Cultural adaptation of World Health Organization iSupport for Dementia program for Chinese-Australian caregivers

Ecological validity framework to inform the cultural adaptation

The study is embedded within a larger ongoing project that includes the cultural adaptation of Chinese iSupport program in phase one using a qualitative study and an evaluation of the program in phase two using a multicentre randomised controlled trial across six study sites in Australia and Greater China including mainland China (two sites), Taiwan, Hong Kong and Macau. The study protocol for phase two is published elsewhere (Xiao et al. 2022). In this study, we applied the ecological validity framework described by Bernal and Domenech Rodríguez (Bernal & Domenech Rodríguez, 2012a), Durlak and DuPre (2008) and Spanhel et al. (2021) to inform the cultural adaptation of the program. The framework emphasises eight components and we interpret these components as follows: (1) language: ensuring translation accuracy of the original program; (2) persons: identifying informants and stakeholders, engaging them in the program adaptation and eliciting their perspectives on cultural and linguistic appropriateness of the program; (3) metaphors: symbols, sayings and case scenarios used in the program are culturally meaningful for users; (4) content: embedding values, customs and traditions that enhance care; (5) concepts: eliciting stakeholders’ perspectives of implementation strategies or models and embedding these into the intervention protocol to enhance intervention outcomes; (6) goals: co-designing the online program with stakeholders to meet their expectation for a user-friendly program (i.e. easy access and use); (7) methods: developing procedures, guidelines and training activities that support the implementation of culturally and linguistically adapted intervention programs; and (8) social context: considering contextual factors, for example, Chinese-Australian community organisations, ethno-specific care service providers and the social care system in Australia that promote and sustain the program.

Components 1–4 of the ecological validity framework constitute a surface structure of a culturally adapted program which is concerned with language, culture and core content in the program, whilst components 5–8 are viewed as a deep structure that addresses enablers and barriers in program implementation (Durlak & DuPre, 2008; Spanhel et al., 2021). This study is phase one of a large project mainly focused on the surface structure of the Chinese iSupport program. However, factors affecting the deep structure of the intervention phase were also explored. The applications of the eight components of the ecological validity framework are outlined in Table 1). Applications relevant to phase two, a planned randomised controlled trial (RCT), are included in the table, but not detailed in this paper.

Aims

The aims of the study were (1) to understand stakeholders’ perspectives on the cultural and linguistic appropriateness of the Chinese iSupport for Dementia content and design and (2) to explore factors affecting the future implementation of the Chinese iSupport program in Australia.

Study setting and participants

The study was conducted in an Australian state. Chinese-Australian caregivers were invited to participate in the study if they were (1) 18 years of age or above, (2) a primary caregiver for a person with dementia, (3) in a caregiving role for at least 1 year; and (4) able to comprehend written Chinese as they were required to review and comment on the written format of the Chinese version of the iSupport program. We also invited care workers who provided community-based dementia and aged care services for older Chinese-Australians to the study if they were (1) from a Chinese background and (2) currently employed as a caregiver support group coordinator, social worker or direct care worker in a aged care organisation.

Participants were recruited from a large Chinese ethno-specific aged care organisation that provides care services to older Chinese-Australians. Researchers attended meetings with Chinese caregivers to introduce the study and address any questions or concerns. Hard copies of information packs, including participant information and consent forms in Chinese, were distributed to potential participants during the meetings. Potential participants who were interested in the study contacted a researcher by phone or WeChat, a social media platform used by Chinese, to arrange a face-to-face meeting to discuss informed consent and focus group details. The recruitment process commenced in February 2021 and was completed in April 2021.

Data collection

Focus group discussions were conducted to collect data using a semi-structured discussion guide (see Supplement file). The guide was adapted from a previous study adapting the English version of WHO iSupport program to an Australian socio-cultural context (Xiao, McKechnie, et al., 2021). These questions helped researchers to elicit participants’ perspectives of (1) language, culture and core program content or the surface structure of the program (i.e. question 1–4 for caregivers or question 1–5 for community care workers) and (2) enablers and barriers in program implementation or the deep structure of the program as described in the Ecological Validity Framework (i.e. question 5–10 for caregivers or question 6–11 for community care workers).

Six focus groups were conducted in total, two with caregivers (8–10 participants in each group) and four with care workers (4–5 participants in each group). Focus group discussions with caregivers were held in the seminar room of the ethno-specific aged care organisation and were facilitated by two bilingual and bicultural researchers (LX and MY). Focus group discussions with care workers were conducted in Zoom online meetings held in the evening as this group of participants worked mainly on day shifts and had difficulties attending face-to-face meetings. These focus groups were facilitated by two bilingual and bicultural researchers (LX and YZ). During focus groups, the researchers displayed the test online Chinese iSupport website to demonstrate the program and facilitate discussions. Each focus group discussion was held for approximately 60 minutes.

Prior to focus group discussions, each participant was given 2–3 written learning units from the draft Chinese iSupport manual, either in simplified Chinese or traditional Chinese, to review. They were also asked to reflect on their experience in dementia care and comment regarding the cultural and linguistic appropriateness of iSupport.

Data analysis

Thematic analysis, described by Nowell et al. (Nowell et al., 2017), was applied to the study. Voice data was transcribed verbatim by YZ and MY and verified by LX to ensure transcript accuracy. Two bilingual researchers (LX and MY) read the transcripts several times to become familiarised with participants’ views. Meaningful words were extracted and highlighted from data to generate open codes. The researchers then constantly compared the codes across focus groups to identify clusters of codes based on similarities. The authors identified redundant answers to the interview questions (or data saturation) in the final focus group of each participant group. Regular team meetings were held to elaborate potential themes and sub-themes based on the study aims. Findings with excerpts were translated from Chinese into English by the first author and verified by a team member (LX and YZ).

Ethical consideration

Ethical approval for the project was granted by the Human Research Ethics Committee of Flinders University (Project number: 2782). Researchers discussed the project with each participant and provided sufficient time for them to discuss their participation with family members and friends. Informed consent was signed prior to focus group discussions and document review. Participants were assured of their rights to participate or withdraw from the study. They were also reassured that personally identifying information would remain confidential in any reports of the study.

Study rigour

Strategies were implemented in the current study to ensure credibility, dependability, confirmability and transferability of the qualitative study (Lincoln & Guba, 1985). First, two bilingual researchers (LX and MY), who share the same first language as participants, were the facilitator and observer in focus group discussions. The cultural and linguistic concordance enabled the researchers to build rapport with participants and elicit opinions through interactive dialogues. Focus group discussions were audio recorded and transcribed verbatim for data analysis by two bilingual researchers (MY and AZ) and checked by another bilingual researcher (LX). These processes ensure credibility of data. Second, the bilingual researchers (LX and MY) analysed the data independently. Findings and excerpts were translated into English by MY and checked by LX and YZ. Member checking in the research team was used. All members in the project (all authors listed in this article) were given opportunities to review and comment on the themes and excerpts. Disagreements on the themes were discussed in monthly team meetings or via email communication and were resolved based on data and team consensus. Additionally, data collected from caregivers and aged care workers and the comparisons of findings demonstrated data triangulation. These processes ensure confirmability. Dependability was achieved by adhering to the study design and methods. Transferability was shown by detailed descriptions of sub-themes and themes using excerpts.

Appropriateness of the Chinese iSupport content

Participants discussed the appropriateness of the Chinese iSupport program. First, they confirmed that the content of iSupport and the language used in the program were appropriate based on their pre-focus group review and comments on the manual. The few suggestions for changes included (1) using the Chinese word ‘失智症 (shizhizheng)’ rather than ‘痴呆症 (chidaizheng)’ as the latter is viewed as stigmatising people with dementia; (2) using both Chinese and English words when introducing aged care services and resources; and (3) increased use of Chinese diet, music and photos throughout the program to enhance cultural appropriateness, as care worker FG 3 discussed:

Care worker: Diet examples could be more suitable for the Chinese, such as rice or porridge, or add a few recipes. These features would stimulate their interest to learn.

Overall, caregivers and care workers were satisfied with the core content of the iSupport program.

Acceptability of the online Chinese iSupport design

Participants shared their thoughts on how to help caregivers easy access the program through the online program design and suggested these functions:

Care worker: For older carers, it is better to use a voice recognition function or key words to search for the information and services they need in the program. The majority of Chinese-Australians use WeChat. Establishing a WeChat Mini-Program may help them easily access and utilise the program (Care worker FG 3).

Participants also suggested diverse iSupport program formats to accommodate the preferences of different user groups as discussed in Caregiver FG 2:

Caregiver: Nowadays we like listening, like the radio. The best solution is an audio program you click on and the audio program starts. Then we can use a smart phone to listen to it while doing some housework.

Care workers mentioned that some older people have poor literacy. Therefore, ‘Short videos would increase their interest in the program (Care worker FG 2)’. Findings indicated participants’ concerns about functional decline in older caregivers and the impact of this on older caregivers’ ability to use the iSupport program. An audio version was the most popular format suggested by participants.

Motivations to engage in the iSupport program

Caregiver participants showed motivations to provide good care for their family members and to search for assistance and knowledge to support their caregiving performance. Therefore, they were keen to engage in the Chinese iSupport program in order to provide the best care they could for a loved one:

Female spouse caregiver: I would read at least two hours a day because my main job is to look after him [husband]. I have nothing else to do. I only want my husband to live longer, make sure his dementia would not progress too quickly… (Caregiver focus group [FG] 1).

Care workers echoed caregivers’ views regarding motivations to learn from the iSupport program:

Care worker: Carers are under high pressure when they look after family members with dementia … if incidents happen suddenly, they have nowhere to go to get help …That is why I wish this iSupport could provide advice to solve problems in a timely manner (Care worker FG 1).

Learning from iSupport could enhance self-help strategies as described by caregivers in FG 1:

Caregiver: I would use it because I can get more resources to help me look after my grandmother. I have encountered difficulties such as assisting her to the toilet and showering her.

Spouse caregivers indicated that ‘Time is not a problem’ (Caregiver FG 2). They described: ‘We have plenty of time since retired (Caregiver FG 2)’. This situation was further explained by care workers, ‘They [caregivers] are hungry for dementia care knowledge due to very few dementia care programs currently offered in a Chinese language for them (Care worker FG 4)’.

Desire to interact with peers and professional facilitators

In addition to self-learning, caregivers suggested establishing peer support groups and having professional facilitators as they elaborated in Caregiver focus group 2:

Caregiver: It should establish iSupport WeChat groups for those from mainland China or WhatsApp groups for those from Hong Kong and Taiwan to have some interaction.

Similarly, care workers made suggestions for encouraging interaction between iSupport program participants: ‘If there is a space for questions and answers, carers would be more interested in the program (Care worker FG 3)’. Care workers further discussed the benefits of incorporating support groups within the iSupport program: ‘The best support is to provide these carers with some avenues to relieve their pressure. …I think sharing is the best way to relieve their stress (Care worker FG 4)’. Another added: ‘If the program builds a forum for carers to share their experiences, they will use it more frequently and possibly use it long term (Care worker FG 3)’. Although iSupport is designed as a self-learning tool for caregivers, stakeholders also considered this program to be an opportunity to enhance peer and professional support.

Concerns about program accessibility

Care worker FG 4 were concerned about low computer literacy among caregivers impacting on accessing the program:

Care worker: It could be a bit difficult for older people to find the program online. Many of them only use computers to watch videos, rather than a tool for education.

Participants suggested that engaging Chinese-Australian community organisations to promote the Chinese iSupport program could address poor computer literacy and language barriers, as discussed in care worker FG 3:

Caregiver: Using flyers to disseminate iSupport in Chinese xx [a Chinese organisation] and Chinese xx [another Chinese organisation], Chinese schools and churches will let Chinese families know about the program.

Findings indicated that strategies to raise awareness of the Chinese iSupport program and to address poor computer literacy in older Chinese caregivers will be much needed in order to ensure high uptake of the program.

The need to extend the iSupport program to care workers

Care workers from all focus groups embraced the iSupport program and recognised that they too could learn from it in relation to behavioural and psychological symptoms of dementia: ‘Well, I think professional caregivers like us also need to learn this program. Many times, we encounter clients with Alzheimer’s disease who go ‘crazy’ and we don’t know how to deal with the situation (Care worker FG 3)’. The lack of understanding about responses to difficult behaviours in clients was echoed by other care workers: ‘Quite often, I observe clients with dementia suddenly become hallucinated and I don’t know how to deal with the situation. So, at that time, I wish I could get some help via an internet search (Care worker FG 2)’.

Care workers described a lack of dementia education in the workplace, especially in managing difficult behaviours of clients. They showed their desire to learn from the iSupport program: ‘We do not have someone to teach us how to work with these clients. I found this program is a very good for self-learning (Care worker FG 3)’. The benefit of learning about how to manage difficult behaviours from the iSupport program was even recognised by care workers with a long-term employment in the industry:

Care workers: I have been working in this industry for 11 years, but I still feel I don’t know how to help them [people with dementia] when they are very angry. Sometimes I cannot control my emotions and I feel very tired at work. So, I need to learn the iSupport program and I need to talk with someone about how to deal with clients with behaviours and how to help their family carers (Care worker FG 4).

Moreover, workers in a leadership and management position mentioned that the Chinese iSupport program would addresses language barriers in dementia training programs currently available to staff: ‘To be honest, most direct care workers are first generation migrants and have limited English. They encounter difficulties in dementia training courses provided in English (Care worker FG 4)’. However, participants recognised that ‘iSupport is a learning resource for caregivers, the content needs to be changed to be a little more complicated for care workers (Care worker FG 3)’.

Limitations of the study

First, participants in the study were self-selected from one ethno-specific aged care organisation and findings may not represent those who were not invited into the study. Second, caregivers participating in the study mainly cared for people with mild and moderate dementia and use the internet to search for health information. Therefore, their views may not represent those who care for late stage dementia at home or those who do not use the internet. In addition, as a qualitative study, findings cannot be generalised but may be transferred to similar socio-cultural contexts such as Chinese migrants living in developed countries.

Implications for policy, resource and practice development, and future research

Findings from the study will inform the intervention design of Chinese iSupport program in the planned RCT in phase two as outlined in Table 1. To be specific, findings regarding the need to have a program facilitator to engage caregivers in the program and the peer support group to be established in the program will be incorporated into the intervention. Findings about motivations for Chinese caregivers engaged in the program, barriers to accessing and utilising the online program will be considered and will inform the program implementation procedures, guidelines and training for program facilitators and for caregivers in the RCT in phase 2. Findings may also be applicable to the adaptation of WHO iSupport for different ethnic/migrant groups in Australia or other developed countries. Findings about community aged care workers’ perceptions on a tailored dementia care education program will inform future research in this important area.

OPEN IN VIEWER

Table 1.

Application of the ecological validity framework to the cultural adaptation of the Chinese iSupport program.

Component	Applications in the cultural adaptation of the Chinese iSupport for Dementia program
Language	- Bilingual research team members produced simplified and traditional Chinese versions of iSupport for Dementia for Chinese-Australia caregivers based on review, revision and team discussions about the Chinese iSupport for Dementia translated in mainland China. - Stakeholders were given opportunities to decide which word for ‘Dementia’ would be used in the Chinese iSupport program so that it was not associated with dementia stigma.
Persons	- The research team recruited Chinese-Australian caregivers and community aged care workers who met the study inclusion criteria to participate in the study. Participants reviewed and commented on the written Chinese iSupport manual 3 weeks prior to focus groups and discussed their perspectives of the program in focus groups. - A project advisory committee was established and included 6 caregivers and 6 community aged care workers across the 6 study sites in Australia and greater China. Committee members met quarterly in online meetings. They were invited to review and comment on the written Chinese iSupport manual and elaborate their thoughts on the program in regular committee meetings.
Metaphors	- All names and places related to family, community and society in case scenarios were reviewed and revised to suit Chinese-Australian caregivers by the research team and confirmed by stakeholders. - All dementia and aged care services available for Chinese-Australian caregivers were added to the program by the research team and confirmed by stakeholders.
Content	- Stakeholders were given opportunities to review food, music and relaxation activities used in the program. - Stakeholders recommended changes based on their understandings of values, customs and traditions held by Chinese caregivers.
Concepts	- Focus groups provided stakeholders with opportunities to share their perspectives of implementation strategies. - Recommended implementation strategies will be considered in the intervention and evaluation of the Chinese iSupport program in phase 2.
Goals	- Focus group provided stakeholders opportunities to view a testing site for the online Chinese iSupport program and to discuss changes to support caregivers to enhance learning and caregiving. - Participants in focus groups and advisory committee members were given opportunities to express their expectations of a user-friendly program to help caregivers to achieve their learning goals, as demonstrated in program functional design and formatting, that is, sign up, log in, assessing learning needs, selecting learning units to meet own learning needs.
Methods	- Findings from phase 1 will inform development of procedures, guidelines and training activities for program facilitators and caregivers in the phase 2 RCT. - Findings from phase 1 will inform a pilot study in phase 2 to test the recommended implementation strategies.
Social context	- In phase 2, the project team will approach and gain support from Chinese-Australian community organisations and Chinese ethno-specific care service providers. - On the completion of the RCT in phase 2, the project team will work with stakeholders and policy makers to embed the Chinese iSupport program into the social care system for people with dementia and their caregivers in Australia.