Cultural Adaptation of the Serious Illness Conversation Guide for Caregivers of Persons with Dementia in Singapore

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Cultural Adaptation of the Serious Illness Conversation Guide for Caregivers of Persons with Dementia in Singapore | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Cultural Adaptation of the Serious Illness Conversation Guide for Caregivers of Persons with Dementia in Singapore Alston NG, Vignesh Sivasamy, Shirlyn Hui Shan Neo This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7399717/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 30 Dec, 2025 Read the published version in BMC Geriatrics → Version 1 posted 13 You are reading this latest preprint version Abstract Introduction Goals-of-care (GOC) discussions are often delayed or uninitiated for persons with dementia (PwD), potentially contributing to inappropriate end-of-life treatment. The Serious Illness Conversation Guide (SICG) facilitates structured GOC discussions about patient values and care preferences, but a dementia-specific Guide adapted to the Asian cultural context has yet to be developed. Methods We adapted the SICG for caregivers of PwD in Singapore using a three-phase, approach. Phase 1 involved adapting the patient-facing SICG to caregiver-facing language (version 1). In Phase 2, we iteratively tested the guide with 6 and 13 caregivers in 2 rounds of interviews to derive the final version of the Guide. In Phase 3, 50 caregivers rated each SICG-C item from Versions 1 and 3 using a structured questionnaire, with presentation order alternated to minimise order effects. Results Caregivers expressed a strong preference for Version 3, with Wilcoxon signed-rank tests showing statistically significantly higher ratings relative to Version 1. Qualitative findings revealed that caregivers valued empathy, contextual clarity, and reassurance of continued clinical support. None of the caregivers had been informed by their loved ones of their goals and priorities, reaffirming the value of the SICG-C. Revised prompts were highly aligned with caregivers’ informational and emotional needs, and were well-received. Conclusion The SICG-C enables clinicians to initiate timely, values-based GOC discussions with caregivers of PwD. Its structured, sensitive language addresses caregiver concerns and may be used to support proactive care planning in dementia. Further research is needed to evaluate implementation in routine clinical practice. Serious illness care dementia values and preferences goals of care communication Introduction Dementia is a progressive and life-limiting disease that affects more than 55 million people globally, a number set to reach 139 million by 2050.( 1 ) A known challenge in dementia care is the tendency for persons with dementia (PwD) to receive overtreatment at the end of life, including burdensome life-sustaining interventions that offer limited benefit to survival and quality of life.( 2 – 6 ) Early initiation of goals-of-care discussions are thus important in ensuring that the care PwD receive aligns with their values, priorities, and preferences. But these conversations rarely take place or occur too late in the illness trajectory, with only about 3–39% of PwD having undertaken some form of advance care planning (ACP) globally.( 7 ) Initiation of goals-of-care discussions with PwD and/or their surrogate decision-makers is impeded by multiple factors.( 8 , 9 ) Dementia, for instance, may be assumed to be a natural part of ageing by PwD and their loved ones,( 9 – 12 ) a misconception that contributes to the perceived irrelevance of goals-of-care discussions and differences in end-of-life care preferences between PwD and their loved ones.( 13 ) The Serious Illness Conversation Guide (SICG) is a structured communication tool developed by Ariadne Labs and tested with many patient populations across various health systems. The available evidence suggests that clinicians who use the Guide have better, earlier, and more conversations with their patients.( 14 , 15 ) Other beneficial outcomes include enhanced patient satisfaction with care, reduced symptoms of anxiety and depression in patients,( 16 – 18 ) and lower rates of acute care utilisation.( 19 , 20 ) However, existing trials primarily focus on patient-clinician conversations; limited research has been conducted on serious illness conversations (SIC) that involve surrogate decision-makers, a gap especially salient to the delivery of quality dementia care. The only dementia-specific adaptation of the SICG currently available is the version developed by Berry and colleagues for use in the American context.( 21 ) However, a review by the study team raised concerns about its acceptability and appropriateness in an Asian context. This study thus builds on a locally adapted version of the SICG( 22 ) to iteratively test and refine a caregiver-oriented SICG (SICG-C), with the longer-term goal of supporting clinicians in eliciting the priorities and care preferences of PwD from their caregivers and delivering patient-centred, values-aligned dementia care. Study Aims This study aimed to Adapt and iteratively revise the SICG-C; and Assess the acceptability of the finalised SICG-C among caregivers of PwD. Methods Settings and participants Participants were adult caregivers of PwD, recruited from the outpatient Geriatric Medicine clinic at Singapore General Hospital (SGH). Eligible participants were ≥ 21 years, aware of the patient’s diagnosis, primary caregivers or spokespersons of the patient, able to speak English or Mandarin. PwD and domestic helpers were excluded. Purposive sampling was used to ensure diversity in caregiver demographics and dementia severity among their care recipients. Written informed consent was obtained from all participants prior to initiation of study activities. Study design and procedures This study was conducted in three phases: ( 1 ) Pre-test adaptation of SICG to develop the SICG-C; ( 2 ) two rounds of iterative client-testing and refinement of the SICG-C; and ( 3 ) a final survey-based assessment of acceptability to caregivers. Phase 1: SICG-C development The adaptation process began with the English-language version of the SICG previously adapted for use in Singapore. Additional reference materials included the Serious Illness Conversation Guide for Dementia (SICG-D) developed by Berry et al. and various clinician-developed communication tools used in local practice. Drafts were reviewed by VS and SN, and their feedback was incorporated into the initial version of the SICG-C. Phase 2: Iterative testing and revision Two rounds of interviews were conducted. In Round 1 (October 2024), we recruited 6 caregivers for structured interviews to rapidly identify key areas for improvement and generate Version 2 of the Guide. In Round 2 (November 2024), we recruited 13 caregivers to reach thematic saturation. During these interviews, participants were read each item from the SICG-C and asked to rate its acceptability using a three-point scale: 1–Unacceptable; 2–Acceptable with changes; 3–Acceptable as is. They were encouraged to elaborate on their ratings, with attention to clarity, tone, and associations evoked. In Round 2, participants were shown both versions of each item (Version 1 followed by Version 2) and asked to evaluate them independently to reduce the risk of contrast bias. Interviews were audio-recorded, transcribed, and thematically analysed to guide revisions after each round. Phase 3: Final acceptability assessment A final acceptability assessment was conducted (March–May 2025) using a structured questionnaire designed specifically for this study. Using a 4-point Likert scale (1= “Very unacceptable” to 4= “Very acceptable”), participants were asked to rate two versions of each SICG-C item (Version 1 vs. Version 3). A target sample size of 50 was selected to provide adequate power for Wilcoxon signed-rank tests, assuming moderate effect size (P(X > Y) = 0.67), α = 0.05, and power = 0.80. To minimise order effects, two versions of the questionnaire were developed: in one, Version 1 was presented first for each item tested; in the other, Version 3 appeared first (questionnaires in Supplementary Appendix S2). These were alternately administered to each successively recruited participant. Questionnaires were self-administered or completed with assistance from the recruiter upon request. Data were analysed using Excel and R (version 4.2.0). Results A total of 69 participants were purposively recruited (Table 1 ). With four participants from Rounds 1 or 2 re-approached for survey in Phase 3, the total number of unique participants is 65. Across all rounds, most participants were female (ranging from 53.8% in Round 2 to 83.3% in Round 1), with mean ages decreasing slightly over successive rounds (59.5 years in Round 1, 57.2 years in Round 2, and 53.3 years in Phase 3). Most participants were of Chinese ethnicity and had completed post-secondary education. The majority were employed full-time and were adult children of the person with dementia (PwD). Alzheimer's disease was the most commonly reported diagnosis, followed by mixed dementia and vascular dementia. The majority of PwD were in the mild or moderate stages of dementia based on the Functional Assessment Staging Tool (FAST) for dementia. Table 1 Participant characteristics Round 1 Round 2 Round 3 n 6 13 50 Females: n (%) 5 (83.3%) 7 (53.8%) 37 (74.0%) Age: Mean (sd) 59.5 (10.4) 57.2 (14.2) 53.3 (9.5) Ethnicity: n (%) Chinese 5 (83.3%) 10 (76.9%) 40 (80.0%) Indian 1 (16.7%) 2 (15.4%) 4 (8.0%) Malay 1 (7.7%) 6 (12.0%) Religion: n (%) Buddhist 1 (16.7%) 2 (15.4%) 14 (28.0%) Christian 3 (50.0%) 5 (38.5%) 8 (16.0%) Free thinker 1 (16.7%) 3 (23.1%) 13 (26.0%) Hindu 1 (16.7%) 1 (7.7%) 3 (6.0%) Muslim 2 (15.4%) 7 (14.0%) Others 5 (10.0%) Highest educational qualification: n (%) Primary school 1 (2.0%) Secondary school 1 (16.7%) 1 (7.7%) 10 (20.0%) Post-secondary 5 (83.3%) 12 (92.3%) 39 (78.0%) Occupational status: n (%) Working full-time 4 (66.7%) 5 (38.5%) 31 (62.0%) Working part-time 1 (7.7%) 4 (8.0%) Unemployed 2 (15.4%) 8 (16.0%) Retired 2 (33.3%) 5 (38.5%) 7 (14.0%) Relation to patient/ PwD: n (%) Child 3 (50.0%) 10 (76.9%) 42 (84.0%) Sibling 1 (16.7%) 2 (4.0%) Spouse 2 (4.0%) Others 1 (16.7%) 3 (23.1%) 4 (8.0%) Patient’s dementia subtype: n (%) Alzheimer's 5 (83.3%) 9 (69.2%) 26 (52.0%) Frontotemporal 1 (2.0%) Mixed 1 (16.7%) 3 (23.1%) 16 (32.0%) Vascular 1 (7.7%) 7 (14.0%) Patient's dementia staging (FAST): n (%) Mild 1 (16.7%) 5 (38.5%) 22 (44.0%) Mild-to-moderate 1 (7.7%) 7 (14.0%) Moderate 3 (50.0%) 5 (38.5%) 18 (36.0%) Moderate-to-severe 1 (16.7%) 2 (15.4%) 2 (4.0%) Severe 1 (16.7%) 1 (2.0%) Rating tabulation for Round 1 of Phase 2 A total of 21 items were tested with 6 caregiver participants. Only 10 items were rated “Acceptable as is” (rating = 3) by at least 5 participants (> 75%), of which 4 items were related to summative or concluding remarks found at the end of the Guide. Key areas for improvement included exploration of acceptable tradeoffs (S/N 1–16), critical abilities (S/N 1–14, 1–15), understanding of patient’s condition (S/N 1–4), among others. Table 2 shows the 12 items which were rated “Acceptable as is” (rating = 3) by fewer than 75% of participants (n < 5), of which seven were rated “Unacceptable” (rating = 1) from at least one participant (S/N 1–3, 1–4, 1–5, 1–12, 1–14, 1–15, 1–16). (See Supplementary Table S1.1 in Supplementary Appendix S1 for detailed results.) Table 2 Results from Round 1 – Items requiring revision (n = 6) S/N Question/ prompt topic No. of responses with rating of 3 (n = 6) 1–3 “I will be using a guide and taking notes during our talk in case I forget something.” 2 1–16 Tradeoffs : “If your ____’s condition gets worse, how much treatment/ interventions would you think he/ she is willing to go through for the possibility of living longer?” (provide examples: ICU/ dialysis/ surgery/ feeding tubes/ more tests/ others) 1–4 “What have you been told about your ____’s condition?” 3 1–14 Critical abilities (early in trajectory) : “What activities brought joy and meaning to your ___’s life?” “What activities do you enjoy doing with your _____?” 1–17 Family/ social support : “How are you and your family coping during this difficult time?” 1–5 “What would you like to know about your ____’s condition?” 4 1–8 Time (for doctors only) : “I wish this was not the case. It is also possible that time may be as short as ___ (express as a range, e.g. days to weeks, weeks to months, months to a year).” 1–10 Priorities (now) : “What do you think are your ___’s most important priorities now?” “Are these your priorities for him/ her too?” 1–11 Priorities (future) : “If your ___’s health gets worse, what do you think would be his/ her most important priorities?” “Are these your priorities for him/ her too?” 1–12 Worries : “What would you say are your____’s biggest worries?” Caregiver’s worries : “What are your biggest worries?” 1–15 Critical abilities (late in trajectory) : “Given your ____’s condition, what activities do you think he/ she would like to continue doing?” 1–19 “Keeping that in mind, and what we know about your ____’s condition, let’s make the best of this situation. I recommend that we ________.” Qualitative findings and rationale for key revisions to Version 1 of SICG-C Interviews with caregivers yielded three key themes that directly informed revisions to the SICG-C. Table 3 provides a side-by-side comparison of Versions 1 and 2 of the Guide to illustrate the revisions introduced and discussed below. Guide items in which no changes were made are shaded grey. Table 3 Side-by-side view of Versions 1 and 2 of SICG-C Version 1 Version 2 S/N Guide item S/N Guide item 1–1 “How is your ____ doing today?” 2 − 1 “How is your ____ doing today?” 1–2 “Is it okay if we talk together about your ____’s condition?” 2–2 “Can we talk about your ___’s condition?” 1–3 “I will be using a guide and taking notes during our talk in case I forget something.” (Use if appropriate) 2–3 “I will be using a guide and taking notes during our discussion.” (Use if appropriate) 1–4 “What have you been told about your ____’s condition?” 2–4 “What do you know about your ____’s condition?” 1–5 “What would you like to know about your ____’s condition?” 2–5 “Is there anything that you’d like to find out about your ____’s condition?” 1–6 “I would like to tell/ inform/ share with you my understanding of where things are right now with your ____’s condition – is that okay?” 2–6 “Can I tell/ inform/ share with you where things currently stand with your ___’s condition?” 1–7 Uncertain : “I hope that your ____ will stay as well as possible for a long time and we will work towards that. It is also possible that his/ her health could change quickly. I think it is important that we prepare for that possibility.” 2–7 Uncertain : “I hope that your ____ will stay as well as possible for a long time and we will work towards that. It is also possible that his/ her health could change quickly. I think it is important that we prepare for that possibility.” 1–8 Time (for doctors only) : “I wish this was not the case. It is also possible that time may be as short as ___ (express as a range, e.g. days to weeks, weeks to months, months to a year).” 2–8 Time (for doctors only) : “I would like to know if understanding the prognosis/ lifespan for your ___ is important to you.” ( If yes ) “We cannot predict exactly how much time your ___ will have, but based on what we know about his/ her health, we estimate that he/ she has about ____ (express as a range, e.g. days to weeks, weeks to months, months to a year).” 1–9 Function : “I hope ___ will feel as well as possible for a long time, and we will work towards that. It is also possible that his/ her ____’s (e.g., strength, energy level, alertness, ability to do daily activities) will be affected.” 2–9 Function : “I hope your ___ will stay well. It’s possible that your ____’s (e.g. strength, energy level, alertness, ability to do daily activities) will be affected, depending on the medical issues and problems that arise over time.” 1–10 Priorities (now) : “What do you think are your ___’s most important priorities now?” “Are these your priorities for him/ her too?” 2–10 Priorities : “Has your ___ shared with you what is important to him/ her?” ( If yes ) “What did he/ she say is important to him/ her?” ( If no ) “Tell me more about your ___. What was he/ she like and what do you think is important to him/ her?” 1–11 Priorities (future) : “If your ___’s health gets worse, what do you think would be his/ her most important priorities?” “Are these your priorities for him/ her too?” 2–11 Priorities (future) : ( If answer to preceding question is “yes” ) “If your ___’s health gets worse, do you think there’d be any changes to what’s important to him/ her?” “From your point of view, are there other things that you think are important for your ___’s care that we have not discussed or planned for?” 1–12 Worries : “What would you say are your____’s biggest worries?” Caregiver’s worries : “What are your biggest worries?” 2–12 Caregiver’s worries : “What worries you about your ___?” 1–13 Sources of strength : “What do you think gives your ____ strength living with his/ her condition?” Caregiver’s sources of strength : “What gives you strength as you care for ____?” 2–13 Sources of strength : “What brings your ___ comfort or peace in his/ her daily life?” Caregiver’s sources of strength : “What gives you/ your family strength as you care for ____?” 1–14 Critical abilities (early in trajectory) : “What activities brought joy and meaning to your ___’s life?” “What activities do you enjoy doing with your _____?” 2–14 Critical abilities (earlier in trajectory) : “What activities does your ___ enjoy doing and would like to continue?” 1–15 Critical abilities (late in trajectory) : “Given your ____’s condition, what activities do you think he/ she would like to continue doing?” 2–15 Critical abilities (later in trajectory) : “To help me make better plans for your ____’s care, I’d like to find out what abilities/ daily functions are important to him/ her.” ( Prompt using Activities of Daily Living ) 1–16 Tradeoffs : “If your ____’s condition gets worse, how much treatment/ interventions would you think he/ she is willing to go through for the possibility of living longer?” (provide examples: ICU/ dialysis/ surgery/ feeding tubes/ more tests/ others) 2–16 Tradeoffs : “Every treatment has its pros and cons, and they can affect your ___’s quality of life in different ways. I’d like to find out what additional measures your ___ can accept if his/ her health gets worse.” ( Provide examples of interventions that may be relevant to patient, e.g. ICU, dialysis, surgery, feeding tubes, more tests, etc. Describe potential benefits and drawbacks .) 1–17 Family/ social support : “How are you and your family coping during this difficult time?” 2–17 Family/ social support : “How are you/ your family doing in managing ___’s care?” 1–18 “I’ve heard you say that ____ is important to your ____.” 2–18 “I’ve heard you say that ____ is important to your ____.” 1–19 “Keeping that in mind, and what we know about your ____’s condition, let’s make the best of this situation. I recommend that we ________.” 2–19 “Keeping that in mind, and what we know about ___’s condition, I recommend/ suggest _______.” 1–20 “This will help us make sure that your ____’s treatment/ care plans reflect what’s important to him/ her.” 2–20 “This will help us make sure that your ____’s treatment/ care plans reflect what’s important to him/ her.” 1–21 “Is this plan ok to you? If you think of anything else later, we can revisit this conversation another time.” 2–21 “Is this plan ok? If you think of anything else, we can talk about this again at your next visit.” 1. Expectations of clinical authority Caregivers responded negatively to the phrase “in case I forget something” (S/N 1–3), interpreting it as a sign of diminished professionalism and competence. For many, confidence in the clinician’s expertise and diligence was foundational to their trust in the clinician and their recommendations. To preserve the impression of clinical authority, S/N 1–3 was revised to “I will be using a guide and taking notes during our discussion” (S/N 2–3). 2. Divergent forms of expertise While caregivers valued clinical knowledge, they emphasised the distinctiveness of their own experiential and relational understanding of the PwD’s needs, behaviours, and lifestyle preferences. In response to S/N 1–4, several participants noted that although clinicians possess biomedical knowledge, caregivers possess a more holistic, person-centred familiarity that is “more than what the doctor said.” In recognition of the person-centred knowledge of the caregiver, S/N 1–4 was revised to “What do you know about your ___’s condition?” (S/N 2–4) 3. Challenges in articulating the priorities and critical abilities of PwD Caregivers reported varying degrees of difficulty in identifying what the PwD prioritised, valued, or feared, largely due to the cognitive decline faced by PwD and the absence of prior goals-of-care conversations. In trying to speak on behalf of their loved ones, most inadvertently projected their own views. This tendency risks undermining the very purpose of serious illness conversations, which aim to elicit what the PwD would have wanted if they retained decisional capacity. In response, S/N 1–10 was revised to explicitly ask whether the PwD had previously expressed what was important to them. If they had not, the Guide prompts caregivers to reflect on the patient’s character and preferences prior to cognitive decline, before considering what their goals and priorities might be now. Similarly, we revised the question on critical abilities to ask which activities of daily living (ADLs) are important to the PwD (S/N 2–15), as opposed to asking them to reflect on activities that they enjoy or would like to continue to do, reflecting a shift from aspirational to realistic concerns that better align with the personal experience of dementia. While participants were largely accepting of the frailty of their loved ones and took well to prognostic cues indicated in S/N 1–7, 1–8, and 1–9, one participant suggested that the question about remaining time (S/N 1–8) may be made less abrupt and jarring with the addition of a preference-based prompt. In S/N 2–8, therefore, the Guide asked if the caregiver would like to know how much time their loved one might have. Rating tabulation for Round 2 of Phase 2 Thirteen participants were asked to compare original (Version 1) and revised (Version 2) versions of the SICG-C using the same 3-point acceptability scale from Round 1 and elaborate on their ratings. 21 items were presented, of which 17 were paired comparisons. Revisions led to improved acceptability ratings across all 17 items except S/N 2–2, which received mixed reviews with some finding S/N 2–2 “less serious” and “formal”, while others claiming that it stated the obvious. The greatest improvements in acceptability, defined as an increase in the number of participants giving a rating of 3, were observed for S/N 2–16, which gained 10 additional ratings of 3, and S/N 2–9, 2–13, 2–15, which gained 9 additional ratings of 3. The smallest improvements were seen in S/N 2–3, 2–11, and 2–19, for which an additional 2 participants gave a rating of 3. No improvement was recorded for S/N 2–2, likely because the revision was slight. (See Supplementary Table S1.2 for detailed results.) Four items (S/N 1–1, 1–7, 1–18, and 1–20) were retained in Version 2 without revision. Three of these were rated “Acceptable as is” (rating = 3) from at least 11 of 13 participants (> 75%). S/N 2–7 (Version 2), however, was deemed acceptable by only five participants, suggesting the need for further refinement and exploration of participant feedback. Qualitative findings and rationale for further revisions to Version 2 of SICG-C Most participants in Round 2 interviews found Version 2 of the SICG-C acceptable and affirmed the revisions made. Nevertheless, several items merited closer attention, particularly S/N 2–7 and 2–11. Beyond semantic refinements, two key themes were identified and used to guide further iterations of the Guide. Table 4 contrasts Versions 2 with Version 3 of the SICG-C to foreground the changes made and indicate how items in one version correspond to those in the other. Table 4 Side-by-side view of Versions 2 and 3 of SICG-C. Version 2 Version 3 S/N Guide item S/N Guide item 2 − 1 “How is your ____ doing today?” 3 − 1 “How are you doing?" 2–2 “Can we talk about your ___’s condition?” 3 − 2 “Is it okay if we discuss your ____’s condition?” 2–3 “I will be using a guide and taking notes during our discussion.” ( Use if appropriate ) 3–3 “I will be using a guide to structure our discussion and to take notes for future reference.” ( Use if appropriate ) 2–4 “What do you know about your ____’s condition?” 3–4 “What do you know about your ____’s condition?” 2–5 “Is there anything that you’d like to find out about your ____’s condition?” 3–5 “Is there anything that you’d like to find out about your ____’s condition?” 2–6 “Can I tell/ inform/ share with you where things currently stand with your ___’s condition?” 3–6 “May I tell/ inform/ share with you my assessment of your ___’s current condition?” 2–7 Uncertain : “I hope that your ____ will stay as well as possible for a long time and we will work towards that. It is also possible that his/ her health could change quickly. I think it is important that we prepare for that possibility.” 3–7 Uncertain trajectory : “While we continue to do our best for your ___’s care, it is possible that your ___'s condition could change, resulting in differences in his/ her health/ strength/ energy level/ alertness/ ability to do daily activities. I think it is important we work together to prepare for what may lie ahead.” ( Where appropriate, provide reassurance that you wish to work with the caregiver to plan ahead while the patient’s condition is stable/ manageable.) 2–8 Time (for doctors only) : “I would like to know if understanding the prognosis/ lifespan for your ___ is important to you.” ( If yes ) “We cannot predict exactly how much time your ___ will have, but based on what we know about his/ her health, we estimate that he/ she has about ____ (express as a range, e.g. days to weeks, weeks to months, months to a year).” 3–8 Time (for doctors only) : "I would like to know if you would like to discuss the prognosis/ how much time your ___ could have". ( If yes ) “We cannot predict exactly how much time your ___ has, but based on what we know, we estimate that he/ she has about ____ (express as a range, e.g. days to weeks, weeks to months, months to a year).” (Where appropriate, provide assurance of support.) 2–9 Function : “I hope your ___ will stay well. It’s possible that your ____’s (e.g. strength, energy level, alertness, ability to do daily activities) will be affected, depending on the medical issues and problems that arise over time.” Note: S/N 2–7 and 2–9 have been merged to form S/N 3–7. 2–10 Priorities : “Has your ___ shared with you what is important to him/ her?” ( If yes ) “What did he/ she say is important to him/ her?” ( If no ) “Tell me more about your ___. What was he/ she like and what do you think is important to him/ her?” 3–9 Patient's priorities : “Has your ___ shared with you what is important to him/ her?” ( If yes ) “What did he/ she say is important to him/ her?” ( If no ) “Tell me more about your ___. What do you think is important to him/ her?” 2–11 Priorities (future) : ( If answer to preceding question is “yes” ) “If your ___’s health gets worse, do you think there’d be any changes to what’s important to him/ her?” “From your point of view, are there other things that you think are important for your ___’s care that we have not discussed or planned for?” 3–10 Caregiver’s priorities : ( Describe what disease progression may look like for patient, highlight commonly seen symptoms ) “From your point of view, what are some important things we should take note of when managing your ___'s condition?" 2–12 Caregiver’s worries : “What worries you about your ___?” 3–11 Worries "Has your ____ ever shared with you his/ her concerns or worries? What are they?" “What worries you about your ___?” 2–13 Sources of strength : “What brings your ___ comfort or peace in his/ her daily life?” Caregiver’s sources of strength : “What gives you/ your family strength as you care for ____?” 3–12 Sources of strength : “What brings your ___ comfort or peace in his/ her daily life?” 3–13 Caregiver’s sources of strength : “What gives you/ your family strength as you care for ____?” 2–14 Critical abilities (earlier in trajectory) : “What activities does your ___ enjoy doing and would like to continue?” 3–14 Critical abilities (earlier in trajectory) : “What activities does your ___ enjoy doing and would like to continue?” 2–15 Critical abilities (later in trajectory) : “To help me make better plans for your ____’s care, I’d like to find out what abilities/ daily functions are important to him/ her.” ( Prompt using Activities of Daily Living ) 3–15 Critical abilities (later in trajectory) : “To help me make better plans for your ____’s care, I’d like to find out what abilities/ daily functions are important to him/ her.” ( Prompt using Activities of Daily Living) 2–16 Tradeoffs : “Every treatment has its pros and cons, and they can affect your ___’s quality of life in different ways. I’d like to find out what additional measures your ___ can accept if his/ her health gets worse.” ( Provide examples of interventions that may be relevant to patient, e.g. ICU, dialysis, surgery, feeding tubes, more tests, etc. Describe potential benefits and drawbacks .) 3–16 Tradeoffs : “Every treatment has its pros and cons, and they can affect your ___’s quality of life in different ways. I’d like to discuss with you what you think are additional measures your ___ can accept if his/ her health gets worse.” (Provide examples of interventions that may be relevant to patient, e.g. ICU, dialysis, surgery, feeding tubes, more tests, etc. Describe potential benefits and drawbacks.) 2–17 Family/ social support : “How are you/ your family doing in managing ___’s care?” 3–17 Family/ Social support : “How are you/ your family doing in managing ___’s care?” 2–18 “I’ve heard you say that ____ is important to your ____.” 3–18 “I’ve heard you say that ____ is important to your ____, and that ____ is important to you/ your family.” 2–19 “Keeping that in mind, and what we know about ___’s condition, I recommend/ suggest _______.” 3–19 “To ensure that your ___’s care reflects what’s important to your ___ and to you/ your family, may I suggest/ propose that ____?” 2–20 “This will help us make sure that your ____’s treatment/ care plans reflect what’s important to him/ her.” 2–21 “Is this plan ok? If you think of anything else, we can talk about this again at your next visit.” 3–20 “Is this plan ok? If you think of anything else, we can talk about this again at your next visit.” 1. Worries and misconceptions over implied poor prognosis S/N 2–7 (“I hope your ___ will stay as well as possible…”) elicited mixed responses from the participants. While some appreciated its empathetic tone, others found the phrasing disconcerting, interpreting it as suggestive of a poor prognosis. Nonetheless, there was broad agreement that reassurance about ongoing clinical oversight and support was helpful. In response, we revised the prompt to begin with “While we continue to do our best to care for your ___,” thereby shifting the emphasis from prognosis to the clinician’s commitment to continued care. The revised prompt nonetheless maintains the possibility “that (the PwD’s) condition could change” (S/N 3–7). Participants also expressed a need for greater context at the outset of the conversation, namely, clarity on why the clinician was initiating the discussion and what was meant by “his/her health could change quickly.” Several participants did not view disease progression as a clinical concern, but they responded positively nonetheless when interviewers clarified that the conversation was not prompted by worsening health but aimed at preparing for the future. Drawing on these insights, we merged S/N 2–7 and 2–9 into a single prompt (S/N 3–7), included a note to clinicians to provide reassurance to the caregivers, and reinforced a sense of partnership by inviting caregivers to “work together to prepare for what may lie ahead.” 2. Uncertainty and interpolation in caregivers’ accounts of patients’ priorities S/N 2–11 presented considerable challenges for participants. Many felt ill-equipped to speak to the potential changes in their loved one’s priorities, particularly as PwD were often perceived to lack the cognitive capacity to hold or express even present-day priorities. None of the participants have had a discussion with their loved ones about their goals of care nor had they been informed on their priorities. As in Round 1 interviews, participants frequently substituted their own priorities for those of the PwD. Some caregivers of persons with moderate to severe dementia expressed discomfort and moral uncertainty at whether their assumptions aligned with what their loved ones would have wanted, had they retained decision-making capacity. We thus considered a question about the PwD’s future priorities to be unnecessary, and that any potentially relevant information about their goals of care would be elicited through the preceding prompt. As such, S/N 3–10 (corresponding to 2–11) asks caregivers, “What are some important things we should take note of when managing your ___’s condition?” For added clarity, this question includes a reminder for clinicians to “Describe what disease progression may look like for the patient,” recognising the clinician’s role in contextualising the discussion based on the patient’s dementia subtype and clinical history. Distinguishing caregiver’s worries from PwD’s Although not directly prompted by participant feedback, we revised S/N 2–12 to ensure consistency in how the Guide distinguishes between patient and caregiver perspectives. The original version asked caregivers only about their own worries regarding the patient. However, cognisant that certain PwD—especially those in the earlier stages of disease—may still be able to express their worries and concerns, we applied the same recall-based framing used for S/N 3–9 to S/N 3–11, asking if they have “ever shared anything they are worried or concerned about” with the caregiver. Acceptability assessment in Phase 3 (n = 50) Upon finalising Version 3 of the SICG-C by the end of Phase 2, we conducted a final acceptability assessment with 50 caregivers, four of whom had been interviewed in Phase 2. As we separated S/N 1–13 (patient’s sources of strength and caregiver’s sources of strength) into its constituent elements to facilitate comparison with its Version 3 counterparts (Questions 13 and 14 of questionnaire in Supplementary Appendix S2), the questionnaires contained 22 paired items for the participants’ evaluation. Due to the lack of standardised benchmarks for acceptability, we defined an item as acceptable if (i) ≥ 75% of participants rated it 4 (“Very acceptable”) and (ii) ≥ 95% of participants rated it either 3 (“Acceptable”) or 4. Both criteria were satisfied for every item in Version 3 of the Guide. By contrast, only one item in Version 1 (S/N 1–1) met both criteria, with five other items (S/N 1–5, 1–6, 1–13, 1–18, 1–21) meeting only criterion (ii). (For full results, see Supplementary Table S1.3 .) Wilcoxon signed-rank tests were performed for each pairwise comparison between Versions 1 and 3. Of 22 paired comparisons, 21 showed statistically significant improvements favouring Version 3 (all p < 0.001). While participants did not consistently favour S/N 3 − 1 over S/N 1–1, the differences are slight, with the former asking “How are you doing?” and the latter “How is your ___ doing today?”. The show of concern and support for caregivers in S/N 3 − 1 was appreciated by some participants, though most were accepting of both conversation openers. These results indicate that the final version of the SICG-C is highly acceptable and that the iterative revisions led to an overall improvement in its acceptability. (Exact p-value per pairwise comparison shown in Supplementary Table S1.4 .) Discussion The participants’ preference for the final version of the adapted caregiver-oriented Serious Illness Conversation Guide (SICG-C) reflects a clear improvement in meeting caregivers’ informational and emotional needs, as well as their expectations for clinician communication. With a median rating of 4 (“Very Acceptable”) for every item, the final Guide achieved high acceptability among caregivers of PwD, indicating its suitability for adoption in clinical practice and caregiver engagement. (See Supplementary Appendix S3 for the finalised SICG-C.) Our findings affirm prior research showing that goals of care are rarely discussed within Asian families, often due to generational attitudes and cultural norms around talking about health, illness, and dying.( 23 – 26 ) In particular, the belief that filial piety entails intuitively knowing and acting on a loved one’s wishes, i.e., without needing explicit instruction, accords value to leaving things unspoken.( 23 , 26 , 27 ) Without having been informed of their loved ones’ priorities and goals, most of the participants claimed to understand what is important to them, with many considering the idea of having such a discussion with their elders uncomfortable and at odds with how they relate to each other. While involving caregivers as proxies in goals-of-care discussions is suboptimal, persistent challenges in eliciting preferences directly from PwD underscore the need for a caregiver-specific guide as an interim measure. Further research is warranted to develop and evaluate interventions that support earlier family communication about goals of care, particularly in the early stages of frailty and cognitive decline for PwD. This work complements Berry et al.’s dementia-specific SICG( 21 ) by offering an adaptation for the Singaporean context and potentially for other Asian populations, expanding the repertoire of communication tools that clinicians may draw on, adapt, and integrate into practice to support goals-of-care discussions with caregivers of PwD. At the same time, while it is intended for use with caregivers of PwD, the Guide may also be considered in scenarios involving undiagnosed cognitive impairment, patients with communication difficulties, or where treatment decision-making responsibilities have been delegated to family caregivers. This study has two main limitations. First, there is a potential risk of contrast bias where two Guide versions are presented for assessment. While participants were asked to rate each item independently and on its own merits, there remains a residual risk of contrast bias. Second, caregiver feedback was based on hypothetical reactions to individual items rather than observations of actual clinical use. This limits insight into how the adapted Guide may function in real-time conversations, where relational and emotional dynamics may influence responses. Future work may involve evaluating use of the SICG-C in clinical settings, and testing the cultural acceptability of the SICG-C in other Asian societies. Conclusion This study describes the iterative adaptation of the Serious Illness Conversation Guide for Caregivers (SICG-C) to support caregiver-clinician goals-of-care discussions for persons with dementia. Revisions improved its clarity, emotional sensitivity, and relevance. The final version was deemed highly acceptable by caregivers of PwD and offers a practical, culturally appropriate communication tool for clinical applications and training in Singapore and potentially in the wider region. Declarations Authors’ contributions AN: Formal analysis, Investigation, Methodology, Project administration, Visualization, Writing – Original draft, Writing – review & editing. VS: Methodology, Resources, Supervision, Writing – review & editing. SN: Conceptualization, Methodology, Investigation, Project administration, Resources, Supervision, Writing – review & editing. Acknowledgements The study team extends its gratitude to the Lien Centre for Palliative Care (LCPC), the Lien Foundation, and Dr Anupama Roy Chowdhury (Department Head of Geriatric Medicine, SGH) for their generous support for this project. Funding statement This work was supported by the Lien Centre for Palliative Care Research Award [Grant number: LCPC-EX22-0001]. Clinical Trial Number Not applicable. Conflict of Interest disclosure The authors declare no conflict of interest. Consent to Publish Not applicable. Data availability statement The data that support the findings of this study are available from the corresponding author upon reasonable request. Ethics approval and consent to participate All participants gave their written informed consent for inclusion before they participated in the study. The study was conducted in accordance with the Declaration of Helsinki, and the protocol was approved by the SingHealth Centralised Institutional Review Board (CIRB), reference number: 2022/2736. Patient consent statement No patients were recruited for this study. References Alzheimer’s Disease International. ADI - Dementia statistics [Internet]. [cited 2025 Mar 9]. Available from: https://www.alzint.org/about/dementia-facts-figures/dementia-statistics/ Browne B, Kupeli N, Moore KJ, Sampson EL, Davies N. Defining end of life in dementia: A systematic review. Palliat Med. 2021 Dec 1;35(10):1733–46. Sachs GA, Shega JW, Cox-Hayley D. Barriers to Excellent End-of-life Care for Patients with Dementia. J Gen Intern Med. 2004 Oct;19(10):1057–63. van der Steen JT. Dying with Dementia: What We Know after More than a Decade of Research. J Alzheimer’s Dis. 2010 Sep 28;22(1):37–55. Dewing J, Dijk S. What is the current state of care for older people with dementia in general hospitals? A literature review. Dementia. 2016 Jan 1;15(1):106–24. Ma H, Kiekhofer RE, Hooper SM, Dulaney S, Possin KL, Chiong W. Goals of Care Conversations and Subsequent Advance Care Planning Outcomes for People with Dementia. J Alzheimers Dis. 2021 Oct 12;83(4):1767–73. Sellars M, Chung O, Nolte L, Tong A, Pond D, Fetherstonhaugh D, et al. Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies. Palliat Med. 2019 Mar 1;33(3):274–90. Phenwan T, Sixsmith J, McSwiggan L, Buchanan D. A narrative review of facilitating and inhibiting factors in advance care planning initiation in people with dementia. Eur Geriatr Med. 2020 Jun;11(3):353–68. Im J, Mak S, Upshur R, Steinberg L, Kuluski K. “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study. BMC Palliat Care. 2019 Dec 12;18(1):113. Cheong K, Fisher P, Goh J, Ng L, Koh HM, Yap P. Advance care planning in people with early cognitive impairment. BMJ Support Palliat Care. 2015 Mar 1;5(1):63–9. Pacifico D, Fiordelli M, Fadda M, Serena S, Piumatti G, Carlevaro F, et al. Dementia is (not) a natural part of ageing: a cross-sectional study on dementia knowledge and misconceptions in Swiss and Italian young adults, adults, and older adults. BMC Public Health. 2022 Nov 25;22(1):2176. Kim S, Sargent‐Cox KA, Anstey KJ. A qualitative study of older and middle‐aged adults’ perception and attitudes towards dementia and dementia risk reduction. J Adv Nurs. 2015 Jul;71(7):1694–703. Dening KH, King M, Jones L, Vickestaff V, Sampson EL. Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia? PLOS ONE. 2016 Jul 13;11(7):e0159056. Paladino J, Bernacki R, Neville BA, Kavanagh J, Miranda SP, Palmor M, et al. Evaluating an Intervention to Improve Communication Between Oncology Clinicians and Patients With Life-Limiting Cancer: A Cluster Randomized Clinical Trial of the Serious Illness Care Program. JAMA Oncol. 2019 Jun 1;5(6):801. Karim S, Lupichuk S, Tan A, Sinnarajah A, Simon J. Real World Implementation of the Serious Illness Care Program in Cancer Care: Results of a Quality Improvement Initiative. J Palliat Med. 2021 Jun 1;24(6):905–9. Kumar P, Wixon-Genack J, Kavanagh J, Sanders JJ, Paladino J, O’Connor NR. Serious Illness Conversations With Outpatient Oncology Clinicians: Understanding the Patient Experience. JCO Oncol Pract. 2020 Dec;16(12):e1507–15. Paladino J, Koritsanszky L, Nisotel L, Neville BA, Miller K, Sanders J, et al. Patient and clinician experience of a serious illness conversation guide in oncology: A descriptive analysis. Cancer Med. 2020;9(13):4550–60. Geerse OP, Lamas DJ, Sanders JJ, Paladino J, Kavanagh J, Henrich NJ, et al. A Qualitative Study of Serious Illness Conversations in Patients with Advanced Cancer. J Palliat Med. 2019 Jul;22(7):773–81. Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014 Dec;174(12):1994–2003. Shilling DM, Manz CR, Strand JJ, Patel MI. Let Us Have the Conversation: Serious Illness Communication in Oncology: Definitions, Barriers, and Successful Approaches. Am Soc Clin Oncol Educ Book. 2024 Jun;44(3):e431352. Berry CE, Montgomery SH, Santulli R, Cullinan A. Adapting the Serious Illness Conversation Guide for Dementia Care. Am J Hosp Palliat Med. 2024 Aug 1;41(8):942–51. Lee ASY, Tang SN, Phua GLG, Yee ACP, Neo SHS. Adaptation of the Serious Illness Conversation Guide to Singapore’s Multicultural Setting for Patients With Heart Failure, Renal Failure, or Cancer. Palliat Med Rep. 2024 Mar 26;5(1):122–6. Cheng SY, Lin CP, Chan HY lai, Martina D, Mori M, Kim SH, et al. Advance care planning in Asian culture. Jpn J Clin Oncol. 2020 Sep 5;50(9):976–89. Pan JD, Ho KY, Guan G fen, Chang MM, Tan CR, Qiu XY, et al. Asian family members’ participation in advance care planning: An integrative review. Palliat Med. 2025 Mar 1;39(3):373–90. Pun J, Chow JCH, Fok L, Cheung KM. Role of patients’ family members in end-of-life communication: an integrative review. BMJ Open. 2023 Feb 1;13(2):e067304. Ali N, Anthony P, Lim WS, Chong MS, Poon EWH, Drury V, et al. Exploring Differential Perceptions and Barriers to Advance Care Planning in Dementia among Asian Patient–Caregiver Dyads—A Mixed-Methods Study. Int J Environ Res Public Health. 2021 Jan;18(13):7150. Mori M, Morita T. End-of-life decision-making in Asia: A need for in-depth cultural consideration. Palliat Med. 2020 Feb 1;34(2):NP4–5. Additional Declarations No competing interests reported. Supplementary Files SupplementaryAppendixS1.docx SupplementaryAppendixS2.docx SupplementaryAppendixS3.pdf Cite Share Download PDF Status: Published Journal Publication published 30 Dec, 2025 Read the published version in BMC Geriatrics → Version 1 posted Editorial decision: Revision requested 21 Oct, 2025 Reviews received at journal 08 Oct, 2025 Reviews received at journal 06 Oct, 2025 Reviews received at journal 03 Oct, 2025 Reviewers agreed at journal 29 Sep, 2025 Reviewers agreed at journal 28 Sep, 2025 Reviewers agreed at journal 26 Sep, 2025 Reviewers agreed at journal 26 Sep, 2025 Reviewers invited by journal 26 Sep, 2025 Editor assigned by journal 23 Sep, 2025 Editor invited by journal 08 Sep, 2025 Submission checks completed at journal 06 Sep, 2025 First submitted to journal 06 Sep, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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limited benefit to survival and quality of life.(\u003cspan additionalcitationids=\"CR3 CR4 CR5\" citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e–\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e)\u003c/p\u003e\u003cp\u003eEarly initiation of goals-of-care discussions are thus important in ensuring that the care PwD receive aligns with their values, priorities, and preferences. But these conversations rarely take place or occur too late in the illness trajectory, with only about 3–39% of PwD having undertaken some form of advance care planning (ACP) globally.(\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) Initiation of goals-of-care discussions with PwD and/or their surrogate decision-makers is impeded by multiple factors.(\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) Dementia, for instance, may be assumed to be a natural part of ageing by PwD and their loved ones,(\u003cspan additionalcitationids=\"CR10 CR11\" citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e–\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) a misconception that contributes to the perceived irrelevance of goals-of-care discussions and differences in end-of-life care preferences between PwD and their loved ones.(\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e)\u003c/p\u003e\u003cp\u003eThe Serious Illness Conversation Guide (SICG) is a structured communication tool developed by Ariadne Labs and tested with many patient populations across various health systems. The available evidence suggests that clinicians who use the Guide have better, earlier, and more conversations with their patients.(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e) Other beneficial outcomes include enhanced patient satisfaction with care, reduced symptoms of anxiety and depression in patients,(\u003cspan additionalcitationids=\"CR17\" citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e–\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e) and lower rates of acute care utilisation.(\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e) However, existing trials primarily focus on patient-clinician conversations; limited research has been conducted on serious illness conversations (SIC) that involve surrogate decision-makers, a gap especially salient to the delivery of quality dementia care.\u003c/p\u003e\u003cp\u003eThe only dementia-specific adaptation of the SICG currently available is the version developed by Berry and colleagues for use in the American context.(\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e) However, a review by the study team raised concerns about its acceptability and appropriateness in an Asian context. This study thus builds on a locally adapted version of the SICG(\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e) to iteratively test and refine a caregiver-oriented SICG (SICG-C), with the longer-term goal of supporting clinicians in eliciting the priorities and care preferences of PwD from their caregivers and delivering patient-centred, values-aligned dementia care.\u003c/p\u003e\n\u003ch3\u003eStudy Aims\u003c/h3\u003e\n\u003cp\u003eThis study aimed to\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eAdapt and iteratively revise the SICG-C; and\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eAssess the acceptability of the finalised SICG-C among caregivers of PwD.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003cp\u003e\u003c/p\u003e\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003cdiv id=\"Sec4\" class=\"Section3\"\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"Methods","content":"\u003ch2\u003eSettings and participants\u003c/h2\u003e\u003cp\u003eParticipants were adult caregivers of PwD, recruited from the outpatient Geriatric Medicine clinic at Singapore General Hospital (SGH). Eligible participants were ≥ 21 years, aware of the patient’s diagnosis, primary caregivers or spokespersons of the patient, able to speak English or Mandarin. PwD and domestic helpers were excluded. Purposive sampling was used to ensure diversity in caregiver demographics and dementia severity among their care recipients. Written informed consent was obtained from all participants prior to initiation of study activities.\u003c/p\u003e\n\u003ch3\u003eStudy design and procedures\u003c/h3\u003e\n\u003cp\u003eThis study was conducted in three phases: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Pre-test adaptation of SICG to develop the SICG-C; (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) two rounds of iterative client-testing and refinement of the SICG-C; and (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) a final survey-based assessment of acceptability to caregivers.\u003c/p\u003e\n\u003ch3\u003ePhase 1: SICG-C development\u003c/h3\u003e\n\u003cp\u003eThe adaptation process began with the English-language version of the SICG previously adapted for use in Singapore. Additional reference materials included the Serious Illness Conversation Guide for Dementia (SICG-D) developed by Berry et al. and various clinician-developed communication tools used in local practice. Drafts were reviewed by VS and SN, and their feedback was incorporated into the initial version of the SICG-C.\u003c/p\u003e\n\u003ch3\u003ePhase 2: Iterative testing and revision\u003c/h3\u003e\n\u003cp\u003eTwo rounds of interviews were conducted. In Round 1 (October 2024), we recruited 6 caregivers for structured interviews to rapidly identify key areas for improvement and generate Version 2 of the Guide. In Round 2 (November 2024), we recruited 13 caregivers to reach thematic saturation.\u003c/p\u003e\u003cp\u003eDuring these interviews, participants were read each item from the SICG-C and asked to rate its acceptability using a three-point scale: 1\u0026ndash;Unacceptable; 2\u0026ndash;Acceptable with changes; 3\u0026ndash;Acceptable as is. They were encouraged to elaborate on their ratings, with attention to clarity, tone, and associations evoked. In Round 2, participants were shown both versions of each item (Version 1 followed by Version 2) and asked to evaluate them independently to reduce the risk of contrast bias. Interviews were audio-recorded, transcribed, and thematically analysed to guide revisions after each round.\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003ePhase 3: Final acceptability assessment\u003c/h2\u003e\u003cp\u003eA final acceptability assessment was conducted (March\u0026ndash;May 2025) using a structured questionnaire designed specifically for this study. Using a 4-point Likert scale (1= \u0026ldquo;Very unacceptable\u0026rdquo; to 4= \u0026ldquo;Very acceptable\u0026rdquo;), participants were asked to rate two versions of each SICG-C item (Version 1 vs. Version 3). A target sample size of 50 was selected to provide adequate power for Wilcoxon signed-rank tests, assuming moderate effect size (P(X\u0026thinsp;\u0026gt;\u0026thinsp;Y)\u0026thinsp;=\u0026thinsp;0.67), α\u0026thinsp;=\u0026thinsp;0.05, and power\u0026thinsp;=\u0026thinsp;0.80.\u003c/p\u003e\u003cp\u003eTo minimise order effects, two versions of the questionnaire were developed: in one, Version 1 was presented first for each item tested; in the other, Version 3 appeared first (questionnaires in Supplementary Appendix S2). These were alternately administered to each successively recruited participant. Questionnaires were self-administered or completed with assistance from the recruiter upon request. Data were analysed using Excel and R (version 4.2.0).\u003c/p\u003e\u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eA total of 69 participants were purposively recruited (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). With four participants from Rounds 1 or 2 re-approached for survey in Phase 3, the total number of unique participants is 65.\u003c/p\u003e\u003cp\u003eAcross all rounds, most participants were female (ranging from 53.8% in Round 2 to 83.3% in Round 1), with mean ages decreasing slightly over successive rounds (59.5 years in Round 1, 57.2 years in Round 2, and 53.3 years in Phase 3). Most participants were of Chinese ethnicity and had completed post-secondary education. The majority were employed full-time and were adult children of the person with dementia (PwD). Alzheimer's disease was the most commonly reported diagnosis, followed by mixed dementia and vascular dementia. The majority of PwD were in the mild or moderate stages of dementia based on the Functional Assessment Staging Tool (FAST) for dementia.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eParticipant characteristics\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"4\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eRound 1\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eRound 2\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003eRound 3\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003en\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003e13\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003e50\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eFemales: n (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5 (83.3%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e7 (53.8%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e37 (74.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eAge: Mean (sd)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e59.5 (10.4)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e57.2 (14.2)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e53.3 (9.5)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEthnicity: n (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChinese\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5 (83.3%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e10 (76.9%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e40 (80.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eIndian\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2 (15.4%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e4 (8.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMalay\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1 (7.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e6 (12.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eReligion: n (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBuddhist\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2 (15.4%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e14 (28.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChristian\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3 (50.0%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e5 (38.5%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e8 (16.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFree thinker\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3 (23.1%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e13 (26.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eHindu\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1 (7.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e3 (6.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMuslim\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2 (15.4%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e7 (14.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eOthers\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e5 (10.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eHighest educational qualification: n (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePrimary school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e1 (2.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSecondary school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1 (7.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e10 (20.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePost-secondary\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5 (83.3%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e12 (92.3%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e39 (78.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eOccupational status: n (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eWorking full-time\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4 (66.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e5 (38.5%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e31 (62.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eWorking part-time\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1 (7.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e4 (8.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUnemployed\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2 (15.4%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e8 (16.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRetired\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2 (33.3%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e5 (38.5%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e7 (14.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eRelation to patient/ PwD: n (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChild\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3 (50.0%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e10 (76.9%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e42 (84.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSibling\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e2 (4.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSpouse\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e2 (4.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eOthers\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3 (23.1%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e4 (8.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePatient\u0026rsquo;s dementia subtype: n (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAlzheimer's\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5 (83.3%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e9 (69.2%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e26 (52.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFrontotemporal\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e1 (2.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMixed\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3 (23.1%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e16 (32.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eVascular\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1 (7.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e7 (14.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePatient's dementia staging (FAST): n (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMild\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e5 (38.5%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e22 (44.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMild-to-moderate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1 (7.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e7 (14.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eModerate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3 (50.0%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e5 (38.5%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e18 (36.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eModerate-to-severe\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2 (15.4%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e2 (4.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSevere\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (16.7%)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e1 (2.0%)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\n\u003ch3\u003eRating tabulation for Round 1 of Phase 2\u003c/h3\u003e\n\u003cp\u003eA total of 21 items were tested with 6 caregiver participants. Only 10 items were rated \u0026ldquo;Acceptable as is\u0026rdquo; (rating\u0026thinsp;=\u0026thinsp;3) by at least 5 participants (\u0026gt;\u0026thinsp;75%), of which 4 items were related to summative or concluding remarks found at the end of the Guide.\u003c/p\u003e\u003cp\u003eKey areas for improvement included exploration of acceptable tradeoffs (S/N 1\u0026ndash;16), critical abilities (S/N 1\u0026ndash;14, 1\u0026ndash;15), understanding of patient\u0026rsquo;s condition (S/N 1\u0026ndash;4), among others. Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e shows the 12 items which were rated \u0026ldquo;Acceptable as is\u0026rdquo; (rating\u0026thinsp;=\u0026thinsp;3) by fewer than 75% of participants (n\u0026thinsp;\u0026lt;\u0026thinsp;5), of which seven were rated \u0026ldquo;Unacceptable\u0026rdquo; (rating\u0026thinsp;=\u0026thinsp;1) from at least one participant (S/N 1\u0026ndash;3, 1\u0026ndash;4, 1\u0026ndash;5, 1\u0026ndash;12, 1\u0026ndash;14, 1\u0026ndash;15, 1\u0026ndash;16). (See Supplementary Table \u003cspan refid=\"MOESM1\" class=\"InternalRef\"\u003eS1.1\u003c/span\u003e in Supplementary Appendix S1 for detailed results.)\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eResults from Round 1 \u0026ndash; Items requiring revision (n\u0026thinsp;=\u0026thinsp;6)\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eS/N\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eQuestion/ prompt topic\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eNo. of responses with rating of 3 (n\u0026thinsp;=\u0026thinsp;6)\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;I will be using a guide and taking notes during our talk in case I forget something.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\" morerows=\"1\" rowspan=\"2\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eTradeoffs\u003c/b\u003e: \u0026ldquo;If your ____\u0026rsquo;s condition gets worse, how much treatment/ interventions would you think he/ she is willing to go through for the possibility of living longer?\u0026rdquo; (provide examples: ICU/ dialysis/ surgery/ feeding tubes/ more tests/ others)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;What have you been told about your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\" morerows=\"2\" rowspan=\"3\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eCritical abilities (early in trajectory)\u003c/b\u003e: \u0026ldquo;What activities brought joy and meaning to your ___\u0026rsquo;s life?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;What activities do you enjoy doing with your _____?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;17\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eFamily/ social support\u003c/b\u003e: \u0026ldquo;How are you and your family coping during this difficult time?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;What would you like to know about your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\" morerows=\"6\" rowspan=\"7\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eTime (for doctors only)\u003c/b\u003e: \u0026ldquo;I wish this was not the case. It is also possible that time may be as short as ___ (express as a range, e.g. days to weeks, weeks to months, months to a year).\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003ePriorities (now)\u003c/b\u003e: \u0026ldquo;What do you think are your ___\u0026rsquo;s most important priorities now?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;Are these your priorities for him/ her too?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;11\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003ePriorities (future)\u003c/b\u003e: \u0026ldquo;If your ___\u0026rsquo;s health gets worse, what do you think would be his/ her most important priorities?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;Are these your priorities for him/ her too?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eWorries\u003c/b\u003e: \u0026ldquo;What would you say are your____\u0026rsquo;s biggest worries?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u003cb\u003eCaregiver\u0026rsquo;s worries\u003c/b\u003e: \u0026ldquo;What are your biggest worries?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;15\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eCritical abilities (late in trajectory)\u003c/b\u003e: \u0026ldquo;Given your ____\u0026rsquo;s condition, what activities do you think he/ she would like to continue doing?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;19\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;Keeping that in mind, and what we know about your ____\u0026rsquo;s condition, let\u0026rsquo;s make the best of this situation. I recommend that we ________.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\u003ch2\u003eQualitative findings and rationale for key revisions to Version 1 of SICG-C\u003c/h2\u003e\u003cp\u003eInterviews with caregivers yielded three key themes that directly informed revisions to the SICG-C. Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e provides a side-by-side comparison of Versions 1 and 2 of the Guide to illustrate the revisions introduced and discussed below. Guide items in which no changes were made are shaded grey.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eSide-by-side view of Versions 1 and 2 of SICG-C\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"4\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003eVersion 1\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e\u003cp\u003eVersion 2\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eS/N\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eGuide item\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eS/N\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eGuide item\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;How is your ____ doing today?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026thinsp;\u0026minus;\u0026thinsp;1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;How is your ____ doing today?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;Is it okay if we talk together about your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;Can we talk about your ___\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;I will be using a guide and taking notes during our talk in case I forget something.\u0026rdquo; (Use if appropriate)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;I will be using a guide and taking notes during our discussion.\u0026rdquo; (Use if appropriate)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;What have you been told about your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;What do you know about your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;What would you like to know about your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;Is there anything that you\u0026rsquo;d like to find out about your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;I would like to tell/ inform/ share with you my understanding of where things are right now with your ____\u0026rsquo;s condition \u0026ndash; is that okay?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;Can I tell/ inform/ share with you where things currently stand with your ___\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eUncertain\u003c/b\u003e: \u0026ldquo;I hope that your ____ will stay as well as possible for a long time and we will work towards that. It is also possible that his/ her health could change quickly. I think it is important that we prepare for that possibility.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eUncertain\u003c/b\u003e: \u0026ldquo;I hope that your ____ will stay as well as possible for a long time and we will work towards that. It is also possible that his/ her health could change quickly. I think it is important that we prepare for that possibility.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eTime (for doctors only)\u003c/b\u003e: \u0026ldquo;I wish this was not the case. It is also possible that time may be as short as ___ (express as a range, e.g. days to weeks, weeks to months, months to a year).\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eTime (for doctors only)\u003c/b\u003e: \u0026ldquo;I would like to know if understanding the prognosis/ lifespan for your ___ is important to you.\u0026rdquo;\u003c/p\u003e\u003cp\u003e(\u003cem\u003eIf yes\u003c/em\u003e) \u0026ldquo;We cannot predict exactly how much time your ___ will have, but based on what we know about his/ her health, we estimate that he/ she has about ____ (express as a range, e.g. days to weeks, weeks to months, months to a year).\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eFunction\u003c/b\u003e: \u0026ldquo;I hope ___ will feel as well as possible for a long time, and we will work towards that. It is also possible that his/ her ____\u0026rsquo;s (e.g., strength, energy level, alertness, ability to do daily activities) will be affected.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eFunction\u003c/b\u003e: \u0026ldquo;I hope your ___ will stay well. It\u0026rsquo;s possible that your ____\u0026rsquo;s (e.g. strength, energy level, alertness, ability to do daily activities) will be affected, depending on the medical issues and problems that arise over time.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003ePriorities (now)\u003c/b\u003e: \u0026ldquo;What do you think are your ___\u0026rsquo;s most important priorities now?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;Are these your priorities for him/ her too?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003ePriorities\u003c/b\u003e: \u0026ldquo;Has your ___ shared with you what is important to him/ her?\u0026rdquo;\u003c/p\u003e\u003cp\u003e(\u003cem\u003eIf yes\u003c/em\u003e) \u0026ldquo;What did he/ she say is important to him/ her?\u0026rdquo;\u003c/p\u003e\u003cp\u003e(\u003cem\u003eIf no\u003c/em\u003e) \u0026ldquo;Tell me more about your ___. What was he/ she like and what do you think is important to him/ her?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;11\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003ePriorities (future)\u003c/b\u003e: \u0026ldquo;If your ___\u0026rsquo;s health gets worse, what do you think would be his/ her most important priorities?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;Are these your priorities for him/ her too?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;11\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003ePriorities (future)\u003c/b\u003e: (\u003cem\u003eIf answer to preceding question is \u0026ldquo;yes\u0026rdquo;\u003c/em\u003e) \u0026ldquo;If your ___\u0026rsquo;s health gets worse, do you think there\u0026rsquo;d be any changes to what\u0026rsquo;s important to him/ her?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;From your point of view, are there other things that you think are important for your ___\u0026rsquo;s care that we have not discussed or planned for?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eWorries\u003c/b\u003e: \u0026ldquo;What would you say are your____\u0026rsquo;s biggest worries?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u003cb\u003eCaregiver\u0026rsquo;s worries\u003c/b\u003e: \u0026ldquo;What are your biggest worries?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eCaregiver\u0026rsquo;s worries\u003c/b\u003e: \u0026ldquo;What worries you about your ___?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eSources of strength\u003c/b\u003e: \u0026ldquo;What do you think gives your ____ strength living with his/ her condition?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u003cb\u003eCaregiver\u0026rsquo;s sources of strength\u003c/b\u003e: \u0026ldquo;What gives you strength as you care for ____?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eSources of strength\u003c/b\u003e: \u0026ldquo;What brings your ___ comfort or peace in his/ her daily life?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u003cb\u003eCaregiver\u0026rsquo;s sources of strength\u003c/b\u003e: \u0026ldquo;What gives you/ your family strength as you care for ____?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eCritical abilities (early in trajectory)\u003c/b\u003e: \u0026ldquo;What activities brought joy and meaning to your ___\u0026rsquo;s life?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;What activities do you enjoy doing with your _____?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eCritical abilities (earlier in trajectory)\u003c/b\u003e: \u0026ldquo;What activities does your ___ enjoy doing and would like to continue?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;15\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eCritical abilities (late in trajectory)\u003c/b\u003e: \u0026ldquo;Given your ____\u0026rsquo;s condition, what activities do you think he/ she would like to continue doing?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;15\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eCritical abilities (later in trajectory)\u003c/b\u003e: \u0026ldquo;To help me make better plans for your ____\u0026rsquo;s care, I\u0026rsquo;d like to find out what abilities/ daily functions are important to him/ her.\u0026rdquo; (\u003cem\u003ePrompt using Activities of Daily Living\u003c/em\u003e)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eTradeoffs\u003c/b\u003e: \u0026ldquo;If your ____\u0026rsquo;s condition gets worse, how much treatment/ interventions would you think he/ she is willing to go through for the possibility of living longer?\u0026rdquo; (provide examples: ICU/ dialysis/ surgery/ feeding tubes/ more tests/ others)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eTradeoffs\u003c/b\u003e: \u0026ldquo;Every treatment has its pros and cons, and they can affect your ___\u0026rsquo;s quality of life in different ways. I\u0026rsquo;d like to find out what additional measures your ___ can accept if his/ her health gets worse.\u0026rdquo;\u003c/p\u003e\u003cp\u003e(\u003cem\u003eProvide examples of interventions that may be relevant to patient, e.g. ICU, dialysis, surgery, feeding tubes, more tests, etc. Describe potential benefits and drawbacks\u003c/em\u003e.)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;17\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eFamily/ social support\u003c/b\u003e: \u0026ldquo;How are you and your family coping during this difficult time?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;17\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eFamily/ social support\u003c/b\u003e: \u0026ldquo;How are you/ your family doing in managing ___\u0026rsquo;s care?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;18\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;I\u0026rsquo;ve heard you say that ____ is important to your ____.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;18\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;I\u0026rsquo;ve heard you say that ____ is important to your ____.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;19\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;Keeping that in mind, and what we know about your ____\u0026rsquo;s condition, let\u0026rsquo;s make the best of this situation. I recommend that we ________.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;19\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;Keeping that in mind, and what we know about ___\u0026rsquo;s condition, I recommend/ suggest _______.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;20\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;This will help us make sure that your ____\u0026rsquo;s treatment/ care plans reflect what\u0026rsquo;s important to him/ her.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;20\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;This will help us make sure that your ____\u0026rsquo;s treatment/ care plans reflect what\u0026rsquo;s important to him/ her.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;21\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;Is this plan ok to you? If you think of anything else later, we can revisit this conversation another time.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2\u0026ndash;21\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;Is this plan ok? If you think of anything else, we can talk about this again at your next visit.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003e1. Expectations of clinical authority\u003c/span\u003e\u003c/p\u003e\u003cp\u003eCaregivers responded negatively to the phrase \u003cem\u003e\u0026ldquo;in case I forget something\u0026rdquo;\u003c/em\u003e (S/N 1\u0026ndash;3), interpreting it as a sign of diminished professionalism and competence. For many, confidence in the clinician\u0026rsquo;s expertise and diligence was foundational to their trust in the clinician and their recommendations. To preserve the impression of clinical authority, S/N 1\u0026ndash;3 was revised to \u0026ldquo;I will be using a guide and taking notes during our discussion\u0026rdquo; (S/N 2\u0026ndash;3).\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003e2. Divergent forms of expertise\u003c/span\u003e\u003c/p\u003e\u003cp\u003eWhile caregivers valued clinical knowledge, they emphasised the distinctiveness of their own experiential and relational understanding of the PwD\u0026rsquo;s needs, behaviours, and lifestyle preferences. In response to S/N 1\u0026ndash;4, several participants noted that although clinicians possess biomedical knowledge, caregivers possess a more holistic, person-centred familiarity that is \u0026ldquo;more than what the doctor said.\u0026rdquo; In recognition of the person-centred knowledge of the caregiver, S/N 1\u0026ndash;4 was revised to \u0026ldquo;What do you know about your ___\u0026rsquo;s condition?\u0026rdquo; (S/N 2\u0026ndash;4)\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003e3. Challenges in articulating the priorities and critical abilities of PwD\u003c/span\u003e\u003c/p\u003e\u003cp\u003eCaregivers reported varying degrees of difficulty in identifying what the PwD prioritised, valued, or feared, largely due to the cognitive decline faced by PwD and the absence of prior goals-of-care conversations. In trying to speak on behalf of their loved ones, most inadvertently projected their own views. This tendency risks undermining the very purpose of serious illness conversations, which aim to elicit what the PwD would have wanted if they retained decisional capacity.\u003c/p\u003e\u003cp\u003eIn response, S/N 1\u0026ndash;10 was revised to explicitly ask whether the PwD had previously expressed what was important to them. If they had not, the Guide prompts caregivers to reflect on the patient\u0026rsquo;s character and preferences prior to cognitive decline, before considering what their goals and priorities might be now. Similarly, we revised the question on critical abilities to ask which activities of daily living (ADLs) are important to the PwD (S/N 2\u0026ndash;15), as opposed to asking them to reflect on activities that they enjoy or would like to continue to do, reflecting a shift from aspirational to realistic concerns that better align with the personal experience of dementia.\u003c/p\u003e\u003cp\u003eWhile participants were largely accepting of the frailty of their loved ones and took well to prognostic cues indicated in S/N 1\u0026ndash;7, 1\u0026ndash;8, and 1\u0026ndash;9, one participant suggested that the question about remaining time (S/N 1\u0026ndash;8) may be made less abrupt and jarring with the addition of a preference-based prompt. In S/N 2\u0026ndash;8, therefore, the Guide asked if the caregiver would like to know how much time their loved one might have.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003eRating tabulation for Round 2 of Phase 2\u003c/h2\u003e\u003cp\u003eThirteen participants were asked to compare original (Version 1) and revised (Version 2) versions of the SICG-C using the same 3-point acceptability scale from Round 1 and elaborate on their ratings. 21 items were presented, of which 17 were paired comparisons. Revisions led to improved acceptability ratings across all 17 items except S/N 2\u0026ndash;2, which received mixed reviews with some finding S/N 2\u0026ndash;2 \u0026ldquo;less serious\u0026rdquo; and \u0026ldquo;formal\u0026rdquo;, while others claiming that it stated the obvious.\u003c/p\u003e\u003cp\u003eThe greatest improvements in acceptability, defined as an increase in the number of participants giving a rating of 3, were observed for S/N 2\u0026ndash;16, which gained 10 additional ratings of 3, and S/N 2\u0026ndash;9, 2\u0026ndash;13, 2\u0026ndash;15, which gained 9 additional ratings of 3. The smallest improvements were seen in S/N 2\u0026ndash;3, 2\u0026ndash;11, and 2\u0026ndash;19, for which an additional 2 participants gave a rating of 3. No improvement was recorded for S/N 2\u0026ndash;2, likely because the revision was slight. (See Supplementary Table \u003cspan refid=\"MOESM1\" class=\"InternalRef\"\u003eS1.2\u003c/span\u003e for detailed results.)\u003c/p\u003e\u003cp\u003eFour items (S/N 1\u0026ndash;1, 1\u0026ndash;7, 1\u0026ndash;18, and 1\u0026ndash;20) were retained in Version 2 without revision. Three of these were rated \u0026ldquo;Acceptable as is\u0026rdquo; (rating\u0026thinsp;=\u0026thinsp;3) from at least 11 of 13 participants (\u0026gt;\u0026thinsp;75%). S/N 2\u0026ndash;7 (Version 2), however, was deemed acceptable by only five participants, suggesting the need for further refinement and exploration of participant feedback.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\u003ch2\u003eQualitative findings and rationale for further revisions to Version 2 of SICG-C\u003c/h2\u003e\u003cp\u003eMost participants in Round 2 interviews found Version 2 of the SICG-C acceptable and affirmed the revisions made. Nevertheless, several items merited closer attention, particularly S/N 2\u0026ndash;7 and 2\u0026ndash;11. Beyond semantic refinements, two key themes were identified and used to guide further iterations of the Guide. Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e contrasts Versions 2 with Version 3 of the SICG-C to foreground the changes made and indicate how items in one version correspond to those in the other.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eSide-by-side view of Versions 2 and 3 of SICG-C.\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"4\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003eVersion 2\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c4\" namest=\"c3\"\u003e\u003cp\u003eVersion 3\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eS/N\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eGuide item\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eS/N\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003eGuide item\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026thinsp;\u0026minus;\u0026thinsp;1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;How is your ____ doing today?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026thinsp;\u0026minus;\u0026thinsp;1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;How are you doing?\"\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;Can we talk about your ___\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026thinsp;\u0026minus;\u0026thinsp;2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;Is it okay if we discuss your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;I will be using a guide and taking notes during our discussion.\u0026rdquo; (\u003cem\u003eUse if appropriate\u003c/em\u003e)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;I will be using a guide to structure our discussion and to take notes for future reference.\u0026rdquo; (\u003cem\u003eUse if appropriate\u003c/em\u003e)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;What do you know about your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;What do you know about your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;Is there anything that you\u0026rsquo;d like to find out about your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;Is there anything that you\u0026rsquo;d like to find out about your ____\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;Can I tell/ inform/ share with you where things currently stand with your ___\u0026rsquo;s condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;May I tell/ inform/ share with you my assessment of your ___\u0026rsquo;s current condition?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eUncertain\u003c/b\u003e: \u0026ldquo;I hope that your ____ will stay as well as possible for a long time and we will work towards that. It is also possible that his/ her health could change quickly. I think it is important that we prepare for that possibility.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eUncertain trajectory\u003c/b\u003e: \u003c/p\u003e\u003cp\u003e\u0026ldquo;While we continue to do our best for your ___\u0026rsquo;s care, it is possible that your ___'s condition could change, resulting in differences in his/ her health/ strength/ energy level/ alertness/ ability to do daily activities. I think it is important we work together to prepare for what may lie ahead.\u0026rdquo;\u003c/p\u003e\u003cp\u003e(\u003cem\u003eWhere appropriate, provide reassurance that you wish to work with the caregiver to plan ahead while the patient\u0026rsquo;s condition is stable/ manageable.)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eTime (for doctors only)\u003c/b\u003e: \u0026ldquo;I would like to know if understanding the prognosis/ lifespan for your ___ is important to you.\u0026rdquo;\u003c/p\u003e\u003cp\u003e(\u003cem\u003eIf yes\u003c/em\u003e) \u0026ldquo;We cannot predict exactly how much time your ___ will have, but based on what we know about his/ her health, we estimate that he/ she has about ____ (express as a range, e.g. days to weeks, weeks to months, months to a year).\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eTime (for doctors only)\u003c/b\u003e: \"I would like to know if you would like to discuss the prognosis/ how much time your ___ could have\". \u003c/p\u003e\u003cp\u003e(\u003cem\u003eIf yes\u003c/em\u003e) \u0026ldquo;We cannot predict exactly how much time your ___ has, but based on what we know, we estimate that he/ she has about ____ (express as a range, e.g. days to weeks, weeks to months, months to a year).\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u003cem\u003e(Where appropriate, provide assurance of support.)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eFunction\u003c/b\u003e: \u0026ldquo;I hope your ___ will stay well. It\u0026rsquo;s possible that your ____\u0026rsquo;s (e.g. strength, energy level, alertness, ability to do daily activities) will be affected, depending on the medical issues and problems that arise over time.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cem\u003eNote: S/N 2\u0026ndash;7 and 2\u0026ndash;9 have been merged to form S/N 3\u0026ndash;7.\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003ePriorities\u003c/b\u003e:\u003c/p\u003e\u003cp\u003e\u0026ldquo;Has your ___ shared with you what is important to him/ her?\u0026rdquo;\u003c/p\u003e\u003cp\u003e(\u003cem\u003eIf yes\u003c/em\u003e) \u0026ldquo;What did he/ she say is important to him/ her?\u0026rdquo;\u003c/p\u003e\u003cp\u003e(\u003cem\u003eIf no\u003c/em\u003e) \u0026ldquo;Tell me more about your ___. What was he/ she like and what do you think is important to him/ her?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003ePatient's priorities\u003c/b\u003e: \u003c/p\u003e\u003cp\u003e\u0026ldquo;Has your ___ shared with you what is important to him/ her?\u0026rdquo;\u003c/p\u003e\u003cp\u003e(\u003cem\u003eIf yes\u003c/em\u003e) \u0026ldquo;What did he/ she say is important to him/ her?\u0026rdquo; \u003c/p\u003e\u003cp\u003e(\u003cem\u003eIf no\u003c/em\u003e) \u0026ldquo;Tell me more about your ___. What do you think is important to him/ her?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;11\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003ePriorities (future)\u003c/b\u003e: (\u003cem\u003eIf answer to preceding question is \u0026ldquo;yes\u0026rdquo;\u003c/em\u003e) \u0026ldquo;If your ___\u0026rsquo;s health gets worse, do you think there\u0026rsquo;d be any changes to what\u0026rsquo;s important to him/ her?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;From your point of view, are there other things that you think are important for your ___\u0026rsquo;s care that we have not discussed or planned for?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eCaregiver\u0026rsquo;s priorities\u003c/b\u003e: \u003c/p\u003e\u003cp\u003e(\u003cem\u003eDescribe what disease progression may look like for patient, highlight commonly seen symptoms\u003c/em\u003e)\u003c/p\u003e\u003cp\u003e\u0026ldquo;From your point of view, what are some important things we should take note of when managing your ___'s condition?\"\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eCaregiver\u0026rsquo;s worries\u003c/b\u003e: \u0026ldquo;What worries you about your ___?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;11\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eWorries\u003c/b\u003e\u003c/p\u003e\u003cp\u003e\"Has your ____ ever shared with you his/ her concerns or worries? What are they?\"\u003c/p\u003e\u003cp\u003e\u0026ldquo;What worries you about your ___?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e\u003cp\u003e2\u0026ndash;13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\" morerows=\"1\" rowspan=\"2\"\u003e\u003cp\u003e\u003cb\u003eSources of strength\u003c/b\u003e: \u0026ldquo;What brings your ___ comfort or peace in his/ her daily life?\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u003cb\u003eCaregiver\u0026rsquo;s sources of strength\u003c/b\u003e: \u0026ldquo;What gives you/ your family strength as you care for ____?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eSources of strength\u003c/b\u003e: \u0026ldquo;What brings your ___ comfort or peace in his/ her daily life?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eCaregiver\u0026rsquo;s sources of strength\u003c/b\u003e: \u0026ldquo;What gives you/ your family strength as you care for ____?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eCritical abilities (earlier in trajectory)\u003c/b\u003e: \u0026ldquo;What activities does your ___ enjoy doing and would like to continue?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eCritical abilities (earlier in trajectory)\u003c/b\u003e: \u0026ldquo;What activities does your ___ enjoy doing and would like to continue?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;15\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eCritical abilities (later in trajectory)\u003c/b\u003e: \u0026ldquo;To help me make better plans for your ____\u0026rsquo;s care, I\u0026rsquo;d like to find out what abilities/ daily functions are important to him/ her.\u0026rdquo; (\u003cem\u003ePrompt using Activities of Daily Living\u003c/em\u003e)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;15\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eCritical abilities (later in trajectory)\u003c/b\u003e: \u0026ldquo;To help me make better plans for your ____\u0026rsquo;s care, I\u0026rsquo;d like to find out what abilities/ daily functions are important to him/ her.\u0026rdquo; (\u003cem\u003ePrompt using Activities of Daily Living)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eTradeoffs\u003c/b\u003e: \u0026ldquo;Every treatment has its pros and cons, and they can affect your ___\u0026rsquo;s quality of life in different ways. I\u0026rsquo;d like to find out what additional measures your ___ can accept if his/ her health gets worse.\u0026rdquo;\u003c/p\u003e\u003cp\u003e(\u003cem\u003eProvide examples of interventions that may be relevant to patient, e.g. ICU, dialysis, surgery, feeding tubes, more tests, etc. Describe potential benefits and drawbacks\u003c/em\u003e.)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eTradeoffs\u003c/b\u003e: \u0026ldquo;Every treatment has its pros and cons, and they can affect your ___\u0026rsquo;s quality of life in different ways. I\u0026rsquo;d like to discuss with you what you think are additional measures your ___ can accept if his/ her health gets worse.\u0026rdquo; \u003c/p\u003e\u003cp\u003e\u003cem\u003e(Provide examples of interventions that may be relevant to patient, e.g. ICU, dialysis, surgery, feeding tubes, more tests, etc. Describe potential benefits and drawbacks.)\u003c/em\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;17\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eFamily/ social support\u003c/b\u003e: \u0026ldquo;How are you/ your family doing in managing ___\u0026rsquo;s care?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;17\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u003cb\u003eFamily/ Social support\u003c/b\u003e: \u0026ldquo;How are you/ your family doing in managing ___\u0026rsquo;s care?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;18\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;I\u0026rsquo;ve heard you say that ____ is important to your ____.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;18\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;I\u0026rsquo;ve heard you say that ____ is important to your ____, and that ____ is important to you/ your family.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;19\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;Keeping that in mind, and what we know about ___\u0026rsquo;s condition, I recommend/ suggest _______.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\" morerows=\"1\" rowspan=\"2\"\u003e\u003cp\u003e3\u0026ndash;19\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\" morerows=\"1\" rowspan=\"2\"\u003e\u003cp\u003e\u0026ldquo;To ensure that your ___\u0026rsquo;s care reflects what\u0026rsquo;s important to your ___ and to you/ your family, may I suggest/ propose that ____?\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;20\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;This will help us make sure that your ____\u0026rsquo;s treatment/ care plans reflect what\u0026rsquo;s important to him/ her.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u0026ndash;21\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026ldquo;Is this plan ok? If you think of anything else, we can talk about this again at your next visit.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3\u0026ndash;20\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e\u0026ldquo;Is this plan ok? If you think of anything else, we can talk about this again at your next visit.\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003e1. Worries and misconceptions over implied poor prognosis\u003c/span\u003e\u003c/p\u003e\u003cp\u003e S/N 2\u0026ndash;7 (\u0026ldquo;I hope your ___ will stay as well as possible\u0026hellip;\u0026rdquo;) elicited mixed responses from the participants. While some appreciated its empathetic tone, others found the phrasing disconcerting, interpreting it as suggestive of a poor prognosis. Nonetheless, there was broad agreement that reassurance about ongoing clinical oversight and support was helpful. In response, we revised the prompt to begin with \u0026ldquo;While we continue to do our best to care for your ___,\u0026rdquo; thereby shifting the emphasis from prognosis to the clinician\u0026rsquo;s commitment to continued care. The revised prompt nonetheless maintains the possibility \u0026ldquo;that (the PwD\u0026rsquo;s) condition could change\u0026rdquo; (S/N 3\u0026ndash;7).\u003c/p\u003e\u003cp\u003e Participants also expressed a need for greater context at the outset of the conversation, namely, clarity on why the clinician was initiating the discussion and what was meant by \u0026ldquo;his/her health could change quickly.\u0026rdquo; Several participants did not view disease progression as a clinical concern, but they responded positively nonetheless when interviewers clarified that the conversation was not prompted by worsening health but aimed at preparing for the future.\u003c/p\u003e\u003cp\u003e Drawing on these insights, we merged S/N 2\u0026ndash;7 and 2\u0026ndash;9 into a single prompt (S/N 3\u0026ndash;7), included a note to clinicians to provide reassurance to the caregivers, and reinforced a sense of partnership by inviting caregivers to \u0026ldquo;work together to prepare for what may lie ahead.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003e2. Uncertainty and interpolation in caregivers\u0026rsquo; accounts of patients\u0026rsquo; priorities\u003c/span\u003e\u003c/p\u003e\u003cp\u003eS/N 2\u0026ndash;11 presented considerable challenges for participants. Many felt ill-equipped to speak to the potential changes in their loved one\u0026rsquo;s priorities, particularly as PwD were often perceived to lack the cognitive capacity to hold or express even present-day priorities. None of the participants have had a discussion with their loved ones about their goals of care nor had they been informed on their priorities. As in Round 1 interviews, participants frequently substituted their own priorities for those of the PwD. Some caregivers of persons with moderate to severe dementia expressed discomfort and moral uncertainty at whether their assumptions aligned with what their loved ones would have wanted, had they retained decision-making capacity.\u003c/p\u003e\u003cp\u003eWe thus considered a question about the PwD\u0026rsquo;s future priorities to be unnecessary, and that any potentially relevant information about their goals of care would be elicited through the preceding prompt. As such, S/N 3\u0026ndash;10 (corresponding to 2\u0026ndash;11) asks caregivers, \u0026ldquo;What are some important things we should take note of when managing your ___\u0026rsquo;s condition?\u0026rdquo; For added clarity, this question includes a reminder for clinicians to \u0026ldquo;Describe what disease progression may look like for the patient,\u0026rdquo; recognising the clinician\u0026rsquo;s role in contextualising the discussion based on the patient\u0026rsquo;s dementia subtype and clinical history.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\u003ch2\u003eDistinguishing caregiver\u0026rsquo;s worries from PwD\u0026rsquo;s\u003c/h2\u003e\u003cp\u003e Although not directly prompted by participant feedback, we revised S/N 2\u0026ndash;12 to ensure consistency in how the Guide distinguishes between patient and caregiver perspectives. The original version asked caregivers only about their own worries regarding the patient. However, cognisant that certain PwD\u0026mdash;especially those in the earlier stages of disease\u0026mdash;may still be able to express their worries and concerns, we applied the same recall-based framing used for S/N 3\u0026ndash;9 to S/N 3\u0026ndash;11, asking if they have \u0026ldquo;ever shared anything they are worried or concerned about\u0026rdquo; with the caregiver.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\u003ch2\u003eAcceptability assessment in Phase 3 (n\u0026thinsp;=\u0026thinsp;50)\u003c/h2\u003e\u003cp\u003eUpon finalising Version 3 of the SICG-C by the end of Phase 2, we conducted a final acceptability assessment with 50 caregivers, four of whom had been interviewed in Phase 2. As we separated S/N 1\u0026ndash;13 (patient\u0026rsquo;s sources of strength and caregiver\u0026rsquo;s sources of strength) into its constituent elements to facilitate comparison with its Version 3 counterparts (Questions 13 and 14 of questionnaire in Supplementary Appendix S2), the questionnaires contained 22 paired items for the participants\u0026rsquo; evaluation.\u003c/p\u003e\u003cp\u003eDue to the lack of standardised benchmarks for acceptability, we defined an item as acceptable if (i)\u0026thinsp;\u0026ge;\u0026thinsp;75% of participants rated it 4 (\u0026ldquo;Very acceptable\u0026rdquo;) and (ii)\u0026thinsp;\u0026ge;\u0026thinsp;95% of participants rated it either 3 (\u0026ldquo;Acceptable\u0026rdquo;) or 4. Both criteria were satisfied for every item in Version 3 of the Guide. By contrast, only one item in Version 1 (S/N 1\u0026ndash;1) met both criteria, with five other items (S/N 1\u0026ndash;5, 1\u0026ndash;6, 1\u0026ndash;13, 1\u0026ndash;18, 1\u0026ndash;21) meeting only criterion (ii). (For full results, see Supplementary Table \u003cspan refid=\"MOESM1\" class=\"InternalRef\"\u003eS1.3\u003c/span\u003e.)\u003c/p\u003e\u003cp\u003eWilcoxon signed-rank tests were performed for each pairwise comparison between Versions 1 and 3. Of 22 paired comparisons, 21 showed statistically significant improvements favouring Version 3 (all p\u0026thinsp;\u0026lt;\u0026thinsp;0.001). While participants did not consistently favour S/N 3\u0026thinsp;\u0026minus;\u0026thinsp;1 over S/N 1\u0026ndash;1, the differences are slight, with the former asking \u0026ldquo;How are you doing?\u0026rdquo; and the latter \u0026ldquo;How is your ___ doing today?\u0026rdquo;. The show of concern and support for caregivers in S/N 3\u0026thinsp;\u0026minus;\u0026thinsp;1 was appreciated by some participants, though most were accepting of both conversation openers.\u003c/p\u003e\u003cp\u003eThese results indicate that the final version of the SICG-C is highly acceptable and that the iterative revisions led to an overall improvement in its acceptability. (Exact p-value per pairwise comparison shown in Supplementary Table \u003cspan refid=\"MOESM1\" class=\"InternalRef\"\u003eS1.4\u003c/span\u003e.)\u003c/p\u003e\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe participants\u0026rsquo; preference for the final version of the adapted caregiver-oriented Serious Illness Conversation Guide (SICG-C) reflects a clear improvement in meeting caregivers\u0026rsquo; informational and emotional needs, as well as their expectations for clinician communication. With a median rating of 4 (\u0026ldquo;Very Acceptable\u0026rdquo;) for every item, the final Guide achieved high acceptability among caregivers of PwD, indicating its suitability for adoption in clinical practice and caregiver engagement. (See Supplementary Appendix S3 for the finalised SICG-C.)\u003c/p\u003e\u003cp\u003eOur findings affirm prior research showing that goals of care are rarely discussed within Asian families, often due to generational attitudes and cultural norms around talking about health, illness, and dying.(\u003cspan additionalcitationids=\"CR24 CR25\" citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e) In particular, the belief that filial piety entails intuitively knowing and acting on a loved one\u0026rsquo;s wishes, i.e., without needing explicit instruction, accords value to leaving things unspoken.(\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e) Without having been informed of their loved ones\u0026rsquo; priorities and goals, most of the participants claimed to understand what is important to them, with many considering the idea of having such a discussion with their elders uncomfortable and at odds with how they relate to each other. While involving caregivers as proxies in goals-of-care discussions is suboptimal, persistent challenges in eliciting preferences directly from PwD underscore the need for a caregiver-specific guide as an interim measure. Further research is warranted to develop and evaluate interventions that support earlier family communication about goals of care, particularly in the early stages of frailty and cognitive decline for PwD.\u003c/p\u003e\u003cp\u003eThis work complements Berry et al.\u0026rsquo;s dementia-specific SICG(\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e) by offering an adaptation for the Singaporean context and potentially for other Asian populations, expanding the repertoire of communication tools that clinicians may draw on, adapt, and integrate into practice to support goals-of-care discussions with caregivers of PwD. At the same time, while it is intended for use with caregivers of PwD, the Guide may also be considered in scenarios involving undiagnosed cognitive impairment, patients with communication difficulties, or where treatment decision-making responsibilities have been delegated to family caregivers.\u003c/p\u003e\u003cp\u003eThis study has two main limitations. First, there is a potential risk of contrast bias where two Guide versions are presented for assessment. While participants were asked to rate each item independently and on its own merits, there remains a residual risk of contrast bias. Second, caregiver feedback was based on hypothetical reactions to individual items rather than observations of actual clinical use. This limits insight into how the adapted Guide may function in real-time conversations, where relational and emotional dynamics may influence responses. Future work may involve evaluating use of the SICG-C in clinical settings, and testing the cultural acceptability of the SICG-C in other Asian societies.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study describes the iterative adaptation of the Serious Illness Conversation Guide for Caregivers (SICG-C) to support caregiver-clinician goals-of-care discussions for persons with dementia. Revisions improved its clarity, emotional sensitivity, and relevance. The final version was deemed highly acceptable by caregivers of PwD and offers a practical, culturally appropriate communication tool for clinical applications and training in Singapore and potentially in the wider region.\u0026nbsp;\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAuthors’ contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAN: Formal analysis, Investigation, Methodology, Project administration, Visualization, Writing – Original draft, Writing – review \u0026amp; editing.\u003c/p\u003e\n\u003cp\u003eVS: Methodology, Resources, Supervision, Writing – review \u0026amp; editing.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSN: Conceptualization, Methodology, Investigation, Project administration, Resources, Supervision, Writing – review \u0026amp; editing.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study team extends its gratitude to the Lien Centre for Palliative Care (LCPC), the Lien Foundation, and Dr Anupama Roy Chowdhury (Department Head of Geriatric Medicine, SGH) for their generous support for this project.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis work was supported by the Lien Centre for Palliative Care Research Award [Grant number: LCPC-EX22-0001].\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eClinical Trial Number\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of Interest disclosure\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no conflict of interest.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to Publish\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData availability statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe data that support the findings of this study are available from the corresponding author upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll participants gave their written informed consent for inclusion before they participated in the study. The study was conducted in accordance with the Declaration of Helsinki, and the protocol was approved by the SingHealth Centralised Institutional Review Board (CIRB), reference number: 2022/2736.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePatient consent statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNo patients were recruited for this study.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eAlzheimer\u0026rsquo;s Disease International. ADI - Dementia statistics [Internet]. [cited 2025 Mar 9]. Available from: https://www.alzint.org/about/dementia-facts-figures/dementia-statistics/\u003c/li\u003e\n\u003cli\u003eBrowne B, Kupeli N, Moore KJ, Sampson EL, Davies N. Defining end of life in dementia: A systematic review. Palliat Med. 2021 Dec 1;35(10):1733\u0026ndash;46. \u003c/li\u003e\n\u003cli\u003eSachs GA, Shega JW, Cox-Hayley D. Barriers to Excellent End-of-life Care for Patients with Dementia. J Gen Intern Med. 2004 Oct;19(10):1057\u0026ndash;63. \u003c/li\u003e\n\u003cli\u003evan der Steen JT. Dying with Dementia: What We Know after More than a Decade of Research. J Alzheimer\u0026rsquo;s Dis. 2010 Sep 28;22(1):37\u0026ndash;55. \u003c/li\u003e\n\u003cli\u003eDewing J, Dijk S. What is the current state of care for older people with dementia in general hospitals? A literature review. Dementia. 2016 Jan 1;15(1):106\u0026ndash;24. \u003c/li\u003e\n\u003cli\u003eMa H, Kiekhofer RE, Hooper SM, Dulaney S, Possin KL, Chiong W. Goals of Care Conversations and Subsequent Advance Care Planning Outcomes for People with Dementia. J Alzheimers Dis. 2021 Oct 12;83(4):1767\u0026ndash;73. \u003c/li\u003e\n\u003cli\u003eSellars M, Chung O, Nolte L, Tong A, Pond D, Fetherstonhaugh D, et al. Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies. Palliat Med. 2019 Mar 1;33(3):274\u0026ndash;90. \u003c/li\u003e\n\u003cli\u003ePhenwan T, Sixsmith J, McSwiggan L, Buchanan D. A narrative review of facilitating and inhibiting factors in advance care planning initiation in people with dementia. Eur Geriatr Med. 2020 Jun;11(3):353\u0026ndash;68. \u003c/li\u003e\n\u003cli\u003eIm J, Mak S, Upshur R, Steinberg L, Kuluski K. \u0026ldquo;Whatever happens, happens\u0026rdquo; challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study. BMC Palliat Care. 2019 Dec 12;18(1):113. \u003c/li\u003e\n\u003cli\u003eCheong K, Fisher P, Goh J, Ng L, Koh HM, Yap P. Advance care planning in people with early cognitive impairment. BMJ Support Palliat Care. 2015 Mar 1;5(1):63\u0026ndash;9. \u003c/li\u003e\n\u003cli\u003ePacifico D, Fiordelli M, Fadda M, Serena S, Piumatti G, Carlevaro F, et al. Dementia is (not) a natural part of ageing: a cross-sectional study on dementia knowledge and misconceptions in Swiss and Italian young adults, adults, and older adults. BMC Public Health. 2022 Nov 25;22(1):2176. \u003c/li\u003e\n\u003cli\u003eKim S, Sargent‐Cox KA, Anstey KJ. A qualitative study of older and middle‐aged adults\u0026rsquo; perception and attitudes towards dementia and dementia risk reduction. J Adv Nurs. 2015 Jul;71(7):1694\u0026ndash;703. \u003c/li\u003e\n\u003cli\u003eDening KH, King M, Jones L, Vickestaff V, Sampson EL. Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia? PLOS ONE. 2016 Jul 13;11(7):e0159056. \u003c/li\u003e\n\u003cli\u003ePaladino J, Bernacki R, Neville BA, Kavanagh J, Miranda SP, Palmor M, et al. Evaluating an Intervention to Improve Communication Between Oncology Clinicians and Patients With Life-Limiting Cancer: A Cluster Randomized Clinical Trial of the Serious Illness Care Program. JAMA Oncol. 2019 Jun 1;5(6):801. \u003c/li\u003e\n\u003cli\u003eKarim S, Lupichuk S, Tan A, Sinnarajah A, Simon J. Real World Implementation of the Serious Illness Care Program in Cancer Care: Results of a Quality Improvement Initiative. J Palliat Med. 2021 Jun 1;24(6):905\u0026ndash;9. \u003c/li\u003e\n\u003cli\u003eKumar P, Wixon-Genack J, Kavanagh J, Sanders JJ, Paladino J, O\u0026rsquo;Connor NR. Serious Illness Conversations With Outpatient Oncology Clinicians: Understanding the Patient Experience. JCO Oncol Pract. 2020 Dec;16(12):e1507\u0026ndash;15. \u003c/li\u003e\n\u003cli\u003ePaladino J, Koritsanszky L, Nisotel L, Neville BA, Miller K, Sanders J, et al. Patient and clinician experience of a serious illness conversation guide in oncology: A descriptive analysis. Cancer Med. 2020;9(13):4550\u0026ndash;60. \u003c/li\u003e\n\u003cli\u003eGeerse OP, Lamas DJ, Sanders JJ, Paladino J, Kavanagh J, Henrich NJ, et al. A Qualitative Study of Serious Illness Conversations in Patients with Advanced Cancer. J Palliat Med. 2019 Jul;22(7):773\u0026ndash;81. \u003c/li\u003e\n\u003cli\u003eBernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014 Dec;174(12):1994\u0026ndash;2003. \u003c/li\u003e\n\u003cli\u003eShilling DM, Manz CR, Strand JJ, Patel MI. Let Us Have the Conversation: Serious Illness Communication in Oncology: Definitions, Barriers, and Successful Approaches. Am Soc Clin Oncol Educ Book. 2024 Jun;44(3):e431352. \u003c/li\u003e\n\u003cli\u003eBerry CE, Montgomery SH, Santulli R, Cullinan A. Adapting the Serious Illness Conversation Guide for Dementia Care. Am J Hosp Palliat Med. 2024 Aug 1;41(8):942\u0026ndash;51. \u003c/li\u003e\n\u003cli\u003eLee ASY, Tang SN, Phua GLG, Yee ACP, Neo SHS. Adaptation of the Serious Illness Conversation Guide to Singapore\u0026rsquo;s Multicultural Setting for Patients With Heart Failure, Renal Failure, or Cancer. Palliat Med Rep. 2024 Mar 26;5(1):122\u0026ndash;6. \u003c/li\u003e\n\u003cli\u003eCheng SY, Lin CP, Chan HY lai, Martina D, Mori M, Kim SH, et al. Advance care planning in Asian culture. Jpn J Clin Oncol. 2020 Sep 5;50(9):976\u0026ndash;89. \u003c/li\u003e\n\u003cli\u003ePan JD, Ho KY, Guan G fen, Chang MM, Tan CR, Qiu XY, et al. Asian family members\u0026rsquo; participation in advance care planning: An integrative review. Palliat Med. 2025 Mar 1;39(3):373\u0026ndash;90. \u003c/li\u003e\n\u003cli\u003ePun J, Chow JCH, Fok L, Cheung KM. Role of patients\u0026rsquo; family members in end-of-life communication: an integrative review. BMJ Open. 2023 Feb 1;13(2):e067304. \u003c/li\u003e\n\u003cli\u003eAli N, Anthony P, Lim WS, Chong MS, Poon EWH, Drury V, et al. Exploring Differential Perceptions and Barriers to Advance Care Planning in Dementia among Asian Patient\u0026ndash;Caregiver Dyads\u0026mdash;A Mixed-Methods Study. Int J Environ Res Public Health. 2021 Jan;18(13):7150. \u003c/li\u003e\n\u003cli\u003eMori M, Morita T. End-of-life decision-making in Asia: A need for in-depth cultural consideration. Palliat Med. 2020 Feb 1;34(2):NP4\u0026ndash;5. \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-geriatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bgtc","sideBox":"Learn more about [BMC Geriatrics](http://bmcgeriatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bgtc/default.aspx","title":"BMC Geriatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Serious illness care, dementia, values and preferences, goals of care, communication","lastPublishedDoi":"10.21203/rs.3.rs-7399717/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7399717/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eIntroduction\u003c/strong\u003e\u003cbr\u003e\nGoals-of-care (GOC) discussions are often delayed or uninitiated for persons with dementia (PwD), potentially contributing to inappropriate end-of-life treatment. The Serious Illness Conversation Guide (SICG) facilitates structured GOC discussions about patient values and care preferences, but a dementia-specific Guide adapted to the Asian cultural context has yet to be developed.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003cbr\u003e\nWe adapted the SICG for caregivers of PwD in Singapore using a three-phase, approach. Phase 1 involved adapting the patient-facing SICG to caregiver-facing language (version 1). In Phase 2, we iteratively tested the guide with 6 and 13 caregivers in 2 rounds of interviews to derive the final version of the Guide. In Phase 3, 50 caregivers rated each SICG-C item from Versions 1 and 3 using a structured questionnaire, with presentation order alternated to minimise order effects.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003cbr\u003e\nCaregivers expressed a strong preference for Version 3, with Wilcoxon signed-rank tests showing statistically significantly higher ratings relative to Version 1. Qualitative findings revealed that caregivers valued empathy, contextual clarity, and reassurance of continued clinical support. None of the caregivers had been informed by their loved ones of their goals and priorities, reaffirming the value of the SICG-C. Revised prompts were highly aligned with caregivers’ informational and emotional needs, and were well-received.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003cbr\u003e\nThe SICG-C enables clinicians to initiate timely, values-based GOC discussions with caregivers of PwD. Its structured, sensitive language addresses caregiver concerns and may be used to support proactive care planning in dementia. 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