Over 400 interviews with Austrian home care service users were originally planned as part of the EXCELC project in 2016/2017. More than 600 have been carried out successfully. Data collection was supported by the Austrian Federal Ministry of Labour, Social Affairs, Health and Consumer Protection, by social care organisations and local authorities.
More than 60 trained interviewers took on the task of visiting people in need of care in their own homes to conduct interviews. About half of them gave us detailed written feedback describing their experiences and their impressions. This blog is based on unstructured accounts of their experiences. Quantitative analyses of the data collected through the standardised personal interviews can be expected in September 2018.
“Sharing a part of their lives”
Respondents freely voiced their hopes and fears relating to their situations. Our interviewers were able to gain insight into the respondents’ lives and their care situations both through the interviews and the conversations that often followed. One interviewer happily noted: “the ladies were very vivid in their descriptions, it felt like they were sharing a part of their lives with me”.
The term “in need of long-term care“, and the multitude of situations to which it can refer
Some long-term care service users are quite affected by cognitive decay, memory problems, or are depressed or afflicted by other mental conditions. Others, however, have an active mind but are trapped in a frail body. They, for example, follow technological innovations and keep up with digital means of communication – such as Mr. S, who likes to download the newest apps onto his smartphone, or Mrs. M, who regularly uses Skype to make phone calls to her grandchildren living abroad. Digital innovations aside, they also get creative in other areas when it comes to dealing with the physical constraints they are facing. Mrs. L, for instance, makes use of a cord and basket to bring groceries and mail up to her first-floor apartment.
The challenge of accepting one’s own need of care
The first important step – and often a challenge in itself – consists of coming to terms with one’s own need for care and in accepting help and assistance. Sometimes, this leads to a reversal of roles – as in Mrs. W’s case: she has spent most of her life caring for her physically disabled daughter but now finds herself in need of assistance because of cognitive impairments. While some people take a long time to come to terms with restrictions they face, others adapt to their new situation rather quickly. In the course of the interviews respondents discussed the process of adapting and adjusting to new circumstances. In many cases, these mechanisms are offered as an explanation as to why respondents are happy and doing well even in difficult situations. Our interviewers were often impressed with the respondent’s positive attitude and coping strategies.
Care at home – not enough assistance?
In many cases, our interviewers got the impression that the care services people received in their homes helped them a great deal – at least at first glance. Home care enables them to stay in their homes and help them overcome the obstacles and challenges of daily life. However, at second glance, it often became evident that the services provided only basic support and that some needs remained unmet.
As our interviewers have observed, it is the social needs of care recipients which are left unattended. Care service recipients feel clean, well-fed and safe, but seem to lack interpersonal relations and meaningful interaction. Visits from care workers are a welcome change but time is short and the required paperwork often ate up the little time left that could be used for some conversation.
Care workers are trusted and significant people in the lives of long-term care service users. This is especially true for persons living alone who don’t have many outside contacts – for them, visits from care workers can brighten up their entire day. On many occasions, interviewers have heard respondents talking about care workers using terms of endearment, speaking of their “fairy” or “wonderful Maria”.
However, recurring changes in personnel and uncertainties about the times of visit are often causes of discomfort or insecurity for the care service recipients. A great deal of flexibility and patience is needed on their part to adapt to new schedules and new caregivers, requiring them to explain over and over again what’s important and what to watch out for. This creates a lot of insecurity, especially for older people who might not be as able to adapt to changes and have a preference for clearly structured routines.
Care arrangements you can depend on – especially in the case of live-in carers
Some respondents with live-in caregivers have trusting and amicable relationships with them. Others, however, are less satisfied with their arrangements, voicing their despair and anger. Ideally, most care recipients would prefer a reliable, stable care setting. Finding a suitable live-in caregiver is difficult and full of obstacles, making the process difficult and tiresome. Moreover, even those who have found a live-in caregiver might still be faced with uncertainties, such as their care provider finding a more promising job and leaving them with no other option than to move into a nursing home.
Financial distress and its consequences
Financial strain, small pensions and a lack of means for taking up more care services are brought up and discussed. Thus, long-term care allowance (“Pflegegeld”) recipients became frustrated if applications for higher long-term care allowance had not been successful.
For some, lack of information is a legitimate problem…
Our interviewers noted that there tends to be a lack of information – many respondents don’t know about available long-term care services and ways of paying for them. Mr. P is one of those cases – he would like more social interaction in his daily life, but had never heard of visiting services or day care centres before the interview. Or Mrs. D, who was applying for care allowance for the first time and didn’t know who to turn to for assistance. There is substantial information available via the internet – but only a small share of those in need of care services have access to it or are web-savvy enough to use it for this purpose.
This has been a selection of interviewer impressions from interviews with long-term care recipients in Austria. Results from the statistical analyses will be available in September 2018.