As already stated, this research is based on the area of Blackburn with Darwen Borough, which has a higher than average number of people from the South Asian Indian and Pakistani community. The target population for this research is people from the South Asian Indian and Pakistani community living in Blackburn with Darwen Borough, from which a sample of four to ten families with experience of living with dementia was selected. This sample size was considered sufficient to allow a wide range of perspectives, which would produce representative data, since larger sample sizes may stifle the emergence of themes and issues (Bowling, 2009).
5.3.3.1 Sampling
The study sampling was informed by the research topic, which meant that I could not understand an individual‟s experience of having a dementia diagnosis if I included someone
114
with no prior experience of using or receiving a dementia diagnosis. I needed to find people with knowledge and experience of living with dementia, and chose a purposive sampling method to select people with dementia and their family caregivers, which allowed me to select participants, based on their knowledge and experience of the research topic (Sale, et al., 2002). This research aims to explore participants‟ experiences of receiving a dementia diagnosis. How were they diagnosed and why did they seek help at specific stages? What barriers did they experience? It was important to include people with experience of using dementia services, whilst also acknowledging that participants are not representative of everyone in the United Kingdom. Although random sampling provides a representative group and thus a generalisable result, considering the aim of this research, purposive sampling also allows for rich data to emerge, as it emphasises the inclusion of individuals with expertise based on experience (see Table 5.2).
115
Table 5.2: The inclusion and exclusion criteria for a person with dementia and their family caregiver
Inclusion Exclusion
Over 18 years of age Under 18 years of age
South Asian heritage: Indian or Pakistani Not from the South Asian (Indian or Pakistani) community
Living in Blackburn with Darwen Borough Not living in Blackburn with Darwen Borough
Dementia diagnosis within the previous 12- 24 months or family caregiver who is directly involved in the day-to-day activities of the person with a dementia diagnosis given within the previous 12- 24 months
Dementia diagnosis over 24 months ago or family caregiver of a person given a dementia diagnosis over 24 months ago
Capacity for providing consent to be included in the study
Lack of capacity for providing consent
Diagnosed with any type of dementia or the family caregiver of a person with any type of dementia
No dementia diagnosis
Ability to communicate in English and a range of South Asian Indian and Pakistani Languages: Urdu, Punjabi, Pashto, Sindhi, Gujarati, Hindi, Tamil, Telugu, Kannada, and Malayalam.
Ability to communicate in languages other than English and a range of South Asian languages: Urdu, Punjabi, Pashto, Sindhi, Gujarati, Hindi, Tamil, Telugu, Kannada, and Malayalam.
Male or female
People with dementia or their family caregivers were not excluded because of their inability to speak English, or where English was not their first language. If a participant belongs to a South Asian community, it cannot be assumed that English will be his/her first language. Dementia is an illness mostly affecting people over the age of 65, so first-generation South Asian people may be living with dementia, for whom English may not be their native
116
language. They may have learnt English as a second language and since dementia is an illness which may affect an individual‟s language ability, it was not considered appropriate to exclude people based on their inability to communicate in English. In order to ensure that language was not a barrier, every participant was provided with the option of having a professional interpreter present, thereby giving people with dementia a voice and the opportunity to have their opinions heard. The healthcare professional ensured that people with dementia had capacity to consent under the Mental Health Act 2005 (cited in British Medical Association. (2007), as discussed in section 2.3.1 and 5.5.1.
The participants were initially to be recruited through the Memory Assessment Clinic in Burnley and Roman Road Health Centre under the Lancashire Care NHS Foundation Trust (LCFT). The recruitment sites were pragmatically selected, where staff were willing to take part in the research, as the service manager knew about the research and was familiar with the aim and recruitment process. Both sites had a reputation for delivering quality care and support to the South Asian community in the region.
5.3.3.2 Recruitment Procedure
Since this research involves people with dementia, it was assumed that not all participants with dementia would have the capacity to consent. The staff at the recruitment sites were asked to ensure that, before being approached for the study, potential participants who met the criteria set out by the research were also able to provide consent and were aware of their diagnosis. The potential participants who met the inclusion criteria would be provided with an information pack containing the advertisement flyer, the expression of interest form, a simplified participant‟s information sheet for people with dementia, a consent form for
117
people with dementia, a participant‟s information sheet and a consent form for the family caregiver, and a prepaid envelope to post the expression of interest form to the researcher.
Once potential participants had expressed an interest in the research and agreed to be approached by the researcher to further discuss the research, I arranged to contact the person nominated as the first point of contact on the expression of interest form completed by the person with dementia. At this stage, participants would be made aware that the person with dementia and his/her family caregiver could participate in a joint interview. If the person with dementia or his/her family caregiver expressed a wish to be interviewed separately, or where either the person with dementia or his/her family caregiver wanted to take part in the research and the other did not, this would then be made possible.
Participants were given the choice of when and where they wanted introductory meetings and interviews to take place, either at their home, at One Voice offices, at hired meeting-rooms in Blackburn or at Blackburn with Darwen Public Health Department‟s meeting room. During the introductory meeting, potential participants were briefed about the research project and provided with additional details about the study, its aims and what it intended to investigate, with information about how this might be helpful to the commissioning of services, and how their participation/experience as a person with dementia or as a caregiver would be useful to the research. I outlined details of the participant‟s information sheet and consent form, and ensured that participants understood the relevant information to make the decision about their participation. If potential interviewees had the capacity to provide consent and agreed to participate in the study, a non-recorded preparatory meeting was arranged to sign the consent form (see section 5.5.1 on Informed Consent).
118
Once consent was obtained from participants, they were requested to complete demographic forms, to provide insights into their demographic characteristics. At this stage, the researcher discussed with the person with dementia and his/her family caregiver whether he/she would prefer the interview to be conducted in English or in another language. If people wanted interviews to take place in a language other than English, I speak Urdu and Gujarati fluently. Where another South Asian language was spoken, they had the option to have a professional interpreter present, who would be expected to sign an interpreter confidentiality agreement.
5.3.3.3 Data Collection
Clearly, it may be difficult to achieve the aim without asking some sensitive questions. I chose a semi-structured interview method, as this method places emphasis, firstly, on developing a rapport with participants by asking more general questions, then, as rapport develops during interviews, I could ask more sensitive questions (see section 5.3.1: a detailed discussion of semi-structured interviewing methods).
Semi-structured interview procedure
As discussed earlier in Chapter 3, Bamford and Bruce (2000) suggested that the perspectives of family caregivers of people with dementia were used in evaluating outcome criteria for dementia care interventions and services, although the perspectives of people with dementia and those who speak on their behalf did not always necessarily correspond. In this research, a dyad of the person with dementia and their family caregivers was conducted using semi- structured interviews as a means of including alternative perspectives of the person with dementia and their family or carer. The dyads were chosen to enable the research to include two people with similar characteristics in a two-way dialogue. Applying this approach, I would ask a question and the people with dementia would be given the opportunity to share
119
their thoughts first, followed by their family caregivers sharing their opinions. This approach allowed me to observe whether there were similarities between the perceptions of the experience of dementia of those living with dementia and those of their family caregivers.
Interviews began with general questions; as rapport developed between the interviewer and interviewees, I was able to address more sensitive questions (see Appendix 5 for interview questions with PwD and their family caregivers). The presentation of the questions and the time and attention given to each question depended on participants‟ own concerns and interests (Robson, 2002). During interviews, participants with dementia and their family caregivers were viewed as experts, so I drew little inference from what I already know about the South Asian population‟s experience of dementia. I endeavoured to understand the participants‟ experiences by using open-ended and non-directive interview questions and actively followed the experiences shared by participants, probing areas of interest to the research when they arose (Willig, 2001).
The semi-structured interview method places emphasis on perceiving participants as experts, thus participants‟ thoughts, concerns and interests about the research topic guided the interview forward (Robson, 2002). The challenge for the researcher using this method is to ensure that interviews remain focused on the relevant research topic. During interviews, I ensured that interviewees remained focused on the relevant topic. The interviews focused on the participants‟ experiences of dementia, their individual journeys in finding out that they had dementia, how they had coped with the diagnosis, their experiences of dementia services, barriers they had faced which may have prevented them from seeking help or accessing appropriate services (even after receiving their diagnosis), their understanding of dementia, their cultural attitudes towards dementia and their expectations of services. The interviews lasted forty to sixty minutes, depending on the length and depth of the stories participants
120
wished to share. If meetings lasted longer than the projected period of time, participants were offered the opportunity to have a break.
Following interviews, participants were given the opportunity to ask me any questions or discuss issues raised in the interview. At this stage, participants were also asked whether on completion of the study they wanted to be sent a summary.