. They reported a struggle in balancing employment and trying to best manage their MCC. One participant explained the tensions experienced in needing to work but having an employer limit time away from work for treatment of MCC: ‘clearly, being employed, as far as my employer was concerned, got in the way of me being able to have the treatment options that I needed; painful, but true.’ (P10) One man spoke about the impact of losing contract work due to a recent stroke and the concessions to family lifestyle that were made: ‘We both got to be going all the time and that is the problem so we back off a little bit because you do not have the money. If you are $40 000 less this year, that is $40 000 less things you are going to do.’ (P14) Some participants depended on family for help with managing finances and for financial assistance when they could not make ends meet. An older man with dementia described: ‘One son kind of manages the money and lends me money when I need it and then I pay him back when I get my government [pension].’ (P08) Overall, participants paid many out-of-pocket expenses related to their MCC and these costs created financial hardships for themselves and their families. Further, employed participants experienced workplace restrictions that actually constrained their ability to receive needed treatment, representing a high cost to pay for living with MCC.

Making healthcare decisions by proxy

Older adults living with MCC made many healthcare decisions by proxy, that is, the decisions were made by either their HCPs or by the distress associated with symptoms they experienced. Many participants indicated that they were not active participants with their healthcare team in making decisions related to their healthcare. Instead, they accepted decisions made by HCPs, in particular, physicians. ‘[I] try to do what the doctor tells me to do.’ (P02) Their comments often reflected their own lack of understanding of their conditions and their perceptions of HCPs as the experts in care; ‘I don’t question things. They [nurses, doctors, assistants] tell me to do something and I do. It’s okay because I don’t know much about it.’ (P17) Many older adults explained that it was their choice to leave personal care decisions in the hands of HCPs: ‘I pretty well leave it up to the doctors. …I’m always told about it but the decision, I don’t think is mine.’ (P20) Participants indicated that medication-related decisions were also made by a physician, or between HCPs, without involving the older adult: ‘Oh, the doctor makes those - any decisions with medications.’ (P05) Older adults indicated that they accepted and followed doctor orders: ‘There was no conversation about it. She [doctor] wrote a prescription for that special pill and I accept what she says.’ (P21)

However, a small number of participants explained that being part of the decision-making process was important to them, “Other people might be very happy and feel very supported if they leave it in their doctor’s hands…but that doesn’t work for me.’ (P10) These participants described a more patient-centred approach of informed decision-making with HCPs, ‘We [older adult and family doctor] decided together.’ (P01) In some situations, collaborative decision-making occurred around medications, ‘I discussed the insulin with [Diabetes RN] and with the dietitian, with [the doctor]. My thinking is you guys are the experts so if you think I should try it, I’ll try it.’ (P09)

Participants also made healthcare decisions based on how distressing their symptoms of MCC were: ‘The acute symptoms are managed first’ (P10); ‘Whatever’s the most painful…the most persistent.’ (P13) In only a few cases, did participants describe a decision-making process that carefully considered the broader and longer term effects of how they set priorities of care: ‘The diabetes would get the first [priority] because it affects everything else…your eyes and your organs and your kidneys.’ (P09) Overall, participants made healthcare decisions by proxy, either following HCP orders or according to the distress level of symptoms associated with MCC. Among these participants, there was minimal evidence of taking a lead or co-role in healthcare decision-making based on a sound understanding of the complexity of their chronic conditions.

Receiving healthcare services that do not address the complex needs of persons living with MCC

These older adults, living with an average of 7.4 chronic conditions, received healthcare services not only from their family physician, but also from 2 to 7 physician specialists as well as other HCPs (eg, nurses, chiropractors, personal support workers). They reported that the healthcare services received did not address their complex needs. Services were often experienced as piecemeal, focusing on single physical conditions, rather than on the interaction of all their chronic conditions and seldom attending to their holistic psychological and social needs as a person living with MCC:

You wind up going to all these extra people for each condition which I have found difficult. You don’t know them well. You don’t see them that often. You kind of feel that you are whatever you have so, let’s say if you go to a Rheumatologist, you only want to talk about your arthritis, you don’t want to talk about anything else. But it’s frustrating…everything’s interconnected. (P01)

Participants accepted the reality of this single-condition approach by limiting information-sharing with HCPs, ‘When I go to a particular one (specialist) for, say the kidney specialist, they don’t ask as to other problems. They’re there to take care of that particular one that I’m in there for, so I don’t bring it up either’ (P19) and ‘When I see the Rheumatologist, I don’t mention the diabetes… it’s like there’s little bits of me.’ (P13) Participants were subtly coerced to comply with a healthcare approach that denied the complex interweave of their chronic conditions, potentially contributing to further deterioration of their health. One participant eloquently described the impersonal and mechanistic experience of care that made her feel like a ‘bad patient’ if she hindered the flow of healthcare work: ‘I’m not getting the kind of support that I think is appropriate…it’s as though I have no emotional needs…I’m sort of marched through like a robot…I’m a bad patient if I hold up the line.’ (P10)

When asked, most older adults expressed uncertainty about how their care was coordinated among multiple HCPs. As one participant declared, ‘I really don’t know and I wonder [how care is coordinated].’ (P01) Participants assumed that service providers communicated with each other about their complex care needs, but few could describe how this occurred: ‘I guess they [doctors] talk. I don’t know.’ (P11) Some participants identified their family physician as their care coordinator, the person linking them to other services: ‘My family physician is the coordinator of access to all the specialists and all of the allied health professionals so referrals for physio and OT would come through her as well…She and I being the major coordinators of everything and it isn’t going to get simpler as I get older.’ (P10)

Four participants living with MCC took on the role of coordinating their own care, as the healthcare system did not assume this responsibility. They indicated that they coordinate care by: ‘calling and making appointments’ (P03), arranging schedules of appointments: ‘if that doesn’t work, given all the other coordinating that’s going on, I just phone the specialist’s office and reschedule.’ (P10) The responsibility for care coordination was experienced as burdensome and frustrating for participants who already had many demands on their limited time and energy:

I think the frustration… is that so much of what I’m expected to do involves me being my own care coordinator so I’m the one who phones and arranges services and arranges payments…if I could just be the cooperative, participative patient instead of the schedule coordinator, data assembly individual, it would be really helpful. (P10)

Participants also spoke of the lack of communication about their MCC between HCPs and their own need to fill that gap in the system: ‘It’s sort of up to me to advise [doctors] about health conditions.’ (P18) In summary, older adults living with MCC experienced the healthcare system as unable to address their complex physical and emotional needs, and either fell in line with the expectations of the system or took on missing roles (eg, care coordination) themselves.