Perspectives

Perspective for MS symptom communication

Due to less being known about proxy reporting in MS, we first asked carers about how often they accompanied the person living with MS to healthcare consultations (response options were never, rarely, sometimes, often and always). Carers who at least rarely accompany the person living with MS to healthcare visits were asked how often they communicate with HCPs about MS symptoms (with similar response options: never, rarely, sometimes, often and always). To understand the most useful perspective, we asked carers who at least rarely communicate MS symptoms with HCPs: “When communicating MS symptoms to HCPs, please indicate which approach you think would be most helpful.” The response options were:

Imagining yourself in their shoes and answering from their perspective.Answering from your perspective (your own viewpoint as an observer).Either.Neither.

Carers who selected option 1 or 2 or 3, were asked a follow-up open-ended question: “Please explain why you think the approach you have selected is most helpful for communicating.” We intentionally left the term “useful/helpful” open to carers’ interpretation to capture their understanding rather than impose a predefined definition. This allowed carers to consider usefulness from any perspective they deemed relevant, whether their own, the person they care for, or HCPs.

Perspective for pain and physical function communication in dementia

Separate prompts were given for questions about pain and physical function. For pain, carers were first asked if they perceive the person they care for experienced pain. Only carers who indicated the person they cared for experiences/ed pain were asked a perspective question: “If you are asked a question about their pain by HCPs, please indicate which approach you think would be most helpful in communicating.”

For physical function, carers were asked if they communicated about the physical function of the person living with dementia and were then asked to select the most useful perspective. The response options were the same as in the MS survey. Participants who selected options 1, 2 or 3 were then asked a follow-up open-ended question to explain why they think the approach or approaches they have selected is or are most helpful. Due to an error in skip logic, carers were only asked the open-ended question for most useful perspective to communicate physical function if they selected options 1 or 2.

Data collection tool

In addition to the information about perspectives, we collected sociodemographic information about informal carers. This included age, gender, country (for proxies of people with MS only, as the dementia survey was limited to people living in Australia), education, carer status (current/former for dementia carers), years of caring experience, relationship with the person and cohabitation status (for MS carers). Additionally, we collected information about dementia and MS types and years since diagnosis.

Data analysis

A descriptive analysis was conducted to report the carer-perceived frequency and percentage of the most useful perspectives. The analysis of carers’ reasons for choosing a perspective as the most useful focused on describing and categorising the reasons provided using content analysis. Categories and subcategories were identified from the data and were not pre-determined in advance. HD, a PhD student, developed the analysis plan, created a codebook, defined coding rules, and analysed the data, with guidance and feedback from JR throughout. Discrepancies were resolved through discussion. Quotes were labelled with participant number (Pn) and condition (MS or dementia). KD, AS, JC, IV, and BT reviewed the data collection tool and manuscript. Regular meetings supported rigorous analysis and researcher reflexivity.