Patient Perspectives to Inform a Health Literacy Educational Program: A Systematic Review and Thematic Synthesis of Qualitative Studies

Abstract

Patient-centred care is tailored to the needs of patients and is necessary for better health outcomes, especially for individuals with limited health literacy (LHL). However, its implementation remains challenging. The key to effectively address patient-centred care is to include perspectives of patients with LHL within the curricula of (future) healthcare providers (HCP). This systematic review aimed to explore and synthesize evidence on the needs, experiences and preferences of patients with LHL and to inform an existing educational framework. We searched three databases: PsychInfo, Medline and Cinahl, and extracted 798 articles. One-hundred and three articles met the inclusion criteria. After data extraction and thematic synthesis, key themes were identified. Patients with LHL and chronic diseases encounter multiple problems in the care process, which are often related to a lack of person-centeredness. Patient perspectives were categorized into four key themes: (1) Support system; (2) Patient self-management; (3) Capacities of HCPs; (4) Barriers in healthcare systems. “Cultural sensitivity” and “eHealth” were identified as recurring themes. A set of learning outcomes for (future) HCPs was developed based on our findings. The perspectives of patients with LHL provided valuable input for a comprehensive and person-centred educational framework that can enhance the relevance and quality of education for (future) HCPs, and contribute to better person-centred care for patients with LHL.

Health-Related Quality of Life Profiles in Dialyzed Patients With Varying Health Literacy. A Cross-Sectional Study on Slovak Haemodialyzed Population

“…An explanation of these findings may be that patients with lower HL have problems with understanding health information or are unable to handle complex tasks regarding their diet and medications or to communicate effectively with health care providers [ 30 ]. Subsequent failure in meeting the demands related to self-care, self-management [ 31 ], engagement in treatment or in cooperation with health care providers may result in a poorer HRQoL regarding their functional status, quality of social life with relevant others and also the engagement with health care providers, which may be crucial for effective treatment.…”

“…In addition, the responsiveness of the health care system to the needs of low HL patients may be improved [ 34 , 35 ]. This may include effective patient-centred care taking into account specific barriers and limitations connected with low HL [ 31 ].…”

Co-Creation of a Multi-Component Health Literacy Intervention Targeting Both Patients with Mild to Severe Chronic Kidney Disease and Health Care Professionals

“…For example, HL theory states it is important to focus on both the patient and HCP to improve self-management and health outcomes [45,46]. Additionally, the importance of teaching the HCPs competences to support patients with LHL is acknowledged [6,14,47]. However, other studies give results challenging our intervention.…”

“…Health literacy (HL) is 'the degree to which people are able to access, understand, appraise and communicate information to engage with the demands of different health contexts to promote and maintain good health across the life course' [5]. To improve the health outcomes of CKD patients with LHL, it is necessary to tailor healthcare to their needs [6].…”

Preferences Regarding Self-Management Intervention Outcomes of Dutch Chronically Ill Patients With Limited Health Literacy

“…Patients with limited health literacy often face additional difficulties during the management of their illness, as they may lack the right knowledge and information to make decisions about their health, or the skills to get or apply that information. Also, more than other patients, patients with limited health literacy often lack self-confidence to ask questions to a caregiver, and sometimes lack motivation to live healthier ( 22 – 24 ).…”