Abstract
Introduction
Public confidence in the Swedish Social Insurance Agency (SSIA) has declined considerably during the last years, and today it is one of the least trusted public institutions among the Swedish general public [1]. Reorganizations and changes in the functions within any public institution may influence its work, as well as the actual services offered to the public. The Swedish sickness insurance scheme, which is one of the major tasks the SSIA has to handle, is governed by regulations changed since 2008 [2]. At that point the insurance became more restrictive and the so called rehabilitation chain to return to work was introduced. The new regulations resulted in an increase of sickness benefit rejections as well as withdrawals of sickness compensations [2]. Even if we now see a reoccurrence to an increase of granted sickness benefit again, the more restrictive attitude of the SSIA has probably affected the confidence of people who need the benefit [2]. It is important to find out how people with different experiences of the sickness insurance regard and describe their confidence in the SSIA to learn more why confidence has dropped and understand how it influences return to work.
In comparison to other countries, Sweden has had a higher absence due to sickness [3]. Being on long-term sick leave has been shown to be a strong predictor for low self-perceived health, future exclusion from the work force and premature mortality [4–6]. Sickness absence can also have effects on other aspects of life. People who have been sick-listed for a longer period perceived recreational activities, as well as life as a whole, as unsatisfactory [7–9]. The sick-listed people turned out to be unsatisfied with their private economy [7, 9]. Economic stress has been shown to affect people’s mental health negatively [10, 11]. The function of social insurance is to ensure economic security when ill, for example. Research points at social insurance as having a certain protective effect against economic marginalization and may accordingly exercise positive influence on health [12]. Anxiety about the social consequences of sickness declines, and the possibility of money for medicine, care and treatment increases. This might also increase possibilities to concentrate on rehabilitation back to work. It is important that the social security system offered by society is regarded as fair and reliable. The SSIA is the public institution which administers sickness insurance, and accordingly it is of great importance that both the people in need of the benefit and the general public put confidence in that particular institution.
Confidence in public institutions, such as the SSIA, is a core value in modern society and is of importance for a well-functioning democracy, political legitimacy and economic growth [13–15]. Scholars studying the quality of government have found that dysfunctional public institutions play a major part in many of the world’s most severe economic and social problems [16]. Public institutions characterized by impartiality, efficiency and the rule of law are crucial for a stable democracy and public institutional confidence. Previous research shows that confidence in public welfare institutions and support for the universal welfare state are high and stable among the general public in Sweden and the other Scandinavian countries [16–19]. One of the characteristics of the universal welfare state is that it integrates large sections of the salaried groups into the core of the welfare system and by doing so generates strong support from the middle class [17, 20]. In Svallfors longitudinal study from 2011 there are no signs of any decreasing public support for welfare politics in Sweden. Since at least the 1990s there is stability in the positive attitudes concerning the public financing of social insurance, such as sickness insurance and pensions, and the public delivery of welfare services, such as education, health care and social work [17]. The willingness to pay more taxes for welfare policies has increased sharply between 2002 and 2010. Svallfors shows there is a clear decline in welfare suspicion, i.e. the proportion of respondents who believes that it is common that social benefits and services are used by people who do not really need them.
One of the few exceptions from the general pattern of strong welfare state support in the Svallfors study [17] is the decreasing trust in the task performance of social insurance, which is completely in line with the development in the last decade concerning confidence in the SSIA [1]. Since 2002, confidence in the SSIA has declined significantly. In 2002, 37 percent of the population in Sweden had very or fairly much confidence in the SSIA and 16 percent had very or fairly little confidence in the authority. In 2010, the figures were reversed. 13 percent had very or fairly much confidence in the SSIA and 54 percent had very or fairly little confidence. Confidence in the SSIA varies among different groups of people [1], and it is particularly little among people with poor perceived health and a history of sick leave. For example among those having experienced low perceived health, 62 percent stated they had little confidence in the SSIA [1].
Factors, like the legitimacy of the institution and how it acts, reflect confidence. The institution’s legitimacy is founded on the predominant values of the people, i.e. how important they find the function of the public institution [21, 22]. Qualitative research has demonstrated the importance of how the SSIA administrators in charge treat clients when it comes to their health and possibility of return to work [23–25]. The quality of the reception influences the clients’ self-images, which in turn affect the possibility of return to work [23]. A respectful treatment by for instance an SSIA administrator increased the confidence for return-to-work [24]. A negative treatment by administrators or rehab staff may, on the other hand, set deep marks on people on sick-leave [25]. Being received in a way that promotes feelings of guilt and shame may well affect health negatively and thus become counterproductive in rehabilitation back to work [25]. Among those who had been met with a bad reception and felt mistreated a majority stated this to be an impeding factor in their rehabilitation [24]. Consequently, it is essential to learn more on how confidence in the SSIA influences the return-to-work process.
There are few studies that have explored how people perceive the way contact with the SSIA affects confidence. It is valuable to let the people themselves describe what factors determine confidence to reach a more profound understanding of the causes for decreasing confidence. The aim of this focus group study was to investigate how people with experience of the sickness insurance perceive and describe their confidence in the SSIA.
Method
The focus group methodology was used. This group discussion method distinguishes itself from other qualitative group methods by explicit use of group interaction to collect data on a topic chosen by the researchers [26–29]. The communication between the participants is decisive for the outcome and the group process encourages the participants to clarify not only what they think but also how and why they think in a certain way [27, 28]. The group interaction makes it possible to study different viewpoints and opinions on a topic which results in broad data collection [27–30]. Focus groups consisting of up to six participants have been found to be preferable to larger groups. The smaller group gives greater opportunity for dynamic discussions and allows for enough scope for all participants to express views [27, 30]. The participants help the researcher to new knowledge by sharing experiences with one another, discussing different standpoints, and asking each other questions [27, 31].
This study was approved by the Ethical Review Board in Gothenburg, Sweden, with the registration number 148-13. Informed consent for participation in the study was obtained from participants.
Study population
The study target group are people that to a varying degree have had contact with the SSIA, after applying for economic compensation in relation to illness. Both homogeneity and heterogeneity were considered when designing the groups to create group identity and an open atmosphere stimulating group discussions [26, 32]. The homogeneity consisted of the shared experience of having been in contact with the SSIA to apply for economic compensation in relation to illness. The heterogeneity was attained by having both women and men of different ages, different socio-economic groups and nationalities. It was essential that people with varying diagnoses participated. There were representatives that had short term contact with the SSIA and others with long term contact with the SSIA.
Five different ways to recruit the participants were used to achieve a broad and varying representation of people with experience of sickness insurance: a) asked health care professionals in Region Västra Götaland, Sweden to distribute information about the study to the target group, b) provided face-to-face information about the study to client associations and public activity centers, c) adverted on bulletin board system (BBS), d) adverted on noticeboards at the Gothenburg university, primary health care centers and libraries in Gothenburg, and e) used snowball sampling, a recruitment method that uses social networks to gain access to the target group (33). Those interested in participating in the study were encouraged to contact the research team. Sixty-two persons announced interest to participate in the study. The main reasons for not participating (21 dropped out) were: not being able to attend to the group meeting (n = 7), withdrawing announcement (n = 4), belonging to an already overrepresented group (n = 10). The final number of participants was 41. Eight focus groups were designed with 4 to 6 participants each (Table 1).
A majority of the study population was women (63%) with median age of 45 years (24–61). The majority had university education (54%), was employed (58%), and held non-manual higher socio-economic positions (32%). Characteristics of the participants are presented in Table 2.
63% of the study participants were sick-listed during the time of participation in the focus groups. The number of sick-leave days during current or most recent sick-leave period ranged from 31 days to more than three years. There was a large variation to diagnose, although most participants were sick-listed because of mental disorders or musculoskeletal disorders (Table 3).
Procedure
Information about the study purpose and procedures was mailed to the persons that showed interest in participation. The research team then phoned the person to give more detailed information, and to ask for participation. Both written and oral information stressed participation was voluntary and could be terminated at any time. A first connection before the group session was arranged for each participant. The research team had an opportunity to establish contact with each participant, to collect information about the sickness insurance experience, and to gather socio-demographic data for putting together suitable groups. The participant learned more about the study and signed the formula of consent.
The data collection took place at the Sahlgrenska Academy, Gothenburg University, from May to September 2013. Each group met one time, and each session lasted from one hour to one and a half hour. The discussions were audiotaped. They were moderated by the first author and assisted by the second author. All sessions started by clarifying the purpose of the study and the procedures of the group discussion. The participants were encouraged to take part in the discussion freely, and to express their own views and experiences on the topic. The moderator stressed that the experts of the topic were the participants themselves. The participants were asked to give the rest of the group a short presentation describing themselves.
The moderator guided the session to concentrate on four fields of investigation. The first concerned how confidence in the SSIA had been influenced by reception at the institution. That is confidence in the SSIA as influenced by personal meeting with administrators, and indirect meeting in the form of SSIA accessibility and communication. The second field concerned how confidence for the SSIA had been influenced by the opinion of the handling of the case with regard to competence, professionalism, and efficiency. The third field concerned how confidence had been influenced by the opinion of fair outcome and expectations from the SSIA. The fourth, and last, field of investigation concerned how confidence in the SSIA had been affected by the legitimacy of the SSIA and the public sickness insurance. The participants were asked if other factors beyond these fields of investigation affected their confidence positively or negatively.
Analysis
Every group discussion was recorded and transcribed word for word. The analysis was made jointly by the prime and second author. Krueger’s [18] analysis guide for focus group discussions provided the frame of reference for the analysis. The analysis started during the course of the group discussions, because the group leader had to catch the true significance of what was said to fully understand its meaning. The next step was to listen through all the discussions several times to get acquainted with the material and understand it in its entirety. All the transcriptions were read through, and with help from these and listening to the recordings, preliminary themes and sub-themes were identified. All the raw material that was relevant for the aim of the study was sorted into themes and sub-themes. The meaning of the separate parts was set against the whole, and vice versa. During the sorting phase the themes and sub-themes were continuously revised until they did the raw material justice. The analysis was based on the content of the discussions, rather than the participants’ separate remarks. That is to say, the meaning appeared from how the participants discussed with each other, and it was analyzed in the context of the discussion [26, 32]. Based on the sorted raw-data, descriptive summaries of every theme and sub-theme were written, and illustrative quotations were chosen. Finally, the descriptive summaries were used as a starting point to interpret and comprehend the material. The material was abstracted and given a professional diction to elucidate the meaning of the discussed matters in more general terms [32].
Results
Four themes formed the basis for the participants’ confidence in the SSIA. These are described as being on a societal, organizational, and personal level. In the theme System change, the participants described how structural and social factors, like increasingly rigorous rules and constraints in the sickness insurance, affected confidence negatively. The theme Rule of law showed the sickness insurance process was seen as uncertain, and the work of the SSIA and the sickness insurance guidelines were lacking in transparency. How the SSIA is organized and the way sickness insurance is handled thus affected confidence. In the theme of Reception, the participants described how confidence was affected by meeting with the SSIA administrators. Personal contact with the administrators was crucial in creating the image of the SSIA as an institution, and because of this the theme had a major influence on how the SSIA was perceived. The theme Vulnerability focused on the individual negative consequences leading to the other themes. The feeling of powerlessness in relation to the SSIA worsened perceived health, but could also be a source for finding strategies and to shoulder the responsibility to change the situation. The participants’ own responsibilities were seen as too much of a burden and they discussed other options to avoid using the SSIA and the sickness insurance. The experience of vulnerability made a strong impression and influenced the participants’ confidence in the SSIA negatively. The themes were on different levels and they were described as affecting and interacting with each other. System change affected the rule of law of the sickness insurance and also affected the reception the participants experienced (Fig. 1).
System change
The participants felt the SSIA and the sickness insurance were determined by political decisions and the primary goal was to reduce the number of sick-listed. Political control led to stricter regulations which, according to the participants, could not be applied to reality. They believed regulations forced the SSIA to follow directives meant to allow only a few to benefit from the sickness insurance. The participants felt that the insurance no longer corresponded to their expectations of a welfare state. The theme System Change contained four sub-themes: Political governance, Rules and regulations v reality, the SSIA’s internal policy and Expectations and legitimacy.
Political governance
The SSIA has, according to the participants, become harsher due to stricter rules issued by the present government. The participants compared the current political governance with how sickness insurance worked before, and they discussed what might be the reasons for tougher governance. The public debate about people cheating the sickness insurance system was viewed as a contributing factor to the stricter system. According to the participants, the political governance was hinged to a social climate that, compared to before, increasingly questioned the right of sick people to be granted economic compensation from the sickness insurance.
Rules and regulations v reality
The participants criticized the harsher rules and regulations from political governance. They argued that the rules did not correspond to reality, and the time limits of the sickness insurance led to people being passed around to different social security systems. The participants were of the opinion that the regulations do not take other stake-holders into account, for examples the medical service’s means for medical investigations or treatment, or the situation of the labor market.
The Insurance Agency’s internal policy
The participants discussed what they thought the SSIA internal policy had come to look like. They meant the SSIA must save as much money as possible, and many thought the SSIA uses quotas and bonuses to ensure that no more than a certain number of people are granted sickness benefit. Directives from a higher authority within the SSIA were believed to affect the administrators’ scope and to force them to negative action vis-á-vis the insured. The participants expressed understanding for the administrators and their working conditions; the administrators were hard-pressed by rules, and they were forced to question sick people and turn them down.
Legitimacy and expectations
The participants expressed strong support for a state-administered public sickness insurance. They thought everyone, regardless of income, should get support if they fall ill. They argued that it is an important part of a welfare system to have that security. The participants took it for granted that they would get economic benefit if they fell ill, however they did not think that the sickness insurance lived up to their expectations. They felt the sickness insurance should refer to presence of disease and not focus on work incapacity. They were surprised that falling ill was not enough to receive benefit. The participants expected to receive compensation for loss of income to a greater extent than they did. They argued that the compensation level is too low, and cannot be survived on. Discussions on expectations sounded like this: I didn’t know anything about, I had no opinion about the SSIA before I came into contact with them. Neither did I, actually. ... well, I thought that this was a, that you would get your sickness benefit for being ill, there’s nothing to it, really. Just send in your doctor’s certificate, and you get your benefit just because you’re entitled to it, like. I thought so too. So did I. I didn’t imagine there would be a struggle, I didn’t. Thought it would be all very easy, as if a, simple stuff, like. Why, I had been ill, and to send off the doctor’s certificate and then get my money, cause I had the right to it. So, having to, like, struggle with it for months and months, and appeal, and all. I wasn’t aware of that at all before this. I hadn’t heard anything. Had the same. I didn’t know anything when I fell ill. I thought that you received money when you were ill. I thought that to be a matter of course. But later, when I finally, yes, there was some social welfare officer that had phoned and made sure that I was entitled to sickness benefit, and then it turned out that I didn’t, really, according to some funny rules- so, that I had worked, didn’t count, and then I had to apply for something that took five months before I got a reply, and meanwhile you didn’t get any money. You had to fend for yourself, like.
Group 5
Rule of law
Confidence in the SSIA was affected by how the participants perceived the rule of law in the sickness insurance system. The SSIA’s handling of the individual cases made the participants consider it as an insecure process; they could not be certain if they would get benefits. They meant that the SSIA could overrule the right to get benefits and they could turn people down. This uncertainty lessened confidence in the SSIA. The participants argued that transparency was lacking in the insurance system due to a lack of clear directions. They did not have the means to follow their own case through the proceedings and thus could not get access to documents. The fairness of outcome was considered low because the assessments the decisions were based upon were seen as random and arbitrary. The participants experienced systematic discrimination; they did not believe people to be treated as equal before the law in sickness insurance. The Rule of Law theme included three sub-themes: Uncertain Process, Transparency and Fairness in outcome.
Uncertain process
Approval to take part in the sickness insurance was described as an uncertain process. The participants felt they would never know if they would be granted benefits or not. The wait could be long with a possible loss of earnings. Applying for sickness benefit was a financial gamble. The participants could not predict if a doctor’s certificate would suffice. Even when the participants had certificates stating they were ill and had no work capacity, the SSIA’s own physician could make a different assessment and deny the benefit. The participants felt a disregard for the rule of law when the judgment of a medical insurance advisor who they never actually met in person could outweigh their own GP’s opinion. The discussion went as follows: Well, I had never heard about seeing this doctor at the SSIA. They usually do this without seeing you. The assessment?? The assessment, yeah. Yeah, right You can question that, right. Getting an opinion of somebody, like, without actually seeing that somebody, and just looking at a piece of paper, but, yeah. I wouldn’t know at all about these doctors there. If they give opinions on all cases, or just the odd case, or? It’s all in their own interest, right? They have the SSIA interest, so then it doesn’t matter that my doctor’s certificate says differently. In their eyes I’m like declared fit. They want me out of the system. Exactly. Exactly.
Group 8
A recurrent discussion concerned the SSIA’s lack of transparency and lack of outward communication about what they based their decisions on. The participants felt a lack of mutual communication. They did not get enough feedback from the SSIA. They had little opportunity to influence the decisions being made. Participants thought there were no guidelines to be found where they could read and understand what the conditions were for being eligible for benefit. They could not check, in writing, whether the SSIA’s decisions were correct or not. Information on sickness insurance was perceived as vague and open to interpretation, and it was difficult to find out what rights you have. SSIA administrators gave inconsistent messages and the participants did not think they could trust if what the officer said was true. When the participants tried to find out the conditions for applying they were not given satisfactory answers, and they got different answers depending on whom they were talking to.
Fairness in outcome
The participants felt who got the benefit and who did not was haphazard and arbitrary because it was up to each administrator to assess the case. Two administrators could assess the same case in totally different ways. The same administrator could, according to the participants’ examples, assess a case differently at different times. Those participants who were satisfied with their SSIA administrators expressed their positive experience as being due to sheer luck. The participants believed the SSIA systematically discriminated against certain groups in the sickness insurance: diagnosis, employment status, age or other factors determined the possibilities to receive benefit.
Reception
Confidence was affected by the participants’ reception by the SSIA administrators. The personal contact with the administrators created an image of the SSIA as an institution, and this had a major influence on the participants’ impressions of the SSIA. Positive experiences of the meeting with the SSIA administrators could increase confidence, even if the participants were negative towards the SSIA on a social and political level. Negative reception was seen as making the assessment process more difficult and rendered reduced confidence in the institution. Low access and lack of continuity obstructed the potential for good meetings and a good reception. The theme Reception contained four sub-themes: Treatment, Competence, Availability and Continuity.
Treatment
The participants’ image of the SSIA was strongly influenced by the widely varying treatment experienced from SSIA administrators. Some showed a respectful and sympathetic attitude, making the reception a positive one for the participants. According to the participants a positive treatment meant the administrators behaved in a humane way, which stood in contrast with the less empathic administrators, perceived as only representing SSIA interests. Treatment was important for the perception of the SSIA and the whole process got more complicated and resulted in a feeling of being thwarted if the administrators showed a negative, unsympathetic attitude. The feeling of having the administrator on their side reassured the participants and made it easier to focus on recovery. Discussions on treatment sounded as follows: I believe that it is all about the bloke or girl you get at the SSIA, ‘cause this bloke’s just lovely, like. I haven’t had a person that helped me as much as he did before. Well now, now it has turned, confidence, as far as I’m concerned, anyway. But if that will go on, you just don’t know. It might just turn the other way around next time, too... Yeah, mine’s like that, too. I’ve had two different this last soon-to-be year that I’ve had contact. The first meeting with that administrator was really good and really positive, and I was shocked. You carry all those stories with you, like, about people whose sickness benefit periods have expired, who are amputated, and supposed to be able to walk, and you have it. So I was all shocked after the first real meeting, like. And, yeah, ‘take your time, don’t rush back to work because that won’t do you any good’. I left, and thought ‘What? Is this it?’ Then they changed, and I got another administrator, and then it all came to a complete stop. It all like differed depending on ...
Group 3
Perception of the SSIA administrators’ competence and training affected the participants’ confidence in them. The participants reasoned a competent administrator had more authority when it came to making independent decisions. They discussed the administrators’ function and what qualifications they thought were needed for employment at the SSIA. The administrators’ general competence was thought to be too low. Medical knowledge, specifically, was seen as insufficient and it was argued that the administrators, if not sufficiently aware of their own lack of knowledge, could make incorrect assessments.
Accessibility
The perceived accessibility largely depended on how easy or hard it was to get in contact with the SSIA administrators. The participants felt it was positive to have a continuous, mutual and personal contact with an administrator. Personal contact with the administrator was often minimal, and the prospects of getting in contact with the administrator were slim. Trying to get hold of administrators via the customer service was experienced as frustrating and time consuming. The participants were critical about no local offices to help out. They were referred to the centralized service center where several other public services were represented. The fact that the SSIA did not have a separate office where the participants were welcome reinforced the image of the SSIA as unavailable.
Continuity
SSIA administrators were often replaced, and the participants were sent back and forth between different administrators. The lack of continuity made it difficult to keep track of who was responsible for what, and made work rehabilitation more difficult. It was exhausting for the participants to constantly have to repeat their story. The participants dared not trust their luck to keep when finally finding a trusted administrator.
Vulnerability
The participants felt powerless and discredited in their contacts with the SSIA. The feeling of not having the power to influence and feeling not believed led to a perceived deterioration of the participants’ health. The participants tried various strategies to increase the chances of benefitting from the sickness insurance, but felt the effort to affect their health negatively They thought it was wrong that they needed to shoulder the responsibility for making sure the collaboration between the SSIA and other stakeholders worked. The participants felt the SSIA should be responsible for coordinating the other rehabilitation stakeholders. The theme Vulnerability contained three sub-themes: Powerlessness, Responsibility and Ill health.
Powerlessness
The participants felt that the SSIA often questioned what they said. The SSIA distrusted both the participant information and their doctor certificates. They felt like their words did not pull any weight with the SSIA and this created feelings of powerlessness. These feelings were reinforced by the fact that the SSIA could make demands, but the participants could not demand anything in turn. The participants felt like their lives were in the hands of the SSIA. They felt frustrated over being distrusted. The discussions about powerlessness sounded as follows: But, thing is, that it all feels a bit like first we’ll humiliate you, then maybe we’ll see if we can help you. I know that, too. This stuff about you, they interpret to their own advantage, that is to say, to my disadvantage. All this about being distrusted (doubted?), it feels ever so humiliating. But I’ve been told by many... You almost have to crawl before them to... You just don’t know what to do to make them believe you, like.
Group 7
The participants described how they had to take on a great responsibility for making sure they were eligible for benefit and then to make sure that the process moved forward. They needed to make sure that the rehabilitation shareholders contributed. They felt that they had to compensate for the lack of interaction between the SSIA, the health care, and the employers. The participants tried various strategies to increase the chances of getting the benefit, such as not asking for too much and instead settling for a lower benefit level than preferred. It was seen as necessary to be one step ahead of the SSIA. The whole process was seen as both time-consuming and energy consuming. The burden was perceived as too heavy for a sick person.
Ill health
The SSIA’s questioning the right to get benefit worsened the participants’ mental health. Many of them felt a great unease when being in contact with the SSIA, and experienced fear and anxiety. They felt worth less now that they had fallen ill. They felt the SSIA did not contribute to their rehabilitation, good health and return to work; the SSIA was perceived as being counterproductive. Other solutions were considered among the participants, like working part-time instead of being on sick leave, because of this perception. The participants preferred to sustain their livelihood in any other way rather than via the sickness insurance and being obliged to have contact with the SSIA. A discussion about how the SSIA contributed to the participants’ ill health sounded as follows: You feel very ... I felt like a pile of shit.. They’ve given me ever so many suicidal thoughts. Your contact with the SSIA? The SSIA when they’ve made a fuss about things, and refused you, and delayed and made a fuss, and not been very nice at all. Well, I believe I’m still alive because I have kids. It’s my daughter that’s kept me going (...) I felt very much let down by society, because I had worked and had the right to do that, so I felt that now I’m good for nothing, just because I fell ill and stuff. That’s how I felt. I also felt very much let down. Powerless. Everything, well, I don’t know, really: I explained exactly how it was, but nothing happened. See, I’ve never experienced such a... I’ve never experienced anything like it. And I don’t think I believed I was to become suicidal ever in my life.
Group 5
This study showed confidence in the SSIA cannot be understood from any single perspective, but needs to be viewed in a greater context, with several interacting perspectives on different levels in society. The participants in the study were of the opinion that their confidence had been affected by the changes in the Swedish political climate, which in their turn were perceived as making it possible to change the sickness insurance regulations. These new rules and regulations have changed the insurance from a financial source of security for those sick-listed to an unreliable system not moored to reality. From the participants’ viewpoints this change of system had great influence on how the institution handles the insurance, and has led to the whole insurance procedure no longer being secure. The participants’ confidence decreased due to lack of transparency in the handling of cases, and the outcome was seen as accidental and arbitrary. The institution’s incapability to manage the sickness insurance in a legally secure manner, in its turn, affected how the insured experienced reception. This incapability primarily had a negative influence on the interplay between the insured and the administrators. A good reception, which includes continuity as well as a personal, nice reception by a competent administrator who is accessible, could push confidence in a positive direction. The political change of system that made managing sickness insurance legally unsecure, led to the SSIA difficulties of approaching the insured with due respect. This led to experiencing themselves as vulnerable in relation to the institution; they felt powerless and distrusted, when they needed to take a large part of the responsibility in leading the process onward. This vulnerability led to the participants experiencing impaired health, which affected their rehabilitation back to work possibilities negatively. Confidence in the SSIA was created and affected by the interaction between all these circumstances. A comprehensive view comprising changes on all levels is required to make things better.
The participants of the present study found the regulations too harsh and not adapted to reality. They subscribed to the ideas that the SSIA’s internal policy was all about keeping the costs down, the administrators’ hands were tied, and the administrators were not able to do their job properly. Several qualitative studies [34–36] support these findings. In one study [34] both the sick-listed and the administrators found the regulations to delay recovery and return to work, and also an administrative burden. Economic limitations together with strict rules were found to hamper the administrators in offering the activities to entitled clients (35). According to the SSIA’s own statistics and analysis, the number of sickness benefit recipients declined continuously from 2002 to 2010, partly due to a stricter interpretation of the rules, and probably due to changed attitudes in society[2].
A discrepancy emerged between what was expected of the sickness insurance and the rules that govern it. In the Swedish insurance system a person can be compensated only if the illness as such causes reduced work capacity [37]. You have to prove that you are not able to work in order to be compensated while ill. In a study by Söderberg et al. [36] the sickness insurance administrators described difficulties in communicating this both to the clients and to healthcare professionals. They described putting much effort into explaining the concept of work capacity and its relationship to illness to the clients who had expectations for compensation, for loss of income due to illness. The certificates from the health professionals often have a medical focus, lacking information on the patients’ work tasks and work capacity [36, 38]. This complicates making the right decisions on who is entitled to compensation. The research confirms clients, representatives from the SSIA, and healthcare providers, experience the sickness insurance regulations as hard to understand, hard to accept, and hard to adhere to. The fact that these confirmatory aspects emanates from different stakeholders is vitally important. It appears that the reduction of costs for sickness insurance not only affects those struck by illness, but also the professionals administering the insurance benefits. The confidence in an institution, here the SSIA, not only depends on how the institution itself handles its commission, but also on the legitimacy of the commission in the eyes of those giving and those receiving.
The perception of the administration process, and the actual treatment during this process, were crucial for the level of confidence. The participants described an uncertain procedure with a lack of transparency, where citizens were not equal before the law and where the basis for decisions was random and arbitrary. They described a lack of mutual communication with the administrators. They felt they did not have the ability to influence their own situation.
The problems described by the participants in this study can clearly be linked to theories and research concerning quality of government and procedural justice. Public institutions characterized by impartiality, efficiency and the rule of law are crucial for a stable democracy [16]. Previous studies have shown procedural justice is an important factor when understanding institutional legitimacy and citizens’ confidence [39–41]. For an authority to be perceived as legitimate, it is not sufficient that citizens get what they expect from the institution, the citizens must also believe the authority’s decisions are fairly made. The public administrators must have good knowledge of existing laws and regulations, and they must apply these in a relevant manner in each case. People should be treated equally, and with dignity and respect. The administrators should act impartially and neutrally. The decision-making process and the grounds for decision should be transparent, and the person affected by the decision should be able to make his or her voice heard, and appeal against the decision. Considering the study participants’ discussions, it becomes clear that the SSIA only to a small extent lived up to the standards of a fair decision making process.
An important aspect of procedural justice is people who perceive the decision making process as fair are more likely to accept a decision, even if it affects them adversely [39, 42]. One could say a fair decision making process helps to create “good losers". This is essential for a stable and well-functioning democracy and in this respect the study’s results are very bleak. The handling of the cases and the treatment of the participants not only created “bad losers”, but the decision making procedures also created “bad winners”. Even participants who were satisfied with the outcome of their own cases distrusted the SSIA’s ability. They interpreted the positive experience as sheer luck.
A fundamental purpose of public sickness insurance is to ensure economic security and protect citizens from economic stress when falling ill [2]. It is alarming to find that the participants’ contact and communication with the SSIA caused much anxiety and increased the feeling of vulnerability. Contact with the SSIA made them feel ill at ease which affected their health. This, in turn, makes it harder for them to return to work, and they might remain shut out from working life. Sick-listed people are already in an exposed situation [4–9] and need to be supported to get healthy and be able to return to work. The feeling of institution suspicion of sick-listed people created lots of suffering and affected confidence. One could ask if it is possible to create confidence in an institution that treats those dependent on its actions with thorough distrust.
The feeling of powerlessness can be linked to the perspective of distributive justice [43]. Distributive justice includes a social safety net and is concerned with fair distribution of income, health care, and social services directed at those in need. However, even if society defines what is fair distribution, the philosopher Iris Marion Young [44] argues that it is vital to enable people to claim their fair share, irrespective of their capacities and position in society. Unequal power relations, described by the participants in the present study as their lives being in the hands of the SSIA, constitute a risk for an already exposed group to be marginalized. Being in charge of one’s life, and having the power to make decisions and choices, is linked to health and quality of life [45]. From a public health perspective, it is of great importance that the Swedish sickness insurance improves legitimacy, rule of law, and reception.
A majority of the participants in the present study had university education and they were employed with non-manual higher socio-economic positions. Traditionally, they can be described as a resourceful group in Swedish society, belonging to the politically strong middle class. Despite this established position, they articulate experiences with the SSIA characterized by vulnerability, marginalization, and distrust. In a wider perspective, this can be interpreted as a warning signal concerning the future public support for the Swedish welfare state and its institutions. One of the characteristics of the universal welfare state is that it integrates large sections of the salaried groups, and by doing so generates strong support from the middle class [17, 20]. If the majority of citizens feel that the central welfare institutions, such as the SSIA, do not deliver the services expected, do not treat people equally in accordance with the law, and do not make decisions that are transparent, predictable and made within a reasonable time, then the support for the universal welfare system may decline.
Strengths and limits of the study
The focus-group methodology was selected in order to gain deeper knowledge and understanding of how people with experience with sickness insurance perceived and reasoned about their confidence in the institution responsible for its handling. The approach of this method is qualitative, and consequently, statistical generalizations of any sort are not possible to draw. The method aims to stimulate interaction between group members to generate as many views and opinions about the research question as possible [26, 32]. The group process encourages the participants to raise awareness through interaction with others. This makes for continuous updating of the individual participants’ knowledge, and thus the issues must be understood in context. Focus group methodology differs from other qualitative methods in that it is based on the participants’ collective knowledge rather than on the participants’ individual statements [26, 46]. In the discussions, it is the shared experience and collective opinions, which are shaped and reshaped to form the basis for understanding the studied subject. From an epistemological perspective, the focus group method assumes people share experiences in interaction with each other. People shape their understanding and knowledge of what happens collectively through constant modifications, contradictions, and confirmation of shared experiences [30, 47–49].
To achieve and create a good climate for interaction between the participants, some important considerations were made concerning group composition, group size and the role of the group leader. Regarding the group composition, we took both the homogeneity and heterogeneity of the groups into account. The homogeneity was represented by the shared common experience of contact with the SSIA. Previous studies suggest that to share a health-related problem is often enough to create a group feeling between members and to stimulate discussions [30, 51]. In this study, it proved to be highly relevant to the participants to discuss shared experiences and how these affected confidence in the SSIA. A certain degree of heterogeneity in the groups is needed to enhance the possibility for different aspects and perspectives to merge [27]. This was created through variety in socio-demographic, socio-economic, and working life factors, as well as variation in sick leave diagnoses and length of sick leave. The strength of this distribution of background characteristics and sick leave diagnoses was a high compliance with the most common causes of sick leave in Sweden [2]. The use of the smaller group size created a safe and secure group environment, where everyone had the opportunity to be heard [27, 52]. The group leader has a central role in creating a climate that encourages interactive discussion. The fact that the participants discussed with each other freely, rather than answered questions shows that the climate was permissive. The discussions were lively, which bears witness to their relevance to the participants. Overall the data collection generated rich material which problematized and gave depth to the research subject.
Conclusions
An important conclusion from this study is confidence in public institutions such as the SSIA is a very complex phenomenon. In order to understand the strong decline in confidence since 2005, we need to analyze several interacting perspectives on different levels in society (see fig. 1). As previous research has shown, the need for systematic multi-level analysis is significant [15]. One can conclude there is no easy way for a distrusted authority like the SSIA to reverse the trend of strong declines in confidence. Politicians and the public administrators need to clarify the regulations and the interpretation of the regulations. They need to ensure that the decision-making process concerning the benefits is transparent and just, and the basis for decisions is not random and arbitrary. They need to make secure that the procedure include continuity as well as a personal, nice reception by a competent administrator. All this together might prevent clients from experiencing an increase to impaired health and promote return-to-work possibilities. It might push public confidence in the institution in a more positive direction.
Conflict of interest
The authors have no conflict of interest to report.
Footnotes
Acknowledgments
This study was supported by research grants from the Swedish Social Insurance Agency. We thank Thorbjörn Jonsson for linguistic advice and illustration.