Abstract
BACKGROUND: Health literacy plays an important role in self-management of non-communicable diseases. To lay the groundwork for development of a patient education intervention for people with chronic obstructive pulmonary disease (COPD) or type 2 diabetes (T2D), this study investigates health literacy and self-management of people with COPD or T2D in Greenland. METHODS: Individual, semi-structured interviews about the experiences of living with COPD or T2D in Greenland were conducted at the National Hospital in Nuuk and at the four regional hospitals. Informants (n = 24) were selected by purposeful sampling. Interviews were audio-recorded. During the analyses, we applied the results using the qualitative methodology Interpretive Description, alongside Osborne's Health Literacy Questionnaire (HLQ) and the Precaution Adoption Process Model (PAPM) as theoretical frameworks. RESULTS: Three themes emerged: Gaining knowledge of one's disease; Understanding how to apply knowledge in everyday life, and Integrating knowledge to perform self-management. We created a model to illustrate how the three themes could be related to the seven stages in PAPM and with the nine health literacy domains in the HLQ. We found varying levels of knowledge about disease and health literacy among the informants. Furthermore, the informants' experiences were situated at different places in our model. Depending on their position in the model, they needed certain kinds of knowledge related to their disease, such as bio-medical knowledge or experience-based knowledge. Social support from society, peers, and health care professionals was essential at all places in the model. The ability to perform self-management required several skills and competences, which had to be supported to some extent to be able to change lifestyle behaviours and perform self-management. CONCLUSIONS: There was a great desire for more knowledge about COPD and T2D and for information in Greenlandic. The study showed considerable individual variation in knowledge about disease and health literacy, and involving the informants' network in management of the disease was found essential. The study's results can support the development of a culturally adapted patient education intervention. The intervention must be multifaceted, accessible to all citizens in Greenland, targeted to the individuals' situations, prioritised, and quality assured as an integrated part of overall care.