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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.

SUBMITTER: Paynter C

PROVIDER: S-EPMC9330690 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundDiabetic foot ulcers (DFUs) cause significant morbidity affecting 19% to 34% of people living with diabetes mellitus. DFUs not only impair quality of life but may also result in limb loss and mortality. Patient education has been advocated to raise awareness of proper foot self-care and the necessity of seeking assistance when a foot wound occurs. Modern technologies, including mobile health (mHealth) interventions such as health apps, bring the potential for more cost-effective and scalable interventions.ObjectiveThis study aims to examine the feasibility and usability of a newly developed mHealth app called Well Feet, which is a diabetes and foot care education app for individuals at risk of developing DFU.MethodsWell Feet was developed using an evidence-based and expert panel cocreation approach to deliver educational content available in 3 languages (ie, English, Chinese, and Malay) via animation videos and a range of additional features, including adaptive learning. A nonrandomized, single-arm feasibility study using a mixed methods approach with a series of validated questionnaires and focus group discussions will be conducted. In total, 40 patients and carers will be recruited from a tertiary hospital diabetes clinic to receive a 1-month mHealth intervention. The primary outcomes are the usability of the app and a qualitative perspective on user experience. Secondary outcomes include changes in foot care knowledge, self-management behaviors, and quality of life.ResultsPatient recruitment began in July 2023, and the intervention and data collection will be completed by the end of September 2023. This study has been approved by National Healthcare Group Domain Specific Review Board (2022/00614) on February 10, 2023. The expected results will be published in spring 2024.ConclusionsThrough this feasibility study, the Well Feet DFU education app will undergo a comprehensive quantitative and qualitative evaluation of its usability and acceptance for future improvement in its design. With local contextualization, cultural adaptation, and its multilingual functionality, the app addresses a critical aspect of DFU health education and self-management in a multiethnic population. Findings from this study will refine and enhance the features of the app based on user feedback and shape the procedural framework for a subsequent randomized controlled trial to assess the effectiveness of Well Feet.Trial registrationClinicalTrials.gov NCT05564728; https://clinicaltrials.gov/study/NCT05564728.International registered report identifier (irrid)DERR1-10.2196/52036.

Project description:ObjectivesTo analyse people with dementia and their family carers' attribution of social changes in dementia and the consequences of these attributions.DesignQualitative study, using a semi-structured interview guide. Individual interviews continued to theoretical saturation. Two researchers independently analysed interview transcripts.Setting and participantsPeople with mild dementia and family carers purposively selected from London-based memory services for diverse demographic characteristics to encompass a range of experiences.Primary and secondary outcomesAttribution of social changes experienced by the person with dementia and the consequences of these attributions.ResultsWe interviewed nine people with dementia and nine carers, encompassing a range of age, ethnicity and educational backgrounds.Both groups reported that the person with dementia had changed socially. People with dementia tended to give one or two explanations for social change, but carers usually suggested several. People with dementia were often socially embarrassed or less interested in going out, and they or their relatives' physical illness or fear of falls led to reduced social activity. Carers often attributed not going out to a choice or premorbid personality. Carers found that their relative needed more support to go out than they could give and carers needed time to themselves because of carer stress or other problems from which they shielded the person with dementia. Additionally, there was decreased opportunity to socialise, as people were bereaved of friends and family. Participants acknowledged the direct impact of dementia symptoms on their ability to socially engage but sometimes decided to give up socialising when they knew they had dementia. There were negative consequences from social changes being attributed to factors such as choice, rather than dementia.ConclusionClinicians should ask about social changes in people with dementia. Explaining that these may be due to dementia and considering strategies to overcome them may be beneficial.

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

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