Design

A qualitative interview study was undertaken to meet the aim of the study. Data were analysed using a phenomenological hermeneutic approach inspired by Paul Ricoeur´s interpretation theory [39] and further developed for research by Lindseth & Norberg [40]. This approach is designed to interpret narratives as texts to obtain understanding and knowledge of people’s perspectives [39, 40]. Using Ricoeur’s phenomenological hermeneutics helped us understand the meaning of a particular phenomenon, in this study, the meaning of support when living with stress-related exhaustion. The study adheres to the Standards for Reporting Qualitative Research guidelines [41].

Participants and setting

Participants were recruited from nine public primary healthcare centres in the western part of Sweden. A purposeful sampling strategy aimed to reach participants in the early stages of sick leave, resulting in a cohort of men and women of various ages, including white- and blue-collar employees. Patients were screened through medical records by designated healthcare professionals according to the following inclusion criteria: (a) diagnosed with exhaustion disorder, (b) on sick leave due to exhaustion disorder no longer than six months and (c) having the physical and mental capacity to participate in an interview. Potential participants were contacted by phone and asked if they wanted to participate. Patients willing to participate received written information about the study, and a date and time for the interviews were set. A total of 19 people were invited to participate, of which 3 declined, and 4 withdrew before the interview because they lacked sufficient energy to participate. Consequently, 12 people (7 women and 5 men aged 25–46 years) were included (Table 1). Their current percentage of sick leave ranged from 50% to 100% of work hours, except for one who resumed work two days before the interview.

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Table 1. Demographic information of participants.

https://doi.org/10.1371/journal.pone.0277264.t001

Interviews

The first author (SA) conducted the interviews face-to-face from June 2018 to February 2019 in a location (participant’s home or workplace, first author’s workplace, or café) of the interviewees’ choosing and transcribed them verbatim. To encourage narration, the interviewer asked open-ended questions beginning with ‘How do you experience support in everyday life (when being affected by stress-related exhaustion)? Probing questions such as ‘How do you feel about that?’ and ‘What does that mean to you?’ were asked to evoke comprehensive responses. Additional questions were “What does support mean to you in your situation?”, and “Is there anything you would like to add”? The interview guide can be found in the S1 File. The interviews were performed 2 to 4 months after the sick leave began, lasted from 28 to 79 (median 45) minutes, and continued until the authors considered the research question answered in full.

Ethical considerations

Approval for the study was obtained from the Ethical Review Board at the University of Gothenburg (Dnr: 497–17, T 526–18). Participants were given written and oral information about the study and gave their written consent to participate. The authors were aware that participants might be affected by sharing their thoughts and experiences, and if so, they were offered consultation with a counsellor. All ethical decisions were guided by the World Medical Association Declaration of Helsinki [42].

Interpretation of data

The interviews were analysed using a phenomenological hermeneutical method, inspired by Ricoeur´s theory of interpretation [39, 40]. This method intends to generate an understanding of the meaning of a particular phenomenon, in this case, experiences of support when living with stress-related exhaustion. The interpretation consists of three interrelated phases: naïve reading, structural analysis, and interpretation of the whole [39]. In the naïve reading, the narratives were read several times to form a first impression of the overall meaning of their contents. The structural analysis, conducted in several steps, confirmed the first impression of the naïve reading and identified sequences of the text relevant to the aim of the study. The authors discussed their overall impression of the text, the meaning units, and the interpretations of the text in several analyses. In the final part of the analysis, interpretation of the whole, the entire text was re-read and interpreted in relation to the naïve reading, structural analysis and the authors’ pre-understandings to formulate a comprehensive understanding of the narratives. The authors pre-understanding include clinical experience from psychiatric care (SA and LA), hospital care (IE) and primary care (AF). The research group has extensive experience in qualitative methods including phenomenological hermeneutics. The first two steps (naïve reading and structural analysis) will be presented in the findings, and the last step, the interpretation of the whole, is presented with references related to the area and the psychologist Carl Roger’s (1902–1987) theory on the therapeutic alliance [43]. According to Lindseth and Norberg, the interviewees can only understand and narrate their lived experiences in relation to their preunderstanding. The authors cannot free themselves from their preunderstanding when interpreting texts, and are only aware of aspects of it [40].

Naive understanding

The first impression of the interviews was that participants experienced support when they met people in their surrounding networks who understood and guided them. The surrounding network included professionals in healthcare and workplace representatives, as well as family and friends. A shared understanding of their situation was crucial, and the participants struggled to be acknowledged and maintain their dignity as persons. Feeling acknowledged depended upon the benevolence and ability of people in their surrounding networks to understand stress-related exhaustion in light of the participant’s life situation. Finding persons willing to engage in their rehabilitation reduced stress and made the participants feel dignified, which facilitated the start of their recovery. The absence of acknowledgment increased stress and obstructed their opportunities to find new routines and paths in life.

Structural analysis

In the structural analysis the text was first divided into meaning units conveying the essential meaning of the lived experiences. These units were formulated as condensed descriptions in a way that disclosed the meaning and critically reflected upon in comparison with the naïve understanding. Meaning units with similar content were divided into groups, which were abstracted to form subthemes, which were further abstracted to formulate themes. The meaning of support is formulated in the main theme, Having allies to maintain one’s dignity. The main theme was developed from the themes Being acknowledged and Proper guidance. These themes emerge from six subthemes presented in relation to each theme and illustrated by quotations (Table 2).

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Table 2. Main theme, theme, and subthemes.

https://doi.org/10.1371/journal.pone.0277264.t002

Interpretation of the whole

As described by Lindseth and Norberg [40] theoretical concepts are recommended to be included in the third step in order to enrich and deepen the understanding of the data. Hence, in this step of the analysis (interpretation of the whole) we have consulted our preunderstanding, literature and considered the concept of the terapeutic alliance according to Carl Rogers [43]. Our overall interpretation is that people affected by stress-related exhaustion seem to be in a struggle to maintain their dignity. Having support means having allies in this struggle.

The findings emphasize the importance of having allies in the struggle with the consequences of stress-related exhaustion, but also reveal the participants’ vulnerability when they do not feel acknowledged and respected from people in their surrounding networks (e.g. professionals [healthcare professionals, work-place representatives] and family and friends). Falling ill and requiring support were experienced as a threat to the participants’ dignity and their value as a person. Having allies that acknowledged the participants as persons and showed them respect made them respect themselves and feel dignified. In the participants’ struggle for dignity and acknowledgment, they experienced support as having allies, defined as people in their surrounding networks engaged with them in a mutually respectful relationship to achieve a shared understanding and agreement. The findings highlight the importance of an interpersonal relationship in which people affected by stress-related exhaustion and people in their surrounding networks join as allies. To further deepen the understanding of the meaning of support when being affected by stress-related exhaustion, this foundation and its prerequisites can be understood as a therapeutic alliance [44, 45], as described by Carl Rogers. According to Rogers, a therapeutic alliance consists of three core elements: empathy, congruence (genuineness), and unconditional positive regard (acceptance) [45]. Empathy is closely related to sympathy, which is congruent with the theme Being acknowledged and highlights the importance of being treated as a person–almost a friend–not just a patient. Genuineness is required to create a safe, warm, and tolerant environment, congruent with the subthemes Qualified and trustworthy professionals and Personal commitment and highlighting the importance of a personal and emotional engagement in clinical encounters. According to Rogers, acceptance means that the people set aside their personal opinions, which is similar to the subtheme Being taken seriously and emphasizes the importance of giving the participants time and space to tell their illness stories without interruption or questions. Not being forced into ‘one size fits all’ as described in the subtheme Tailored interventions further indicates the need for professionals to provide support beyond their personal opinions and recommended guidelines.

According to Rogers, professionals need to accept the client as a person and see the world through their eyes [44]. Even though healthcare professionals strive to do their uttermost to support patients, they need to follow organisational rules and regulations where it is difficult to be flexible [46, 47]. When in contact with healthcare, we found that the participants struggled against the feeling of being reduced to one’s disease and the effort to maintain the notion of oneself as a person. In encounters with professionals, the participants depended on their ability to understand and care for them. Being treated as a person is also highlighted by the Swedish philosopher Fredrik Sveneaus [48], who considers it unethical to not view patients as persons. An objectifying approach towards the patients’ condition increases the risk of missing valuable information about the condition’s subjective experience [48]. The participants in our study described feeling seen and treated as persons when their family and friends extended their care in addition to the everyday relationship, and professionals extended their actions beyond the call of duty. Actions or small gestures such as additional telephone calls, visits, or kind words reduced the participants’ risk of feeling objectified. This assumption is congruent with Topor et al. [49], who highlight the importance of ‘small things’ in improving the quality of care. Such small spontaneous signs in professional practice convey a message of shared humanity and hope, affect a person’s sense of self, and remind people of themselves as persons rather then patients. When professionals go beyond the boundaries of the professional role, a friendly relationship occurs. They act and relate as friends [49], congruent with our theme being acknowledged, emphasizing the importance of being treated not just as a patient but as a person–almost a friend.

We interpreted encounters in which professionals did not meet the person but rather the disease or had insufficient knowledge of stress-related exhaustion as inadequate support. The participants needed Proper guidance to receive that kind of support, and professionals needed to get to know the participants to understand the challenges, needs, and complexity associated with stress-related exhaustion. Bolton [50], described this challenge for mental healthcare professionals, who face interpretation challenges within the diagnostic biomedical framework of health and disease. Clinical diagnoses, such as stress-related exhaustion, are based on signs, symptoms, and disability that are not considered ‘normal’, and the distinction between normal and pathological reactions is difficult. As our findings and previous research show that people affected by stress-related exhaustion suffer from shame and stigmatisation due to their condition, which also raises existential issues [26, 38], it is essential to acknowledge descriptions of symptoms and consider lived experiences in the interpretation process [50]. The interpretation of our findings made it clear that having allies facilitated the participants’ ability to self-support. Rogers, asserted the therapeutic alliance as an equal partnership, in which the therapist helps people to find their own solutions, increasing empowerment and enabling change [43, 44]. The power of having allies in the struggle with stress-related exhaustion is thereby obvious, and as is the power of an absence of allies to obstruct recovery and possibly even worsen symptoms of the disease. The findings also showed that professionals need to engage on a personal level beyond their professional role to support people with stress-related exhaustion.

Lack of empathy, genuineness, and acceptance in clinical encounters contributed to additional challenges for the participants. Instead of dealing with their illness, they struggled for acknowledgment and dignity. A previous study conducted later in the rehabilitation process underlined the importance of being respected and listened to [32], and unsupportive encounters have been shown to increase distress in patients with stress-related exhaustion [19, 51]. The absence of acknowledgment has also been shown to contribute to detachment from the body [27] and existential anxiety [26]. Informants diagnosed as burned out reported that when they felt distrusted, they no longer knew themselves [51]. Hence, it is essential to acknowledge and respect the person seeking help for stress-related exhaustion to minimize negative feelings, reduce symptoms, and improve recovery. It is essential that professionals be aware of the complexity of stress-related exhaustion, the importance of the interpersonal relationship, and people’s subjective experiences as decisive components in supporting these people.

In summary, people in the surrounding networks to persons affected by stress-related exhaustion need to acknowledge the person beyond the disease and its impairments as the condition has a personal and existential impact. It is essential to listen thoroughly to the patients’ narratives and develop a shared understanding of their experiences, so the person feels heard and respected. This approach can be facilitated in a partnership and by using a jointly agreed health plan, as emphasized in person-centred care (PCC). A PCC approach in health care highlights the importance of knowing the patient as a person with resources and needs, understanding the illness from the patient’s perspective, and treating the patient as a person with autonomy and capabilities. PCC means a shift away from the traditional focus on the patient as a passive recipient of medical treatment to a more collaborative view of health care where patients (often with relatives) are engaged as active partners in the care planning and decision-making process. Establishing a collaborative and transparent partnership is crucial based on ethical principles and mutual respect [52, 53].

Conclusion and clinical implications

The findings from this study indicate that people affected by stress-related exhaustion need allies from their surrounding networks in their struggle to maintain their dignity. Commitment, mutual respect, and shared understanding were described by participants as essential components of such support. Our findings highlight that, when being exhausted, the affected person needs to be able to take the back seat without feelings of shame and guilt. Possible implications for clinical practice, deriving from the findings, suggest that when encountering patients with stress-related exhaustion, professionals firstly need to meet patients as persons beyond their diagnosis and taking their experiences and current situation into account. Moreover, professionals need to acknowledge the severity and the complexity of the condition and the importance of professionals’ personal and emotional engagement in the recovery process. The findings also point to the importance of recognizing patients as persons and establishing a partnership between health care professionals and patients (often with close ones). This approach is emphasized in person-centred care, where appropriate support is based on patient’s needs, resources, and situation. Such a partnership may avoid violating the dignity of people with stress-related exhaustion and instead improve their health and optimize their recovery.