The Challenges
Challenges included taking informed consent (completing reply slips and having a 'reasonable' understanding of their participation); finding opportunities to conduct interviews; involvement of care home staff and residents' families and trying to maintain privacy during the interviews.
Although we had intended that residents complete their 'expression of interest' forms, five residents approached by the researcher said they knew nothing about the study and that they had not completed these forms. In these instances, the researcher left residents information about the study and promised to return the following week. Of these, only one consented to take part and was eventually interviewed. This, and the lower than expected response rate, meant that we needed to invite more residents into the study, which took another two weeks.
When the researcher returned to obtain written consent, 10 of the residents who were eventually interviewed could not initially remember completing the expression of interest form or reading the information about the study, which meant she had to spend some time explaining the study. All 10 residents then had a reasonable understanding of the study, in that they were able to recall the main objectives of the study and the extent of their involvement.
Six potential participants were unable to provide informed consent to participate in the study, despite having produced completed reply slips. In these cases it was clear to the researcher that they were unable to understand their involvement in the study. So that these residents did not feel 'rejected', instead of conducting an interview, she engaged in a short neutral conversation with them and thanked them for their time. None appeared to be concerned about this or asked why they had not been included.
Seizing opportunities
Finding time to conduct the interviews was sometimes difficult. It was necessary to avoid busy times of the day such as mealtimes or regular visits by GPs, hairdressers, chiropodists, etc and to seize opportunities to approach residents, preferably allowing them time to recover from previous activities before commencing the interview. For example, we found it best not to interview residents after lunch as they were often tired and lethargic at this time. The researcher spent a great deal of time waiting for residents to finish activities and interviews were often postponed at a moment's notice if the resident did not feel well, had an unexpected visitor, or simply did not "feel" like participating at the moment.
Staff involvement
We were grateful for the help of care home staff, who were often eager to help, however, on three occasions this involved waking a resident and immediately sitting them upright. This resulted in residents feeling tired, disorientated and less likely to want to discuss the study or to be interviewed. The way in which care home staff introduced the researcher could also be problematic, as they would sometimes emphasise the name of the institution responsible for the research, resulting in some residents being confused as to who wanted to speak to them and why. Some initially thought that she was a hospital doctor visiting to discuss their health. These misunderstandings occasionally worried residents before they could be reminded of the purpose of the visit. However, once these initial problems were resolved the interviews generally progressed smoothly with the majority of residents saying that they had enjoyed taking part.
Privacy
Since interviews covered issues regarding the resident's care in the home, privacy was important. However in the majority of cases, the resident's door was left open or staff would enter the resident's room during the course of an interview. On two occasions staff had moved residents to a hallway and dining room where there was little or no privacy. Since most residents had mobility problems, moving them to places where they would have more privacy was time consuming and usually involved enlisting the help of busy nursing home staff.
On two occasions a member of the resident's family asked to be present for the interview. This may have had an impact on both the resident's privacy and the quality of responses given. In both cases, family members were anxious about the 'burden' the interview would place on the resident and the types of questions that would be asked. Both residents seemed to gain immense support and comfort from their relatives being present. For the relatives, it seemed also that the interview presented a chance for them to air problems that they felt would not otherwise have been raised:
"That was my main problem. I mean we used to come in, every time we'd say "Oh has she been put on the toilet?" and they'd say "Oh yeah" you know, but you know that they hadn't, and the other people (...) (whispers). But I mean you're happy though mum, aren't you?" (Daughter of Betty, a 94 year old woman who had heart failure and mild cognitive impairment)
They also often 'prompted' the participant to respond, or reminded them of events which they had forgotten. These residents then seemed to delegate all responsibility for answering certain questions to their relative, which could affect the objectivity and validity of some responses.
Residents' feelings about taking part in the research
Of the 18 residents interviewed, 13 commented positively about their experience. Comments included enjoying having some company, being able to express their opinions freely, and feeling that they had contributed something that might benefit others in the future:
"...it makes me feel that at least somebody's interested in me." (Anne, an 84 year old woman who had a stroke)
"Well it's quite nice being talked to and expressing my opinion of what I feel and how I don't feel and you taking part in it." (Ellie, an 88 year old woman who had a stroke)
However, although they appeared to enjoy the interview, two residents said that they had initially been uncertain about how the interview would be conducted and what the experience would be like:
"Oh I've enjoyed this conversation. But I thought, the way they asked me about a week ago, that they were sending these interviewers round and I thought there'd be about three or four here, so why have they picked me out?" (Ellie)
"Well I wondered what they were going to do to me. (smiles) I hope I answered the right questions." (Jack, an 85 year old man who died the day after the interview)
Three residents were a little concerned about their 'performance' during the interview, commenting that they hoped they had answered correctly and not "talked too much". In all cases, the researcher reassured the resident several times during the course of the interview that there were no right or wrong answers to the questions, and that all views were useful and valid. Some participants took pleasure in answering the questions as they felt that this showed that they were not suffering from cognitive problems:
"I'm glad I've got the brain to answer you really." (Ellie)
"Perhaps it's because I can talk better and converse with, better than some of the people here because some of them have Alzheimer's disease and Parkinson's disease, and perhaps it's because I'm more...brainy (laughs)." (Anne)
Feeling free to criticise
The majority of residents (15/18) seemed to feel free to comment on their day-to-day routines and the care they received in the home. Although residents were satisfied with much of the care they received in the home, most described situations which they felt could have been handled differently by staff and suggested ways in which their care could be improved. However, three residents felt uncomfortable about voicing such criticisms:
"I found it difficult when I first came in to co-operate with the night staff. They didn't have a lot of patience. The day girls, they've been wonderful. Perhaps I shouldn't say this, should I?" (Sara, an 81 year old woman with chronic obstructive lung disease)
This could indicate concerns about reprisal from care home staff and the desire to maintain the status quo of their 'home' environment.