Lay summary by Dr Sean White, reviewed by Dr Scott Allen and by a lay MND panel
Background:
Health literacy is broader than simply a persons ability to read and write. Health literacy refers to the ability of a person to access, understand and use information to inform their decisions they make about their care and treatment options.
Why is the study important?
The aim of this study was to understand how people with MND engaged with information and how that influenced involvement in their healthcare.
What did the authors do and how did they do it?
The researcher aimed to interview people with MND and their caregivers three times over a 14-month period. 19 people with MND and 15 caregivers took part in the study. The interview transcripts were analysed and presented in themes as described below.
What are the results?
Accessing information
People with MND seek information from a range of sources including the internet and the experience of other people. Reasons for not seeking information included that they felt it was futile; the negativity of the information available; and a reluctance to look into the future.
Understanding information
Despite participants finding disease related information soon after diagnosis confronting, in the later interviews participants reflected that this was necessary to allow them to plan their care. Participants had differing preferences with regards the complexity of information they wanted.
Using information
Information was sometimes avoided because it was either not relevant at the time or a feeling that it was futile. Participants reported withholding information from carers to protect them. The personal accounts of other people with MND were used to allow participants to understand or contextualise their own experience of the disease.
The influence of time
Participants’ understanding of the disease was updated through revisiting information. However, information seeking could be suspended as a result of information overload; a lack of new information; and the participants’ emotional response. The rate of disease progression influenced participants sense of having a choice about interventions and the ease of decision making.
The influence of healthcare professionals
Participants found it easier to communicate with healthcare professionals (HCPs) who had known them prior to them developing communication difficulties. Participants valued HCPs spending time understanding their personal circumstances and allowing time to use communication aids. The language used by HCPs could both facilitate or be a barrier to engagement.
What do the finding’s mean going forward for people with the disease?
This study provides an insight into how people with MND and their caregivers engage with, use and understand information throughout the course of the disease. Understanding and discussing information is a key element of informed decision making. HCPs play an important role supporting people with MND to fully engage in discussions about their care. Failing to adapt to the communication challenges people with MND present with will inevitably limit their ability to participate in decision making about their care and treatment options.
The implications for practice from the perspective of the person writing this lay review who is a practising HCP are as follows. People with MND that have communication difficulties should be allowed more time to engage in discussion about information about the disease and treatment options. Prior to discussions, HCPs should encourage people with MND to share their preferences for information and decision making style. Further strategies to facilitate improved understanding include signposting to other sources of information, encouraging people with MND to document their concerns prior to clinic appointments and using non-verbal forms of communication such as via email.
This study can be found at:
https://pubmed.ncbi.nlm.nih.gov/35893192/
Paper title
Using the concept of health literacy to understand how people living with motor neuron disease and carers engage in healthcare: a longitudinal study
Author list
Paynter, C., Mathers, S., Gregory, H., Vogel, A. P., & Cruice, M
Publication details including date of publication.
Journal: Healthcare (Basel), 10(8).
Published: 24 July 2022