Results

Participant characteristics

A hundred and twenty-three carers of people living with MS participated in the MS survey. Out of these, 55 carers provided a response on which perspective they found most useful for communicating MS symptoms to HCPs, with 29 providing reasons for their choice (Fig. 1). In the dementia survey, 29 and 33 carers answered a question about the most useful perspective in pain and physical function communication, respectively (Fig. 2).

Fig. 1: Flow chart of participants who answered the perspective questions in the MS survey

Fig. 2: Flow chart of participants who answered the perspective questions in the dementia survey

Most study participants in the MS survey were from Australia (27/55 or 53%), and the median age was 40 years. Most participants (35/55 or 66%) were women. (Table 1).

Variables | Characteristic | For MS symptom reportn (%)
Age in years | Median & IQR | 40 (30–53)
Gender | Woman | 35 (66%)
Man | 18 (34%)
Education | University-Postgraduate | 10 (19%)
Vocational/TAFE | 16 (30%)
University-undergraduate | 15 (28%)
Primary and secondary school | 11 (21%)
Prefer not to say | *
Currently living with the person with MS (n = 54) | Yes | 22 (41%)
Carer experience in years | Median & IQR | 2 (1–3)
Relationship with the person with MS | Parent | 6 (11%)
Child | 7 (13%)
Spouse | 15 (27%)
Another relative | 10 (18%)
Friend | 5 (9%)
Other | 12 (22%)**
Type of MS onset | Progressive onset | 14 (26%)
Relapsing onset | 24 (43%)
Not sure | 17 (31%)
Receive support for the tasks involved in caring for people with MS (n = 54) | Yes | 13 (24%)
Countries (n = 51) | Australia | 27 (53%)
New Zealand | 6 (12%)
Asiaa | 8 (16%)
Othersb | 10 (20%)

In the dementia survey, the median ages of the participants who answered the pain and physical function questions were 59 years and 61 years, respectively. Nearly all participants were women: n = 30 (91%) for the pain question and n = 25 (86%) for the physical function question (Table 2).

Variables | Characteristic | Pain questionn (%) | Physical function questionn (%)
Age in years | Median & IQR | 59 (50–67) | 62 (50–68)
Gender | Woman | 25 (86%) | 30 (91%)
Man | 3 (10%) | 3 (9%)
Non-binary | * | –
Education | University-Postgraduate | 8 (28%) | 11 (33%)
Vocational/TAFE | 6 (21%) | 9 (27%)
University-undergraduate | 8 (28%) | 7 (21%)
Secondary school | 7 (24%) | 6 (18%)
Prefer not to say | – | –
Carer category | Current carer | 15 (52%) | 19 (58%)
Carer experience in years | Median & IQR | 4 (3–8) | 4 (2–6)
Relationship | Parent | 5 (17%) | 10 (30%)
Child | 8 (28%) | 7 (21%)
Spouse | 4 (14%) | 6 (18%)
Other relative | 9 (31%) | 8 (24%)
Other | * | *
Type of dementia | Alzheimer’s disease | 11 (38%) | 14 (44%)
Vascular dementia | 6 (21%) | 6 (19%)
Mixed dementia | 9 (31%) | 9 (28%)
Other | * | *
Receive support for the tasks involved in caring for person with dementia | Yes | 19 (65%) | 20 (61%)

Carer perception of the most useful perspective

For communicating pain in dementia, 38% (11/29) of carers perceived the proxy-person perspective as the most useful, followed by either (n = 10, 35%). The results were slightly different for physical function in dementia, with 39% (13/33) of carers reporting that either of the perspectives was most useful. The same number of carers (n = 9, 27%) found the proxy-person and proxy-proxy perspectives to be the most useful for this domain. For MS symptom communication, the proxy-proxy perspective was considered the most useful perspective by 35% (19/55) of carers. Similar percentages of proxies for people with MS found either perspective (n = 15, 27%) and the proxy-person perspective (n = 13, 24%) to be the most useful. Across all conditions, few participants selected “neither” perspective as the most useful (Table 3).

 | Frequency (%)
Proxy-person | Proxy-proxy | Either | Neither
MS symptoms (n = 55) | 13 (24%) | 19 (35%) | 15 (27%) | 8 (15%)
Dementia-pain (n = 29) | 11 (38%) | 7 (24%) | 10 (35%) | 1 (3%)
Dementia-physical function (n = 33) | 9 (27%) | 9 (27%) | 13 (39%) | 2 (6%)

Proxies’ reasons for selecting a perspective as most useful

In our content analysis, we categorised the proxies’ perceived reasons into person-centred, proxy-centred, and communication-centred (Table S2). Person-centred reasons (e.g., not excluding the patient, person-first perspective) were cited when carers selected the proxy-person perspective as the most useful perspective. Proxy-centred reasons (e.g., providing additional or complementary insights, legitimacy, ability to add observations) were mentioned as reasons for choosing the proxy-proxy perspective. Communication and relationship factors (e.g., helping to communicate with HCPs, avoiding conflict, conveying objective insight) were cited for both proxy-person and proxy-proxy perspectives. “Familiarity with the person” was one of the reasons cited for either proxy-person or proxy-proxy perspectives across all domains (Table 4).

 | Perspectives | Reasons* | Category of reason
MS symptom | Proxy-person | Familiarity with the person | Person-centred and proxy-centred
Person-first perspective | Person-centred
Proxy-proxy | Alternative objective insight | Communication-centred
Carers able to add more observation on what the people with MS might miss | Person-centred and proxy-centred
Carers don’t think they can report from the proxy-person perspective | Person-centred and proxy-centred
Additional insights and usefulness of added perspective | Person-centred and proxy-centred
Either | Complementary view | Person-centred
Familiarity with the person | Person-centred and proxy-centred
Dementia-pain | Proxy-person | Familiarity with the person | Person-centred and proxy-centred
Helps the person feel included | Person-centred
Encourages the carers to be more engaged | Proxy-centred
Person-first perspective | Person-centred
Proxy-proxy | Helps carers to convey alternative objective insight | Proxy- centred and communication- centred
Familiarity with the person | Person-centred and proxy-centred
Helps to effectively communicate with HCPs | Proxy- centred and communication-centred
Either | Balanced perspective | Proxy-centred
Familiarity with the person | Person-centred and proxy-centred
Communication and observation | Proxy-centred and communication- centred
Dementia-physical function | Proxy-person | Person-first perspective | Person-centred
Proxy-proxy | Avoid conflict | Communication-centred
Familiarity with the person | Person-centred and proxy-centred
Alternative objective insight | Communication-centred
Carers don’t think they can report from the proxy-person perspective | Proxy-centred and communication-centred

Reasons for perspective choice for MS symptom communication

a. Proxy-person perspective

Carers who selected this perspective as most useful cited familiarity with the person as a reason. As one carer mentioned, “I am with my daughter a lot,_ so she communicates with me very well on how her symptoms are and how they affect her_” (P116, MS). Another viewed this perspective to be person-first, “Not sure if it is more helpful,_ but seems more legit to centre the person with MS”_ (P 231, MS). Interestingly, one carer misinterpreted the perspective as adopting the viewpoint of HCPs. “When communicating symptoms of Multiple Sclerosis (MS) to healthcare professionals,_ it can be most helpful to imagine yourself in their [HCPs] shoes…_’’ (P243, MS).

b. Proxy-proxy perspective

Some carers who selected this perspective as most useful viewed it as more objective. For example, a carer stated, “I can provide an objective account of the patient’s symptoms,_ uninfluenced by their personal biases or emotional state_.” (P140, MS).

Other carers selected this perspective due to uncertainty about speaking from the perspective of the person living with MS, in contrast to being able to speak from their own perspective.“I can’t know what my partner is feeling but I can accurately describe what I see.” (P247, MS).“I don’t know what it feels like so wouldn’t be accurate for me to speak from their point of view. As an observer I have insight they don’t have.” (P237, MS).

Other carers felt that since the person with MS could self-report, their role was to add an external viewpoint. A carer, for example mentioned “I think the [person with MS] is best placed to describe their perspective of symptoms; an outsider perspective might be useful to give the healthcare professional a different point of view.” (P169, MS). Another carer added, _“Because they’re already receiving her perspective … an outside perspective could be helpful.” (_P79, MS).

c. Either of the perspectives

Some carers found that either perspective supported a complementary view of the person’s symptoms. As one carer put it: “Considering the individual’s experience …and also speaking from an outside perspective is important …” (P184, MS). Other carers felt that their familiarity with the person enabled them to report from either perspective. A carer explained, “I am with my daughter a lot and she communicate well with me about how she feels so I can communicate both ways” (P116, MS). A quote from another respondent further clarifies this “I do take daily notes… I can often recognise warning signs …the person often says,_ ‘you know me so well’”_ (P204, MS).

Reasons for perspective choice for pain communication in dementia

a. Proxy-person perspective

Some carers who selected this viewpoint saw the proxy-person perspective as a person-first perspective, emphasising that the individual’s experience should be prioritised. A carer explained, “Her experience of pain rather than mine was most relevant” (P32, Dementia).

Some carers believed their familiarity with the person as an important reason for choosing this perspective, believing it allowed them to better represent the patient’s experience as exemplified in a carer’s quote “I knew my mother well and was able to put myself in her shoes…” (P32, Dementia).

Additionally, carers noted that using the proxy-person perspective helped the person with dementia feel included. For example, a carer mentioned, “They [people with dementia] need to feel as part of the present and not to ignore them” (P51, Dementia). Other carers chose this perspective for reasons that supported them when reporting as a proxy or being a carer. For example, one carer stated “It [proxy-person perspective] assists you to exert more effort in helping to master basic things” (P51, Dementia). Another carer stated, “Putting ourselves in their shoes makes it real in the sense of what exactly the person living with dementia is going through in pain” (P33, Dementia).

b. Proxy-proxy perspective

Some carers chose this perspective because they perceived it allowed them to provide alternative and objective insights that the person with dementia might not be able to express. As one carer explained, “Because you see what they can’t or won’t …” (P40, Dementia), while another observed, “We do not know what the person is thinking” (P46, Dementia). This perspective was seen as more factual and less reliant on assumptions, with one carer stating, “facts are better than guessing” (P53, Dementia).

Carers also drew on their familiarity and close relationships with the person to inform their reports, as described by one participant: “Close long-term relationship,_ could only imagine what Dad thought and felt._.” (P30, Dementia).

Additionally, the proxy-proxy perspective was perceived as effective for communicating with HCPs. One carer noted, “Because I believe I can explain her pain in a way that her Doctor believes….” (P2, Dementia). Another highlighted the ability to use the person’s own words to facilitate understanding: “I can potentially quote Dad using his words to help them find the source of the pain.” (P3, Dementia). Carers also felt that this perspective enabled them to advocate effectively on behalf of the person, as reflected in the statement, “…can communicate it [pain of Person living with dementia] effectively on their behalf [to HCPs]” (P40, Dementia).

c. Either of the perspectives

Some carers who selected “either” further clarified that relying on a single perspective could lead to misinterpretation or incomplete understanding. They perceived considering either their own observations and the imagined experience of the person with dementia leads to a more comprehensive and empathetic understanding. A carer noted,If I answer from my perspective as observer, I may interpret her pain incorrectly so if I also imagine it in her shoes, I could get a more balanced view (P35, Dementia).

Another described these perspectives as “more empathetic / humane approaches,_ plus cover both areas of experience …_” (P36, Dementia). Another carer added “Dementia is a very quick-thinking role for the caregiver … techniques are dynamic” (P17, Dementia).

Carers who selected either of the perspectives as most useful also recognised the importance of familiarity with the person to report both ways. For example, a carer justified as: “Probably only because I know my Dad better than most people” (P13, Dementia).

Finally, carers who selected either of the perspectives as most helpful for reporting the pain experienced by the person with dementia perceived that reporting either of the ways is important for clearly communicating with HCPs as it enhances communication and observation. One carer explained:Imagining the pain from Mum’s perspective helps me to properly acknowledge her pain and give it a voice. Then relaying to the health care provider (HCP) my observations help clarify the picture. This process helps Mum feel heard and believed, while also relaying the true situation to the healthcare professionals without undermining Mum (P11, Dementia).

Reasons for perspective choice for physical function communication in dementia

a. Proxy-person perspective

Some carers selected this perspective as they felt it prioritised the need of the person with dementia and was person-first. A carer, for instance, noted “…Putting myself in my partner’s shoes helps to see it from his perspective…” (P24, Dementia). Another carer noted, “They [Proxy-person perspectives] are best because they are patient-centred.” (P51, Dementia).

b. Proxy-proxy perspective

Some carers chose this perspective for reasons related to their relationship with the person living with dementia. For example, a carer shared, “Dad could be belligerent… He would get angry if I answered for him or on his behalf.” (P30, Dementia).

Similar to the findings for selecting for the proxy-proxy perspective as the most useful for reporting about pain in dementia, other carers chose this perspective as they felt that they could not report from the proxy-person perspective. A carer for example wrote “I lack the understanding of what being in Dad’s shoes would be like.” (P3, Dementia). Another carer added “I’ve tried to imagine what my husband’s experience … I can’t do it…” (P14, Dementia).