Experiences of Living with Stress-Related Exhaustion Disorder and Participating in a Tailor-Made AntiStress Program in Primary Care ()
1. Introduction
Stress-related disorders are currently a growing public health problem worldwide (World Health Organization, 2017). Over the last decade, the amount of long-term sick leave taken for stress-related diseases has had major socioeconomic consequences both nationally and internationally (Försäkringskassan, 2017; OECD, 2013; World Health Organization, 2017). Approximately one million Swedes of working age suffer from stress-related disorders, which accounts for approximately 20 percent of the total work force. Almost three percent of Sweden’s gross domestic product (GDP) accounts for lost working effort and expenses for health care and caring (OECD, 2013).
Factors such as a heavy workload, poor social support, a lack of social roles and interaction, insufficient internal and external resources (Drapeau et al., 2012; Masse, 2000), a lack of management strategies (Arvidsdotter, Marklund, Kylén, Taft, & Ekman, 2015; Lazarus & Folkman, 1984), difficulty thinking about work during leisure time and insufficient sleep are all factors that increase the risk of developing stress-related exhaustion disorder (SRED), which is often described as psychological distress, burn-out or similar conditions (Grossi, Perski, Osika, & Savic, 2015). In this study, the concept of SRED was chosen due to the complexity of stress symptoms and diagnostic problems per se. Individuals who have developed SRED often leave their workplaces with feelings of anger, shame, poor self-esteem and physical symptoms of stress (Eriksson, Starrin, & Janson, 2008). Individuals often take long sick leave periods, sometimes several years, before they are expected to be completely restored and fully working (Försäkringskassan, 2017).
Individuals suffering from SRED often experience problems that negatively affect their entire existence. Typical emotional symptoms include anxiety about the future or depression (e.g., sadness and hopelessness), sometimes accompanied by physical symptoms (e.g., muscle tension, chest pain, headache, stomach ache and general pain). Experiences of energy loss, followed by feelings of emptiness, meaninglessness and loss of control, often result in an existential crisis (Arman, Hammarqvist, & Rehnsfeldt, 2011; Arvidsdotter, Marklund, Kylén et al., 2015; Ekstedt & Fagerberg, 2005; Grossi et al., 2015; Gustafsson & Strandberg, 2009; Jingrot & Rosberg, 2008; Masse, 2000). Long-term chronic stress without the opportunity for recovery leads to sleep disturbances and memory and concentration problems (Grossi et al., 2015; Söderström, Jeding, Ekstedt, Perski, & Åkerstedt, 2012). The individual’s self-image is adversely affected, and the fear of not being “good enough” is obvious in both private and working life. These effects in turn cause the individual to withdraw from social contexts with an increased risk of social isolation (Arvidsdotter, Marklund, Kylén et al., 2015; Ekstedt & Fagerberg, 2005; Jingrot & Rosberg, 2008).
Primary care provides primary treatment for patients with stress-related diseases. However, primary care currently has difficulty managing and treating SRED, as SRED patients need both individual and group support ( Stenlund, Nordin, & Järvholm, 2012). Physical activity and the ability to handle stress play crucial roles in improving health and returning to work. Treatment with psychotherapeutic methods is also considered relevant (Socialstyrelsen, 2017). However, treatment options vary, and the lack of information, credibility and effective treatment often leads to frustration for both health care professionals and patients (Hinchey & Jackson, 2011). There are currently no national guidelines for traditional or integrative SRED rehabilitation, and the primary care interventions therefore vary.
Individuals with SRED frequently try complementary and alternative medicine (CAM), often because of dissatisfaction with conventional treatment options (Outram, Murphy, & Cockburn, 2004). A recent study in 25 countries reported that patients with severe mental disorders are satisfied after treatment with CAM (de Jonge et al., 2017) and that, compared with conventional therapies, CAM therapies are used more than expected by people with severe anxiety and depression and severe behavioral disorders (Hunt et al., 2010; Kessler et al., 2001).
Arvidsdotter (Arvidsdotter, 2014) tested and evaluated integrative treatment as an intervention in a thesis entitled Stress-related psychological distress: experiences and treatment in primary health care. The randomized controlled trials showed that integrated treatment reduced anxiety and depression and promoted quality of life and ability to manage stress. These results were statistically assured with large effect sizes, which meant that the treatment provided great benefit to the participants (Arvidsdotter, Marklund, & Taft, 2013, 2014; Arvidsdotter, Marklund, Taft, & Kylén, 2015). The referenced studies provided knowledge about the problems of meeting the patient group’s rehabilitation needs. Since the most common cause of sick leave in Sweden is SRED, we realized the need to implement the results of the dissertation. It was considered urgent to develop integrative rehabilitation alternatives in primary care as this patient group has complex needs, often with long-term disease course. Therefore, a tailor-made AntiStress program was created for patients with SRED.
This AntiStress program includes interpersonal psychotherapy (IPT), acupuncture, qigong and breathing techniques. IPT is a structured form of psychotherapy that focuses on how problems in human relations contribute to mental and emotional stress and how psychological problems affect our relationships with others (Weissman, Markowitz, & Klerman, 2017). Studies show that IPT alone is a time-limited, empirical and efficacious therapy for depression in different contexts, both individually and in groups (Cuijpers, Donker, Weissman, Ravitz, & Cristea, 2016; Cuijpers et al., 2011). IPT is a method based on empirical research on mental illness, attachment and social relations. IPT dialog helps individuals express needs and expectations and to build up and efficiently utilize supportive networks and thereby counter alienation. IPT has proven to be an effective treatment for reducing mild to moderate depression and anxiety states that are most often manifested in stress-related illness (Cuijpers et al., 2016; Cuijpers et al., 2011).
Acupuncture is considered a stress-reducing body treatment. Acupuncture is described as a holistic, safe and complex intervention (Paterson, Baarts, Launso, & Verhoef, 2009; Paterson & Britten, 2004). Its person-centered approach means that body and soul are regarded as one unit (Arvidsdotter et al., 2013, 2014; Arvidsdotter, Marklund, Taft et al., 2015; MacPherson et al., 2013; Paterson et al., 2011). Several systematic surveys have shown that acupuncture is a promising treatment option for SRED, despite some methodological deficiencies (Lee et al., 2012; Mukaino, Park, White, & Ernst, 2005; Pilkington, 2010). The application of acupuncture in primary care has shown significant clinical improvements in both physical and mental components of health-related quality of life (HRQL), as well as in the management of SRED (Arvidsdotter et al., 2013, 2014; Arvidsdotter, Marklund, Taft et al., 2015; MacPherson et al., 2013; Paterson et al., 2011). Several studies have shown that patients’ acupuncture experiences have a holistic effect, reduce stress-related symptoms, increase energy levels and affect self-esteem and self-image (Arvidsdotter, Marklund, Taft et al., 2015; Paterson & Britten, 2003; Rugg, Paterson, Britten, Bridges, & Griffiths, 2011).
Qigong has been used for thousands of years to improve physical fitness and endurance. The components of qigong exercises include concentration, respiratory regulation, relaxation, meditation, posture and movements (Abbott & Lavretsky, 2013). The basic components of qigong in the AntiStress program include concentration, conscious presence, conscious breathing and posture integrated with gentle movements. The group exercises include different balance exercises to find the small muscles that give the body inner support and strength, relaxation and balance. Calm, smooth movements aim to soften the joints. Self-massage is practiced as a pulsating massage throughout the body for increased circulation. During the exercises, concentration, conscious breathing, acceptance, conscious presence and training take place in finding one’s own inner calm and strength to reduce stress and increase well-being. Qigong is known as an easily adaptable form of gentle mind-body exercise that can be practiced at any place and time without any special equipment, and it is a widely used self-care CAM method in promoting physical and mental well-being (Jahnke, Larkey, Rogers, Etnier, & Lin, 2010). Studies have shown that qigong training reduces stress and anxiety (Wang, Litscher, Shi, Jiang, & Wang, 2013).
Breathing techniques such as deep slow breathing and relaxation have been shown to reduce stress, anxiety and negative emotions (Jerath, Crawford, Barnes, & Harden, 2015). In the AntiStress program, conscious breathing is deep breathing involving both the abdomen and thorax. Inhalation takes place through a conscious slow breath through the nose deep down to the abdomen, emphasizing the feeling that the breath reaches all the way to the pelvic floor. Exhalation takes place through a slightly relaxed mouth, involving a slightly whispered sound flowing out through the lips, while the exhale drops the abdomen inward. When the breath expires, the intention is to experience a calm silence until the body spontaneously wants to take a new breath. AntiStress conscious breathing is available as an AntiStress app in 10 different languages, freely downloadable on the App Store (Arvidsdotter, 2019b) and Google play (Arvidsdotter, 2019a).
Poor detection of SRED and a lack of effective rehabilitation suggest the need for a better understanding of SRED in the sick leave process to better meet each patient’s need for rehabilitation. Therefore, it seemed important to study how persons with SRED experience their sick leave processes with traditional rehabilitation. The idea of the current AntiStress program was to implement and develop methodologies for individual and group treatment, focusing on integrative rehabilitation. This study was intended to highlight the experiences of individuals participating in the 10-week AntiStress program in primary care. The aim of this study was to gain knowledge about the experiences of living with stress-related exhaustion disorder (SRED) in persons participating in traditional rehabilitation versus integrative rehabilitation during the sick leave process in primary care.
2. Method
The study employs a phenomenological-hermeneutic approach, which means that narratives of lived experience are provided in text and interpreted against the background of the authors’ preunderstandings of the phenomenon (Lindseth & Norberg, 2004). The method can be placed between art and science. Artistic talent is used when the naïve reading is carried out, scientific skills are used when the structural analysis is implemented, and critical skills are required when the interpretive whole is formulated. According to this methodological tradition, the task is to present the richness of data, by selecting the quotes that best describe the experience.
The interviews were conducted with participants in traditional rehabilitation versus integrative rehabilitation in primary care. The individual interviews were conducted, in order deepen the understanding of the meaning of participation in the traditional rehabilitation offered by primary care for persons with SRED. Based on the individual interviews, a 10 weeks AntiStress Program was started and implemented to offer a complement to usual rehabilitation for the patient group. The focus group interviews were conducted according to the AntiStress program to deepen the understanding of participation in the integrative rehabilitation of persons who previously participated in traditional rehabilitation. All interviews were semi-structured.
Traditional rehabilitation refers to the techniques and methods that are currently usually practiced in primary care. Integrative rehabilitation refers to the newly developed AntiStress 10-week program based on person-centered (Rogers, 1978), interpersonal (Weissman et al., 2017), and salutogenic theory (Antonovsky, 1987) and mind-body meditation and movements (Jahnke et al., 2010). The program contains individual integrative therapy combined with therapeutic acupuncture, one session of 60 minutes, every two weeks during the program (Arvidsdotter et al., 2013, 2014; Arvidsdotter, Marklund, Taft et al., 2015), as well as group integrative treatment during 2.5 hours per week. The key components are stress-reducing exercises, themed activities to understand what it means to live with SRED and training in everyday activities, such as diet, exercise, relaxation and sleep habits. Important components also include identifying coping strategies to reduce stress and increase well-being. The integrative dialog focuses on making lifestyle changes, increasing awareness, mobilizing strengths and managing living conditions. The dialog is exploratory and allows individuals to reflect on thoughts, emotions and interpersonal relationships as well as existential issues (Weissman et al., 2017) and is designed to strengthen the therapeutic alliance (Pinto et al., 2012). A web-based audio track, entitled AntiStress conscious breathing (Arvidsdotter, 2016), containing 15 minutes of guided self-care breathing techniques, such as deep slow breathing, is included in this program.
3. Data Collection
The participants (n = 12) who were interviewed individually were selected based on their experience of participating in traditional rehabilitation, until saturation was achieved. The two groups of participants (n = 18) in the AntiStress program were selected based on their experience of both traditional and integrative rehabilitation.
In the traditional rehabilitation group, 16 patients were invited to participate. Nine women (n = 9), aged 32 - 54 years, and three men (n = 3), aged 37 - 56 years, participated in the study. The patients were asked to narrate their experiences of living with SRED during the sick leave process. The opening questions were as follows: Can you please tell me what it is like to live with your condition? Can you please tell me about the support and hindrance you have experienced? The follow-up probes included the following: How did you think or feel? Can you tell me more? The location, time and length of the interview were decided by the participants. The interviews were conducted individually by the first author (TA) in 2015-2016 and lasted between 22 and 61 minutes (median 38 minutes). The interviewer had no relation to the patients. The patients were offered traditional rehabilitation because the AntiStress program had not been established at the time of the interviews.
In the integrative rehabilitation group, 18 patients were invited to participate; all the participants were women aged 33 - 60 years. They had previous experiences of traditional rehabilitation, sometimes for several years. The interviews were conducted in two focus groups: I (n = 8) and II (n = 10). The questions in the focus groups were based on the same questions as those in the individual interviews but with a focus on experiences of participating in the AntiStress program. During the focus group interviews, the participants were asked to narrate their experiences of participating in the AntiStress program and were given the opportunity to share and compare opinions and values with each other (Bradbury-Jones, Sambrook, & Irvine, 2009). The focus group interviews were conducted by the third author (SBP) in 2016-2017 and lasted between 93 and 109 minutes. The interviewer had no relation to the patients. All interviews were conducted at a Research and Development Center, in Primary Care, located in western of Sweden.
4. Data Analysis
All interviews were analyzed using a phenomenological-hermeneutic approach as described by Lindseth & Norberg (Lindseth & Norberg, 2004) and inspired by Ricoeur’s (Ricœur, 1976) theory of interpretation to elucidate the essential meanings of the participants’ lived experiences. The text analysis was conducted in three steps: naïve reading with naïve interpretation, structural analysis and interpretation of the whole in relation to the aim and context. In the first step of naïve reading, the researchers became acquainted with the text to develop a sense of the whole. The second step involved the structural analysis, in which different variations of experiences were systematically examined and then grouped into subthemes and themes to determine the meaning of the text. Finally, in the third step, the interpretation of the whole, the text was read again, and the themes and subthemes were related to the research question and the context of the study. The analysis and interpretation were discussed until the authors reached consensus (Lindseth & Norberg, 2004).
Ethical Approval and Consent to Participate
Approval and permission to conduct the individual interviews were obtained from the Regional Ethical Review Board, Gothenburg, Sweden (No. 583-15). All participants provided signed informed consent, and the focus group interviews complied with the ethical procedures according to Swedish Statutes (2003: 460) (SFS, 2003) and the Declaration of Helsinki (World Medical Association, 2013), assuring confidentiality, voluntariness and the freedom to withdraw from the study at any time.
5. Results
5.1. Naïve Reading
The individual interviews provided accounts of women and men who live with SRED and the difficulties they experienced when they returned to work during sick leave. The participants described the inner and outer struggle to function in everyday life.
The focus group interview participants, who were all women, described a similar picture of everyday problems, with the difference that, thanks to the support from participants and therapist, they could handle their own reactions and everyday problems in a more constructive manner than the participants who underwent traditional treatment.
The individual IPT dialogs in combination with acupuncture were described as improving the participants’ awareness of attitudes and behaviors that they needed to change to feel better. Meeting other persons who understood what it meant to live with SRED promoted a feeling of not being alone, and the exercises were easy to perform and promoted rest, recovery, increased energy, reduced pain, and increased softness and mobility in the body. The AntiStress program was described as an inner journey towards increased self-awareness and harmony in life (See Table 1).
5.2. Structural Analysis
The structural analysis of all interviews resulted in two themes: internal and external barriers in the healing process. In addition, the focus group interviews resulted in three themes describing the importance of participating in the AntiStress program: integrative therapy to process existential problems, a forum for personal growth, and holistic person-centered rehabilitation. To illustrate each theme and subtheme, the most relevant statements from the participants are presented in the form of quotes.
5.3. Internal Barriers
The theme of internal barriers to healing comprised four subthemes: a sense of total loss of energy and control; a feeling of not being good enough; difficulty knowing how to or having the courage to explain how SRED feels and unrealistic demands for fast recovery.
A sense of total loss of energy and control
The participants described long-term difficulties in managing the “everyday life puzzle” both at work and in their private lives. They experienced a lack of recovery and had great difficulty managing physical, emotional and psychological problems. They related not being able to recognize themselves and having problems finding a balance between work and rest. They also described having realizations that losing all energy was inevitable.
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Table 1. Internal and external barriers in the healing process.
All the interviews, both individually and in focus groups showed experiences of internal and external barriers in the healing process of persons living with SRED.
“I feel sick, I have energy loss, and I’m tired and irritable; I often feel as though I’m in a brain fog. I have headaches, dizziness, and sleep and memory disturbances; nothing matters anymore. I have difficulties unwinding and can’t find a balance between work and rest.” (Woman 46)
A feeling of not being good enough
The feeling of not being good enough was described as a result of low self-esteem and prevailing cultural attitudes, as well as feelings of not having faith in oneself. The participants stated that girls are brought up to be kind and quiet; they experience high demands to be there for others, and their own needs are suppressed. Consequently, the women participants were unable to set limits.
“I feel unsuccessful and useless, insecure about my work ability, afraid of doing wrong and not managing my job properly and not coping with my own inner demands.” (Woman 44)
Difficulty knowing how to or having the courage to explain how SRED feels
As a result of their sickness due to long-term stress, the participants described that they did not recognize themselves and their own reactions, that life was slow, that their disease was masked by their fears of losing their jobs, that they had renounced relatives who were unsupportive, that they experienced inner resistance to attitude changes and that they understood their own reactions intellectually but had difficulty managing their feelings emotionally.
“It’s hard to tell everyone that I’ve become so tired, dizzy and forgetful, because maybe I’ll suddenly be the subject of redeployment.” (Woman 52)
Unrealistic demands for fast recovery
The participants described the difficulty of accepting that the healing process took such a long time and related that they had expected that the disease would pass as quickly as a normal flu. They described a desire to feel full of energy, as everyone else does. However, their inner strength was lacking, and gaining energy was described as a problem.
“But I want to get more energy than I have. I just want to be like everyone else.” (Woman 32)
5.4. External Barriers
The theme of external barriers in the healing process comprised three subthemes: rigid regulations and nonflexible interpretation of the rules for sick leave; a lack of professional responses and understanding; and unsympathetic significant others and colleagues.
Rigid regulations and nonflexible interpretations of the rules for sick leave
The participants regarded being strong and healthy as a necessity of having SRED and being able to fight for their own rights. They experienced frustrations with inflexible sick leave policies and interpretations of the rules for sick leave that obstructed their return to work, as well as with being forced to fight for the right to sickness benefits, which they considered a self-evident right.
“When you have all these symptoms, two weeks’ sick leave is not enough. The rigid rules of the Swedish Social Insurance Agency are the same for everyone, but we are different in our illnesses. Right now, I must struggle to get my insurance money.” (Woman 49)
A lack of professional responses and understanding
The feeling of not being taken seriously was described as the perception of distrust in general practitioners (GPs) due to GPs’ insufficient responses, as the participants’ health conditions remained unchanged, and due to the participants’ perceptions that the way in which their health conditions were judged seemed to vary based on the professional who made the assessment. Health care and medical support were described as insufficient, as the basic problems were not thoroughly investigated. The participants expressed a sense of abandonment by authorities and stated that support from their colleagues decreased as they increased their attendance at work.
“I don’t get any help from health care; they don’t care about me and have no knowledge of my situation. Underlying causes are not investigated. They don’t involve me in my own treatment and rehabilitation.” (Woman 44)
Unsympathetic significant others and colleagues
The participants described that their relatives did not understand the problems that arose from the disease. This insensitivity from significant others led to perceptions of a lack of understanding, ridicule and disrespect that made some participants consider suicide or withdrawal from social contact. The feeling that no one understood created unbearable fatigue in those with SRED.
“My partner says, ‘Oh my God, go and rest for a few days and you will be alert again. ’” (Woman 58) “My neighbor asked me the other day, ‘How are you? Are you still ill? But now it’s really time for you to get well again.’” (Woman 36)
5.5. Importance of Participating in the AntiStress Program
The theme of the importance of participating in the AntiStress program comprised three subthemes: integrative therapy to process existential problems, a forum for personal growth and holistic, person-centered integrative rehabilitation (See Table 2).
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Table 2. Focus groups interviews: The importance of participating in an AntiStress program in relation to the program content, working methods and scope.
Integrative therapy to process existential problems
The theme of integrative therapy to process existential problems comprised three subthemes: increased self-awareness, practical guidance and feelings of relaxation with acupuncture.
Increased self-awareness
The participants described that IPT helped them understand themselves and discover their own needs, existential thoughts and feelings. They expressed how important it is to be kind to oneself through decisions and actions, to find strategies for recovery and to set limits against significant others if necessary. The participants perceived this type of guidance to increase self-awareness, self-esteem and self-compassion, which made it easier to express needs, thoughts and feelings and to understand the cause of life problems. The importance of changing attitudes and role transitions was emphasized.
“It is so difficult to apply something you understand intellectually and to also feel it emotionally. I was unable to link to my own situation by myself, so I needed someone to help me do that. I have mainly achieved this through these individual dialogue with my therapist.” (Woman 39) “I’ve really needed guidance from my therapist to understand the disease and why I react like I do.” (Woman 35) “Ever since I was a little girl, I’ve felt that I was never good enough, that I had to perform and prove that I’m capable all the time. I was not aware of my own desires or needs until I talked to my therapist.” (Woman 33)
Practical guidance
Feelings of practical guidance were expressed when the participants described their therapist practicing advocacy during the sick leave process, such as acting as a spokesperson in communications with authorities, helping secure time for healing, supporting the process of returning to work and facilitating the individual’s search for balance in life.
“When I was going to increase my working hours, I became terrified, and the stress problems came back. My therapist passed that information to the doctor, and I got more time to heal. It’s important to get support from someone who knows how you feel in the sick leave process.” (Woman 37)
Feelings of relaxation with acupuncture The participants described that acupuncture promoted increased body awareness, well-being, self-confidence and motivation for lifestyle changes. Strong tension disappeared through the treatment, and the total relaxation that occurred after the treatment was described as liberating.
“I really got a good feeling during the whole program. I feel like a new human being. I’m just in the here and now when I have the dialog and the acupuncture.” (Woman 51)
Forum for personal growth
The theme of the program functioning as a forum for personal growth comprised three subthemes: confirmation and understanding, a context to flourish and invigorating experiences with the mind-body-soul exercises.
Confirmation and understanding
The participants described the importance of meeting other persons living with SRED in the sick leave process, as they experienced confirmation by encountering others with similar life situations and talking about things they had not been able to talk about with significant others or health care professionals. These experiences provided essential support for the problems that arise in daily life. Confirmation from the group also allowed the participants to dare to take the full step of breaking unsympathetic, suffocating relationships with close relatives and to defend their opinions against insensitive others. The group encounters also helped to make the program exercises easier to internalize in everyday life and to develop the understanding that it takes time to recover from SRED.
“When your family or friends do not understand how you feel, you experience extreme loneliness. Then, it is especially important to meet others with similar problems. In this group, we understand each other, and I can talk about everything here and everyone understands.” (Woman 33)
A context to flourish
Exchanging experiences with others in a group of like-minded persons was described as extremely valuable. Each individual grew as a human being and became more aware of the self and inner feelings. Shared experience induced feelings of togetherness and not being alone. The participants discovered that the more aware they became, the greater the capacity they had for introspection and personal development; although the condition is complex, there was an opportunity to live a life in harmony with themselves and others.
“During our conversations, I understand why the others think and act as they do but also why I have low self-esteem and why I act as I do. Everything has become much clearer to me; I’ve become more aware, and it’s really good.” (Woman 33)
Invigorating experiences with the mind-body-soul exercises
AntiStress conscious breathing and qigong exercises were described as always available, easy to practice and applicable anywhere and anytime, but they also require inner motivation, conscious priorities, qualified guidance and everyday training. The mind-body-soul exercises involved a holistic approach, and the training not only served as an “analgesic”, improved sleep and replaced sleep medication but also improved mobility and mental, physical and emotional relaxation. The training was perceived as a lifeline, promoting long-term well-being.
“The breathing exercise feels like a lifeline when I’m having a hard time.” (Woman 39) “I sleep very well every night thanks to my awareness of how I breathe.” (Woman 58) “I like the simplicity and the genuineness.” (Woman 54) “Qigong is amazing; it allows me to release tension in my body and breathe properly. I get help and ideas from the program that I use every day; it’s very easy to do both at work and at home.” (Woman 54) “It’s like a tool; you get basic knowledge, but you need to be guided to not lose the breathing techniques.” (Woman 39)
Holistic, person-centered rehabilitation
The theme of holistic person-centered rehabilitation related to the content, working methods and scope of the AntiStress program comprised three subthemes: the promotion of self-healing, creation of balance in life and promotion of integrative methodological development.
Promotion of self-healing
The participants described experiences of the healing process. They recognized the importance of recovery in order to experience well-being, acquire enhanced awareness of the sick leave process, understand and accept living with exhaustion disorder, and obtain insight into the importance of daily training, self-efficacy enhancement and self-respect. They gained confidence to express opinions and set limits, overcame their lack of trust, developed an awareness of the negative impact of suffocating relationships and, finally, learned to listen inwards to maintain their energy.
“The dialog, along with the other content of the program, creates a knowledge and, to some extent, an acceptance in me that I am suffering from a stress-related disease. I have been anxious about so many other illnesses.” (Woman 39)
Creation of balance in life
The theoretical and practical content of the program was described as well integrated, and the exercises restored balance in everyday life. The participants were physically, emotionally and mentally strengthened, thus resulting in a sense of happiness and well-being. The participants also began to prioritize life-giving support and enjoy life by taking in the healing power of nature.
“I have been very ill, physically, for some years, so the physical exercises have been very important to me, for example, to breathe correctly. During the program, everything has become so much better, both physically and mentally.” (Woman 61)
Promotion of integrative methodological development
The participants described that the program was well integrated and that there was a good balance between all included moments and activities, in both the individual and group treatments. The IPT and encounters with like-minded persons gave opportunities to focus on what needed to change in the short and long term. The program structure made it easy to internalize both practical and theoretical knowledge. Through the exercises, participants’ stress levels decreased, and the participants felt that they received an efficient and easily accessible tool for recovery. The participants wanted a continuation of the program and an in-depth course.
“I have been on several stress programs in primary care. But this kind of rehabilitation is different. The best part here is that we start with these exercises, that we have dialogs both individually with our therapist and in the group, as well as getting acupuncture. I like the method; you are really able to land and get into the exercises properly. I think that is really positive. Now, I have started to live, think and feel better.” (Woman 61)
5.6. Interpreted Whole
The overall interpretation of the interview text generated five themes: two themes highlighting the internal and external barriers to healing and three themes revealing the importance of the AntiStress program for rehabilitation during the sick leave process. All individuals living with SRED in the sick leave process experienced a state of total energy loss, regardless of how much they slept. They described difficulties in concentrating, had memory disturbances, experienced a sense of inadequacy and could not even cope with the simplest things in everyday life, which reinforced a feeling of worthlessness. The length of the healing was described as extremely frustrating, with the process taking much longer than was considered reasonable. The lack of understanding and support from close relatives, officials in the Swedish insurance office, employers’ representatives and health care professionals was evident. Careless, insulting statements about the participants’ exhaustion problems made them feel overlooked and unworthy and led to their withdrawal from continued contact. Communication with administrators and health care professionals was dysfunctional, as all the administrators and professionals were focused on the return to work without taking into account the individual’s current state of health. The participants described themselves as misunderstood and perceived that their own recovery was not discussed. Some of them related that the GP’s only action was to prescribe tablets and rest. By participating in the AntiStress program, the participants explained that they had learned to feel better and reached a deeper physical, mental and emotional understanding. They discussed that they had gained insight that healing takes time and that having patience and being aware of their own progress in the healing process was important. The participants felt that they had gained increased self-confidence and self-efficacy and had developed their abilities to face difficulties in life. The AntiStress program, according to the participants, increased self-awareness, feelings of being valuable and understanding of the importance of maintaining healthy relationships and developing one’s own healing abilities. According to Antonovsky, it is only when we become aware of ourselves in a context that we increase our opportunities to cope with everyday life and make meaningful choices that promote our health (Antonovsky, 1987). When our ideal image approaches our true self, we feel better. As Rogers (Rogers, 1978) proposes, when the environment provides openness and self-disclosure and when the individual is regarded with unconditional positive respect and is listened to and understood, he or she will “grow”. Through the AntiStress program, the participants experienced an integration of the perceived self (how one sees oneself and how others see him or her), the real self (how one truly is) and the ideal self (how one would like to be). The three sides of this triangle are described by Rogers (Rogers, 1978) as self-esteem. Through the training, treatment and group meetings, the individuals experienced an inner journey towards personal development and harmony in life, which is key to holistic person-centered rehabilitation that promotes the process of returning to work.
6. Discussion
To gain more knowledge about how persons with SRED experience the sick leave process, individual interviews were conducted with individuals who had undergone traditional primary care and focus group interviews were conducted with individuals who participated in a tailor-made AntiStress program in primary care. All interviews were analyzed using a hermeneutic-phenomenological method (Lindseth & Norberg, 2004). The individual interviews were carried out to gain knowledge of lived experiences during the sick leave process and while undergoing traditional rehabilitation. All of the participants had the will and ability to articulate their lived experiences of the phenomenon. With this method, it is important that the analysis is carried out transparently so that it is possible to examine the analysis process and so that the result presented is the most likely interpretation (Lindseth & Norberg, 2004). The focus group interviews were performed to gain knowledge of experiences of participating in integrative rehabilitation in a tailor-made AntiStress program. According to Bradbury-Jones et al. (Bradbury-Jones et al., 2009), while phenomenology emphasizes the individual’s perspective, this perspective can be preserved in the group context because one participant in a group can tell his or her own story, and the others in the group can add valuable perspectives as the story progresses. The idea was to develop knowledge useful to health care providers who treat these individuals in different rehabilitation contexts (Kvale & Brinkmann, 2014). It was important to carry out the analysis as transparently as possible so that the result presented was the most likely interpretation (Roberts, Priest, & Traynor, 2006). The common threads within and between each step of the analysis process were also validated. To strengthen the credibility of the results, the authors discussed the different steps of the analysis process until a consensus on interpretation was reached (Lindseth & Norberg, 2004). The authors chose to give the results section a relatively large amount of space, as it was regarded as the most important contribution to the context of the study.
The analysis revealed five dimensions of experiences of living with SRED in primary care during the sick leave process. In all interviews, internal and external barriers to healing emerged. People with SRED described internal barriers in managing their lives and experiencing emotional suffering, sometimes over several years, due to the complexity of the disease. They also experienced external barriers when they encountered ignorance from relatives, health care professionals, social insurance office administrators and people in the workplace. The focus group interviews also revealed the importance of the AntiStress program, which provided individuals with the opportunity to process internal and external barriers to heal in a way they did not previously experience through participating in other rehabilitation programs. In the AntiStress program, the participants were given the opportunity to individually process existential problems and take part in acupuncture treatment.
This study shows that healing takes time, sometimes several years. According to Arvidsdotter (Arvidsdotter, Marklund, Kylén et al., 2015), it is difficult to deliver the right support to promote the healing process if the individual, close relatives, people in the workplace, health care professionals or social insurance managers fail to grasp what living with SRED truly means. Everyone involved wants healing to happen more quickly than is even possible, but if insufficient time is allocated for healing, the rehabilitation efforts will be counterproductive. Ensuring sufficiently long healing periods is a challenge for all of us at some point. Other studies have indicated that return to work can occur only when the healing process has been started (Holmgren, Rosstorp, & Rohdén, 2016; Krabbe, Ellbin, Nilsson, Jonsdottir, & Samuelsson, 2017). The participants’ evaluations of the AntiStress program show that partial return to work is rather complicated and that the risk is high. It is therefore of utmost importance that primary care offers long-term rehabilitation measures that promote the individual’s need for internal and external support throughout the entire sick leave process.
The program’s holistic person-centered integrative rehabilitation method seems to have contributed to individual growth, mentally, physically and emotionally. Individual therapy, IPT and practical guidance integrated with acupuncture helped the participants address existential problems during the healing process (Eriksson et al., 2008). IPT dialog stimulated cognitive ability (Cuijpers, Smit, Bohlmeijer, Hollon, & Andersson, 2010) and interpersonal relationships (Cuijpers et al., 2016), thereby increasing the capacity to understand and recognize the difference between internal and external barriers (Rogers, 1978) as well as to identify individual resources for promoting health (Weissman et al., 2017). When self-esteem was strengthened, the individuals found more energy to engage in activities necessary for recovery and healing, both mentally and emotionally. This description is in line with the findings of Antonovsky (Antonovsky, 1987) and Frankl (Frankl, 1987), who note that individuals who understand context and realize the importance of change also strengthen their motivation and ability to handle difficulties and obstacles in the healing process. Moreover, dialog and training helped to increase the participants’ understandings and feelings of self-compassion and enabled them to accept themselves as they were (Neff, 2003). These effects increase individual self-efficacy and self-esteem, which in turn promote the capability to heal (Bandura, 1977).
This study, like others, shows that acupuncture promotes relaxation and recovery, as the participants experienced increased body awareness and well-being. If unexpected thoughts or feelings arose, they were treated with IPT, which reduced their anxiety and depression (Arvidsdotter et al., 2013, 2014; Arvidsdotter, Marklund, Taft et al., 2015). Life began to feel better, their quality of life and sense of coherence increased, and life became more manageable (Arvidsdotter, Marklund, Taft et al., 2015; Paterson et al., 2011; Rugg et al., 2011). In addition, the healing process was stimulated as a whole (Rogers, 1978).
Through the group forum, the participants experienced encounters with like-minded people with whom they could share their experiences and insights. They described the importance of being confirmed by others who understood in-depth what it means to live with SRED. Increased awareness resulted in the participants strengthening their abilities for introspection and personal development. The participants increased their knowledge about SRED and what gives and takes energy in everyday life as well as their understanding of themselves in relation to others. Other studies show corresponding results (Andersén et al., 2018).
The experiences with the mind-body-soul exercises were new for most of the participants in the AntiStress program. They had not previously tested qigong and were surprised by the immediate calmness that occurred, both mentally and physically. The participants experienced reduced levels of stress, anxiety and depression, as well as increased mental balance and physical aptitude. Review articles exploring qigong report similar results (Wang et al., 2013). Stenlund et al. (Stenlund, Birgander, Lindahl, Nilsson, & Ahlgren, 2009) reported no difference between the effect of qigong only and that of qigong and cognitively oriented behavioral rehabilitation. Both programs demonstrated a positive effect on a number of stress-related symptoms.
Digital health, or eHealth, is considered to be an easily accessible and inexpensive method that is increasingly used for mental health conditions (Stratton et al., 2017). As part of the AntiStress program, the AntiStress conscious breathing audio file was produced in 10 different languages as a self-care tool (Arvidsdotter, 2019a, 2019b). According to the participants, the audio file functioned as a lifeline through its 24-hour availability. The tool was useful for stress management in everyday life; increased conscious presence, rest and recovery; and reduced tension and stress. We have not been able to find any other rehabilitation program in primary care in which a similar tool has been used in this integrated way.
The AntiStress program appears to be well accepted and may serve as a useful supplementary integrative rehabilitation modality to standard primary care. This program offers a combination of individual and group learning approaches, focusing on understanding the body’s, mental and emotional reactions to stress and healing. We know that the AntiStress program in this study have given effects. However, we do not know which parts of the program which have had effects neither do we know the synergetic effects of the different parts of the program. Therefore, more research is needed to examine key factors in the healing process and clinical benefit of persons living with SRED.
7. Conclusion and Implications
The evaluation of the AntiStress program confirmed the idea that both the individual and group methods for integrative treatment and rehabilitation for persons with SRED were effective. According to the participants, the combination of exercises, acupuncture and IPT led to a turning point in their recovery. The participants described that after years of various antistress activities, they finally received support for self-help in a life situation filled with hopelessness, energy loss and loss of control. To offer individuals with SRED rehabilitation options, the present AntiStress program could serve as a model for developing a standardized treatment option for persons with SRED.
Acknowledgements
We wish to thank all the participants, leaders and primary care staff as well as the staff at the Research and Development, Primary Health Care, Region Västra Götaland, Sweden. We would also like to thank Professor Bertil Marklund for the valuable comments on the final version of the manuscript.