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The extensive suffering related to a complex life situation with bipolar disorder (BD) and the reported difference between care needs and the needs that are actually met implicates that there are still questions about management of life with BD that need to be answered. The present study therefore aims to describe the meaning of the conditions that enable a good life with BD. Ten persons, six women and four men (aged 30–61), diagnosed with BD were interviewed. A reflective lifeworld perspective based on phenomenological philosophy was used. The findings present the essential meaning of the conditions that enable a good life with BD as a dependence that empowers, which is further described by its constituents: “turning the course of life,” “protecting oneself from running out of energy,” “being needed,” “being oneself through reliable others,” “personal landmarks for navigating through life.” A voluntary chosen dependence, as described in the present study, is a new approach of care that enables a good life with BD, while enhancing own power, freedom, and control. The conditions that enable a good life with BD are more than separate supporting measures. Therefore a holistic perspective is preferable while providing care for individuals with BD.
It is well known that life with bipolar disorder (BD) is characterized by a struggle to understand oneself and to manage a complex life situation (see for example, Baker, 2001; Elgie & Morselli, 2007; Inder et al., 2008; Jönsson, Wijk, Skärsäter, & Danielsson, 2008; Pollack, 1996). The extensive suffering related to BD influences individuals as well as society to a great extent (Bhugra & Flick, 2005; Soares-Weiser et al., 2007). The present paper, which focuses on the lived experience of what is needed for a good life with BD, is part of a major project aiming to gain a greater understanding of different aspects of the lived experience of BD. The meaning of life with BD has been presented in an earlier study (Rusner, Carlsson, Brunt, & Nyström, 2009).
BD is a diagnostical classification term for a large variety of life-long mood swings characterized by depressive, hypomanic, manic or mixed episodes as described in the DSM-IV (APA, 1994) and the ICD-10 (WHO, 2007). There are a number of different diagnoses in the BD spectrum, each of which focuses on different aspects or combination of aspects of BD. Pharmacological treatment is recommended for most of them. Incidence and prevalence is estimated to 1–6%. Ninety per cent of patients with BD have recurrent episodes of the illness and the suicide risk is estimated to be 6–15% (Elgie & Morselli, 2007; Inskip, Harris, & Barraclough, 1998; Leboyer, Henry, Paillere-Martinot, & Bellivier, 2005; Tugrul, 2003).
In a study that included a variety of needs for support (Baker, 2002), users' experiences of illness, service, and treatment were explored. Support of family and friends was rated as being of greatest value, followed by medication, the support from specialist services and support groups. Karlsson (2006) emphasizes the importance of having significant others when living with BD and Vieta (2005) argues that pharmacotherapy combined with psychosocial interventions can improve a greatly needed awareness and understanding of BD.
Needs concerning stability, sleep, and sexuality are mentioned in several studies. Pollack (1995a) emphasizes the ongoing processes of information-seeking and self-management while striving to achieve stability, normality, and control in life with BD, despite both internal and external barriers. According to Jönsson et al. (2008) increased hope of being able to influence the condition together with stable structures in life facilitates the management of daily life. Lim, Nathan, O'Brien-Malone, and Williams (2004) show that patients with BD seek an elusive stability in mood and life, which affects their view and perception of the future. Post (2005) maintains that early diagnosis and understanding of the illness, early medical treatment as well as support from family and friends prevents serious negative impact on life, but emphasizes that there is a great need for new approaches that sustain a long-term stability in life with BD. Umlauf and Shatell (2005) state that sleep loss plays an important role in life with BD and the authors mean that patients need to be taught to improve the quality of their sleep and give suggestions of how this can be done. Bauer et al. (2006) have studied the temporal relationship between sleep and mood in patients with BD and they show that sleep changes from a previous pattern may indicate that a large mood change is imminent. Support needs concerning sexual issues of patients with BD are poorly explored. However, a sexually risky behavior is associated with some phases in life with BD and should therefore be considered in order to promote health for individuals with BD (McCandless & Sladen, 2003).
A high non-adherence to medical treatment causes an increased suffering for patients with BD (Sajatovic, Davies & Hrouda, 2004; Scott & Pope, 2002). Lewis (2005) emphasizes the need to establish a therapeutic alliance while it is a prerequisite to help achieve optimal wellness for the patient and not just remission from symptoms. An open communication between patient and physician helps to recognize and overcome barriers leading to treatment adherence. Dogan and Sabanciogullari (2003) have studied the impact of education on medication in some aspects and the authors maintain that such an education focus increases the medication knowledge, quality of life and regular medication use, and leads to a decrease in the level of symptoms.
Goossens, Knoppert-van der Klein, Kroon, and van Achterberg (2007a) report frequent care needs of timely indications of early warning signs, coping with grief and setbacks, talking about life experiences, identification of help and guidance as well as gaining more self-confidence. Morris et al. (2005) have studied the relationship between care satisfaction, hope, and life functioning. They suggest a continued focus on symptom reduction and relapse prevention, but stress that strengthening patient hope is also important in enhancing functioning of life. Pollack (1995b) emphasizes the need for information and education for individuals and their families in all health care settings. Psychoeducation, both for patients and their significant others, has a good impact on life with BD while facilitating recognition of early signs (Bauer et al., 2006; Cutler, 2001; Perry, Tarrier, Morriss, McCarthy, & Limb, 1999; Reinares et al., 2008).
Michalak, Yatham, Maxwell, Hale, and Lam (2007) have studied the ways in which the symptoms of depression and mania were presented in the workplace. They show that there are problems with a lack of continuity and consistency, with different aspects of loss, with stigma and disclosure at the workplace together with interpersonal problems. Examples of management strategies in the workplace are: removing themselves from occupational settings or reducing workload when symptoms appear, and enlisting emotional or practical support from trusted co-workers. More measures to facilitate for individuals with BD to achieve success in a work situation and to attain their vocational goals are needed (Tse & Yeats, 2002).
Previous research thus shows that there are still questions about management of life with BD that need to be answered. For example, a difference exists between reported care needs and the needs that are actually met (Goossens et al., 2007a). The present study therefore aims to describe the meaning of conditions that enable a good life with BD.
A reflective lifeworld approach, based on Edmund Husserls and Maurice Merleau-Ponty's phenomenological epistemology was used. Reflective lifeworld research aims to clarify and illuminate the structure of meanings of phenomena related to human existence (Dahlberg, 2006; Dahlberg, Dahlberg, & Nyström, 2008). By choosing to use that approach we aimed to come as close as possible to the essential meaning and its variations and thereby further develop the understanding of the phenomenon conditions that enable a good life with BD, that is closely related to human existence.
The leading principles for the chosen approach are an understanding of the world and body as lived and experienced as something, a focus on meaning as well as reversibility. Such research demands a phenomenological attitude, which is characterized by openness for the lifeworld phenomenon, ongoing reflection upon the meanings, bridling of the understanding as well as a movement between distance and closeness (Dahlberg & Dahlberg, 2003; Dahlberg et al., 2008).
Ten persons, six women and four men, 30–61 years old, diagnosed with BD, having experienced institutional psychiatric care, living in their own homes, and at the time of the interview not suffering from severe depression or mania were interviewed and asked to describe their experience of what is needed for a good life with BD. Seven of the informants were parents, four informants were living together with a partner and nine informants identified close significant others. Four of the informants had ordinary jobs on the open labor market, two were in a training program with the goal of gaining employment, and three were occupied with daily rehabilitation. Only one of the informants was without any kind of occupation. The informants were selected from two Swedish psychiatric clinics and one patient advocacy group for people with BD. Permission to conduct the study was granted by the directors of the clinics and a contact person of the patient advocacy group. The nurses at two community psychiatric clinics and the contact person for the patient advocacy group were informed and asked to make the initial contact with persons meeting the inclusion criteria and to inform them of the study. Those persons who declared an interest in participating then received verbal and written information from the first author (MR) about the study and what it would mean to participate. Written consent was received from the informant before the interview, which was carried out by the first author. In accordance with the leading principle of openness, access to the informants' medical records was not sought for and furthermore it was not considered important to know what type of BD the informants had been diagnosed with. In order to attain as great a variation of data as possible, the nurses making initial contact with presumptive informants were thus after some time asked to address male and young persons about participation in the study.
The interviews were tape-recorded and lasted between 50 and 80 mins. Open questions with a focus on the lived experience of what is needed for a good life with BD were asked. The setting for the interview was chosen by the informant. Five interviews took place in their homes: one at a community psychiatric clinic and the other four at neutral settings. Some of the informants in the present study were patients at the chosen psychiatric clinics at the time of being contacted but the informants from the patient advocacy group were not. The authors have therefore chosen not to use the word “patient” but “person” or “individual” when talking about the informants in the findings.
The interviews were transcribed verbatim by the first author and the text was analyzed for meaning in relation to the research question. The data analysis was conducted following the structure of whole-parts-whole as it is used and described by Dahlberg et al. (2008). To get a sense of the whole the text was initially read twice, trying to retain an open mind without starting the analysis process. With this sense of a whole as a background the focus of the analysis process changed to the parts. Meaning units were marked and described with a few words and in order to structure the meanings, clusters of these were formed. Out of these clusters a pattern of meanings emerged. A new whole structure of the essential meanings of the phenomenon “the lived experience of conditions that enable a good life with BD” was formulated and further described by its constituents, which are the experiential variations of the phenomenon.
The study was approved by the directors of the psychiatric clinics. In accordance with the then existing Swedish legislation, no formal ethical permission was needed for research studies that have no intention of affecting the informants physically or mentally. Information to the presumptive informants as well as the informed consent agreement was designed in accordance with the basic principles as stated by the regional board for ethical approval.
The essential meaning of the conditions that enable a good life with BD is a dependence that empowers. Life with BD is characterized by a strong, restless desire to be able to conduct one's life, and thus having a greater possibility of living a good life, which means a life corresponding to how one perceives oneself to be. The need to find ways to facilitate control over one's life is particularly strong in life with BD. Awareness of one's life as a life with BD and therefore being more dependent is the turning point from powerlessness to hope, meaning, and belief in the future. Furthermore, a voluntary chosen dependency means freedom to enhance control in life and protection from running out of energy. Choosing dependence concerns relationships and responsibility as well as dependence on personal landmarks for navigating through life. These essential conditions are more than just separate supportive measures, they constitute a fertile ground where a good life with BD can develop and grow.
The meaning of the conditions that enable a good life with BD is further described by its constituents, which represent the variations of the meaning: Turning the course of life, protecting oneself from running out of energy, being needed, being oneself through reliable others, and personal landmarks for navigating through life.
Being diagnosed with BD means getting a confirmation of a vague embodied knowledge that something really “is wrong.” The diagnosis also means that one is not the only one living with BD; there are many people around the world sharing this life situation. The feeling of commonality and belonging makes one less lonely. It eases the suffering and is most often the first step on the way toward an important turning point in life with BD. The turning point means realizing that one's life is a life with BD and that one has a choice to make. The choice concerns aspects of dependence as well as freedom and control. By choosing to involve others and to accept limitations, one opens up for new possibilities for freedom and the power to evolve.
Having a growing hope for a good life, which is worth living, is a strong inducement for change and can be significant for an open attitude toward change. Openness for change comes from within; it thus cannot be forced upon someone. Being open for a change in life comes above all from the point where suffering reaches a certain limit. It can be that the stress caused to the family has reached an unacceptable limit or that the cost is too high for oneself or others to pay. To become open for change is also a process over time to become more and more honest toward oneself and to others about how life is and that one needs support. Being responsible for children and having a life partner, who is involved, facilitates acceptance concerning the need for limitations such as medications and also to take a greater responsibility for the well-being of oneself.
I felt that if I was going to be able to look at my child I'd have to do something about my false life. My false life was my false feelings. That was also one of those clear messages I sent to myself.
Living with BD means being constantly attentive and observant while assessing life events, thoughts, feelings, and sensory impressions. It takes a lot of energy to be always thinking about and reflecting upon life, which means there being less energy left for the rest of life. Life thus needs to be made easier, i.e., attention toward ordinary everyday life activities needs to be minimized. This need differs from one period in life to another and has different expressions. Making life easier entails minimizing even wanted and cherished activities in order to have sufficient energy left for the most important things in life but also minimizing everyday activities like cleaning, washing, and cooking so that one has energy left to do things that bring pleasure and joy. Receiving a cooked meal or help to clean and wash can mean that one has the opportunity to create, for example, through painting or sewing and thereby getting new energy. Priority needs to be given to that which is most important while there is not enough energy for everything in life. This is the case for all individuals but the significance of prioritizing is particularly noticeable for individuals living with BD, being as it limits them. This also entails limitations in terms of planning for future events, while one does not know if one has the energy to carry out what was planned.
I'm always having to think about if I'm going to do something then I'm not sure whether I've got enough energy to do it. I have to make choices all the time, on every occasion. If I was able to choose I wouldn't eat or shower or do any of those boring everyday tasks, I'd spend my energy on other things instead. But at the same time one has to do these things and then I have to give up something else.
A simplified life also means having a structure that dictates that one does one thing at a time, refusing to be flooded by demands from others and society. A structured everyday life protects from stress and strengthens the control over the energy resources in a life characterized by an inner struggle about energy and power.
I must keep myself on an even keel at all costs. (Int: How, how do you do that?) Yes, I remove everything around me that is especially difficult. I prepare myself very carefully when I'm going to go out to do something. Errands, I make sure that I only have one or two to do at the most each day.
Structure and routines increase the possibilities for anticipating what will happen next and will help reducing energy loss for planning things recurrently. Regularity and good quality in terms of sleep, physical activities, and food thus enhances the individual's own strength of mind.
Gaining a rest from thinking, from impressions, from the surrounding world, from emotional stress, from responsibility, from a body empty of energy as well as from practical issues is needed to recover in order to be able to continue the daily struggle. Having different kinds of resting places helps to find new strength. Resting means protection and it may entail resting on a daily basis in order to protect oneself from running out of energy or just being alone. Sometimes, “when it is really bad” one needs rest in the shape of the protection provided at a psychiatric clinic. Structure, predictability, and total rest from all kinds of demands in life are part of that necessary protection against chaos. Rest also can be to sleep, sometimes “both day and night” but it can also be gardening or walking in the forest. Nature is a place for recovery, while following the cycle of the seasons strengthens the contact with that which is “real life.”
(Int: What helps you feel well?) Picking lingonberries and mushrooms in the autumn. Fishing, being in nature as much as possible, being able to study, write, I like pictures, having my senses stimulated, that's like life when it's real. That helps me to feel well. But those damn things such as ugly environments (hits the wall) untidy and in bad taste, make me feel ill.
Being needed is an experience, profoundly affecting life with BD. It means having a strong reason to continue the particular, daily struggle that characterizes life with BD. Being a father or mother with BD means among other things having a reason, i.e., the children, to take responsibility for oneself and to be open for and consider dependency. Being needed by one's children may make it possible to make breakfast for the children even though the whole being wants to stay in bed and sleep, trying to escape hopelessness, but also to stay focused in an emotional chaos. In this struggle one needs a back-up, i.e., knowing that there are others available and ready to help with the children when necessary. Having children and being needed by one's children may also prevent one from giving up the reason to live by committing suicide.
The most important is in fact my children and our little family. That's the most important. It's possible that I'd have coped with this situation in a totally different way if I hadn't had the children, gone on until I'd really not been able to manage any longer, because it's obvious I think with the pace I'd had in my life, that I wouldn't have coped another ten years like that.
It felt as though I didn't want to live any more. I thought about how I would do it but then thought that I've got two children, I can't do it, it's not possible, they wouldn't have any mother then.
Being responsible for and needed by one's children may even “in a way” make it possible to influence a manic, a more emotional open, period of life by postponing it to occur at a later and better time in life.
I've been able to redirect my manic periods to more suitable periods when I've had less to do at work. (Int: How? “I've been able to redirect” you say. Do you mean that you are able to determine when your manic periods occur?) In a way, yes. Because when I've seen that I have responsibility…
When she became sixteen she moved back to me and lived there for two years, until she left school and then there was no question of me being manic. And when I was at a work training scheme I was able to, I was often ill during the summer and that's the case now. Summer is the time when I can pay attention to my own inner life, or Christmas or Easter.
I have some sort of ability to control myself, I'm sure. I can't explain it any more, it's just as I described it, it's that way that it has appeared to me.
Being needed by and wanting to fulfill a promise to a fellow human being can change oneself from feeling anxious when just looking at the psychiatric clinic in which one had custodial care, into permanently overcoming that feeling of anxiety and even visiting the clinic.
Being needed, appreciated, and considered a part of the group at the workplace as an individual living with BD entails a help in overcoming difficulties associated with life with BD and protection against losing control in life. The work performance for an employee with BD can at some times be very high but at other times low. There must thus be a balance concerning demands. A feeling of being subjected to too much pressure and too many demands reduces a person's performance. An understanding, a flexibility, and unconditional support at specific times together with a welcoming attitude from the manager and fellow workers, even at the most difficult times, gives the person a meaning to continue struggling and improves the work performance. A work situation that can be individually formed without any overall responsibility is preferable, for example, working with children together with others.
It's been so good for me. (Int: What is it that has been so good for you? What have you been helped by?) I feel that I am needed. I feel welcome, there's somebody who's waiting for me. The kids run forward and embrace me when I arrive. I've got workmates who care, who see whether I've cut my hair and bought a new jumper or something like that.
Having trustful, honest, and confiding relationships that are both professional and private and that are involved in one's life with BD, enables one to be oneself. Engaging in a reliable professional caring relationship means helping oneself to find a shelter from the daily struggle to conduct life. In such a caring relationship one can work through painful, even almost unmentionable, experiences from the past as well as through worries about the future. Such experiences sometimes need to be shared with someone outside the closest family, with the intention of protecting them. Allowing a caring relationship to develop also means providing oneself with the possibility to ease one's own suffering and to increase one's own strength. In an open dialogue, characterized by real interest and open-ended questions, and within the framework of a caring relationship new insights can be gained and thus open up for profound change. Such an insight can be that one needs to be more honest with one's closest about how life is and to a greater extent let them be part of one's life. In a good caring relationship confidence of a specific kind may be built up. Words, thoughts, feelings, and opinions from the trusted person may be a necessary and important guide when trying to assess one's own thoughts, feelings, and sensory impressions. It enables better focusing and may even bring a person, who has nearly lost contact with him/herself and is unable to talk, back to greater control.
And it's that, which is my security, that I can ring her directly when something happens and I can get it out of my head. (Int: It becomes better after just one call?) That's enough, I feel better. (Int: Straight away?) Yes, yes but it's me that's thinking wrong and she helps me with it. And after the call I can think it's so simple and easy, I should have been able to work it out myself. But I can't, I get stuck in it. // It doesn't have to be so complicated and she gets me to think in completely different ways.
Having reliable relationships with significant others, i.e., private, professional as well as caring relationships, opens up for the possibility to help one be oneself and conduct life while giving them the right to take over responsibility when that is needed and make decisions without one's own consent. This requires trust, honesty, and a clear description and agreement beforehand of what is included in this right as well as the certainty that such an agreement may be changed at a later moment. It means to trust others sometimes even more than oneself and depend on their judgment. It is a dependence characterized by a voluntary choice, which empowers oneself. Having such an agreement, a contract, also makes life more peaceful and eases the anxiety for what may happen in the future.
But she has been given permission or how shall I say it by me and when she thinks things are getting out of control she is allowed to contact my partner and the doctor, etc. It also gives me some security, as I know what I can be like. Nobody can convince me of anything when I am in the manic phase.
Honest and direct communication is an important aspect in the context of such an agreement. It may hurt to hear the truth about how one is perceived, especially in a manic period, but it is necessary and desirable and also makes it easier to understand how one could change. Even indifference or conflict might be better than evasion and avoidance.
A network contract provides the possibility for communication, one dares, we've promised each other to be open and honest and then it's completely different. I've been given a lot of negative information from them, my friends, that they dare to say now. (Int: When you ask for it?) Yes, or I open the door for them. (Int: You open the door?) “Hello, come in and say what you are thinking and feeling” I thought I was like Jesus when I was manic, that I am a good person who takes care of the homeless and invite them in for a meal, etc. But then I heard from the others, those who are close to me that I was actually very arrogant towards them, rude, foul-mouthed and behaved in many different ways. // I've learnt a lot from this and don't talk like this any more. I've learnt.
A clear communication, both in words and gestures, promotes insight. For example, a police officer in civil clothes trying to open a door may be taken for a burglar while in uniform the mission can be understood.
I'm not at all scared of police in uniform. They once sent a group of police in civil clothes to collect me and I almost knocked one out and…they tried to pick the lock and I wondered who the hell it was, I couldn't understand what sort of people were doing that. I had to do something so I closed and locked the door. (Laughs). (Int: Had it been different if they had had uniforms on?) Uniforms, yes. Then they sent a patrol in uniform and picked the lock again. And the uniformed ones came into my flat. My first comment was: Have you got hold of them now? (Laughs) // I hadn't understood what these shady characters were, these police in civil clothes.
Close friends, who don't let you down but listen, even when you do not feel worthy of being listened to, can help share the everyday struggle to conduct life. By allowing one's closest friends to be involved one eliminates the need to make constant excuses, which can reduce inner stress. One phone call at the right moment from a caring friend may, for example, be the cause to change a plan for committing suicide into accepting care. In the same way as reliable relationships are important, dependency on unreliable persons can be destructive as it can increase insecurity, confusion, and loss of self-control.
Navigating through life with BD by significant personal landmarks provides safety and power. Analyzing past experiences, early recognition of warning signs, medication, and having an emotional outlet are such personal landmarks that enable the individual living with BD to prevent life from “running off the rails.”
Analyzing past experiences, both own and others, provides insights that help when navigating through life. For example, realizing that past personal messages via radio or television were not true means that one can better resist them next time when they appear. Even in situations when one does not have the energy to think or plan one can rely on such insights.
Early recognition of individual signs of an approaching deterioration in health means that one is not powerless any more but can take measures to keep oneself from the unwanted development. The signs often concern areas such as sleep, focus, thoughts, and strength of mind. The individual expressions need to be found and described, while being in need of help. Knowing that the anxiety is taking over does not always mean that one can cope with the situation is one example. Therefore, including significant others in this process increases the chance to succeed and brings hope and a sense of power.
Yes, it's in a period when I've been lying awake at nights and taken the dog out for a walk very early in the morning in order to cope with everything in time. Get up at five in the morning in order to get everything done and take on too many things, and my thoughts, I keep those to myself.
Using medication means increased control and protection from the extremes of suffering. Individually adapted medication enables a good life with BD, but only when the dose is adjusted in such a way that the emotional life is not suppressed.
The combination of extra strong sensitivity and a magnitude of emotions in life with BD means a strong need to understand and handle emotions. Listening to the body means listening to one's needs. Expressing emotions through creative art and handicraft means having an important emotional outlet, which enables emotional stability and well-being.
The findings show that a voluntary chosen dependence enables a good life with BD, while enhancing own power, freedom, and control. Awareness of one's life as a life with BD and therefore being more dependent is the turning point from powerlessness to hope, meaning, and belief in the future. Such awareness increases the insight that one needs to protect oneself from running out of energy. Being needed by another person also makes it is easier to take responsibility for oneself and thus to be open for and consider dependence. Another aspect that constitutes a dependence that empowers, is how one's identity is strengthened through relations with reliable others. Analyzing past experiences, early recognition of individual signs of coming deterioration, using medication as well as understanding and expressing emotions are personal landmarks that help navigating through life with a maintained power and control in life.
The findings of the present study are to be understood in relation to the findings of a previous study about the meaning of life with BD by Rusner et al. (2009). That study shows that living with BD entails experiencing extra dimensions in all aspects of life, expressed in terms of a magnitude and complexity beyond that which is perceived as pertaining to normal life. It concludes that living with BD means more for the individual than just having episodes of depression and mania and must therefore be understood from a holistic perspective. In this life of “more” also the conditions that enable a good life with BD are more than separate supporting measures, they constitute a fertile ground where a good life with BP can develop and grow.
The need for stability that is presented by Pollack (1995a), Jönsson et al. (2008) and Lim et al. (2004) have similarities with and thus support the importance of the strong, restless desire to be able to conduct one's life, which is emphasized in the present study. However, the need for a voluntary chosen dependence is not, as far as we know, described in earlier research and must therefore be considered as a new important contribution from the present study. Vieta (2005) proposes that the psychosocial aspects should be combined with pharmacotherapy in order to improve care and treatment of BD and Post (2005) requests new approaches that may sustain long-term stability for individuals with BD. The current study presents such a new approach, while presenting a holistic view of the conditions that enable a good life with BD, in terms of a dependence that empowers.
According to our study the experience of being needed and feeling responsible profoundly affects life with BD. It appears to even influence a manic, a more emotional open, period of life by postponing it to occur at a later and better time of life. Kunz (1998) draws on the philosophy of Levinas while saying that when being concerned about others, one is most oneself. When allowing oneself to be responsible it is possible to be more oneself. “The self finds its meaning, not centered in itself as an ego establishing individual freedom and power, but as a self facing the other person who calls the self out of its center to be ethically responsible” (Kunz, 1998, p. 34).
In this sense the constituent “being needed” in the present study can be understood as a dependence of being needed that shows “the road from mental illness to mental health” by “regaining one's obligations and responsibilities to and for the Other” (Cohen, 2002, p. 48; Kunz, 2007). If this is the case, then the caring services should focus more on connecting patients with BD to reliable others and to strengthening their relationships. This also raises the question if the, in our society, so highly valued independence at all is possible and desirable. The present study just touches these questions. A change in this core value could change the attitude of individuals with BD in a positive direction where dependence is concerned, and perhaps even those with psychiatric illnesses in general, and as well as their close ones, while making it easier to be open for and to receive support.
The current study agrees with previous research (see for example, Goossens et al., 2007a; Jönsson et al., 2008; Reinares et al., 2008; Umlauf & Shatell, 2005) on the significance of protecting oneself from running out of energy by paying attention to rest, sleep as well as prioritizing, building stable structures and early recognition of coming deterioration when living with BD. This also corresponds with a greatly explored area of what nurses actually do while caring for patients with BD (see for example, Goossens, van Achterberg, & Knoppert-van der Klein, 2007b; Hummelvoll & Severinsson, 2002; Jones & Jones, 2008). In addition to those examples, Goossens, Beentjes, de Leeuw, Knoppert-van der Klein, and van Achterberg (2008) explored nurse's experiences of caring for patients with BD. One aspect of the results in that study is relevant to discuss in relation to the present study. The five most significant problems for patients with BD, as reported by nurses, were non-acceptance of the illness, social problems, work-related problems, relational problems, and mood instability. Our study supports the need of improved care in those areas. Particularly interesting is that non-acceptance of the illness was ranked as the problem with most significance. The current study described a similar result, but from the patient's perspective, as a need for of a turning point from powerlessness to hope, meaning, and belief in the future, which means awareness of one's life as a life with BD and therefore more dependent. In this turning point the diagnosis plays an initial role. However, it is not the diagnosis itself that is of significance, but moreover the easing of the suffering from loneliness by a feeling of commonality and belonging. Mood instability was also mentioned as one of the top five problems. The combination of extra-strong sensitivity and a magnitude of emotions in life with BD (Rusner et al., 2009) entail a strong need to understand and handle emotions. The value of individually adapted medication, with a dose that is so adjusted that the emotional life is not silenced, listening to the embodied needs as well as having an emotional outlet with the intention of enabling emotional stability and well-being, is emphasized by this study. While being aware of and communicating the significance of not wanting the emotional life to be silenced by medication, the caring services could help patients to be more open for medical treatment.
Tse and Yeats (2002) request more measures to facilitate for individuals with BD to succeed in work and to achieve their vocational goals. The present study contributes an answer to that request by illustrating the significance of having a work situation characterized by understanding, a balance concerning demands, a welcoming attitude from the manager and fellow workers, flexibility and unconditionality at specific times in order to enable for an individual with BD to perform well at work. Such a work situation gives a meaning to continue struggling and paradoxically even improves the job performance. The labor market in Sweden, as well as in most countries in the world has recently become more difficult to enter and it is reasonable to assume that this makes it more difficult for individuals with BD to find a job that correspond to their needs. Having a meaningful work situation has been shown to have great significance for the health of individuals with this diagnosis and perhaps the health services and caring science researchers should consider increasing their involvement in the public debate about the situation in the labor market. Baker (2002) pointed out support of family and friends as the mostly valued aspect of support, as experienced by users. New understanding is added from the present study to that subject by showing that having reliable relations to significant others, i.e., private, professional as well as caring relations, opens up for the possibility to help oneself being oneself and conduct life while giving them the right to take over responsibility when that is needed.
While following the leading principle of openness for the phenomenon conditions that enable a good life with BD the questions to the informants about the experience of what is needed for a good life with BD were widely put. This means that experiences of all kinds of needs, not just care needs, were approached. Nevertheless, the findings are considered to be highly relevant for the caring services in their attempt to provide good care for patients with BD.
We have had some difficulty to name the phenomenon in focus. The initial intention was to name it “the lived experience of support.” Realizing that the term support often is associated with different forms of support, for example, “social support” and “emotional support” made us consider other terms. The research question as well as the interview questions focused on “that which is needed” for at good life with BD. Finally we chose to name the phenomenon of this study “conditions that enable a good life with BD.”
Phenomenological findings do have an essential part of the meaning as well as parts showing the variations of the meaning. If the collected data has great variation, the essential meaning can be widely applicable in similar contexts. This means that “a dependence that empowers” most probably is general for all individuals with BD. The variations of that essential meaning, also described in the findings, are closely and reversibly connected to the essence but show the different expressions of the meaning of the conditions that enable a good life with BD.
The present study emphasizes the great importance of reliable relationships with significant others. An option for future research therefore could be to investigate the meaning of being a reliable other and what is needed in order to be a reliable other.
The authors would like to thank the persons participating in this study, Alice Swenzon's foundation, the Research and Development Council of South Ålvsborg, Swedbank Sjuhärads foundation for Research at South Ålvsborg Hospital, and the Swedish nurse association for financial support.
The authors have not received any funding or benefits from industry to conduct this study.