Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study

Abstract

The growing body of information-seeking and decision-making literature in motor neurone disease (MND) has not yet explored the impact of health literacy. Health literacy relates to the skills people have to access, understand, and use health information and is influenced by motivation to engage with healthcare. We aimed to better understand how people affected by MND engage in healthcare by examining longitudinal interview data using the construct of health literacy. Semi-structured interviews were conducted with 19 persons living with MND and 15 carers recruited from a specialist MND clinic using maximum variation sampling. Transcripts were deductively coded using a framework of health literacy behaviours. The analysis used a matrix-based approach for thematic analysis of longitudinal data. People living with MND and carers sought nuanced information dependent on their priorities and attitudes. Information uptake was influenced by perceived relevancy and changed over time. Time allowed opportunity to reflect on and understand the significance of information provided. The findings indicate that persons living with MND and carers benefit when information and consultations are adapted to meet their communication needs. The results highlight the potential benefits of gaining an early understanding of and accommodating the communication needs, personal preferences, and emotional readiness for information for persons living with MND and their carers.

What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project

“…This suggests that HCPs should facilitate the integration of care between medical and community settings. This may include referral to ALS health charities, 27 and/or facilitating connections between multidisciplinary clinics, community health and social care systems, 44–46 and palliative care 11,47–49 …”

“…Communication agreements should be revisited and updated in response to patient needs, disease progression, and/or the cyclic decision‐making experienced by PwALS 78 . A formal communication agreement animates recommendations for individualized communication, 11,15,17,46 and a systematic, structured approach to communication 79 …”

“…Communication agreements should guide clinical encounters. They will help HCPs understand and accommodate individual dispositions, heterogeneous experiences, and emotional readiness for new and/or difficult discussions 11,46,48,80 . Attention to communication as a topic at each clinical encounter will foster regular discussion of information needs and promote timely discussions of challenging topics, including symptom management and advance care 49,71,81,82 .…”

“…[41][42][43] This suggests that HCPs should facilitate the integration of care between medical and community settings. This may include referral to ALS health charities, 27 and/or facilitating connections between multidisciplinary clinics, community health and social care systems, [44][45][46] and palliative care. 11,[47][48][49] Our analysis also draws attention to how information is communicated, 50 supporting empathic, compassionate, and honest communication.…”

The impact of communication on healthcare involvement for people living with motor neurone disease and their carers: A longitudinal qualitative study

“…The topic guides (see the additional supporting information) relate to the broader study which explored the decisions that people do, or do not, make about interventions, home modifications, advance care planning, etc., and how and with whom they make those decisions. Study results include how plwMND and carers experience healthcare decision‐making (Paynter et al., 2020), and information seeking and healthcare engagement over time (Paynter et al., under review).…”