We identified three main barriers that impede care responsiveness in a context of poverty: the living conditions of PLPs, the quality of interactions between HCPs and PLPs, and the organization and functioning of the healthcare system.
Barriers pertaining to living conditions and medical needs
The precarious economic conditions of PLPs negatively impacted their lives. Participants identified three types of barriers related to living conditions: lack of financial resources, poor housing and environmental stress, and healthcare teams’ powerlessness.
Lack of financial resources
The inadequacy of the benefits provided by Quebec’s Social Assistance Program was raised several times. PLPs explained that it is impossible to maintain good health when living on social assistance, which, as of January 2013, provided $604 for a person living alone. This amount represents about half of the Market Basket Measure and is below the Low Income Cut-off in Canada. Having a job does not necessarily solve the problem, as minimum wage workers are also unable to escape poverty. PLPs must constantly fight to survive, paying close attention to their budget and struggling to meet their basic daily needs (e.g. food, commodities, clothing, transportation, etc.).
Illustrative of this, the topic of food arose frequently in relation to lack of resources. As one PLP participant explained, poverty severely compromises efforts to eat a proper diet:
If you don’t have enough money, you can’t eat your fill. If you don’t have money, you get sick faster because you can’t buy the necessities. The doctor may well tell you what to eat, but if you don’t have the means to buy the basics to feed yourself properly, it doesn’t work.
PLP participants also said that, despite knowing the basics of a good nutrition, it was impossible to achieve due to their financial situation. One gave the example of a diabetic patient who must calculate calories and follow a dietician’s recommendations while trying to stay within a tight budget. PLP participants also stressed the incompatibility of certain HCPs’ recommendations with their reality:
The issue is the poverty itself, because when you live in a precarious situation you can’t take care of your health.... We seem irresponsible, but we can’t eat three meals a day. That’s why we’re not healthy. Then it affects our mental health, too.
Thus, some HCPs’ demands are unrealistic for PLPs, considering their living conditions and financial situation. PLPs’ financial situation also has an impact on their access to healthcare. As one PLP participant noted:
I waited 20 hours [in the emergency room], I went to two clinics, they told me… we can’t take you, there’s no room. The second clinic said… you can come back tonight. I said I didn’t want to run around, I was sick, I was very sick, I was sick as a dog. Was she going to pay for the bus? I’d had bronchitis since October, when I went to the emergency room. I waited 20 hours and I needed to eat, but I had no money, I had almost none.
Long wait times or needing to go to more than one health clinic can generate additional expenses (e.g. transportation, babysitting, etc.). Moreover, the working poor may have work conditions that do not allow them the extra time needed (e.g. strict work hours).
Poor housing and environmental stress
PLPs live in unhealthy physical conditions that may seriously impair their physical and mental health. One PLP participant noted that it is difficult to be healthy without comprehensive care and that life expectancy in poor neighbourhoods is 10 years shorter than in wealthy neighbourhoods:
…this is due to the stress of everyday life and to the means used to counter this stress that are harmful to health. For example, alcohol, cigarettes, and soft drugs. It’s easier to take care of your health if you’re rich. For example, if you’re depressed and you have the means, you can go rest in Florida. If you live in poverty, you return to a dump; it’s not the same thing.
Finally, beyond their financial situation, PLP participants noted that HCPs do not always take into account living conditions such as stress or violence and, as such, have a poor understanding of PLPs’ daily reality. Overall, participants thought that unhealthy living conditions predisposed PLPs to develop chronic illnesses, mental health problems, various addictions, and a sense of isolation.
Healthcare teams’ powerlessness and lack of understanding of poverty
HCPs noted that people without a social network may lack support, especially in terms of physical and psychological health. PLP participants also confirmed that there is a link between poverty and isolation: “It’s true that when we become poor … our social circle often gets smaller.” Because of their isolation, PLPs are not always aware of the resources available to assist them in the healthcare system. Also, some HCPs said they felt powerless and poorly equipped to deal with the difficult life conditions and complex needs of PLPs:
…sometimes you feel like an insignificant pawn, when it [the PLPs’ complex situation] is so big, big, big, big, and then I wonder whether we aren’t left too much to our own devices, we doctors? You know, sometimes we’re seen as all-powerful gods, but I think we should get down from our pedestal and say, well, we need some help, too, to manage a complicated situation like this.
Indeed, some PLPs’ situations are very complex and require a lot of involvement on the part of HCPs, especially in terms of time and paperwork (filling out forms for work disability, social assistance, legal reports for jobs and housing, etc.). One physician gave the example of one of her patients to illustrate this situation:
She was in her forties, she had hearing and visual problems, but it was all a bit too mild to be taken seriously. She was always living on the edge. Most of all, she was always excluded from employment and housing.... So now, nine years later, she’s working.... But it took nine years and an enormous amount of paperwork that I can’t always do if I only have 15 minutes to see a patient. That’s what I’m expected to do: see patients faster and see more of them.
HCP’s sense of powerlessness is accentuated by the lack of resources to assist patients, especially when it comes to psychotherapy and physiotherapy, which are difficult to access within the free public healthcare system in Quebec due to long wait times, and which are costly in the private system. Thus, HCPs do not always feel able to provide the necessary care or optimal treatment:
So there we are with our patient, and we feel overwhelmed and without resources; we can’t prescribe physiotherapy because the patient has no money. So, yes, the only way is often a prescription, because medication is more accessible, and we’re very aware this isn’t the optimal treatment, but we try to do what we can.
One HCP participant noted that, while PLPs are sometimes aware of the resources available to them, particularly in community organizations, some obstacles (e.g. mental health problems, being disorganized, feelings of shame) prevent them from using them. Indeed, PLP participants said they had difficulty using certain resources, such as food banks, because they were embarrassed and felt too ashamed.
Finally, some HCP participants noted that there are not enough resources for helping PLPs, since poverty is not a medical condition, as is, for instance, substance abuse. As one HCP participant said: For something to be recognized as serious, it has to be a disease. That’s what’s bad. PLP participants reacted strongly to these comments, saying:
Poverty isn’t a disease, but after a while, it becomes one, like it or not. Somebody who lives, I don’t know, five years in poverty.... I have a neighbour who’s very sick and he doesn’t want to be treated. He’s been living in extreme poverty for a very a long time. He wonders, if he recovers, whether he should keep on living or not. If he recovers from his illness, he’ll still be living like this. Is it worth it?
Barriers pertaining to the quality of interactions between HCP and PLP
Participants identified two types of barriers to good relationships between HCPs and PLPs: difficult communication and social distance. These barriers are intimately connected to living conditions, since HCPs often misunderstand the realities of PLPs.
Both PLP and HCP participants noted that communication is often difficult between them, which negatively affects their relationship. From the PLPs’ perspective, physicians receive insufficient training in interpersonal skills and consequently cannot communicate effectively with them. One PLP illustrated physicians’ coldness with a photograph of a block of ice. However, HCP participants (mostly the family physicians and residents in family medicine) were surprised PLPs felt this way, because training in interpersonal skills had recently been added to the medical curriculum. A family physician participant stated:
It was hard for us to hear that we, as a profession overall…were like blocks of ice.... There are a lot of expectations in terms of communication, so we work very hard. And, in the end, it has to be said that the people training physicians are aware of this issue, but we still don’t see the effects. We’d like to believe that this might be coming, more humane doctors.
Communication difficulties between PLPs and HCPs may also be associated with their different levels of education. HCPs often use medical language without verifying whether their patients understand. PLPs’ lack of understanding may complicate the care relationship. One PLP participant pointed to lack of trust, fueled by past negative experiences, as another reason why communication is difficult. Finally, the shame felt by some PLPs can be so strong that they prefer to remain silent rather than to talk about their situation with HCPs.
PLPs and HCPs live in different social contexts and do not face the same realities. These differences create social distance, which manifests as: 1) prejudice and labels; 2) different choices and logics, but similar values; and 3) social inequalities and unequal rights.
Prejudice and labels
All participants agreed that HCPs may hold prejudices toward PLPs. In this regard, one PLP participant said: There is the barrier of the ‘welfare’ label. ‘Poor women’ equals stupid and lazy. There are prejudices that are a real barrier between PLPs and HCPs. PLPs also thought that professionals held them to be responsible for their own health problems, and said this was because HCPs were not aware of their circumstances. Of all categories of HCPs, the PLPs identified physicians’ prejudices as the most harmful, as diagnosing from a position of prejudice could create much suffering.
The HCP participants also recognized that professionals sometimes held prejudices toward PLPs, attributing these prejudices to their own limitations, either in terms of their personal boundaries (e.g. they feel uncomfortable dealing with PLPs) or of the system (e.g. they are ill-equipped to deal with PLPs’ complex situations). Although HCP participants recognized that certain professionals may hold prejudices, few admitted to having negative preconceptions about PLPs themselves.
Different choices and logics, but similar values
In the merging of knowledge and practice meetings, it emerged that the PLP and HCP participants held the same values, despite their different choices founded on different logics. A striking example of the contrast in their two logics was their discussion about new mothers’ choice between breastfeeding or using infant formula. HCPs noted that PLPs would rather use formula than breastfeed, even though, in the HCPs’ opinion, breast milk is the best choice for babies’ health and also more economical. One HCP expressed her view of the behaviour of mothers living in poverty who choose not to breastfeed and instead spend money on formula, which is very expensive:
As I see it, breastfeeding is easy, the milk is always warm and available, and it allows the baby to be very close to his mother, to establish a good contact. Several experts say breast milk is good, it has antibodies, lots of things; and then when patients tell me they’re not going to breastfeed, and they’ll buy formula, well, I see that as a barrier. Especially for someone living in poverty, I think it's a shame because we see the price here on the sign, formula is very expensive, whereas breast milk is free.
In contrast, a PLP participant explained that the choice to use formula may be based on the fear of not being able to give babies everything they need in breast milk. Mothers may believe their milk is not good enough because they were often told they were bad and a failure, so they devalue themselves:
Yes, because the choice she makes is: If I’m not eating enough, will my milk be good? Will it have everything it needs? It’s very doubtful, when you eat once a day, and then you eat bread and butter, no matter the menu, it’s not much. You know? You say to yourself that formula, even at $20, at least it’ll have everything [the baby] needs.
Hence, the choices are based on different priorities, which lead to misunderstanding and judgment on both sides. As one HCP participant said:
I couldn’t possibly have known that in the office. I would have asked the woman whether she’s breastfeeding or giving formula. She’d say she’s giving formula. I’m not sure I’d ask her why, and I’m also not sure that it would come out, ‘Well, I give formula because I’m afraid my child won’t get everything he needs in my breast milk, because I don’t eat enough.’ Maybe she’d never tell me she was eating only once a day and that this made her worried about her baby. So I go out of there thinking she’s buying formula, which is super expensive, and that’s not a good choice. And she has the impression I don’t understand her.
Thus, the different choices are based on different logics, as one PLP participant noted:
It’s sad, because everyone wants to be a good mother. But for this woman, being a good mother means breastfeeding. And for another woman, being a good mother means feeding your baby formula. So we have the same values: we want to be good mothers to our children.
Overall, PLPs and HCPs, given their different backgrounds and life experiences, have different logics. PLPs are often trapped in the ‘logic of no choice’, seeing themselves confined to only one solution because of their life conditions (e.g. low income, marital status, unaffordable housing), while perceiving that HCPs have strong opinions about what choices they should make. As one PLP participant noted:
To realize that your opinion of someone who has more money is different from [your opinion of] someone with less; [the former] has a choice. When something is imposed, you have no choice. You have just one option. And that’s what you have to do, because if you don’t, you’re not a good poor person, you don’t do the right things, you’ve missed the boat a little’. That irritates me!
In addition, when PLPs make a choice in their daily lives, they often feel judged. One PLP participant said: Do we have the right to buy a beer without being judged? Without being judged by society? Are we allowed to have fun, to make choices?
In this ‘logic of no choice’, PLPs feel guilty when they are not able to follow the recommendations of HCPs (e.g. regarding nutrition, breastfeeding, etc.). They feel they have the know-how and the intelligence to follow them, but their living conditions are major obstacles that may lead them to make different choices.
Our participants discovered they lived under a ‘logic of no choice’ and realized that HCPs’ actions towards them were guided by a ‘logic of diagnosis’. According to all participants, the ‘logic of diagnosis’ is central to HCPs’ work. With limited resources and time, physicians may reach a diagnosis before completely understanding the patients, including their psychosocial situation. They feel this is the way things should be done, even though they accept that this approach might not work for all patients. As one HCP participant noted:
You know, it takes a diagnosis to treat a patient. And maybe there’s a flaw there and it doesn’t work for all types of people. Then there’s also the fact that we’re expected, with our limited resources, to analyze this patient in half an hour and decide what we’re going to do with him, because the next time we see him may be in six months.
PLPs felt that this situation could have serious consequences, because without taking the time to see the whole situation the HCP could be making a diagnosis based on prejudice. One PLP participant reported that a friend was misdiagnosed with intellectual disability after one consultation of only 15 to 20 minutes:
The physician makes an instantaneous reading, like a Polaroid. You wait a couple of seconds, and then you have the picture. He doesn’t see the overall situation, the stress or the violence you live with. It’s a fragmented vision. Then we’re locked into this diagnosis that the social workers and other health professionals rely on. It follows us our whole life.
Participants spoke about the need to find a meeting point between the contrasting logics of these different worlds. For example, an HCP participant explained her photograph:
What this represented for me, is also the gaps between what we expect of the patient—you’ve talked about it a little: the food guide, what should be done, what’s good—we know, but we can’t do it with what the patient can afford. So what we need to do, in teaching, is to consider people’s purchasing power, so that we can meet in the middle and work together.
However, one PLP challenged the HCP by saying that, although it is a good thing to want to ensure these two different worlds meet, the power imbalance makes it difficult:
Individually, PLPs have very little power over their own lives, but those who try to improve the social situation, it must be said, are totally excluded, they’re not listened to by governments. Those of you who live in the other world as doctors or who rub shoulders with people in power, what can you do…?
Social inequalities and unequal rights
Some participants recognized that PLPs have little social, economic, and political power and social recognition compared to HCPs, who typically come from a higher socioeconomic class. PLP participants were aware of their position and wished that HCPs would offer more help and support. Conversely, HCPs (especially family physicians) thought they were too often perceived as having more power than they actually have. As one noted:
We’re ready to work to change things, but at this point we’re in the same position. We don’t know the ropes, we don’t know where to go…. I’m only a physician, and I’m not pretending to be anything else. So I don’t have any more pull to play the system, I don’t have any more pull to be heard. What I say is not going to be heard any more than what you say.
Some HCP participants initially had the impression that PLPs were accusing them of being the cause of their problems. Then, during the discussion, both groups came to agree that it is the system that produces the barriers and perpetuates social inequality. One HCP participant concluded:
I think the communication between PLPs and physicians is probably not so bad. Maybe it’s the entire system, and everything around it, that really needs to be reviewed in depth.
In the end though, participants agreed that, while the system is partly responsible for some of the barriers, everybody has an individual responsibility to break them down.
Barriers pertaining to the organization and functioning of the health care system
PLP and HCP participants discussed the organization and functioning of the Quebec healthcare system, which tends to create and reinforce barriers. Three categories of barriers were identified: lack of resources, difficult access to care, and healthcare system complexity.
Lack of resources: shortage of medical staff and limited time
The lack of equity-focused interventions in the healthcare system results in staff shortages and, consequently, overall low quality of care. HCPs noted that they are not equipped to meet the needs of PLPs and may feel helpless. They described feeling pressured to perform well at the least cost to the system, which necessarily has implications for the time and services they can provide to the patients. As one HCP participant noted:
If you only knew the pressure! We have nightmares when we hospitalize people, because we can get three or four calls a day asking us to discharge someone who has no reason to remain there. But sometimes it’s against our values to discharge the patient because he has nowhere else to go. But the pressure is really strong.
The lack of time limits HCPs’ ability to fully understand their patients’ situations, to convey all necessary information while ensuring patients’ understanding, to make accurate clinical assessments, to complete all administrative work effectively (e.g. filling out government forms), and to carry out preventive interventions. Moreover, taking more time with a patient in need delays their schedule, causing frustration in other patients. HCPs suggested that improving the multidisciplinary functioning of the healthcare team could help solve these problems.
From the PLPs’ perspective, lack of time during HCP consultations generated stress. They said they felt pressed to the point that they sometimes forgot to mention important issues and feared the time constraints would affect the HCPs’ clinical evaluation, with the attendant potential for misdiagnosis.
Difficult access to care
All participants recognized that limited healthcare system resources made access to care difficult. For HCPs, the most significant problem was the shortage of family physicians in the province, which negatively impacts patients’ health. They pointed out, for example, that patients often go to emergency rooms after failing to get appointments at primary care clinics as their untreated conditions worsened. Additionally, access to specialized care (e.g. physiotherapy, psychotherapy, nutrition) is problematic for PLPs because they have to consult in the public healthcare system, where wait times, according to our participants, are over a year. Indeed, HCP participants indicated that private medical insurance guarantees better access to care and faster recovery. Given their awareness of the negative consequences of wait times on patients’ conditions, HCPs expressed frustration in dealing with patients who do not have private insurance. As one HCP participant said:
The first question we ask is: ‘Do you have insurance?’ If the person says no, we’re sorry, because we know we’ll refer them to the public system, but it will take months. A person with a higher income would go to the private, and bing, bang, it will happen right away.
PLP participants also highlighted the difficulties of trying to get in touch with their family physician by telephone. Generally, they must first contact the secretary or nurse who, as intermediaries, may inadvertently distort messages.
Complexity of the healthcare system
Our participants considered healthcare system complexity to be an important barrier. The system, with its bureaucracy and administrative and legal regulations, offers rigid, standardized services and fails to meet the specific needs of PLP patients. Also, according to the HCP participants, it is difficult for patients to navigate the healthcare system and to understand the processes and procedures required. It can be difficult for patients to know where to consult for certain health problems (e.g. whether to make an appointment at a primary care clinic or go to the emergency room). It can also be difficult for patients to find their way to various departments in large healthcare facilities. HCPs suggested that different departments should be grouped together to eliminate confusion.
Participants also raised the issue of social assistance benefits. In Quebec, determining patients’ social assistance needs is under the purview of physicians. It is they who declare a patient fit or unfit for work, which influences the amount of benefits granted by the government. A person who is declared unfit for work receives $314 more per month than one who lives alone and is declared fit for work (effective January 1, 2013). One PLP participant said:
[For us] to get 900 [dollars] per month, physicians need to fill out forms. They don’t always want to do it because they’re afraid of being contested by the Social Assistance Program. The barrier is that the law requires physicians to decide whether you’ll have 600 or 900 [dollars] a month to live on.
PLPs who believe they are eligible for the additional disability amount need physicians to complete specific paperwork, but physicians may feel uncomfortable performing this task. Physicians find themselves in a dilemma because they are aware of the impact their decision has on the lives of PLPs. For our participants, this government policy has created inequities and stress for persons receiving social assistance as well as for doctors, who want better life conditions for their patients and a good care relationship. As expressed by a physician:
Just to say, I agree it’s pretty hellish. We’re filling out forms and entering things just to enter things. And even if I put those things in, it works for a while and then one day they [bureaucrats with the Social Assistance Program] don’t buy it anymore.... It worked, and suddenly it’s not working anymore, the check is cut, the person doesn’t even know. So we feel very badly, too.