87 to express their needs and to make decisions that contradict with HCP’s advises, but have benefits for their life quality. This shows a need of more personcenteredness in health care, characterized by partnerships between patients, HCPs and family and active patient participation. HCPs reported barriers related to the health system and their competencies to recognize and support patients with LHL. They reported to take over responsibility sometimes. This confirms other studies, showing that HCPs overestimate patients[17] and adopt a more paternalistic style in consultations with patients with LHL[21]. HCPs in our study added interpretations. First, they said to doubt if they overwhelmed patients with medical information, but felt this was necessary to motivate them for self-management. Second, HCPs acknowledged their inability to apply strategies that are beneficial for LHL patients, such as visually attractive information or teach-back. Third, they shared worries about the risk behaviours of some patients. This indicates the need to improve HCPs’ competencies regarding effective strategies aiming at patients with LHL. Our study has several strengths. First, with our longitudinal design, we checked results from patients and HCPs and defined critical moments, heightening the credibility and validity of our results. This design also led to more openness about experiences in subsequent interviews. A second strength is our mixed methodology among various HCPs. During FGDs, sometimes all HCPs consented on certain experiences, but we also found contradictions. During interviews, we could address the more sensitive topics, such as personal doubts. A risk of the FGDs was that physicians and specialized nurses, from their hierarchic roles, led the discussion, but the interviewer could ensure an equal contribution from all HCPs. Additionally, our interpretation of the data may have been too generic. If so, specific profession related barriers in the care for patients with LHL might have been missed. Third, we believe our recruitment, with help of HCPs, is a strength. By offering strong guidance, such as oral explanation on the research, we managed to include a representative sample of LHL patients, who are often underrepresented in research[58,59]. A last strength is that the joint inclusion of the patient and a significant other added more detail on certain self-management barriers. This asked from the interviewer to direct questions towards the patient first, and then ask the other for additions.
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