Living with a long-term condition and low health literacy skills: how a tactical use of health literacy skills and a personal social network can contribute to self-management

Abstract

This thesis posits that investigating and understanding the everyday process by which people living with a long-term condition self-manage can contribute to the debate about how people with long-term conditions can become empowered. A pragmatic, design-based study was undertaken to address the research question;
How do health literacy skills and a personal social network contribute to self-management when a person is living with a long term condition and a low level of health literacy skills?
Twenty-two people living with at least one long-term condition were interviewed on two occasions. The first interview followed a structured approach to understand the person’s health literacy skill level and the composition of their personal social network. The second semi-structured interview aimed to reveal further detail about the contribution of health literacy skills and a personal social network to the management of their condition. Framework analysis was applied to elicit themes and findings from the data.
Participants were recruited from community clubs, which provided them with opportunities to meet others, including others with the same conditions. A novel finding was that, to assist them with de-coding health information, participants living with a low level of health literacy skills required translators; people or technology that could de-code the information and relay the information in such a way that the participant could understand the information.
The constructs of affinity, utility and reliability were useful for understanding how participants perceived the social ties that were available to them and three tactics for negotiating social ties were identified.
The process of being part of a social group facilitated empowerment, where empowerment is viewed as a process of personal transformation enabling control over one’s management of health. The community clubs provided participants with the opportunity to view their own situation through the
eyes of others, which brought a new perspective to their difficulties and potential solutions.

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Identifiers

ORCID for Lyn Wilson: orcid.org/0000-0002-2157-5255

ORCID for Ruth Bartlett: orcid.org/0000-0002-3412-2300

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