Twenty-six individuals ranging in age from 20 to 58
years of age (average
37) – thirteen men and thirteen women – participated in the focus groups. All participants self-identified as having at least one chronic illness. Nine reported having one, seven reported having two, while ten had three or more chronic illnesses. The chronic illnesses reported were: active addition or addiction recovery, including the associated physical symptoms of both (n
16); arthritis or other rheumatic disease (n
8); depression (n
7); hepatitis C (n
5); attention deficit hyperactivity disorder (n
4); high blood pressure (n
2); diabetes (n
1); hypoglycemia (n
1); Crohn’s disease (n
1); liver disease (n
1); and post-traumatic stress disorder (n
1). Two participants reported also having very rare chronic illnesses that we do not mention here by name to protect anonymity, and a third chose not to disclose the illnesses he was managing. All but two were receiving some form of government income assistance at the time of data collection. They had lived in the community of focus anywhere between two weeks and 38
years, with the average being just over four years.
All participants self-identified as being unattached to a family doctor, though some did have a regular place of care (i.e., a usual walk-in clinic). Most participants identified life transitions (e.g., moving, release from prison, living in transitional housing) as being the root cause of their lack of attachment. In the remainder of section we examine the four dominant themes that contribute to understanding participants’ lived experiences of unattachment: (1) coping with unattachment; (2) accessing preventative care; (3) health record and administration challenges; and (4) perceived interpersonal benefits of attachment. Direct quotations are provided to convey participants’ experiential accounts, noting in brackets the focus group number.
Coping with unattachment
One way that some participants coped with not having a regular family doctor was to use walk-in clinics. Sixteen participants cited reliance on walk-in clinics, with some going to these clinics more than once per month and others using them infrequently. The ten participants who did not use walk-in clincis either reported having no ongoing strategy for accessing care or avoiding health services altogether by “sucking it up” (FG2). While some of the16 who used walk-in clinics visited a single clinic regularly, others had no clinic preference and visited whichever one was closest or had the shortest wait time when they were in need of care. Using walk-in clinics was collectively seen by the participants as the best way to address their health needs while being unattached, although there were some notable limitations:
"But unfortunately, when you just see a rotating doctor…I think it’s just, the matter of fact, is that I should just probably be more aware of my health, and seek out someone more competent for certain things that I’ve got going on with me, right. (FG1)"
A minority of participants reliant on walk-in clinics were very satisfied with this strategy of coping with unattachment, reporting that “they’re good doctors” (FG3). Even in cases where participants were satisfied with the care received, there was still a desire to attain attachment to a regular family doctor.
A problem-based coping strategy participants employed to manage unattachment was to undertake active measures to get onto the roster of a family doctor. These measures included asking others if they knew of family doctors accepting patients, seeking assistance from counsellors, and looking for information online. These active measures had, however, not been successful. One reason for this lack of success is that it was thought that some family doctors might not want to accept new patients because they want to keep their client loads low. It was also explained that family doctors can “choose who their patients will be” (FG3), and it was thought that chronically ill patients, and particularly those managing addictions, were undesirable to take on because they require ongoing care and attention. One participant went as far as to say that: “…they’re [family doctors] discriminating against us” (FG1). Although participants did not like the fact that doctors had some choice over which patients they took on, there was some understanding of why this might take place: “It’s not fair, but if I were a doctor, I’d pick and choose. I’d want people that were not going to give me trouble…” (FG3). In general, there was a strong sense that participants’ unsuccessful attempts to gain attachment meant that they were undesirable patients. This was thought to be most clearly demonstrated in cases where participants had been interviewed by family doctors who were accepting new patients only to ultimately not be taken onto their rosters. Part of managing unattachment thus involved coping with the notion that one might be an undesirable patient in addition to seeking out ways to become attached.
Accessing preventative care
Although participants reported experiencing challenges obtaining referrals to secondary and tertiary care providers because of not having a regular family doctor, what they were most concerned about was lack of access to ongoing or preventative care at the primary tier. Instead of visiting a family doctor on a regular basis for chronic illness management and scheduled check-ups, as one individual pointed out, “if you go to a walk-in clinic, you only…walk in when you feel sick, or when you think you’re sick” (FG1). Participants explained that they typically only visited walk-in clinics when symptoms were noticeably exacerbated or when it was apparent that they were dealing with a new condition or symptom, never going for preventative care. This left most participants with waiting until ‘crisis point’ with their chronic illnesses until seeking medical attention, which left some visiting the emergency room more often than they would like. As one participant told:
"…I don’t have a family doctor, and I don’t want to go sit and wait in a clinic…so I’m just going to let it [new health condition] slide… But it’s [health] getting worse and worse, and it comes to the point where I can barely even eat anything, so I had to go to the emergency… (FG2)"
The above example, as well as other experiences described by participants, pointed to the fact that without a family doctor they tended to only seek medical help when they knew they were unwell, rather than as a form of preventative care to help keep them well. They perceived that they would have better access to preventative care and a stronger desire to obtain it through having attachment to a regular family doctor.
Because the participants lacked a regular family doctor, they were concerned that they had no person to prompt them with reminders about annual physical exams, blood work, or vaccinations. Instead, participants had to possess the diligence and desire to monitor and schedule preventative care or routine monitoring for themselves, which can be imperative for certain chronic conditions. Meanwhile, the absence of a family doctor made scheduling regular monitoring tests difficult:
"And it’s frustrating, because…you can’t get anything done. I guess, like I suffer from [hepatitis C], and…like, I’m supposed to have consistent blood tests done, to see where my levels are at, and I can’t, because I haven’t got a regular doctor. There’s no one to monitor them, right? (FG1)"
The health risks are clear in cases such as this one and others where people with conditions that require regular monitoring cannot readily access referrals for blood work. Many participants experienced such risks as a part of their everyday lives as a result of unattachment.
Health record and administration challenges
A challenge participants experienced as a result of both unattachment and life transitions was that they had discontinuous or scattered medical records. While many acknowledged that their own moves and transitions had contributed to this situation, they also believed that if they had a regular family doctor s/he would oversee compiling their record through requesting transfers from clinics they had been treated at over time. Participants thought that an onus was placed upon them to remember important medical information, including recalling details of procedure dates and prescriptions:
"I injured my back…and if I have any future back injuries…they’re not going to know what disc, because I don’t remember which one I put out… But if the doctor doesn’t write in my file, “This is what he’s done. I prescribed this, he… and this is the kind of physio he took,” they’re not going to know any of that, right? (FG3)"
It was also suggested that an incomplete medical record may lead to wasting time and money when tests are repeated because previous results are not available. Concern was also expressed over the fact that prescription histories were discontinuous. As one participant recalled, “…I needed puffers [inhalers]. And I’m diabetic, and when they [walk-in clinic] gave me the prednisone, nobody told me not to take my puffer… So I ended up almost in a diabetic coma” (FG2).
Issues pertaining to health-related administration such as difficulties with completing paperwork and obtaining specialist referrals were raised on multiple occasions as challenges participants faced due to unattachment. For example, in order to receive disability benefits through social assistance, certain paperwork must be filled out by a doctor. It was explained that this presented a challenge for unattached patients. A participant shared his experience: “I tried to get [disability benefits]. I walked into the walk-in clinic…and I tried to get them to fill out my paperwork. He [the doctor] refused [due to a lack of familiarity with his case]” (FG1). Others experienced similar challenges in having paperwork completed for disability benefits, workplace programs, rehabilitation programs, and other forms of assistance. Interestingly, it was also noted several times that a regular family doctor might choose to waive the fee regularly associated with signing a patient’s paperwork due to their familiarity with a patient and his/her financial status. This was seen as a related benefit of attachment.
Perceived interpersonal benefits of attachment
Participants reflected not only on what the practical benefits of having attachment to a family doctor could be (e.g., preventative care reminders, continuous medical record), but also the interpersonal benefits of developing a strong, trusting doctor-patient relationship. Participants wanted to experience having a trusting relationship with a regular family doctor as they believed that it would encourage greater honesty and transparency on their part:
"Like, if you go to see a different person [doctor] every time, there’s no level of trust there. So you’re not really going to get the help you need if you’re not really opening up and telling them what’s really going on. (FG1)"
"Or to even open up, when you’re going to strange doctors, to be able to open up when there’s really a problem. You know, you might not be willing to do that, or say what you would if you had built trust in a family doctor. (FG3)"
Experiencing a trusting relationship was also thought to increase comfort during care because, “they know you, and when it’s personal things… [I] kind of want a family doctor for that” (FG2). The development of a trusting relationship was also thought to be an indicator of a patient no longer being “…another number in the system” (FG1). Participants thought that being and feeling known would heighten the levels of honesty, transparency, and comfort that could ultimately be achieved in a relationship with a regular family doctor.
Avoiding medical care or relying walk-in clinics made it difficult for participants to achieve any form of continuity of care. For example, it was explained that doctors at a walk-in clinic, “…don’t see the deterioration. They just see what you’re walking in with, the symptom you have at present. They’re not seeing that, you know, you’ve gone from being completely healthy to being completely sick…” (FG3). Beyond observing changes in health status over time, it was also suggested repeatedly that having attachment would lessen patients’ abilities to be deceptive because through forming a trusting relationship a regular doctor would come to know the patient and would diffuse any attempts at manipulation. As one participant explained, “if you see the same [doctor] all the time, they’ll learn something about you, enough to know when you’re [lying to] them and when you’re not…to see if you’re trying to just get drugs…” (FG1). Meanwhile, it was noted that patients could easily manipulate the walk-in clinic system in order to obtain desired, but not necessarily needed, pharmaceuticals or medical care.