A short article by Professor Ismo Linnosmaa and Dr Eirini Saloniki has recently been published in the OPTIMI. OPTIMI is a newsletter in health and social economics concentrating on recent research and findings about productivity, effectiveness, costs, finance and incentives in health and social care in Finland. The newsletter disseminates recent research findings to support decision-making at various levels of health and social care. OPTIMI is published four times a year and it is edited at the Centre for Health and Social Economics, National Institute for Health and Welfare, Helsinki. To read the article please follow this link.
By the Finnish EXCELC-team (National Institute for Health and Welfare)
During Autumn 2016 and Spring 2017, six EXCELC-project research assistants visited home care clients and their informal caregivers across many cities in Finland. They interviewed them about their everyday life, use of home care and other themes related to long-term care services. During the fieldwork, the interviewers met very different kinds of people and have had a chance to listen to their life stories. This blog shares the experiences of the Finnish interviewers.
The interviewees considered the study important
In general, we were warmly welcomed by the interviewees in their homes. Sometimes the interview started with coffee that was set ready for the visitor.
Many interviewees told us that they considered the study to be important and therefore wanted to participate in it. They were pleased to hear that the National Institute for Health and Welfare (THL) is conducting the study and were satisfied that their voice would be heard through their participation in the interview. Informal caregivers often made significant arrangements to make the interview happen. For example, a caregiver who was living in another municipality, came to care for an older relative on her day off, assisted with the interview and agreed to be interviewed herself.
Respondents were motivated despite long interviews
The health of the home care clients and their informal caregivers we interviewed varied widely. Some were in very good mental and physical health while others were very ill. The questionnaires used in the interviews are quite long and demanding, and the duration and burdensomeness of the interview was a lot to take in for many interviewees. Nevertheless, only a few interviews had to be finished incomplete, although to complete some of them we needed to come back on several occasions. For the most part interviewees rarely took breaks, except to sip some coffee every now and then.
The questions of the ASCOT quality of life measure were challenging for most interviewees and the questionnaire as a whole was seen as quite burdensome, demanding and long. Even so, most interviewees were motivated to respond to the questionnaire. It was important for home care clients to reply themselves to the questions and to bring out their own thoughts although in some cases the informal caregiver had to act as a proxy respondent because of the health state of the home care client. After many interviews, we feel that people generally had a need to talk about their affairs, which may explain why people were happy to keep going through the questionnaire despite its length.
Loneliness of home care clients touched the interviewers
The interview situations have been important for both interviewers and interviewees. The stories told by the older people we interviewed have been very moving. Stories of interviewees in very poor health, in particular, are etched into our memories.
Hearing of the loneliness suffered from by home care clients and encountering veterans and their spouses has been very moving. Many of us had not spoken before to people who had fought in wars. Alongside this sadness, however, there was also a lot of joy in people’s lives: for example, where the home care user has a close family that cares for them. In many interviews the conversations were cheerful, with laughter and people expressing hope for the future.
A unique experience and an opportunity to encounter different people
We have often stayed some time after the “formal part” of the interview had finished to talk to the interviewee about issues relating to either home care or other unrelated topics. The interviews and these more general discussions have been useful for both parties. The hundreds of interviews already carried out have given us a valuable insight into the performance of the elderly home care service system.
Many interviewees were grateful for the life they have lived and for the services offered by the welfare state. Although they sometimes criticized the service system, many older people were grateful for the services that are provided to them. For us, we have had a chance to hear various stories about respondents’ lives, regarding such as war time, loneliness, illness and hopefulness. Despite the challenges, it has been a unique experience and an opportunity to meet different people.
Recently our team published a research note on the work we undertook to understand people’s preferences for different quality of life states described by the ASCOT service user and carer measures. The method we used to draw out people’s preferences for quality of life states was a task called Best-Worst Scaling (BWS). During this task, we asked participants to trade-off and choose different care-related quality of life states.
We wanted to make sure that the presentation of the BWS task was clear before it was presented in the mainstage study, so we tested the BWS task in a small group of people in England, Austria and Finland. We asked them to reflect on everything they were thinking and feeling while completing the BWS task. We also interviewed these people after the task in order to better understand their decision-making processes.
This research note sets out our key findings and highlights some problems we encountered when we tested this method, along with how we overcame these problems. These changes have now been piloted, and we have just completed the main fieldwork, collecting people’s preferences for ASCOT quality of life states.
We are currently using the data we have collected about how people understand the BWS experiment to look in more detail at how people make decisions about their preferences. This will help us to better understand the data we collected from the BWS task and to plan future experiments. It will also provide us a better understanding of the BWS task overall. We presented this work at the ILPN conference at LSE in September 2016 (see link to our presentation at ILPN here and also Storify of the ILPN conference here) and further discussed these findings at the NORFACE Workshop: Health Politics, Health Policy, Long-Term Care and Inequalities in October 2016 in Mannheim, Germany.
Next year we will provide a further update – some results from the analysis of the BWS data from England, Austria and Finland.
Read more about this study here!
EXCELC team at ILPN 2016
Here are members of the EXCELC team catching-up following another excellent ILPN conference last week (also see Storify of the conference here). There were lots of interesting presentations at the ILPN conference and some great ones from the members of the EXCELC team, with Laurie Batchelder presenting some findings from the development phase of the preference study and Ismo Linnosmaa and Birgit Trukeschitz presenting some reflections on the process of translating ASCOT into Finnish and German. Juliette Malley and Julien Forder also presented on related work and analyses to understand the effectiveness and efficiency of long-term care that we plan to update and expand upon as part of the EXCELC study.
At our meeting we discussed the excellent progress being made in the fieldwork stages of this project. Birgit Trukeschitz, Assma Hajji updated us on progress with the Austrian fieldwork, and outcome from the pilot. Ismo Linnosmaa , Lien Nguyen and Hanna Jokimaki similarly updated us on progress with the Finnish fieldwork and outcomes from the pilot. Juliette Malley, Laurie Batchelder, Eirini Saloniki and Julien Forder updated on progress with the fieldwork for the preference study across all three countries — Austria, England and Finland — which is now complete. Data has been sent to us by the fieldwork organisations and we are currently checking the data to make sure everything is looking OK. We also discussed our plans for our team meeting in February to be held in Vienna and the first meetings of the policy and scientific advisory groups.
More to come soon!