Background
Methods
Aim, design, and setting of the study
Characteristics of participants
Data collection
Data analysis
Results
Sample characteristics
Identifier code | Disease | Age (years) | Sex | BHLS score (≤9, Low) | Nationality |
---|---|---|---|---|---|
LWPA1 | HF | > 80 | Woman | 5 | Other than French |
LMPA2 | MI | 30–39 | Man | 9 | French |
LMPA5 | MI | 70–80 | Man | 4 | French |
LWPA7 | MI | 40–49 | Woman | 9 | French |
LWPA8 | HF | 50–59 | Woman | 7 | French |
LMPA9 | HF | 40–49 | Man | 4 | French |
LMPA11 | HF | 60–70 | Man | 3 | Other than French |
LWPA12 | HF | > 80 | Woman | 8 | French |
LWPA13 | HF | 40–49 | Woman | 8 | French |
AMPA3 | MI | 40–49 | Man | 14 | French |
AMPA4 | MI | 60–70 | Man | 15 | French |
AMPA6 | HF | 60–70 | Man | 10 | French |
AMPA10 | HF | 60–70 | Man | 15 | French |
AWPA14 | HF | 70–80 | Woman | 12 | French |
AWPA15 | HF | > 80 | Woman | 12 | French |
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 |
Healthcare professionals’ knowledge regarding health literacy
Finally, others 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.“It is the ability of a patient or a healthy person to integrate, understand, and implement actions in order to get better.” WHP13
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.“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 HCP representations of low-HL patients were often associated with patients’ social characteristics (e.g. older age, social deprivation) and current psychological state.“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
Sometimes the patients’ ethnic background was considered by HCPs to be a proxy of their HL level.“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
Patients’ limited communication skills and reluctant attitudes regarding patient-provider interactions were also associated with low HL level."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
HCPs also estimated the HL level of their patients according to their behaviors or attitudes.“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
“It can be precisely in relation to a question that the person has already asked me 4 times, and to which I have already answered 4 times, so I say to myself that either the question is not the right one that he wants to ask me, or the answer is not the right one that he wants to hear.” WHP3
HCP-patient interactions: current practice perceived by HCPs and patients
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.“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
In order to appraise the effects of their adjustment to low HL level, 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.“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-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.“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
“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
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.“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...” LWPA7
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.“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.”LMPA9
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.“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.” LWPA7
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.“She [the nurse] comes once a week. She measures my blood pressure. [...] They [nurse and GP] have no clue [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.” AMPA10
“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.”LWPA7
Determinants for implementing HL-tailored healthcare professional-patient interactions
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.“There is also the investment of the person... The fact of thinking “well, I'll get “nothing more” [from this patient] anyway” WHP3
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.“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
Some HCPs (8/14) pointed out 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.“(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
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.“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
A similar vision was shared by the assistant nurse who pointed out a lack of physician interaction.“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
However, a supportive interaction was reported between different professions i.e. between residents and assistant nurses for communication with patients.“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
Other facilitators that HCPs reported were related to the patients’ side and how they are engaged in their care.“ they [assistant nurses] 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
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.“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
“ … 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
Patients also reported a lack of opportunity to clarify and deal with the information they received in depth.“Sometimes, I don't tell all my problems. I don't dare.” LWPA13
Patients reported the fact that nurses and assistant nurses were more present and engaging ininteractions than physicians during the hospitalization period. Patients were sometimes dissatisfied with not knowing the different roles and profession of the care team members.“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.” LMPA2
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.“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.” AMPA6
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.“At least I'm seeing someone, that's good. She measures my blood pressure, she weighs me...” AMPA6
“ They are the ones who manage the pillbox, they are the ones who manage everything” (talking about the nurses) Daughter of LWPA1