Informal care in the context of long-term health care for the elderly in Slovenia: A qualitative study

This study is the first qualitative study of informal elder care. We decided to interview caregivers that we believed would offer the most information about their challenges and problems with long-term health care for the elderly. Ten caregivers were included in the study and when their answers began to repeat, saturation was achieved. When selecting the caregivers, we considered the following criteria: they have the knowledge and experience that the investigators need (working with the elderly for the last few years); they are capable of reflection (because of established relationship with them prior to study, interviewers chose them according to their own judgement of being capable of reflection); they had time to be interviewed; and they were willing to voluntarily take part in our study.

In November 2018, the interviewers had training on conducting interviews and on methods of qualitative research. At the training, which was conducted under the guidance of DRP and AM, the interviewers were explained how to provide the most variable sample of interviewees. Table 1 presents the characteristics of interviewers and interviews.

Participants (caregivers) were approached face-to-face or by telephone, they received description of the purpose of the study and reasons for doing the research, and no one refused to participate. All interviews were conducted face-to-face, nine of them at caregivers’ homes and one at office, with nobody present besides the caregivers and interviewers. All of the interviews were audio-recorded and transcribed verbatim by a trained transcriber. No audio recordings were returned to participants for comment, but some of the written transcripts were, although none of the caregivers provided any additional comments. Repeated interviews haven’t been carried out. Also some field notes were made during and after the interview, later discussed together with supervisors DRP an AM.

Quantitative measurements in the study are based on databases from the public opinion survey and SORS. Some descriptive statistics were used. The qualitative part made use of an ‘in-depth’ interviewing approach, which sees the interview process as collaboration between the researcher and the caregiver, wherein both partners share reflections and information (27). We used semi-structured interactive interviews. Questions, prompts, guides were provided by the authors. The interview guide questions were designed based on a review of literature and using the comments made by informed advisers. We collected the information with respect to the time period of caring, reasons for the decision of caring, additional support and inclusion of other persons, experiences with health care system, communication with health care staff, their observations of coordination made by health care staff, barriers in the use of health care services, cooperation with district nurses. We also asked caregivers where they acquired the knowledge and skills to care for and what they would need most to improve care. The interview guide was not pilot tested, but it was presented to the Ethics Committee, which had no comments on the script.

In addition to descriptive statistics calculated using the software Nesstar (for online analysis), a qualitative study using qualitative content analysis was conducted. This involved inductive content analysis, which includes coding, creating categories and abstraction (framing a general description of the research topic through generating categories) (28). A manual open-coding procedure based on breaking data apart and delineating concepts to represent blocks of raw data was used (29). All researchers independently coded the interviews and supervised the process. We analyzed the answers of the respondents in concordance with the qualitative content analyses. We formed codes and then combined them into categories (higher rank codes), which can be logically connected and methodically described. Two independent encoders did the final coding. The authors agreed on the differences between coders regarding the differently coded segments of the interviews. Contradictions, assumptions were discussed and resolved by discussion with DRP, AM, and the coding scheme was modified several times. With this, we formed the paradigmatic model, which is available in the results section of the study (also known as the ‘unitizing process’) (30).

The demography of caregivers interviewed is presented in Table 2, which describes the participants in terms of several demographic variables.

The qualitative content analysis identified 4 themes, 32categories and 165 codes with a total frequency of 331.

Four themes involving health caregivers’ experiences with challenges and problems in the field of long-term health care for the elderly were formed. These themes were given names that described the content they illustrated. More detailed findings of this analysis are presented below.

The study was conducted to lighten caregivers’ challenges and difficulties in caring for the elderly. Informal caregivers provide care for multimorbid individuals who have functional and mental disorders and often fears and mistrust. In long-term care, caregivers develop psychosocial skills to gain the trust of the elderly. In doing so, they face the need to obtain guidance and instruction from professional health workers. Caregivers learn through media and posts on social networks and the internet. Improvements are possible in terms of information provision. Helping the elderly takes a lot of time, especially to perform complex tasks, and so those who are employed wish to have flexible working time. They believe that it would also be possible to improve logistical procedures, such as making it easier to obtain an appointment or prescriptions.

In the first theme, Health conditions of the elderly and caregiver’s work, informal caregivers describe reasons for taking on caregiving role, among which care for family members, reciprocity and social conscience. This is consistent with some other studies where, regardless of religion and ethnicity, we observe similar motives for long-term care (31).

In the second theme, Difficulties of long-term health care and types of help that caregivers receive, caregivers pointed out that there is a systemic disorder in long-term health care provision. They are bothered by how their employers are often reluctant to offer them the option to switch to flexible working time or to reduce their working time. Apart from this they can only rely on receiving a partial payment for their lost income. When comparing this issue with the situation in other European countries we realized that most of them face similar problems. In some informal caregiving is a paid activity in different percentages of their salary and amount of time. For example, in Hungary and Romania informal care givers receive an allowance for an unlimited time, while in France, Finland, Denmark for a limited period (9, 10, 14).

Another aspect that troubles them is presented as our third theme, Experiences with formal health care institutions. While they mostly have positive experiences (such as cooperativeness, kindness of medical staff, being able to participate during medical examination) provided oral and written instructions …) with their GPs, home care nurses, doctors and nurses at hospitals and emergency departments, they have also had some negative experiences in the past; for example inaccessibility of GPs, refusal to participate during a medical examination, hostility, absence of elevators in medical buildings, hospital queues, waiting in the hallways, and early discharge from hospital due to lack of available beds.

The caregivers pointed out that they are mostly left to themselves when it comes to finding information on caregiving. Process of obtaining knowledge can be long and, as our caregivers emphasized, is usually developed through personal experience. In the fourth theme they explained that they find and gather information from media (usually on the internet), ask friends and neighbours but have expressed a wish to gain that knowledge from courses and lectures provided by professional health workers (GPs and other medical staff) and patient associations. Several similar studies from Lithuania and United States have also reported a lack of support and knowledge that informal caregivers face every day and lack of much needed formal training. But there are some positive examples of established support groups and information services in other European countries, such as Finland (with a support center for informal caregivers “Omatori”, which provides information and counseling), Germany (with a counseling hotline for informal caregivers) or United Kingdom (with “Digital Resource for Carers” which offers online resources). (15, 32, 33). On the other hand, some community-based training programme for informal caregivers is also provided in Slovenia, one of providers is an Anton Trstenjak Institute of Gerontology and Integrational Relations (15). Training has an important role, because caregivers have to understand the elderly’ health conditions, as it makes it easier for them to offer them quality care, but it is just as important to understand their psychological needs. They have common fears, such as fear of blood sampling, loneliness, deterioration or death, are often feeling depressed, can be impatient or edgy. Health care and psychosocial care are in need to be further developed and their importance is still underestimated (34).

Both in Slovenia and in other European countries the mechanism of the welfare state determinates the status of the elderly (1, 2, 9, 18). Within this context caregivers face similar difficulties regarding their elderly relatives’ conditions, their semi-professional positions and their ability to liaise with public health care institutions (17, 19, 20). They are enthusiastic about learning more and being trained, and they have similar proposals about how to improve informal elder care in their countries (2, 12, 18,).

In addition to several strengths, such as the implementation of an ‘in-depth’ interviewing approach in an unexplored area and the rarity of studies about informal caregivers’ experiences in Slovenia, this study also has some limitations. A general limitation of the study is related to epistemological criteria and validity in qualitative research (30). Although qualitative studies provide rich detail, large-scale representative quantitative surveys are needed to capture a large amount of data and shed more light on the issue at hand. Although the number of interviewed caregivers seems small, the richness of their testimonies has offered enough information to reach conclusions. However, we are aware that the qualitative content analysis has its limitations and know that an additional study at the population level (or at least a larger sample of caregivers) would be the ideal complement to our findings, putting the importance of the findings in perspective (28).

Our qualitative study draws attention to the problem and provides basic findings about informal caregivers for the elderly in Slovenia. Our study points to the needs of informal caregivers and at the same recalls the need for systemic consideration (and improvements) at the policy level. The study has no potential to directly solve the problem, but it is definitely an important step toward finding ways to improve long-term elder care, which is an increasingly urgent need in Slovenia.