48 Table 2.2 Study characteristics of qualitative studies and results within the health literacy – mediators - health outcomes pathway Study Characteristics Study Results Study CKD-pop (N) Country Design Measure (% LHL) Q Mechanism(s) Main results Ladin et al., 2017(72) 5(D) (31) USA Semistructured interviews - + Self-care management P-P interaction Social context Decision-making is influenced by the patients’ lack of knowledge or skills. Providers use too difficult words and providers’ knowledge superiority limits shared-decision making. Providers also lack competences and time to discuss end of life care preferences. Patients consider the support system too emotional to discuss end of life care and speaking to other patients helpful to facilitate decisionmaking. Van Dipten et al. 2018(73) 1-3 (25) Netherlands Semistructured interviews - +/- Self-care management P-P interaction Patients mention reasons for self-management problems, such as knowledge gaps and misconceptions, absence of symptoms, reduced sense of seriousness, and problems with linking lifestyle to disease risks. Provider attitudes in earlier stages of CKD create this reduced sense of seriousness. Patients also feel providers lack time and energy to tailor information to their needs and to explain details. Sakraida et al., 2009(71) 3 (6) USA Focus group discussion - +/- Self-care management P-P interaction Patients mention knowledge gaps as barrier to effective self-management, and the need for encouraging messages to improve self-management. Patients mention to searching for information online but being uncertain about quality and source of information. Patients mention providers as their main source of information. They prefer face-to-face contact with simple information and perceive their own lack of assertiveness and provider-oriented care plans as barriers in consultations. Muscat et al. 2018(74) 5(D) (35) Australia Semistructured interviews - - Self-care management P-P interaction Social context Patients believe their lack of awareness and knowledge, paternalistic styles of providers and time are barriers in decision-making. Patients often expect professionals to decide. Patients regard information as important to know what to expect, but not necessarily to inform decision-making. They also mention that communication with general practitioners is easier than with specialists. Patients also mention that family influences the process of decision-making CKD-pop = population of interest by CKD-stage (1,2,3,4 or 5), when applicable specified for transplant (T) or dialysis (D). N= number of participants in study 1 = functional HL measure, 2 = communicative HL measure, 3 = critical HL measure Q = study quality: + high quality study, +/- moderate quality study and - low quality study, based on quality assessment.
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