Ethics, participants and recruitment
The project received approval from the University of Queensland Human Research Ethics Committee and the Sydney South West Area Health Service (Western Zone) Human Research Ethics Committee.
There were two broad categories of participants in the project. The first of these were family carers, who were accessed by focus groups. The second was three groups of health professionals – bilingual/bicultural workers, bilingual general practitioners and geriatricians – who were accessed by one-to-one interviews.
In terms of the family carers, bilingual fieldworkers were the key persons responsible for recruitment and facilitation of the focus groups. One fieldworker was employed for each of the four communities. They all had undergraduate qualifications and extensive experience in education and community support roles within their communities. The fieldworkers received training and support from the research team in facilitation of the focus groups. While the focus groups were facilitated by the bilingual fieldworkers, a member of the research team (DB) was an observer in all groups. DB sat at the back of the group and was accompanied by an interpreter working just with her who quietly explained what was being discussed within the group. This provided an opportunity to maintain ongoing training and support and ensure the quality of the fieldworkers’ tasks throughout the research process.
Family carers were eligible to participate in the study if they had an immediate or extended family member with dementia whom they cared for within the last 12 months. The person with dementia needed to speak a language other than English at home. Flyers advertising the project and calling for participants were translated into the four languages. The bilingual fieldworkers invested considerable effort in liaising directly with CALD community organizations to promote the project. Other means of recruitment included church newsletters, stories and advertisements in ethnic media, and liaison with local bilingual medical practitioners.
The focus groups utilized an interview guide that included questions on issues such the community understandings of dementia, access to dementia-related information, how carers dealt with initial signs of dementia through to diagnosis, use of dementia services and what forms of support carers knew about and used. While this interview guide was used to provide a standard approach across the focus groups, the facilitators allowed considerable flexibility in discussion to allow new issues to be raised by participants.
A total of 121 family carers participated in fifteen focus groups. Of these, 19 were Arabic, 37 Chinese, 40 Italian and 25 Spanish-speaking. Eighty-eight carers were women and 33 men. The youngest carer was 17 and the oldest was 90 years old. Twelve of the groups were conducted in the community language and three in English, at the request of participants. While the groups all used the same schedule of questions, the cultural backgrounds of participants were respected through using a facilitator familiar with cultural norms of communication, venues familiar to the community and culturally appropriate refreshments.
In terms of the interviews with health professionals, all these were undertaken by one member of the research team (DB). The three professional groups were included because they were seen as playing a central role in care of people with dementia. Recruitment was based on lists of professionals within the geographical area of the study. In the case of bilingual/bicultural workers, recruitment aimed to get a mixture of participants from the four language communities and different service types. For the bilingual GPs, a list was drawn up from local networks and GPs from each community approached directly. For geriatricians, the participants represented almost all the geriatricians within the geographical area.
An interview guide was generated through identifying gaps in the published and gray literature as well as consultations with community leaders in each of the four communities studied. Some of the questions sought the professionals’ perspectives on questions asked of carers in the focus groups, such as understandings of dementia, access to information and use of services. Other questions focused on the health professionals’ role in providing dementia education and support to CALD communities.
Bilingual/bicultural worker is a generic term to cover a number of positions in the health/welfare sector. These workers provide culturally and linguistically appropriate services to their communities. Their roles include health education and promotion, community development, running information and support groups and, to a more limited extent, casework and counselling. Twenty-four bilingual/bicultural workers participated; six were Arabic, seven Chinese, seven Spanish and four Italian. Two were male and the remainder female. Three participants were employed in the state health service; two were in multicultural and five in mainstream organizations; 12 in ethno-specific community services; and two in residential ethno-specific services. The length of time employed as a bilingual/bicultural worker ranged from four to twenty-five years.
Sixteen bilingual GPs were interviewed. Four were Arabic, three Chinese, four Italian and five Spanish-speaking. One was a sole practitioner, 10 worked in language specific practices and five in generalist medical centres. 12 were male and four female. Their length of practice ranged from 13 to 37 years.
Twenty geriatricians participated in interviews. All were employed in hospitals and two also worked in private practice. Although not selected on this basis, two geriatricians spoke Arabic, two Chinese languages and one spoke Spanish. There was significant variation in length of practice; some participants were in the process of completing their final training and others had more than twenty-five years experience.