Qualitative Research on Dementia in Ethnically Diverse Communities

Abstract

Australia, like other ethnically diverse societies, needs to provide culturally appropriate health care to all its citizens. One way of facilitating this is to ensure that health services research adequately reflects the circumstances and needs of culturally and linguistically diverse (CALD) communities within the population. This article discusses the fieldwork phase of a qualitative research project on dementia caregiving in 4 CALD communities in south west Sydney, Australia. Rather than focusing on the study results—which have been published elsewhere—this article presents and discusses crucial fieldwork issues that arose in the conduct of the project, particularly regarding participant recruitment and facilitation of focus groups. In being transparent about some of the difficulties encountered and how these were managed, we offer suggestions for other researchers wanting to include CALD communities in a meaningful way in their research projects.

Background

Australia, like other ethnically diverse societies, needs to provide culturally appropriate health care to meet the needs of all consumers. ¹ As culturally and linguistically diverse (CALD) people are often treated in health care facilities, it is essential that health research includes CALD populations.

Researchers acknowledge the difficulties in including older CALD persons in studies and have suggested various strategies to increase participation. ^{2 -7} These include consulting with community leaders to learn about communities, using bilingual/bicultural staff, ensuring written translations of documents such as consent forms that are conceptually correct, avoiding stigma and alienation in advertising studies, for example, using the words “significant memory loss” rather than “dementia,” conducting research in culturally appropriate, familiar venues, assisting with transport, and providing feedback to the communities.

In this article, we report on fieldwork issues that arose in a project on family caregiving for people living with dementia in 4 Australian CALD communities–Italian, Arabic, Chinese, and Spanish-speaking–in south west Sydney, Australia. The project conducted focus groups with family carers (4 groups in each of the communities) and one-to-one interviews with 3 groups of health professionals—bilingual/bicultural workers, bilingual general practitioners, and geriatricians.

This article will not present research findings from the project, which have been published elsewhere. ^{8 -11} Rather, the article will examine the processes involved in planning and carrying out the research, particularly recruiting for and conducting focus groups with CALD family carers. We suggest that some of the issues that arose in the fieldwork for the project may be helpful to both qualitative researchers using focus groups and other researchers of any discipline wanting to engage CALD communities in research projects. This background will finish with an introduction to the communities in the study, and the next section of the article will recount a number of fieldwork issues that arose in the project.

The Communities Involved in the Study

There are differences in the patterns of immigration to Australia among the 4 communities. Arabic-speaking people have come from countries including Lebanon, Egypt, Iraq, Jordan, Palestine, and the Arab Peninsula. ¹² Chinese migrants have primarily come from China, Malaysia, Cambodia, Hong Kong, and Vietnam. Italian migration began in the 1800s, and large numbers came between the 2 World Wars. In the 1960s, Spaniards came for economic reasons, and those coming from South America in the 1970s were often escaping military regimes. ¹³

Our project was based in south west Sydney, which is often represented negatively in the media and associated with high rates of crime, unemployment, family, and social problems. ¹⁴ Three local government areas of Liverpool, Fairfield, and Bankstown are the study locations. There are numerous CALD communities residing in these areas. For example, 87 different languages are spoken in Fairfield, ¹⁵ including the 4 languages in this study—Italian, Chinese, Arabic, and Spanish.

Fieldwork Issues

The Importance of Bilingual/Bicultural Project Staff

The use of bilingual/bicultural fieldworkers was seen as crucial to the success of the project. One fieldworker was employed for each of the 4 communities and their roles were to promote the project to the communities, to recruit sufficient participants (6-12) for each of the 4 focus groups, to conduct the groups in the community language, to participate in data analysis, and to run community feedback sessions.

All the fieldworkers had bachelor’s degrees and experience working in various supportive roles within their communities. In selecting fieldworkers, priority was not given to their level of research experience and skills. It was more important for them to be well accepted by the community and to possess or have the ability to quickly develop strong networks within their community. Research expertise and support was provided to the fieldworkers by the project manager and investigators.

Issues Related to Participant Recruitment

Use of Networks

At the beginning of the project, each of the fieldworkers was given a list of individual workers and services for their community developed by one of the authors (Y.S.), who has had a long-standing position in multicultural health. Liaising with other community workers and networks was the most useful approach to recruiting participants. Other means of recruitment, such as church newsletters, radio, television, newspapers, liaising with doctors, and other health workers, were all less successful avenues of recruitment than the former.

The Arabic fieldworker (F.K.), who used personal contacts as part of her recruitment strategy, suggested that her status in the community meant she could visit people in their homes to discuss dementia and invite them to take part in the focus groups. She also noted that having previously established relationships with services was helpful, as the services were happy to help her immediately rather than her having to spend time building rapport and trust with them.

The Italian fieldworker (S.G.) utilized her long-standing personal and professional relationships with residential services, social clubs, and the local church to assist in the recruitment process. However, services had to abide by privacy requirements and S.G. had to devise a recruitment strategy in line with this. To access carers of people living with dementia (PLWD) in nursing homes, S.G. provided letters in stamped, blank envelopes to the facility manager, who addressed and forwarded them on to family carers. The services were happy to circulate the letters as it enabled them to maintain client confidentiality, and S.G. received a good response from this approach. The Spanish fieldworker (J.E.F.-R.) had been in Australia for a short time so did not have the same level of networks within his community. He was assisted to develop relevant connections with the community by Y.S., who is Spanish speaking and very familiar with the local community.

Multicultural workers’ response to fieldworkers was considered to be influenced by cultural affinity with fieldworkers and trust in the project investigators who were known and respected within the local CALD communities. Fieldworker J.E.F.-R. also suggested that discussing the project with local networks led to an expansion of knowledge about aged care issues within these networks. This sharing of information about local resources was a practical outcome of the project unrelated to the research aims, and it had the benefit of strengthening local community networks.

Use of Existing Groups

Some of the focus groups were conducted using existing groups such as carers’ groups run by community organizations. In this case, it was particularly important to liaise with staff normally associated with these groups and explain the nature of the research project. Fieldworkers encountered some difficulties when staff did not understand the nature of the research process or else saw the focus groups as information or support sessions. Although the project was focused on family carers, a nurse at one ethno-specific facility was adamant that we should be interviewing staff rather than family carers, as staff provided the direct care. Another worker wanted to attend the group to learn more about dementia because they saw it as a general information session. In another situation, a communication breakdown between a fieldworker and a staff member of a community organization about the need to confirm attendance in advance resulted in a focus group session being canceled unnecessarily.

These experiences emphasized the importance of explaining the research process clearly to staff of community organizations who may be helping with recruitment. Strategies that fieldworkers used to achieve this included visiting the host service a number of times to speak to management and staff about the research and giving management a letter of introduction signed by the investigators.

Queries and Concerns of Potential Participants

There are several noteworthy points pertaining to fieldworkers’ initial conversations with participants about the project. J.E.R.-F. suggested that the first phone call (often there were 3 or 4) was extremely important to establish trust with participants and that speaking the community language was an important aspect of this process. Another aspect of this first communication was for the fieldworker to explain how they had got the person’s name and contact details. In most cases, a community worker involved with the family had called previously, explained the project, and sought their consent for the fieldworker to call. Families tended to trust the community worker and were happy to be contacted.

Several fieldworkers mentioned that they had to have detailed conversations with participants prior to mentioning the research, whether or not they knew the person previously. Some Chinese participants had concerns about why researchers—perceived by them to be from a government service—wanted to know about carers’ experiences. These people were concerned there would be negative consequences for them if they complained about health services, suggesting this may have been the case in their home countries. In direct response to the issue of carers expressing concerns about discussing personal issues in a public forum, fieldworkers explained that information would be deidentified, that some questions were more general rather than personal, for example, thoughts about information available, and that there was no requirement for them to answer questions they were not comfortable with.

Unlike some previous researchers, ⁷ fieldworkers did not experience problems using the word “dementia” in talking to people in the recruitment phase. Some potential participants had concerns about other members of the community hearing about their family issues, and this was reported most frequently within the Arabic community.

As other researchers have identified, ⁷ there were practical constraints impacting on carers’ ability to participate in the focus groups, such as work commitments, lack of transport, and lack of respite or support to care for the PLWD, while the carer attended a group session. ⁷ In response to these constraints, our study offered to cover the cost of transport by taxi, facilitated respite if needed, and organized venues and times to best suit the participants.

Ethical Aspects of Recruitment

As explained above, recruitment to the focus groups occurred through various methods. Although some of these involved a formal approach such as advertisements in newspapers or community newsletters, others used more informal and personal contacts between the fieldworkers and members of their communities. The research team was mindful of the possibility that potential participants could feel pressure to be involved in deference to the fieldworker and their influence in the community. To reduce the likelihood of this happening, the fieldworkers were made aware of this possibility during their training sessions and appropriate strategies were discussed. As outlined in the ethics protocol for the study, information sheets and consent forms were translated into the community languages, and these made it clear that participation was voluntary, that nonparticipation would not disadvantage them in any way, and that people could withdraw at any time without having to give a reason.

CALD Focus Group Logistics and Processes

Organization and Venues

Focus groups were conducted at times that would suit the majority of participants and at venues that were accessible by either train or car and were known by members of the community. These included ethno-specific organizations, community organizations, ethno-specific residential and respite services, licensed community clubs, a local hospital, and a church property. Holding groups at residential facilities meant participants could also visit the person with dementia from their family in that facility. Conducting focus groups at community centers provided participants with an opportunity to learn more about services available to them.

Providing culturally appropriate food was seen to be an important way to help participants feel both comfortable and valued. We sought to ensure that the food provided was compatible with the cultural/religious needs of each group by liaising with catering staff at clubs, buying food from ethnic bakeries, getting food organized by the venue if it was a CALD organization, and by the fieldworker providing some home cooking.

Beginning the Focus Groups

Setting up and beginning the focus groups for this project involved many of the skills employed in focus groups generally. Practical matters included arriving early and setting up the room, organizing refreshments, and making sure all paperwork was available. Interpersonal skills involved welcoming participants, helping them to feel welcome and relaxed, and explaining how the focus group would run. There were also a range of facilitative skills employed by the fieldworkers such as using open-ended questions within the framework of a semi-structured schedule, allowing free expression of views while keeping overall control of the discussion, drawing out quiet participants, and providing support to participants who became upset because of their personal circumstances.

There were a number of aspects that were more specifically related to working with CALD communities. One aspect was the need to be aware of literacy and how this influenced participants’ understanding of the project and their provision of informed consent. Participants were encouraged to arrive early and clarify any issues they were not sure about. The fieldworker was careful to explain about consent and confidentiality at the beginning of the group.

Greeting participants in their own language in an informal manner was a very important part of the process. The fieldworkers, except when larger numbers made this very difficult, greeted each participant on arrival, introduced them to other members of the group, and explained the process of the focus group. This informal introduction seemed to help participants, particularly those who did not know each other previously, to feel more relaxed and to develop rapport with other group members.

When all participants were assembled, the fieldworkers welcomed the group, introduced research staff and their roles, and explained the purpose of the research and the consent process. Despite the lengthy introduction to each session, some participants remained confused about the roles of different members of the research team. Some saw the fieldworker’s role as being an expert on dementia and would ask them medical questions about dementia instead of responding to the research questions. There was similar confusion over D.L.’s (who attended the groups with her own interpreter) role, with some participants assuming that she was a medical doctor. Despite this slight confusion about her role, the fieldworkers suggested it was important to have D.L. attending the groups, to establish the research as a serious project, and to witness the participants’ emotions and nonverbal communication.

Use of English as well as the Community Language

The information sheets and consent forms were translated into the 4 community languages. While agreeing that translated materials were appropriate, the Arabic fieldworker (F.K.) pointed out that some people, although from Arabic-speaking backgrounds, would not necessarily be able to read Arabic and would prefer English. For this reason, the information sheets and consent forms were double sided, with one side in English and the other side in the community language.

Also in terms of spoken language, there was a need to speak in English at times, either because the participants were not fluent in the community language or else they preferred to speak mainly in English. Of the 4 Italian focus groups, 3 were conducted entirely in English as this was the preference of group participants. Despite English being used in some of the focus groups, it was still important that the facilitators were from the same cultural background as the participants. In the Italian groups, for example, there were references to the nature of Italian families and belief systems. S.G. noted the English-speaking Italians talked more than those in the Italian-speaking group, and she attributed this to the former being more acculturated than the latter, who maintained the cultural tradition of not discussing personal problems in public. These references and cultural nuances would have been missed if the group was facilitated by someone who did not understand the culture.

Cultural Diversity Within a Language Community

The research was conducted with communities who have a common language, even though they may come from different countries. To deal with this diversity, we selected fieldworkers who had worked with many groups within their language communities. The fieldworkers all had tertiary education in the community language, which they suggested helped them understand dialects. In the focus groups, if a participant spoke in a dialect, the fieldworker rephrased/repeated so that other participants could understand, either in English, in another community language, or in a different dialect. The interpreters and translators were similarly skilled, for example, the Chinese translator who produced the focus group transcripts spoke Cantonese and Mandarin along with 2 other Chinese dialects.

Significance of Using the Term “Carer”

The CALD carers are sometimes unsure of the term “carer” and whether it applies to them. ¹⁶ Fieldworkers noted that there is not always the widespread or explicit acknowledgment of carers in their countries of origin that there is in Australia; caring for a family member who needs help is just seen as a normal part of family life. Many participants struggled to answer questions about looking after themselves as carers as they did not see themselves clearly in that role. These issues highlighted the importance of not making assumptions about participants’ understandings of an issue that the researcher may think is obvious.

Implications of the Research Being Linked to a Health Service

The research team had been concerned about whether participants would censor what they said due to the study’s link to a government health service, as has occurred elsewhere. ¹⁷ As it turned out, there were a range of responses that participants made in this regard. Some participants put effort into speaking honestly and frankly about their hospital experiences (some of which were quite negative), because they knew the research was linked to the health service and felt it may contribute to improvements in the standards of care. In other situations, participants tried to quieten a group member who was being critical of the health service. This latter situation resonates with what Garrett et al term the “happy migrant effect,” where people are unwilling to complain about substandard hospital services because of reprisal or the superiority of Australian health services in comparison with those in their country of origin. ¹⁸

Participants’ Understandings of Research

One of the issues that emerged consistently during the project was that many participants had difficulty in understanding the purpose of a focus group. Some people thought it would be a community information session, and others thought it was a support group that would run over a number of sessions. These misconceptions occurred even though the fieldworkers had made considerable efforts to explain the purpose and nature of the focus groups.

Fieldworkers dealt with this situation by giving a lengthy explanation at the beginning of the group session and by offering to follow up any participants who had questions or concerns during the session after the focus group. The main problem occurred when people who were not actually family carers attempted to join the groups. On one occasion, the fieldworker only realized after the session had started that a number of people in the group were not actually carers of a person with dementia. In this case, the fieldworker chose to proceed with the group as she was concerned about the fallout of asking people to leave and also the organization’s response if she was to do so, knowing that it would take a long time to rebuild trust with this organization. However, because of the number of participants who were not part of the target group, data from this focus group was excluded from the analysis.

Community Feedback and Information Sessions

We considered it important to give the communities some feedback, particularly as a number of participants had asked about the implications of the research. Feedback and information sessions were held where community members and multicultural workers were invited, along with research participants. The sessions were presented in the community language, and the program included summary of findings, responding to participants’ questions about dementia, an explanation of outcomes of the research, and a guest speaker, an expert on dementia who took questions from the floor. The sessions concluded with a meal and participants had the opportunity to continue their discussions and meet service providers. Attendance was high, and the majority of the participants requested a copy of the report that the sessions were based on. The majority of the participants were very positive about the sessions, both in their written responses and anecdotally to members of the research team. Many asked for more sessions, thanked us for educating the community, and stated they wished they had brought other family members along.

Discussion

There are a number of fieldwork issues that have arisen during our project, that we have seen as challenging, and that have provided us opportunities to make our findings as complete and authentic as possible.

The first issue is the need for qualitative researchers to become familiar with the cultural communities in which they are working. It is essential to have genuine collaboration with key individuals and organizations within those communities and to go beyond token consultations at the start of the project that have little impact on how the research unfolds. In our case, we consulted with a number of key individuals and organizations throughout the project as well as providing feedback to the communities at the end of the project. It was also significant for the success of our project to have Y.S. as on ongoing project investigator (as opposed to someone just consulted at the beginning of the project) as she is a highly experienced and respected leader in the multicultural health sector. Her involvement gave the project more legitimacy in the eyes of local CALD community leaders.

A second issue is the important role played by bilingual/bicultural fieldworkers in CALD research. Their insight and input have been crucial at all stages of our project: which organizations to involve; how to access networks; how to express and layout publicity; organizing recruitment of participants; explaining the research process; responding to participants’ questions or concerns about the research; knowing how to make participants feel comfortable and safe in the focus group setting; anticipating and managing cultural behaviours; and assisting with data analysis.

An interesting challenge for the researcher is to work toward a supportive relationship with these fieldworkers—providing supervision and accountability on the one hand, while encouraging autonomous judgement on the other. In our case, each of the fieldworkers had different backgrounds and levels of experience with research. The Research Fellow (D.L.) worked closely with each of the fieldworkers throughout the project and provided the type and level of support each person needed. It became clear to her early on that flexibility and responsiveness were necessary in working with each of the fieldworkers, partly because of their different levels of experience and also because the fieldworkers had inside knowledge of how things would work with their community that D.L. did not have. It is vital that researchers accept this reality—that there are some areas of knowledge that they will not have automatic or easy access to—and that they will only access it if they develop collaborative and respectful relationships with the bilingual/bicultural fieldworkers.

A third issue to consider when conducting research with CALD communities is what level of resources that researchers have at their disposal to undertake this type of research. In our project, employment of bilingual/bicultural fieldworkers and translation of all focus groups were quite expensive. Researchers need to ensure they have adequate financial and human resources before undertaking research with CALD communities rather than assuming they can proceed with minimal resources.

A fourth issue to arise is the importance of treating all participants as individuals rather than making assumptions about participants on the basis of their cultural or language background. The importance of considering the individual person alongside the culture is relevant here. ¹⁹ For example, although most groups were conducted in the CALD language, some participants seemed to expect D.L. to talk to them after the group in English, and they showed a sophisticated understanding of dementia, the health/welfare system, and research.

A fifth issue was the importance of showing empathy for participants’ circumstances and appreciation for their involvement in the research. ²⁰ Although this is true for any focus group research, it is particularly the case if CALD participants are not clear about the purpose of the research or have difficulty in understanding some of the discussion.

A sixth issue associated with this project was the value of providing feedback to research participants about findings from the project through community feedback sessions. These sessions were undertaken as part of the collaborative and inclusive approach taken by the project. Seventh, similar to the experiences of other researchers, participants had different understandings of and motivations for attending the focus groups. ²¹ We found that the least amount of confusion occurred when fieldworkers make direct contact with each potential participant, as opposed to relying on information being sent out by a third party.

Conclusion

Undertaking research in CALD communities does not require a completely different approach or set of skills to working with the mainstream population. Working with CALD communities involves all the generic understandings and skills required in any qualitative research. However, it also involves a further level of understanding and skills if the researcher wants to access the CALD community and wants to be able to authentically represent their experiences and views. Researchers should not assume but be aware of the possibility that participating in research may be new and confusing to members of the CALD communities.

We have written this article on research process to encourage reflection about how we go about the research endeavor and to encourage our research peers to make every effort to represent the cultural diversity of the communities they work within.