Marco Boonstra

114 Lack of support / conflict with others Network is making it difficult When the network is not understanding, it is hard to live healthy Changing relation with network With severe illness, the relation with others changes. Sharing emotions with others Patients do not always share their problems / emotions Not asking help Patients want to be strong and solve their own problems Problematic relation with HCP When patients fail to change behaviors it can lead to a damaged relationship with the HCP HCPs motivational strategies If HCPs choose a paternalistic or unsuitable strategy in consultations if can influence the patients willingness to change Taboos Some topics (like smoking) become a taboo to talk about Having other support Patients can sometimes rely on support from professionals from nursery homes, municipalities or volunteers. Lack of cooperation Patients do not always have a good cooperation with their network or HCPs and this is influencing self-management Supplementary file 3 continued Professional theme 1: Not recognizing HL problems Difficulties to identify LHL Awareness of patient's LHL Patient's use of jargon Consequences of LHL Health status and HL Educational level Hiding LHL from HCP Hygiene Inconsistent LHL definition Stereotyping HCPs are not always aware of the existence of HL problems HCPs estimate HL level based on the patients' use medical jargon Statements on potential consequences of LHL HCPs report how severe illness can cause literacy problems, for example due to stress or the amount of information HCPs use low education as measure for LHL, but state there are also higher educated patients with LHL Statements on strategies of patients to conceal their LHL HCPs identify LHL based on how patients take care of themselves Among HCPs there are different views on what LHL is There is a risk of stereotyping people with other cultural background or from low socio-economic status as LHL Comprehend barriers of people with LHL Amount of information Comprehending causal relations Main and subtopics Impact on and of daily life Cultural sensitivity Understanding healthy living Patients can't act (Lack of) empathy Ignorance Not intrinsically motivated Seeing rewards Risk behaviors Delaying decisions or let others decide HCPs do not always note struggles of patients with information HCPs are not always aware that patients struggle to comprehend causal relations between treatment and health, different diseases or lab results and being ill. Patients need HCPs to expliclitly mention the importance of topics to understand main and subtopics Comprehening difficulties to Incorporate treatmen into daily lifes or how life problems interfere with treatment Not taking culture into account as a factor in self-management Lots of patients think they live healthy while they really arent HCPs don't understand why patients won't act on advices HCPs can't always feel what patients are going through HCPs find patients ignorant about their body / treatment HCPs find patients unmotivated for treatment HCPs see being healthy as reward for self-management, patients do not always feel that way HCPs see patients acting risky and do not know how to prevent Somehow patients are not participating in decision making processes or let the HCP or social network decide Supplementary file 4: Final main- and subthemes, codes and descriptions derived from the analysis of the data collection among health care professionals

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