112 HCPs approach CKD discussed insufficiently Especially in GPs CKD is discussed marginally in consultations Overestimation HCPs explain too many topics/overestimate patients’ knowledge Providing / using additional information HCPs do not always use or provide additional visual, written or digital information during consultations Wrong information Different HCP’s advises can be contradictory / sometimes false Medical information first HCPs put much emphasize on lab values and medication while lifestyle receives less attention Clarifying understanding HCPs do not consitently check if patients understood Being too generic An advice is often generic: ‘eat less salt’ instead of precise and actionable: ‘you can have 6 grams salt a day’ and ‘cheese is bad’ Personnel changes Patients in secondary care often see many HCPs which can lead to repetitive or contradictory information Consultation time Time in consultations is too short te be informed Patient theme 3: Not taking a front-seat role Resignation Accepting illness Patients do not accept being ill and the fact they need treatment Age comes with flaws Patients perceive having health problems as normal and don't think self-management will help much Adaptability Patients struggle to incorporate self-management into their lifes and give up. Not following advices Patients do not follow up on HCP's advises Beneficial for wel-being Patients keep unhealthy habits because they prefer living without restrictions over strict adherence Feasibility Advises (for multiple diseases) are simply too much to follow-up Expected disease course Patients think CKD is unstoppable / perfect adherence useless Leaving responsibility with others Doctor in the lead Patient: ‘The HCP monitors my kidneys. I can not do much myself’ Hierarchy Patients do not dare to speak up to HCPs because of hierarchy Network is in the lead The partner or relatives are in the lead in medication / diet etc. Network is making it difficult When the network is not understanding, it is hard to live healthy Usefulness of medication In general, medication is considered useful, but not always Usefulness of lifetyle The positive effect of lifestyle on kidneys is questioned Role of spirituality / faith Patients lay their destiny in the hands of Gods (and may feel less urgency to take control into their own hands). Character trait The patients character influences their ability to self-manage Supplementary file 3 continued
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