- freely available
Int. J. Environ. Res. Public Health 2019, 16(21), 4300; https://doi.org/10.3390/ijerph16214300
2.1. Study Design
2.2. Search Strategy
2.3. Selection of Articles
- They provided information on perspectives or experiences related to healthcare of adult participants (18+) with a chronic disease and LHL, described with qualitative research. Participants of all studies will be hereinafter referred to as ‘patients’. We identified patients with LHL as persons who have difficulty in accessing and understanding health information, and in appraising and applying such information in making decisions related to health and healthcare .
- Studies were conducted in developed countries (USA, Europe, New Zealand, or Australia).
- They were written in English, Italian, German or Dutch, as these languages were spoken within the research team.
- Experiences of healthy persons with LHL in the general population were described (e.g., articles on screening in the general population).
- They focused on HL research among children or adolescents; articles including participants with a large age range were not included if they did not describe results for adult patients specifically.
- They were research related articles (e.g., articles describing how persons with LHL struggle with informed consent within research or how HL impacts participation in research).
- They focused on perspectives of HCPs on patients with LHL.
2.4. Data-Extraction and Analysis (Phase I)
- “Descriptives”, such as country of study, language of the article, publication year, sample size, setting, study design, objectives or research questions, methods, topic area, target population, HL indicator (if used), type and stage of chronic disease, and type of HCPs (if applicable).
- “Content”, such as key concepts/themes identified, main experiences/ideas of patients, facilitating factors, barriers, quotations for illustration of patients and others, recommendations for healthcare.
2.5. Data-Extraction and Analysis (Phase II)
- Support system: defined as the social network of communities, families or peers supporting the patient with LHL.
- Patient empowerment: defined as the inherent capacity to be responsible for maintaining and promoting one’s own health.
- Patient–provider interaction: defined as verbal and non-verbal communication exchanges between HCPs and patients with LHL, as well as everything that might influence the interaction between the patient and the HCP (e.g., perceived time, respect).
- Leadership and collaboration: defined as competencies and actions initiated by a HCP in order to accommodate the patient with LHL (e.g., putting HL on the agenda, interaction between HCPs, and coordination of care).
- Communication barriers: defined as obstacles within the healthcare system that appear to be a barrier for patients with LHL (e.g., written materials, hospital navigation, front desks, hospital websites).
2.6. Development of Learning Outcomes
3.3. Support System
3.3.1. Family and Friends
3.3.2. Peer Contact
3.3.3. Religion and Spirituality
3.3.4. Healthcare Provider Support
3.4. Patient Self-Management
3.4.1. Autonomy and Control
3.4.2. Gaining Knowledge
3.5. HCPs Interpersonal Capacities
3.5.1. Respect and Understanding
3.5.2. Comprehensible Communication Style
3.5.3. Decision Making
3.6. Barriers in the Healthcare System
3.6.1. Comprehensibility of Medical Documents and Information
3.6.2. Availability and Accessibility of Health Care Providers
3.6.3. Collaboration among Health Sectors and HCPs
3.7. Cultural Sensitivity
Conflicts of Interest
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|More than one country||3||2.9|
|Interviews and focus groups||7||6.8|
|Type of chronic disease of the participants included in the study|
|Cardiovascular diseases (including stroke, hypercholesterolemia, hypertension, peripheral artery disease)||15||15.5|
|Chronic kidney disease||8||8.2|
|Musculosketal diseases (Arthritis/rheumatism; fibromyalgia; osteoporosis/osteopenia)||7||7.2|
|Multiple chronic diseases within one study||7||7.2|
|Gastroenterological diseases (Barrett’s columnar lined esophagus (CLO); Inflammatory bowel disease; Hepatitis B)||6||6.1|
|Respiratory disease (Asthma/COPD)||6||6.1|
|Other (chronic pain, disorders of the hematopoietic system)||4||4.1|
|Mental health (depression, cognitive impairment)||2||2.1|
|Urinary incontinence (overactive bladder symptoms, pelvic organ prolapse/urinary incontinence)||2||2.1|
|Theme||Frequency of Occurrence (n)|
|Health care providers’ interpersonal capacities||62|
|Barriers in healthcare systems||34|
|Themes and Sub-Themes||Example Quotations||Articles 1|
|Family and Friends||“It helps if you have someone eating along with you saying don’t eat this or don’t eat that. My sister encourages me to buy healthy food like I buy wheat noodles instead of regular noodles.” ||[22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48]|
|Peer contact||“[..] They [other patients] can better inform you that as far as, versus a health provider that does not have the disease; they know how to treat the disease, but living with it is, is, you know, a different story.” ||[27,29,38,40,46,49,50,51,52,53,54,55,56,57,58]|
|Religion and Spirituality||“So anyway, I went to the doctor […] we sat and we talked […] with all of the information that I received. Then I just thought. I said, “Listen, Alma, you’re a big girl, and these things happen.” I just began talking to myself, and I’m a believer in God. I just said I’m gonna put it in his hands. Whatever happens, whatever the diagnosis, if I have to have the mastectomy or whatever has to be done, I’m just gonna go ahead and have it done […] take your burden to the Lord and leave it there. I just really believe that God hears, and he answers prayers.” ||[25,32,40]|
|Healthcare provider support||“I like the provider when he or she is concerned with me and the results and didn’t just turn their back and say “Oh, this is serious” and shut up.” ||[22,23,26,35,39,40,41,48,53,57,59,60,61,62]|
|Autonomy and control||“It took me a long time to be the manager of my own health system. I expected doctors to kind of manage my life for me. It took me a long time to realize that no, I’m in charge of this. The doctors that work for me are a team, and I manage that team.” ||[25,36,41,48,54,60,64,65,66,67,68,69,70,71,72]|
|Gaining knowledge||“The only way I’m able to cope is to have knowledge, which [doctors] think, if you don’t know, that’s how you’re going to be able to cope.” ||[22,25,30,31,34,35,37,38,44,46,48,52,54,55,56,71,73,74,75,76,77,78,79,80,81,82,83,84,85]|
|Motivators||“The group leader has told us do it [control our blood sugar levels] for your [own] health and do it for your son. I don’t want my child to have this [diabetes]. I feel bad about having diabetes, having to take medications, worrying about what [to] eat . . . and sometimes get [ting] upset [because you don’t want your child to have diabetes]. I want to do whatever I can do to need less medication. We have to do our part.” ||[23,35,61,64,68,70,75,78,86,87,88,89,90,91,92,93]|
|Monitoring||“… I know I’m working with someone that has access to my information and my dietary habits and what not, then that will mean that I’m going to try and stay within my dietary, good dietary, habits” ||[32,43,53,55,57,70,87,89]|
|Healthcare providers’ interpersonal capacities|
|Showing respect and understanding||“I didn’t feel like they were really interested. They were just talking… I just want my doctor to recognize who I am.. and they say: well let’s see how you doing.” |
“The doctor understands me, devotes his time and listens to me. The patient also needs this aspect: to develop trust, to have a human relationship with the physician.” 
“He [oncologist] knew me by my name, my face. When I came in, it was like they treated you like you were a person and not just cattle coming through. He used to call me his most delicate patient.” 
|Comprehensible communication||“[The doctor] was rattling off all these things that I needed to do…and my brain just shuts off. It was overload.” |
“It’s the ability to explain in simple terms and not be abstruse. To say look, on the list here it says you’re to have 15 g of carbohydrates. Now that’s a slice of bread or that’s a medium sized potato.” 
“I really didn’t pick up too much. I just feel that sometimes doctors go in and they’re using all these words and stuff. No. Tell me layman’s terms, because I’m not dumb, but something like that I don’t really understand.” 
|Enabling shared decision-making||“I know what each one of those pills are, what they’re for. I know that because I’m involved with my treatment, you know? Me and the doctor, we actually sit down and talk about me. I ask questions, you know? I’ve learned a lot. I mean, I’ve learned so much, really.” ||[34,37,38,43,56,60,62,65,66,70,73,76,79,83,91,100,101]|
|Barriers in health care systems|
|Comprehensibility of medical documents and information||“There’s too much jargon (in health leaflets) they’re not written for lay people”. ||[26,30,33,36,46,50,55,58,66,92,100,110,111,112,113,114,115,116,117]|
|Availability and accessibility of healthcare providers||“[My] doctor would [not be able to see me at] ‘that particular time of day,’ so [I] just went on to emergency.” ||[31,33,36,47,52,61,75,87,88]|
|Collaboration among health sectors and healthcare providers||“I had the pharmacist at the hospital phone me to double check I was having blood tests regularly and ask if everything had been explained to me and they double checked.” |
“I think it would help more if we saw the same person every time, if possible. Because you go in there and you think, well, do they know all about me?” 
|“…If you take the herbals you must put the medicines aside. If you take the medicines, you must leave the herbals aside.” |
“I can say majority (sic) of the printed information is in English and the medical terminologies are very difficult for me to understand.” 
|“I have relied on the Internet in the sense of making contact with other patients with the same disease in the world” |
“What I love…was that it told me how much to have and I didn’t overeat. The number of times that I overeat from hypos is ridiculous; it would be 99 % of times.” 
“About the email, the one thing that I really like is that the doctor has always got somebody waiting for him, so the nurses are the ones that were logging in to the email and doing the routing of the-and letting him know what’s going on, what the-and I really like that ! That’s the sort of addresses the issue that you brought up.” 
|Promoting person-centred care||Students should be able to…|
demonstrate a positive attitude towards person-centeredness and person-centred behaviours.
… provide an overview of different communication goals and understand what these mean for the patient and the care process.
… apply the concept of person-centred care and how to integrate this into practice.
|Support system||Students should be able to…|
… explain the relevance, benefits, and potential negative impact of the involvement of family members, friends, peers and healthcare providers (support system) in the patient’s care process.
… demonstrate the ability to identify the patient’s needs and preferences for the involvement of their support system.
… demonstrate the ability to involve family members and friends based on individual patient’s needs and preferences.
…recognize when a patient is facing a lack of support due to life circumstances.
…reflect on their own support practices in order to improve these in patient care.
|Patient self-management||Students should be able to…|
… provide patients with information (sources) that are understandable, reliable, relevant, accessible, and practically applicable.
… appraise monitoring systems and positive accountability to promote patient-related outcomes (e.g., motivation, self-management skills).
|Healthcare providers’ interpersonal capacities||Students should be able to…|
… demonstrate the ability to develop a positive provider-patient relationship based on mutual understanding and trust.
… appraise the importance of comprehensible and comprehensive information.
… translate medical information into easily and understandable information for patients to help them explore preferences and make decisions.
… demonstrate the ability to use patients’ needs and preferences as the frame of reference for information exchange and making healthcare decisions.
… recognize the influence of discontinuity of care at patient level.
|Barriers in health care systems||Students should be able to…|
… explain the relevance of comprehensible written information for patients’ knowledge, motivation, participation and other outcomes.
… understand the added value of information material such as images and videos to increase patient understanding and include this in their consultations.
… initiate and support developments to enhance the comprehensibility of information provision in their health organization.
… judge the importance to collaborate and communicate with fellow providers to ensure continuity of care.
… demonstrate the ability to support patients struggling with the healthcare system and assist them in navigating it.
|Cultural sensitivity||Students should be able to…|
… understand cultural health beliefs and norms, family values and decision-making, and language,
… apply their knowledge of cultural aspects in the care process to by tailoring their communication to patients’ needs and preferences.
… be aware of the beliefs and norms of the most prominent cultures/ethnicities in their work area.
… communicate in a culturally sensitive way taking into account patients’ needs and preferences, e.g., by providing written information sources in their own native language, or facilitate the presence of an interpreter during the consultations.
|eHealth||Students should be able to…|
… value the benefits of eHealth as an additional source of information and support.
… facilitate the use of eHealth and integrate this in prevention and care.
… provide patients with relevant information about eHealth tools beneficial for their specific care process.
… value the latest developments on eHealth.
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