Using cluster analysis to identify the health literacy strengths and challenges of people living with motor neurone disease in Australia

Abstract Background There is growing appreciation of the role health literacy plays in population health and health care design. Health literacy encompasses an individual’s capacity to manage their health and the responsiveness of the health system. Our aim was to identify the health literacy streng...

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Main Authors: Arabelle Douglas, Maryanne McPhee, Fiona Fisher, Christina Cheng, Anjali Henders, Laura Ziser, Julie C. Stout, Matthew C. Kiernan, Richard Osborne, Susan Mathers
Format: Article
Language:English
Published: BMC 2025-07-01
Series:BMC Health Services Research
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Online Access:https://doi.org/10.1186/s12913-025-12998-x
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author Arabelle Douglas
Maryanne McPhee
Fiona Fisher
Christina Cheng
Anjali Henders
Laura Ziser
Julie C. Stout
Matthew C. Kiernan
Richard Osborne
Susan Mathers
author_facet Arabelle Douglas
Maryanne McPhee
Fiona Fisher
Christina Cheng
Anjali Henders
Laura Ziser
Julie C. Stout
Matthew C. Kiernan
Richard Osborne
Susan Mathers
author_sort Arabelle Douglas
collection DOAJ
description Abstract Background There is growing appreciation of the role health literacy plays in population health and health care design. Health literacy encompasses an individual’s capacity to manage their health and the responsiveness of the health system. Our aim was to identify the health literacy strengths and challenges in an Australian cohort living with motor neurone disease (MND), including both people living with the disease and their carers. Methods This study used the Health Literacy Questionnaire and eHealth Literacy Questionnaire for health literacy assessment. Using a secure online platform, an anonymous survey was disseminated which included demographic data and clinical measurements. Descriptive statistical analysis and cluster analysis were employed to describe the sample and to identify different health literacy patterns in subgroups of people living with MND and their carers. Results A total of 227 people participated (171 people living with MND and 56 carers). Cluster analysis generated fifteen cluster profiles for the cohort living with MND and seven cluster profiles for carers. The variability and potential significance of patterns of health literacy strengths and challenges within the MND community are described. There was extensive diversity within the sampled population, with a mix of sociodemographic backgrounds across each cluster profile. Conclusions The health literacy cluster profiles created from this study provide insight into the full spectrum of where the challenges and strengths exist for individuals and subgroups of people managing this fatal disease. The results from this study pave the way for generating system wide interventions that address health literacy diversity, to create more enabling health care environments for all those affected by MND.
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spelling doaj-art-ef1886a2e3df4805ba30510b96dcce2e2025-08-20T04:01:56ZengBMCBMC Health Services Research1472-69632025-07-0125111110.1186/s12913-025-12998-xUsing cluster analysis to identify the health literacy strengths and challenges of people living with motor neurone disease in AustraliaArabelle Douglas0Maryanne McPhee1Fiona Fisher2Christina Cheng3Anjali Henders4Laura Ziser5Julie C. Stout6Matthew C. Kiernan7Richard Osborne8Susan Mathers9Calvary Health Care BethlehemCalvary Health Care BethlehemCalvary Health Care BethlehemGlobal Health and Equity Development Hub, La Trobe Rural Health School, La Trobe UniversityInstitute for Molecular Bioscience, The University of QueenslandInstitute for Molecular Bioscience, The University of QueenslandSchool of Psychological Sciences and Turner Institute for Brain and Mental Health, Monash UniversityNeuRA, Neuroscience Research AustraliaGlobal Health and Equity Development Hub, La Trobe Rural Health School, La Trobe UniversityCalvary Health Care BethlehemAbstract Background There is growing appreciation of the role health literacy plays in population health and health care design. Health literacy encompasses an individual’s capacity to manage their health and the responsiveness of the health system. Our aim was to identify the health literacy strengths and challenges in an Australian cohort living with motor neurone disease (MND), including both people living with the disease and their carers. Methods This study used the Health Literacy Questionnaire and eHealth Literacy Questionnaire for health literacy assessment. Using a secure online platform, an anonymous survey was disseminated which included demographic data and clinical measurements. Descriptive statistical analysis and cluster analysis were employed to describe the sample and to identify different health literacy patterns in subgroups of people living with MND and their carers. Results A total of 227 people participated (171 people living with MND and 56 carers). Cluster analysis generated fifteen cluster profiles for the cohort living with MND and seven cluster profiles for carers. The variability and potential significance of patterns of health literacy strengths and challenges within the MND community are described. There was extensive diversity within the sampled population, with a mix of sociodemographic backgrounds across each cluster profile. Conclusions The health literacy cluster profiles created from this study provide insight into the full spectrum of where the challenges and strengths exist for individuals and subgroups of people managing this fatal disease. The results from this study pave the way for generating system wide interventions that address health literacy diversity, to create more enabling health care environments for all those affected by MND.https://doi.org/10.1186/s12913-025-12998-xMotor neurone diseaseAmyotrophic lateral sclerosisHealth literacyCo-design methodologyHealth literacy questionnairee-Health literacy questionnaire
spellingShingle Arabelle Douglas
Maryanne McPhee
Fiona Fisher
Christina Cheng
Anjali Henders
Laura Ziser
Julie C. Stout
Matthew C. Kiernan
Richard Osborne
Susan Mathers
Using cluster analysis to identify the health literacy strengths and challenges of people living with motor neurone disease in Australia
BMC Health Services Research
Motor neurone disease
Amyotrophic lateral sclerosis
Health literacy
Co-design methodology
Health literacy questionnaire
e-Health literacy questionnaire
title Using cluster analysis to identify the health literacy strengths and challenges of people living with motor neurone disease in Australia
title_full Using cluster analysis to identify the health literacy strengths and challenges of people living with motor neurone disease in Australia
title_fullStr Using cluster analysis to identify the health literacy strengths and challenges of people living with motor neurone disease in Australia
title_full_unstemmed Using cluster analysis to identify the health literacy strengths and challenges of people living with motor neurone disease in Australia
title_short Using cluster analysis to identify the health literacy strengths and challenges of people living with motor neurone disease in Australia
title_sort using cluster analysis to identify the health literacy strengths and challenges of people living with motor neurone disease in australia
topic Motor neurone disease
Amyotrophic lateral sclerosis
Health literacy
Co-design methodology
Health literacy questionnaire
e-Health literacy questionnaire
url https://doi.org/10.1186/s12913-025-12998-x
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