Methods

Design

This study draws on two separate cross-sectional online surveys conducted with informal carers in two different populations: (1) carers of people living with MS and (2) carers of people living with dementia. People with lived experience of caring (for people with dementia/ for people with MS) reviewed and commented on the study materials. Ethics approval was obtained from the University of Tasmania Human Research Ethics Committee (H0030743 approval date 24/6/2024 and amendment date 20/12/2024 for the MS study; H0030059 for the dementia study approved on 18/03/2024). This study is part of a larger PhD project. The Standards for Reporting Qualitative Research (SRQR) checklist was used for reporting (Table S1) [39].

Recruitment and data collection

The surveys were advertised via the Understanding MS and Understanding Dementia massive open online courses (MOOC), hosted by the University of Tasmania. The MS survey was administered using LimeSurvey (September – November 2024). The dementia survey was administered using REDCap in May – June 2024. Eligible participants for the MS survey were current informal (unpaid) carers of people living with MS, aged 18 years and above. For the dementia survey, both current or previous informal (unpaid) carers of people living with dementia, aged 18 years and above and who live in Australia were included. While we included current and former carers of people living with dementia, we included only current carers of people living with MS. Dementia is a progressive, terminal condition, and former carers can provide valuable information about pain and physical function assessment and communication. MS often has a variable course of symptoms. Some are less visible to carers and individuals with MS usually retain cognitive function to self-report on their symptoms. The classification of carers as current and former are more developed in dementia research compared to in MS. As the MS Role Survey asked carers their current role, we included only current carers in the MS part of the survey.

The anonymous surveys were administered and advertised in English. Participants were advised that survey completion implied consent to participation and data use. Both platforms required participants to access the survey through secure links embedded in the course pages. No public posting of survey links occurred. In the dementia survey we used the response date and time as this was fully anonymous. For the MS survey we used the MOOC participant unique identification number to remove duplicate responses. To reduce participant burden, we have asked those who indicated interest to participate in research in the MS Role Survey, an existing research study that is separate to this project. The MS Role Survey asks MS MOOC participants how they identify (e.g., a person living with MS, or a carer, family member, or friend of someone with MS) themselves. The MS Role Survey functioned as a screening and routing mechanism within the MOOC‑based research design, linking initial general consent to the delivery of the appropriate, role‑specific surveys. First, it classified participants according to their role within the MS community, allowing the researchers to distinguish between people with MS and carers/family/friends. Second, it helped to link between the MOOC platform and the appropriate follow‑up survey, ensuring that participants were only invited to surveys that were relevant to their role.

We used online qualitative surveys with free text responses. Qualitative online surveys, although relatively novel and underutilised in qualitative research [40], have potential in qualitative research [41]. Previous studies have shown the feasibility of qualitative online surveys for capturing participants’ experiences and perspectives across diverse research context [42–44]. For example, an international online qualitative survey including participants from 57 countries was used to explore the perspective of people with MS about their attitude toward and experiences of lifestyle modification as part of self-management [45]. Thus, online qualitative surveys offer potential of obtaining information from wide range of participants, including participants who might otherwise avoid in-person research [46] and from large, diverse samples [47]. In turn, the broader reach may enhance the range of perspectives captured and improve the transferability of findings to contexts beyond the immediate study setting [41, 48]. In the MS study, the online survey helped us to obtain responses from several countries.