Sample characteristics
We interviewed 15 patients and 14 HCPs (Table 1 and Table 2): 5 medical doctors/residents, 6 nurses, and 3 assistant nurses. Among the 14 HCPs interviewed, 9 (64%) were women, 10 (71%) were aged under 50 years old, and the mean (range) duration of interviews was 42 (24-57) minutes. Among the 15 patients interviewed, 10 (67%) had HF and 5 (33%) had an MI history, 8 (53%) were men, 9 (60%) had a low HL level, and their mean (range) age was 63 (39-84) years (Table 1). The mean (range) duration of interviews was 30 (18–37) minutes.
Table 1
Patients’ characteristics
Identifier code | Disease | Age (years) | Sex | BHLS score (≤9 Low) | Nationality |
WPA1 | HF | 81 | Woman | 5 | Other than French |
MPA2 | MI | 39 | Man | 9 | French |
MPA5 | MI | 70 | Man | 4 | French |
WPA7 | MI | 49 | Woman | 9 | French |
WPA8 | HF | 59 | Woman | 7 | French |
MPA9 | HF | 41 | Man | 4 | French |
MPA11 | HF | 60 | Man | 3 | Other than French |
WPA12 | HF | 83 | Woman | 8 | French |
WPA13 | HF | 45 | Woman | 8 | French |
MPA3 | MI | 42 | Man | 14 | French |
MPA4 | MI | 63 | Man | 15 | French |
MPA6 | HF | 69 | Man | 10 | French |
MPA10 | HF | 60 | Man | 15 | French |
WPA14 | HF | 80 | Woman | 12 | French |
WPA15 | HF | 84 | Woman | 12 | French |
Abbreviations: HF: heart failure; MI: myocardial infraction; W: woman; M: man; PA; patient; BHLS, brief health literacy screening. |
Table 2
Identifier code | Sex | Age group (in years) | Profession | Experience in the profession (in years) |
MHP1 | Man | 50-59 | Medical doctor | 20 |
MHP2 | Man | 60-69 | Medical doctor | 39 |
WHP3 | Woman | 50-59 | Nurse | 23 |
WHP4 | Woman | 30-39 | Nurse | 10 |
WHP5 | Woman | 40-49 | Nurse | 2 |
MHP6 | Man | 30-39 | Medical doctor | 2 |
WHP7 | Woman | 50-59 | Nurse | 32 |
MHP8 | Man | 30-39 | Medical doctor | 4 |
WHP9 | Woman | 30- 39 | Nurse | 10 |
WHP10 | Woman | 30-39 | Assistant nurse | 10 |
WHP11 | Woman | 20- 29 | Resident | 4 |
WHP12 | Woman | 30-39 | Assistant nurse | 19 |
WHP13 | Woman | 30-39 | Assistant nurse | 20 |
MHP14 | Man | 40-49 | Nurse | 27 |
Abbreviations: M: man; W: woman; HPs: healthcare professionals. |
Healthcare Professionals’ Knowledge Regarding Health Literacy
Among HCPs, the level of knowledge about HL was heterogeneous, as 5/14 HCPs were not able to provide a definition of HL. Other HCPs gave partial definitions that suggested links to one or more of Nutbeam et al.’s (31) dimensions of HL (functional, interactive, and critical). Most HCPs defined HL through its interactive dimension e.g. skills that can be used to extract information and applied to different circumstances and forms of communication.
“It is the ability of a patient or a healthy person to integrate, understand, and implement actions in order to get better.” WHP13
Finally, other described HL through its critical dimension i.e. skills that allow patients to critically analyze information and use it to exert a greater control on their life.
“Literacy goes way beyond simple health literacy [you have to know what to shop for, how to read on food elements the salt composition...] you still have to know how to read, search for the information, and know what to do with it...” MHP2
The only HCPs who provided an extensive integrative definition of HL were a nurse who was trained in therapeutic patient education and studied HL in this context, and her colleagues with whom she had shared her knowledge about HL.
« it is the capacity of a person to first understand, to be able to read and to put into practice the things that we are going to be able to provide, the advice and recommendations related to health... and also how one can search for information, whether one is able to do so or not... " WHP3
The HCPs representations of low-HL patients were often associated with patients’ social characteristics (e.g. older age, social deprivation) and current psychological state of the latter.
« It’s not only about elderly patients, it’s also about patients who are in great social precariousness, who do not have all the means [...] there are depressed [...]. And these patients are among the people with low literacy skills. » WHP13
Sometimes the patients’ ethnic background was considered by HCPs to be a proxy of the HL level of their patients.
"There is another population there... I'm going to talk about the Mediterranean people, Spain, Italy, and Portugal, but we also have a lot of North African patients who are alone here, and these North African patients have very big problems of understanding and putting into practice...." MHP1
Limited patients’ communication skills and reluctant attitudes in patient-provider interactions were also associated with low HL.
“he doesn't communicate, he doesn't answer questions, or he may be aggressive and always in denial. [...] Some people don't want to talk. A low level of literacy?”WHP13
HCPs also estimates HL level of their patients according to their behaviors or attitudes.
“when we give information, we see if it is not understood. Then, there are those who ask questions in order to avoid relapses, and those for whom treatment administration will not be optimal afterwards, they do not follow the instructions.” WHP13
HCP-patient interactions: current practice perceived by HCPs and patients
HCPs perspective
HCPs reported they dealt with low-HL patients by adapting their behaviors when recognizing difficulties in patients. Most interviewed HCPs (12/14) declared that they changed their behaviors when communicating with patients for whom the difficulties are apparent.
They stated that they provided patients with simplified explanations, using layman’s language and/or illustrations.
"Indeed, we're going to use simpler terms it's obvious... and then uh... we're going to ... so I'm simplifying... [...] or I'm going to explain to them what this term means, in a visual way, I try to put into images what I'm explaining. I sometimes have, we have teaching aids, we have a little plastic heart.” WHP5
They also mentioned the importance of time: taking the time to let the patient ask questions and above all, taking the time to re-explain.
"Well, we take maybe more time with him [...] to explain things at greater length, maybe, repeat things to him because he hasn't understood everything." WHP10
In order to appraise the effects of their adjustment to low HL, HCPs said they observed patients' health behaviors over time. They got more confident in their effectiveness if they found that after their visit, patients took their treatment better or attended more regularly medical follow-up visits.
"I think it's really from the beginning, the first time you take the patients in charge, that you have to get into that sphere, to measure their literacy, in order to really have an impact. Afterwards, if they don't hear it from the start, they will actually come back [to the hospital]... " WHP13
In-hospital HCPs also emphasized that their goal was that patients get enough information and understanding to ensure their safety and self-care once returned home.
"what is important is that at the end of the hospital stay, the patient knows about the disease, the treatment, knows what to take, how to take it, how to adapt to the treatments" MHP1
Patients’ perspective
Despite the efforts described above by hospital HCPs to adapt their communication, patients reported hospital discharge as a challenging time. Some patients (4/15) said information was missing or that explanations about treatment were not sufficient.
“I need someone to explain to me, to tell me, there you go, you've done that, the treatment corresponds to what you have, you are going to be fine. You don't just let people go out like that, without...” WPA7
They deplored having received information only from junior physicians, and 3/15 patients stated that they had not seen any senior physician to prepare their discharge. Conversely 2/15 said they received too much information or advice and they experienced it as a mental burden.
“They put too much information in my head, you have to be rigorous, you have to take your treatment properly, you should absolutely not smoke, you shouldn’t use illicit products, drugs, all that, I don't use drugs. Be careful; eat a balanced diet, not too rich.”MPA9
Regarding information transmission between in-hospital and community doctors, most of the time, the information given to patients was consistent between hospital and general practitioners. However, 5/15 patients stated their general practitioner did not get information about their hospital stay from the hospital staff.
“I went to see my general practitioner yesterday, he was not aware of it, he told me, I had no feedback about what happened to you. [...] I didn't get the scanner, the hospitalization; I got nothing, no information.” WPA7
In addition, relationships between patients and community HCPs did not always appear to be good and could constitute an additional barrier to the transmission of information.
“[NB The nurse] She comes once a week. She measures my blood pressure. [...] They have no clue [nurse and GP about the HF follow up process]. My GP, it's the same thing. The first time, I went to see him about it, the second time, I said, it's not even worth it. He doesn't even seem to care at all. I thought they didn't know enough about it.” MPA10
Finally, some patients (4/15) expressed a need for more tailored information beyond the general information provided. For instance, they requested referral to other professionals depending on their needs, for follow-up by a psychologist, a tobacco specialist, or for obtaining daily help.
“I would have liked to see someone who's accredited, a psychologist, so that I could talk about it, about what I've been through, what I've had. Well, no, I didn't receive any guidance.”WPA7
Determinants For Implementing Hl-tailored Healthcare Professional-patient Interactions
Barriers and facilitators perceived by HCPs
Adapting one's behavior to patients experiencing comprehension difficulties requires adaptation and training. Even if most of the hospital HCPs interviewed were considering themselves as taking the necessary time to do so, we identified four types of barriers that may influence HL-tailored communication practices: beliefs of HCPs, the place of caregivers, inappropriate documentation, and organization (lack of time, continuity of care).
Individual HCPs belief about patients’ competencies are directly associated with a feeling of low self-efficacy:
“There is also the investment of the person... The fact of thinking "well, I'll get "nothing more" [from this patient] anyway" WHP3
We also identified challenges related to informal caregivers. Some patients' relatives took an overwhelming place in the patient-provider relationship and communication, preventing the professional from communicating directly with the patient, especially in case patients did not speak French.
“I don't like having to go through someone else, it's a third party, it's an intermediary and uh the biggest problem is that, from time to time, I know a little bit of the language, and well the interpreter will change what I said.”MHP2
The available documentation that HCPs may use to support their statement or to convey information to patients did not always fit the needs of patients. It may be at the same time insufficient and too detailed.
“(we need) simple things, otherwise they don't read long blocks, some read but others tell us frankly I didn't read, or else they prefer an explanation as well.” WHP4
Some HCPs pointed out (8/14) a significant lack of time or a lack of staff at the hospital to properly inform and educate patients before discharge. They also pointed out challenges in care continuity with a lack of post-hospital follow-up and a lack of communication between the medico-social and hospital domains that act like silos.
“I would need an outside network that provides us with what we don't know how to do in the hospital, which is to go into patients’ homes, which is to develop relationships with nurses in private practice, which is to have a coordinator in the network, or support platforms" WHP7
These barriers were described differently depending on the profession of HCPs. Nurses put forward the lack of communication and the informal transfer of tasks from the physician to the nurse as challenging in daily practice.
"nurses often find themselves in the situation where they have to rephrase the diagnosis [...] and then the patient bursts into tears because they knew how to say the words and the patient understood, and actually for the patient, it's as if it was the first announcement, and then they’re in trouble because normally it's the physician who has to make the announcement." WHP7
A similar vision was shared by the assistant nurse who pointed out a lack of physician interaction.
"Because often when we go behind them [doctors] they [Patients] say "they gave me the prescription but I didn't understand anything" (laughs). I think they don't bother the doctors because they think that the doctors don't have time but we may have more time I think. They must think like that the patients. (…) Because often behind the nurse re-explains the treatments.” WHP10
However, a supportive interaction was reported between different professions i.e. between residents and assistant nurses for communication withpatients.
"[NB assistant nurses], they talk to each other to see how they can make things easier. I've had quite a few assistant nurses who have helped me explain to patients what their pathology is, what treatment we're going to give them, and everything." WHP11
Other facilitators that HCPs reported were related to the patients’ side and how they are engaged in their care.
“If the patient has, let’s say, understood, and finally he/she becomes an actor ... necessarily he/she will take better care of himself/herself but ... it's like for everything else, one must understand why do things …” MHP8
Facilitators could also relate to community care, which was considered as more individually adapted to patients’ needs. For instance, interviewees declared that home care nurses and community pharmacists might take more time with the patient, in particular to explain the prescriptions.
“… the second help that we will be able to have outside the hospital it will be the pharmacist, the one who will deliver the medicines to the patients who will show him the boxes, who will show him the tablets who will tell him how he must take them....”MHP1
Barriers and facilitators perceived by patients
The main barriers to a satisfying hospital discharge for patients were the lack of follow-up and continuity of care at home. Some patients reported a need for support once they returned home (6/14), while others did not declare any specific needs or issues. However, problems related to information and communication were reported. Some patients found it difficult to ask questions to their physician because of fear of judgment, or fear of disturbing (7/14).
“Sometimes, I don't tell all my problems. I don't dare.” WPA13
Patients also reported a lack of opportunity to clarify and deal with the information they received in depth.
“I had a very important question to ask them, they inserted me a stent and I wanted to know if the rest of the arteries were damaged or not. That's something I don't know anything about. So I would have liked to know if the rest of the arteries were okay. If I've got one that's got a stent and I've got one next to it that's damaged, it would be nice to know.” MPA2
Patients reported the fact that nurses and assistant nurses were more present and engaged in the interaction than physicians during the hospitalization period. Patients were sometimes dissatisfied with not knowing the different roles and profession of the care team members.
“When I was there, I saw mostly residents and people, and by the way I got angry because I didn't have any communication about what was going on ... I knew what I wanted to know when I saw the physician between two doors, he talked to me in the hallway.” MPA6
Thus, nurses and assistant nurses were a source of support for patients, in addition to informal caregivers (family, relatives) who were identified by patients as being their main social support.
The available discharge programs, although very scarce, were appreciated by the few interviewed patients who were included in such programs. For instance, “PRADO” (the program developed by the French public health insurance system that allows patients to be monitored at home for 2 months after hospitalization) was reported to provide more regular follow-up and social support.
“At least I'm seeing someone, that's good. She measures my blood pressure, she weighs me...” MPA6
Contrary to the sometimes overwhelming presence of caregivers mentioned by HCPs, patients perceived them differently as very helpful. Patients used material support tools to improve their self-management capabilities, such as pillboxes to organize their treatments, and caregivers or community nurses often managed these for patients who needed it.
“ They are the ones who manage the pillbox, they are the ones who manage everything” (talking about the nurses) Daughter of WPA1
Summary of findings
We grouped the identified barriers and facilitators involved in the management of CVD for low-HL patients using the “Ishikawa” Fishbone diagram (29) (figure 1) into three levels: individual level, HCP-patient interaction level, and organizational level (Appendix 3). Based on this structure, and guided by the HL universal precaution (AHRQ (32)) and the expert recommendations for implementing change (ERIC (30)), we proposed implementation strategies.