The personal impact of lower levels of health literacy on living with a musculoskeletal disease: a qualitative interview study

Abstract

Introduction: Health literacy includes the cognitive and social skills which determine the motivation and ability of individuals to access, understand and use information to promote good health. People with lower health literacy do less well in the NHS and are less likely to adopt health self-management strategies than people with higher levels of health literacy. There is no published research exploring the impact that lower health literacy levels have on individuals managing the consequences of musculoskeletal (MSK) disease. This study explored the impact of lower health literacy levels for people living with a MSK disease

Methods: Key contacts identified potential participants from Rheumatology clinics, GP surgeries, Colleges and community groups. Participants over 18 years, with a MSK disease and either thought to have lower health literacy or self-identifying as having lower health literacy were included. Participants completed a Rapid Estimate of Adult Literacy in Medicine (REALM) and demographic questionnaire. Semi-structured interviews were audio-recorded, transcribed and analysed thematically.

Findings: Nine women and nine men aged 29-82 years participated. This group were predominantly white British, and most completed high school education. Ten participants had a lower level of literacy (i.e. scored < 6 on REALM). Four themes emerged; 1) Experiencing low health literacy as a service user; capturing the range of service users’ responses to the challenge of lower health literacy, ranging from ‘hiding’ to open disclosure 2) The impact on living and working; where people revealed a range of understanding about their condition and frequently recounted being told by health professionals nothing could be done for their MSK pain. 3) Engaging with MSK education; where participants identified family, friends and neighbours as the most useful and frequent information resources. 4) Strategies for self management; here people identified “going over words” and using practical help. In keeping with participants’ recollections of hearing that ‘nothing could be done’ about their condition, they generally seemed unaware of what self-management was, or how it could assist them.

Discussion: People with lower levels of health literacy and MSK disease manage complex social and co-morbid medical conditions. Information provided by health professionals is not always useful and many relied on their social networks for support. People recalled that often they had been told that there was nothing that could help their pain or arthritis; it couldn't be cured. This impacted negatively on the incentive for people with lower health literacy to recognise and engage with self-management approaches. To better support people with lower health literacy and MSK conditions to engage with self-management strategies, all agencies need to emphasise the potential benefits and use easily accessible clear messages to communicate these.

More information

Identifiers

ORCID for Jo Adams: orcid.org/0000-0003-1765-7060

Catalogue record

Export record

Altmetrics