Challenges highlighted in step 1 (preparation)

Through obtaining written permission from the original author, the legality and standardization of the translation were ensured, while duplicate translations were avoided, mitigating potential legal issues. The establishment of a multidisciplinary team ensured the professionalism of language translation, cultural adaptability, and clinical applicability. During the translation process, Mandarin (Putonghua), as the official language, was confirmed as the language of the questionnaire to ensure its generalizability and operability across the country. The original i-CODE consisted of 32 core items and 10 demographic information items. We removed item 35 and 40, which involve “ethnic group” in the original questionnaire. Therefore, 32 core items and 8 demographic information in the Chinese version of i-CODE.

Challenges highlighted in step 2 and 3 (forward translation and reconciliation)

V1 and V2 were mostly consistent. However, aside from minor differences in grammar and syntax, dissimilar translations were identified in item 1 “washing”, item 14 “noisy rattle”, item 27 “in the right place”, item 28 “the actual time of his/her death”, item 29 “sensitive manner”, and the terminology “healthcare team”. The differences were not only semantically modified but also adjusted according to the cultural background. Through joint discussion among T1, T2, and a member of the research team, consensuses were reached for all the above items except an item (“noisy rattle”). During the forward translation process, two translators both noticed the issue of inconsistent subjects in the questionnaire. The overall design of the questionnaire used the second person “you” for asking the respondents, for example, “Were you told…”. However, it was found that items 22 and 28 were stated as first person “my …. were met” and “I was”. We had unified the subject and used the second person “you” throughout the questionnaire.

Challenges highlighted in step 4 and 5 (backward translation and reconciliation)

Two independent translations, V4 and V5, agreed most of the time in terms of semantics, sentence structure and expression, except for four items. Although the two translations of Item 27 were the same, they do not conform to the original item. In the three items (item 2 “giving medicines”, item 28 “at the actual time of his/her death”, and item 29 “sensitive manner”), none of the backward translations matched the original i-CODE. Two of these (“noisy rattle” and “at the actual time of his/her death”) were already highlighted from the forward translation as potentially problematic. T3, T4 and a member of the research team discussed these dissimilarities in order to find the best alternative.

Challenges highlighted in step 6 (backward translation review)

V6 was sent to the original author for review. One of the adjustments at this step was the adoption of gender-neutral language. Gender-neutral language (they/them) was proposed to refer to the deceased patients, according to the revised original questionnaire. Another issue that was brought up and resolved during the original author review was the translation of the term “healthcare team”. Initially, we translated “healthcare team” as 医疗团队(medical team). However, upon further consideration and in consultation with original author, we decided to adopt the translation “健康照护团队”, which not only places emphasis on the medical and clinical aspects, but also the includes the non-medical but still crucial members of the care team, such as social workers and psychological counsellor.

In addition, the original author questioned the backward translations of three items, which were highlighted in previous steps. The original author indicated that item 27 “in the right place” and item 28 “the actual time of his/her death” in the back translation, not accurately convey the original meaning. The item 14 “noisy rattle” needs to be rigorously discussed to ensure accurate localization in Chinese. The original author review enhanced the semantic precision and cultural appropriateness.

Challenges highlighted in step 7 (expert consultation)

The expert consultation made the contributions to address unresolved translation challenges and to identify potential methodological issues or cultural biases in the translated questionnaire. The review of five experts with extensive clinical or research experience led to precise revisions, ensuring the cultural relevance, linguistic clarity, and content validity of the questionnaire.

Item 4 – “had adequate privacy”

Some expert consultation members pointed out that item 4 (“The bed area and surrounding environment had adequate privacy for him/her.”) was ambiguous, which we didn’t noticed in the previous steps. Item 4 described whether the bed area and its surrounding environment have sufficient privacy conditions for patient. In other word, patient’s private space was well protected in this bed area and its surroundings, not easily disturbed by others, and can have a relatively private space to rest, relax or engage in some private activities. The bed area and surrounding environment enabled patient to enjoy sufficient privacy in this space. In accordance with the experts’ suggestions, we decided to modify item 4 into the content recommended by the experts.

Item 14 – “noisy rattle”

The translation of item 14 (“In your opinion, during the last two days, did he/she appear to have a ‘noisy.

rattle’ to his/her breathing?”) remained a contentious issue after the backward translation and reconciliation process. The item was initially translated during step 2 by呼吸困难and嘈杂的呼吸音. After the discussion of forward translation reconciliation, we selected the term明显的咕噜咕噜声that the sound that comes out of a patient’s throat when they breathe, similar to the sound of gas passing through a liquid. During the Step 3, the item was translated respectively “noticeable purring” and “noticeable snorting”, both did not match the original formulation. We discussed with the T3 and T4, they opted for明显的咕噜咕噜声. “Noisy rattle” here can be understood as a “noisy, rattling (or snoring-like) sound” during breathing. Expert consultation did not reach a consensus for “noisy rattle”, they suggested alternatives (明显的喘息声, 呼吸痰鸣音, 喉咙呼噜声).

Item 27 – “in the right place”

The term “in the right place” was another item that faced challenges during the backward translation review process. T3 and T4 both translated the item as “in the best place”, which original author noted that it did not fully capture the original meaning in the source questionnaire. Item 27 was whether the place of death conforms to patient’s or the family’s wishes. The item “in the right place” emphasized the appropriateness from the perspective of the patient’s psychological expectations. For example, if a patient hopes to pass away peacefully at home and eventually does die at home, this expression can be used to ask others for their opinions. We accepted the original author’s suggestion and, following expert review, ultimately translated it as “在合适的地点”.

Item 28 – “the actual time of his/her death”

During the expert consultation step, the experts also raised concerns regarding the translation of the term “at the actual time of his/her death” as “in his/her terminal moment”. The experts pointed out that while “terminal moment” may seem to convey a similar meaning, it failed to accurately convey the specific time point that was originally intended. The term “terminal” was more frequently associated with describing the dying process or the final stage of life rather than being directly used to describe the exact moment of death. To address this issue, “at the actual time of his/her death” based on the experts’ feedback, was carefully revised as “在他/她去世的时候”. This adjustment improved the naturalness and semantic accuracy of the translation.

Challenges highlighted in step 8 and 9 (cognitive interview and review)

The cognitive interview step aimed to further validate the cultural appropriateness and linguistic comprehensibility of the questionnaire. The following were the key challenges and findings identified during these two steps.

Item 14—“noisy Rattle”

During the cognitive interviews, it was revealed that the translation of the term “noisy rattle” presented certain challenges in terms of comprehension among family members, which could potentially impact subsequent psychometric tests. Specifically, while some experts had suggested translating “noisy rattle” as “明显的喘息声”, it did not seem to be clearly understood by family members. One family member asked it (“what’s the meaning of ‘明显的喘息声’, does it mean, was there phlegm in patient’s throat?”), another family member associated it to having short of breath. In expert consultation, other experts proposed alternative translations, such as “呼吸痰鸣音” or “喉咙呼噜声”. The use of these more specific and detailed terms was found to assist family members in better understanding the nature of the term being described. We discussed with family members and reached a consensus on using “呼吸时有明显的痰鸣音(喘息声)” in the questionnaire.

Item 19 -in a way you found easy or difficult to understand

Another adaptation which is noteworthy relate to on the phrasing “in a way you found easy or difficult to understand?”. Some family members noted that it seemed somewhat overly verbose. The complete sentence was “Did the healthcare team explain his/her condition and/or treatment in a way you found easy or difficult to understand?”. To maximize the conceptual equivalence, we did not alter the sentence structure during the Chinese translation process. Our translation of this sentence was “……. 您认为容易理解还是难以理解?. Although this sentence was generally well understood by family members, over half of them indicated that the expression was somewhat verbose and could be streamlined for better comprehension. After discussion among the research team members, we revised the sentence to “……是否让您觉得容易理解” or “……是否清晰易懂”. Family members found such translations to be acceptable and understandable. This new sentence aligned more closely with the Chinese formulation, simplifies the question, and facilitates more accurate responses from family members.

Likert response options– “not sure” & “don’t know”

Another issue that was brought up during the cognitive interview was the two response options, “not sure” and “don’t know”. For Item 27 (“In your opinion, did he/she die in the right place?”), the Likert response options were “yes……”, “no……”, “not sure” and “don’t know”. Among the family members, only two were able to distinguish the difference between “not sure” and “don’t know”, while the remaining 13 family members stated that these two options meant the similar meanings and it didn’t matter which one they chose. Nevertheless, after discussion within the research team, we decided to keep these two response options unchanged to maintain consistency with the original questionnaire in this study, while keeping track of this potential bias during the psychometric validation.

Overall impression of participants

Family members hold positive attitudes towards the questionnaire and were willing to participate. They believed the content was relevant to the research topic and crucial to the quality of palliative care. No significant negative emotions were reported, indicating a high level of emotional acceptability. The questionnaire was understandable, two family members of whom pointed out terminology and complex sentence structures used in the questionnaire might be a bit confused and took more time to think before answering. This suggested the necessity for further clarification or simplification to ensure that family members could easily understand.

Challenges highlighted in step 10 (final proofreading)

To ensure the quality and validity of the questionnaire, the research team not only conducted repeated proofreading for the issues involved in the above steps but also took the following measures:

Standardization of terminology

The terms in the questionnaire were unified to maintain overall consistency and facilitate comprehension by respondents. For instance, although “died/dying/death” have multiple translations in Chinese, we consistently used the term “离世” to express this concept throughout the questionnaire.

Expression optimization

For overly professional, abstruse vocabulary and complex sentence structures, we used simple and straightforward language to clarify the meaning, making the questionnaire accessible to the average educational and linguistic level of the public. For example, in Item 1, “washing” was translated as “洗澡”instead of the more formal “身体清洁 (body cleaning)”.

Overall layout adjustment

We adjusted the layout of options. Specifically, for items 3, 4, and 5, we placed the response option “Not applicable, he/she died at home” first, while for items 11, 13, 15, 18, 25, 29, etc., this response option was originally placed last. After discussion within the research team, to ensure consistency in questionnaire layout, we decided to place “Not applicable, he/she died at home” at the beginning of the options for all relevant items.

Details revision

For example, Items 17 and 18 are relatively complex questions that deal with infusion during the last two days of life, which are crucial for reflecting the quality of care for dying patients. Therefore, we explicitly presented the implied meanings after “Yes” and “No” in a simplified form to help family members better understand. Additionally, in Items 20 and 31, since the word “您 (you)” appeared twice in the same sentence, we added a underline to the second “您(you)” to enable respondents to answer the questionnaire more accurately.