ABSTRACT

The aim of this study was to describe the perceptions of everyday suffering among adults with attention deficit hyperactivity disorder (ADHD) and comorbid mental disease. Directed content analysis guided by Eriksson’s theory on human suffering was performed on data from 20 individual interviews. Expressions of both suffering and well-being were identified; the former centred on loneliness and related to life, illness, and care, which supported Eriksson’s theory, whereas expressions of well-being related to ADHD diagnosis and supportive social relationships. Nevertheless, results indicate the need to expand those expressions in order to better contribute to developing a supportive rehabilitation regimen that can provide more interpersonal care.

Keywords:

Adult Attention Deficit Hyperactivity Disorder, Directed Content Analysis, Suffering, Supportive Rehabilitation

1. Introduction

Although research has suggested that living with attention deficit hyperactivity disorder (ADHD) can be a strength, the disorder nevertheless affects many aspects of health, beginning in early childhood and continuing throughout adulthood [1] . ADHD affects individuals of all ages, who as a result of the disorder face more challenges than the general population [2] [3] . Roughly 70% to 80% of adults with ADHD also have at least one psychiatric disease, including depression, anxiety, substance abuse, personality disorder, or autism spectrum disorder. This complicates the diagnosis of ADHD since these conditions overlap [4] [5] . Adults with ADHD often suffer from a wide range of social, emotional, and psychological problems that affect both their professional and social lives [6] .

ADHD negatively impacts adult’s well-being across a number of domains and generally diminishes quality of life [7] . At one extreme, ADHD has shown a strong relationship with suicide [8] . Less drastically, several studies have described the burden of living with ADHD in experiences that are highly similar across various cultures [2] .

Many adults with ADHD have reported struggling to receive correct diagnoses, and though such diagnoses have improved their lives, the lack of professional help was perceived to be disappointing [9] . Many adult sufferers wish to find additional support in order to increase their self-knowledge, achieve greater acceptance of imperfections, and receive positive feedback for their gifts, talents, and skills [9] .

Traditionally, patients receiving psychiatric care suffer when they are negatively judged [10] . In particular, people with ADHD diagnoses are more likely to be stigmatised both in public and by healthcare professionals, both of which strongly affect their life satisfaction and mental well-being [11] . Studies have provided valuable insights into the burden of diagnosis, treatment, and the everyday needs of adults with ADHD. Above all, recognising and alleviating suffering may be the most important ethical rule in mental healthcare practice. In rehabilitation support, it is also vital for healthcare practitioners to learn how to understand and help adults with both ADHD and concurrent mental disease in their suffering.

Even so, current understandings of adults with ADHD and their daily suffering remain limited. According to Eriksson [12] suffering is linked to the concept of health. It is associated with illness and treatment, and manifests in the form of physical pain, spiritual and mental suffering [13] [14] . According to the basic of nursing care, it is always important to protect human dignity [12] . Self-dignity may be noted in how care providers support and respect a person’s dignity during rehabilitation [15] . However, few studies have elucidated concepts of suffering or developed more supportive, individual rehabilitation regimens for adults with ADHD and comorbid mental disease, despite the importance that persons with ADHD explore their individual expressions of suffering. In response, the aim of this study was to describe the perceptions of everyday suffering among adults with ADHD and comorbid mental disease.

2. Method

2.1. Design

The study was conducted in autumn 2015. This study adopted a qualitative approach that allowed for nuances, details, and reflections [16] . The design employed a directed approach [17] [18] guided by existing theory adhering to Katie Eriksson’s framework on human suffering, which the study sought to validate or extend, if not both. Such a method afforded the inclusion of deductive thinking in qualitative research to facilitate the development of theory and science [19] .

2.2. Setting and Participants

Participants lived in one of two counties in the north of Sweden. Participants were recruited through collaboration with the national association Attention, an interest group for people with neuropsychiatric disabilities, as well as via radio and newspaper outlets and open psychiatric clinics. Eligible participants received written information about the purpose and procedure of the study, and individuals who wished to participate were instructed to contact the “researchers” by phone. In all, 20 participants (10 women and 10 men, aged 19 - 57 years) provided their consent to be interviewed. Inclusion criteria of ADHD diagnosis and concurrent mental disease were confirmed, according to DSM-5 (see Table 1) [20] . The exclusion criteria were acute mental illness, active substance abuse, inability to speak and read the Swedish language, or mental retardation.

Most of the participants in the present study received their diagnoses late in life which also may have contributed to the development of other psychiatric disorders, see Table 1.

2.3. Data Collection

Each participant’s written consent was collected, and each participant decided on the time and place for his or her interview. Interviews were constructed following Kvale’s [21] approach for addressing all aspects of suffering described by Eriksson [13] [14] . Using stories as a data collection method is supported by Sandelowski [22] , who has argued that an individual’s story gives important information about the narrator―that we are the stories that we tell―and that each story addresses the past, present, and future. Simultaneously, questions were formulated openly to capture unexpected elements and unique experiences. Initially, interviewees were asked to speak openly about their experiences of living with ADHD. The following primary questions guided the conversation:

Ÿ Would you please tell me about your daily life and how you experience it?

Ÿ Would you please tell me about an incident of good health and not-so-good health that you have experienced?

Ÿ Would you please tell me about your daily life before and after you were diagnosed with ADHD?

As stories unfolded, more targeted questions were posed to interviewees about their perceptions of daily suffering. The first author (AB) conducted and audiotaped all interviews, which lasted 60 to 90 min, and the second author (YR) transcribed all interviews verbatim. All interviews were conducted at the university office.

2.4. Data Analysis

Directed qualitative content analysis [17] [18] was chosen for analysis. The chief strength of that deductive approach is that it facilitates the corroboration and extension of existing theory [16] . By applying Eriksson’s [13] [14] , theoretical framework on human suffering, analysis aimed to make deductions from content about suffering related to life, illness, care, and adult ADHD and concurrent mental disease.

The analysis involved several steps. In general, complete interview texts were considered to be the units of analysis. Because the data already represented an interpretational dimension of participants, manifest content was primarily sought. All interviews were read several times in order to gain a sense of the whole. Data were reviewed to identify meaningful units that corresponded with or exemplified a predetermined coding scheme (i.e., pre-determined categories for suffering). In a subsequent step, meaningful units that did not represent suffering because they appeared to fit into additional categories were inductively analysed. All meaningful units were condensed, compared, and abstracted into subcategories and then into primary categories. The logic of analysis was constantly tested by alternating between the transcribed text and the developed categories [17] . The initial analysis, performed by the first author, became the subject of reflexive discussions between all five authors. De-contextualized findings were re-contextualized, reflected upon, and challenged from various angles [23] . To achieve trustworthiness, all authors were involved in the interpretation of findings until consensus was reached [24] .

2.5. Ethical Considerations

In accordance with the requirements of the Helsinki Declaration, written informed consent was obtained from each participant. The Regional Ethical Review Board in Umeå (granted permission for the research (no. 2015/51-31)).

3. Findings

Participants revealed experiences of both suffering and well-being in their daily lives. Our analysis resulted in predetermined codes/categories in terms of expressions of suffering; suffering related to life, suffering related to illness, suffering related to care, as shown in Table 2. Category in terms of expressions of well-being; subcategory Well-being related to ADHD diagnosis and Well-being related to supportive relationship as shown in Table 3.

3.1. Expressions of Suffering

Suffering related to life

Adults with ADHD and concurrent mental disease revealed that suffering related to life could include anything from existential threats to a compromised ability to feel a sense of purpose in various social endeavours. Suffering related to life emerged in all areas of daily life and included problems with school or work, as well as social hardship with family, friends, and colleagues. Feelings of

being different were experienced by some participants before the age of five years and by others when they started primary school; in both cases, the feelings affected their self-esteem. Conflicts and difficulties with listening and coordination in gymnastics at school, for example, strongly affected some participants’ self-esteem. As one participant reported:

It was painful because I did not understand what they yelled at me over... [and] difficult when my parents had to go from work all the time to take me home... There were several times when... I tried to kill myself... I was 11 or 12 years old (Male participant).

Some participants expressed sadness, anger, or feelings of unfairness, guilt, and shame, and some used avoidance strategies such as isolating themselves to cope with their situations and thereby experienced loneliness. Some expressed suicidal thoughts. One woman expressed that she had very low self-esteem and felt strong self-hatred. One man reported that he felt so mentally exhausted that he often vomited when he came home from school. Unfortunately, experiences of teasing at school and having no close friends were common among participants.

Employment usually resulted in participants’ first contact with healthcare services. Several participants described feelings of stress, problems with sleeping, and conflicts with colleagues, as well as a lack of structure and high expectations put upon them. Tiredness after a day at work was described as paralyzing and negatively influential on social interactions, which often prompted greater feelings of loneliness. As one man stated, “I worked, slept, and had no social life at all”.

Suffering related to illness

Adults with ADHD and concurrent mental disorders were found to suffer from physical, psychological or existential pain. Many participants said that they often suffered from insomnia as well, which gave them the feeling of being as tired as a zombie and useless, in addition to emotions of worthlessness, loneliness, and anxiety and even suicidal ideation. Others reported suffering from bodily pain, including headaches, joint pain, and muscle aches. A female stated, “Physically, I am so bothered by headaches that come and go and pain in my joints and muscles. I have pain in my neck, on my back”. Others reported that they suffered from forgetfulness, which resulted in feelings of confusion and even panic attacks. One man described his discomfort with forgetting things and his fear of harming his children as a result. He said that he sometimes forgot to give them food, which made him feel a constant, nagging anxiety and sometimes even experience panic attacks. Lost support described by several interviewees prompted their feelings of loneliness and depression.

Another woman described how her great supporter in life―her mother― passed away, after which she ended up with major depression that lasted for several years. Numerous participants described that they had great stores of energy and were industrious at work, but could nevertheless suffer from exhaustion or depression. “The job was so fun, so I was there all of the time” one interviewee described. “But there was a major reorganisation at work... in the end... I entered into a deep depression” (Female participant).

Major problems in achieving structure in daily life and planning (e.g., planning meals or sleep time, taking medication correctly, and performing physical activities) were also described to be quite difficult. Many participants considered taking care of their health to be increasingly important over the years, and some expressed that the greatest challenge was simply finding the motivation to initiate tasks. Many found it difficult to eat balanced meals and described their diets as consisting mostly of fast food. Some said they could eat the same food every day for a week or so, and several described that even when they felt hungry, it was so difficult to get into meal routines that they did not bother to or forgot to eat. Several participants reported they had no energy left after their workday to cook or even think about what they would eat for dinner. According to a female participant, “Food has always been difficult... cooking dinner and getting it ready by a certain time... I feel stressed out... then I start to feel bad mentally”. Some participants gained weight and feared getting diseases such as diabetes or heart disease because of their poor diets and lack of physical activity.

Suffering related to care

Suffering related to care occurred during visits to hospitals or primary healthcare professionals and could refer to various healthcare professionals. Many participants described that kind of suffering in their healthcare histories as they struggled to obtain an ADHD diagnosis. Several concluded they had ADHD based on information found online. However, they did not feel that the healthcare staff listened to them, and they felt a sense of being misunderstood and expressed feelings of powerlessness. When recalling such situations, interviewees became very emotional and expressed great disappointment over the loss of self-esteem and feelings of having wasted their lives. Some participants burst into tears, and others expressed anger.

Distrust of healthcare professionals was common among participants. Several reported that they were treated for a variety of psychiatric diseases before getting correct diagnoses, and many felt disappointed and lonely due to their diagnoses and lack of sufficient care. One man said that he did not receive any support from healthcare staff for his ADHD diagnosis; consequently, he paid for a private investigation that cost him an entire month’s salary. For many, when a correct diagnosis was finally reached, they described experiencing a loss or lack of care, receiving only medical treatment, and feeling that they had been left alone, which saddened them. One said:

I did not receive much help from healthcare after my diagnosis, either. The mental healthcare staff prescribed medicine and then follow-up meetings to ensure that the medicine worked. It often did not work well... I tried cognitive behavioural therapy and sleep school, and nothing helped me (Male participant).

Nursing care, support, and treatment were absent in most cases. Although some participants reported receiving numerous treatments, including cognitive behavioural or dialectical behaviour therapy, they said that they felt even lonelier and wished for more professional support.

3.2. Expressions of Well-Being

Well-being related to supportive relationships

Having supportive relationships with family and familiar people was pivotal for participants’ feelings of well-being. All participants were convinced that the family’s presence and care had contributed to their well-being, and they described the importance of love, practical support, and understanding, all of which helped them to recover. Good friends as well as teachers provided practical support and helped to inspire hope in life, which contributed to their well-being. One woman shared her experiences with stress in school and keeping track of all of the classrooms, her schedule, and her books by saying, “I made it in school because my classmates helped me and took control”.

Family members also provided safety and were important for participants’ commitment to daily routines. Several participants described family support as a reason for receiving an ADHD diagnosis late in life. One woman said she managed her life thanks to her mother’s structuring her days for her and provision of both support and advice. A man described how his wife gained an understanding of his disability and thus took greater responsibility for structuring the daily lives of the entire family. Supportive care from relatives was also mentioned as a means by which good and healthy food could be obtained. Participants described how family support throughout their lives provided strategies for them to deal with their difficulties and how relatives and friends could confirm their challenges could be assets.

Other ways to experience feelings of well-being included being active and participating in various physical activities. Many participants described feelings of increased well-being when performing physical activities with others in groups. Others said that relationships with animals and beautiful natural surroundings effected feelings of inner peace. As one participant reported,

I think that my solution is to try to run as much as possible and work out with the dog. When running so much, I become so exhausted that I can relax. Short explosive workouts work the best for me (Female participant).

Daily activities such as at work were also conceived to be key components for experiencing well-being. Feelings that meant something and furnished structure in everyday life eased anxiety and improved self-esteem. As one man stated, “The positive aspects of a working life are that you feel more independent and experienced―that you are a part of society in some way―and not so lonely”.

3.3. Well-Being Related to ADHD

Positive experiences in obtaining an ADHD diagnosis dominated among participants. The diagnosis was often used to explain a past of even more difficult life situations and seen as a tool to gain more self-awareness and help with self-care strategies. Being diagnosed was also connected to a more supportive environment involving increased support from healthcare staff and the workplace and more understanding from friends and close relatives. Participants described positive feelings when taken seriously, believed, and listened to in meetings with healthcare workers. Nursing care staff showed that they understood the disability (e.g., with reminders sent before doctor’s appointments) and gave a sense of well-being.

My life has become better now after the ADHD diagnosis. There is now an explanation for why I do not function like other people. I now know how to handle difficulties. With medication, it is easier to have focus and to concentrate. I feel better mentally and have energy around other people. Life has been much easier, but it is still not good (Female participant).

4. Discussion

Adults with ADHD and concurrent mental diseases were asked to relate their experiences with ADHD during their daily lives. Results revealed expressions of both suffering and well-being. According to Eriksson [13] [14] , suffering is a fundamental part of human existence and can be divided into three dimensions: suffering associated with life, suffering associated with illness, and suffering in care. In short, the descriptions of suffering by participants were consistent with Eriksson’s theoretical framework of human suffering.

The study suggests that suffering related to life can be understood as not only a mental health problem, but also as a life experience found in a person’s life story. Individual narrations afforded an opportunity to grasp a more comprehensive picture than what might have been possible if a more symptom-focused approach was used [22] . Participants’ narratives seemed to describe deep suffering from as far back as childhood and little about future goals. Their lives seemed marred by conflicts at school and work and even on sick leave. Participants expressed feelings of guilt concerning others, of high expectations at work, of not to be believed, and of loneliness and alienation.

Many participants described feeling loneliness and engaging suicidal ideation throughout their lives. Such results confirm earlier reported feelings of loneliness and suicidal thoughts [25] . Loneliness seemed to stem from feelings of being different, which most participants expressed experiencing since early childhood. Loneliness is strongly associated with suicidal behaviour, even among the general adult population, and there is a strong connection between ADHD and suicide [8] [26] . Such a conceptualisation aligns with Eriksson’s [13] view that the deepest feeling of loneliness is the deepest sense of suffering.

Among other results, suffering related to illness referred to various symptoms of ADHD, as described in other studies [7] [27] [28] . Loneliness could prompt depression and hyperactivity, even psychosis, depression, or burnout, while forgetfulness could be expressed in feelings of anxiety and precipitate panic attacks. Lack of motivation, planning, and structure were experienced as being stressful and to cause unhealthy lifestyles, marked by a fear of somatic disorders and obesity. This finding coincides with Eriksson’s theory, which holds that illness-related suffering is experienced as physical pain originating from disease or its treatment and that spiritual pain originates from feelings of being belittled [13] . Some informants told stories about a weakened, powerless body, while others described increased bodily and spiritual pain, both of which are experiences described in other studies as well [29] . Basic symptoms of ADHD posed enormous consequences of suffering, and some participants were so devastated that they recounted thinking about death as a way to avoid the suffering caused by psychiatric disease.

Suffering related to care often meant struggling for an adequate diagnosis. Participants described being met with aggressiveness from healthcare staff who did not take their suffering seriously. Misdiagnoses and medication for other mental illnesses with serious side effects commonly occurred. Such situations could, in the worst case, last for several years and lead to disappointment and lack of confidence in healthcare. As found in earlier research, suffering associated with care includes various forms of neglect, condemnation, and punishment [13] . Neglecting or being denied help by healthcare professionals was perceived to generate the pain of both increased anxiety and feelings of disappointment, which escalated into physical pain. As the results of other studies have shown, interviewees have stated that much of their suffering could have been avoided if they had received the diagnosis earlier [30] [31] [32] . The findings confirm that suffering can prompt feelings of alienation, both from others and from oneself. Suffering is an ontological and inevitable part of life and that interacting with others and developing as individuals occur at the same level. In that sense, suffering and well-being are strongly linked, and the concept of well-being in participants in the present study arose as entrusted suffering [33] [34] [35] . When a person is affected by ADHD, health may include the ability to adapt and self-manage in the face of social, physical, and emotional challenges (e.g., bodily functions, mental functions, existential and social dimensions, and daily functioning). Results confirm those of other research showing that undiagnosed ADHD is a risk that strongly and negatively influences a person’s daily life in social, behavioural, and intellectual aspects [36] . Participants in the present study indicated that it also increased feelings of hopelessness, loneliness, and thoughts of suicide.

Edvardsson [37] has explained that healthcare staff who do not act from a patient-focused perspective often appear untrustworthy to patients and unable to understand them as individuals. This dynamic creates an unstable staff?patient relationship that may have a detrimental effect on patient health. All three kinds of suffering found in the analysis were interpreted to result in feelings of alienation and loneliness. Well-being was interpreted to counteract the alienation inherent to suffering by representing feelings of connectedness to other people.

Participants additionally described a longing for good interpersonal encounters. According to Eriksson [12] , a caring conversation about suffering could be a turning point in life toward maintaining relationships with oneself as well as others. Such situations might arise, for example, when healthcare workers show genuine interest by confirming patients in their suffering. Such a response may be seen by an ADHD sufferer as an expression of togetherness. As earlier research has attested, all forms of care constitute variations of human togetherness [38] .

To enter into togetherness means to create opportunities for another person. Togetherness in care is described as a healing process for both the patient and caregiver and constitutes a foundation for health. According to Buber [39] , life involves gatherings and meetings; as humans, we are born into togetherness with other people, and that togetherness may be seen as a foundation for all humanity. In the present study, participants’ feelings of being viewed as people with individual needs could also facilitate their sense of well-being and health. Being met as a person with a body, soul, and spirit is about viewing a person with unique features. A patient’s world, vulnerability, health, and suffering are primary, and in the art and act of caring, relationships and dialogue are essential [40] .

Participants were exposed to suffering related to life, illness, and care, which they sought to alleviate via various forms of well-being. Even so, they were all exposed to feelings of loneliness, social exclusion, and poor self-confidence, which affected their lust for life. According to Eriksson [13] , suffering related to care is an unnecessary suffering that can largely be eliminated if a more humane perspective permeates the healthcare environment. According to Westin and Danielson [41] , encounters based on confirmation―that is, seeing, listening to, and understanding others and taking them seriously―will evoke feelings of being valued and respected as unique individuals, which can increase feelings of well-being.

5. Methodological Considerations

Using a qualitative method involving deductive content analysis following the theory proposed by Eriksson, this study revealed suffering to be the most suitable way of understanding the life situation for adults with ADHD and concurrent mental disease. A deductive approach was best suited to the research question, aim, and chosen theoretical framework of this study. Using a deductive approach allowed the examination of Eriksson’s theory in consideration of real situations of suffering.

However, the method also affected the interpretation of data collected. The disadvantage of deduction is that it accepts old assumptions about reality as correct, meaning that there is a risk that new discoveries will disappear [17] [23] . The intention of using a theoretical framework for suffering could challenge traditional qualitative approaches and be understood as biased in being driven by theory [18] .

To overcome that problem, texts were analysed as if they were not solely about suffering. Separately and inductively, a second category called expression of well-being emerged. The entire research process was performed with an awareness of trustworthiness in terms of credibility, transferability, confirmability, and dependability [24] .

Twenty participants were enrolled through purposeful sampling, which resulted in rich interviews with informants who were willing to share experiences from their daily lives. Because individuals who were included had accepted an invitation to participate in a lifestyle program, their willingness to participate could have affected the results. According to Malterud et al.’s discussion of sample size and information power in qualitative studies, ten men and ten woman (n = 20) participated in this study [42] . Apart from that, the so-called “information power” in the study was reasonably strong in fulfilling the aim of the research. The sample included with both men and women of various ages and life circumstances, and an established theory and analytical strategy were used [23] .

Semi-structured interviews did not directly mention suffering, which afforded participants the opportunity to freely describe their life experiences as guided by follow-up questions with the purpose of capturing suffering. Some participants said they found it important and interesting to participate in the research so that they could contribute to current knowledge. For them, the interview was an important conversation in which they were given the opportunity to discuss their difficulties in various life situations. In the analytical process, content analysis and predetermined codes revealed that the subcategories corresponded well with the content and aim of the study. All five authors were involved in analysis in order to achieve more trustworthiness.

6. Conclusions and Implications

Adults in this study experienced suffering related to their disability (ADHD). They expressed loneliness in suffering related to life, illness, and care, and some reported previously thinking that suicide was an escape from such suffering. They described aspects of well-being that contribute to health despite the presence of suffering: feelings of being in relationships with others and having explanations of their suffering. In sum, the care needed for the population studied remains short of ideal. There are ways to improve the quality of care, not the least of which is avoiding unnecessary suffering. Despite their expressions of well-being, feelings of loneliness and disappointment seemed permanent. Examining the population’s expressions of suffering and well-being can facilitate approaches toward deeper understandings of adults with ADHD. Results indicate a need to review and possibly expand perspectives on suffering and well-being, and those findings can contribute to increased knowledge about how to develop supportive rehabilitation regimens for the population that involve both individual and interpersonal care, especially in social relationships.

The main results of this study were that adults with ADHD and concurrent mental disorders must be taken seriously, because their suffering is an obvious risk of suicide. It is important that nurses take consideration to suffering in terms of constant feelings of being different as well as multiple conflicts in social life. Moreover, suffering could also be expressed in form of bodily pain. Many participants also had poorer diet, lack of physical activity and expressed feelings of powerlessness in healthcare. A lifestyle program led by nurses could contribute to care and rehabilitation in mental, physical and social health.

Conflict

This paper has given full ethical approval from the The Regional Ethical Review Board in Umeå (granted permission for the research (no. 2015/51-31)). There is no funding given for this research. Disclosure: There is no conflict of interest.

Cite this paper

Björk, A., Rönngren, Y., Selander, J., Vinberg, S. and Hellzen, O. (2017) Perspectives on Everyday Suffering among People with Adult Attention Deficit Hyperactivity Disorder and Concurrent Mental Disorders. Open Journal of Nursing, 7, 583-598. https://doi.org/10.4236/ojn.2017.75044

References