Well-being and Ill-being
Well-being has long been regarded as an important dimension of health related quality of life scales . The emotional component of subjective well-being consists of high levels of positive affect (experiencing pleasant emotions and moods), and lack of low levels of negative affect (experiencing few unpleasant emotions and moods) . Within our papers, symptoms of mental illness and aspects of emotional well-being were intertwined, with an emphasis on the negative rather than the positive. This suggested that ill-being, which is more akin to distress and the symptoms of mental illness, is an important aspect of quality of life for those with severe mental health problems.
The most evident ‘ill-being’ themes were general feelings of distress from symptoms; the experience of psychosis/mania; depressed mood; problems with energy and motivation and fear and anxiety.
Distress from symptoms
Distress, or the subjective experience of the symptoms of mental illness, was evident in the majority of studies [26, 28, 30–32, 35, 36, 40] and a major theme in four [28, 30, 35, 40]. The subjective experience of mental illness was described as wretched  a burden, debilitating, painful , tormenting , and as having a tyrannical power over life . Pre-occupation with the symptoms of mental health problems interfered greatly with the most basic tasks of everyday living [26, 28, 31, 40], making it difficult to deal with anything but the present moment . Instead life was consumed with coping on a daily basis and living ‘one day at a time’ - sometimes on a moment to moment basis [28, 31, 34].
Symptoms of mental illness were described primarily in negative and restrictive ways. Subjects reported continually trying to deal with the symptoms, describing symptoms as “a great burden.” The symptoms seemed to be so encompassing that these men had difficulty seeing beyond the pain of today. “This illness is a great burden. Day-to-day survival is a big question, and I just feel in a turmoil a lot of the time”; “I’ve had terrible suffering for over 20 years.” [40-A pervasive feeling of distress]
Experience of psychosis/mania
Distressing symptoms reported included hallucinations and delusions (particularly hearing voices, thought disturbances and paranoia) [26, 28, 30], reality disorientation , mania, and hypomania , feelings of discomfort, weirdness or oddness , and irritability or agitation . These symptoms could interfere directly with day to day living by having an effect on behaviour control [26, 30, 35, 38], concentration, memory or decision making [26, 30, 31] and sense of self-identity [28, 31, 37].
“When I hear voices erm, that stops me from doing a day to day existence, I’m preoccupied with the voices”; “ … the voices, how they’ve affected my life, erm, er just day to day living basically… Erm just er, getting out, getting out and doing things er…go to the shops, erm, erm, cooking, anything, anything like that”; “I daren’t go out now, thoughts in my head, make me think bad things; I get paranoid when there’s crowds of people.” [26-Fear of exacerbating mental health difficulties].
Depression was a diagnosis of a proportion of participants in two of the studies [28, 29] and bi-polar disorder the primary diagnosis in three further studies [35, 37, 39]. Negative affect, in the more severe form of depression including feeling suicidal  (as opposed to simply being sad, unhappy), was also identified in studies where the primary diagnosis was psychosis related [26, 30, 34, 36, 40]. It was also the symptoms of depression in bi-polar patients that were reported as being particularly distressing , together with the unpredictability and instability of mood [35, 38].
Energy and motivation
Depression was often expressed as associated with a lack of energy and/or motivation. Although energy and motivation might be regarded as two distinct concepts (physical and psychological), they were closely associated and for the most part reported together within the primary research. Energy, or lack of it, was a major theme in one study  and all but three of the primary research articles [32, 33, 35] described the debilitating effects of lack of energy. The three studies where energy and motivation were not evident focused on the nursing implications of panic disorder  the psycho-social issues related to bipolar disorder  and the positive determinants of health . Participants reported feeling generally drained of energy [26, 28–30, 38, 40] associated with a lack of motivation, enthusiasm, or interest in things [26, 28–31, 34, 36, 40]. The side effects of medication  or problems with sleep [26, 30] were reported as having a causal effect.
“The quality of my life in the last few years has been horrible, because it has taken so much energy and struggle to get through so many things…. I’ve got to get out, go out and do things or go to concerts or go to school things, or go to meetings or something, and doing some of those things is so tough, to make yourself, you know, get up and go. Just getting up to go out for a walk was really hard for me, whereas walking is one of my, you know, I love to go out and walk.” [29-Distant hopes fuel the relentless struggle to carry on]
Because lack of energy was a problem, conserving energy for those activities that brought pleasure and joy was important . Whilst lack of energy was the dominant theme, hypomanic states in bi-polar disorder were associated with increased energy and enthusiasm but were often short-lived with a return to a usual depressed state .
Fear and anxiety
Two studies reported that ‘fear’ was a theme that was represented throughout their interview data [28, 30]. Fear, anxiety, or worry was present in some form in all of the studies. The subjective experiences of the symptoms were reported as being very frightening [26, 28, 31, 32, 35, 40]. This tended to be identified in the studies on schizophrenia, bi-polar disorder and panic disorder. As a consequence, individuals lived in fear of relapse or a return to hospital [26, 28, 30]. There were associated financial worries which had implications for planning for the future and making commitments [30, 34, 37].
Living day to day with a psychotic illness was described as a very frightening and isolating experience. The participants described their sense of fear while experiencing symptoms, watchfulness for reoccurrence of illness, concerns over safety, experiences of anxiety and rejection in interactions with others, avoidance of stressors, feelings that they were being treated as “fragile” by their families, and a sense of powerlessness in gaining control over symptoms [27-The experience of illness]
Anxiety in social situations was especially evident and took various forms including anxiety about leaving the house, crowds and public places , concerns for their own safety [26, 28, 36], and that of others , worrying about what others thought of them and how they appeared [26, 28, 30], worries and concerns within relationships  and fears of rejection . Worries concerning relapse or aggravation of symptoms and social anxiety often resulted in the avoidance of any activity or situation which might be perceived as stressful [26, 28, 30, 33] thus limiting the possibilities of improving other aspects of quality of life.
Avoiding situations they had previously enjoyed because of fear of how they would appear or that the stress associated with those situations would mean deterioration in mental health: “I’ve cut down on the sort of positions I get myself in… because of bad experiences in the past…. you just try less things with the fear that you’re going to get very ill again and go to hospital” [30-reduced control of behaviour and actions]
Within the studies reviewed there tended to be an emphasis on the absence of ill-being rather than the presence of well-being. However, the positive themes identified that were important to people included an overall sense of well-being [31, 33, 39], feeling healthy , peaceful, calm and relaxed [26, 30, 33, 39], stable [30, 35], safe [33, 39] and free from worry and demands [33, 39]. Enjoyment or happiness were not identifiable themes within the reviewed studies but were associated primarily with the need for activities to be enjoyable [31, 36, 39].
Physical health was not a strong theme within the reviewed studies. The compounding effects of physical health problems were indicated in two studies [26, 36] and physical health was listed as the second most important aspect of quality of life by participants in another . A healthy lifestyle was considered beneficial which included exercise, avoiding drugs and generally taking care of oneself [26, 28, 33].
Control, autonomy and choice
The importance of aspects of choice and control to quality of life was identified in eight studies [26, 28, 30, 31, 34, 35, 37, 39] and was a main theme in three of these [30, 34, 35]. It was often discussed in the context of the availability of external resources which enabled choice and control, including medication and treatment, support, information and finances.
One of the most evident aspects of control was the management of the most distressing or pervading aspects of mental illness, particularly for those with psychosis related disorders [26, 28, 31–35, 38, 39]. Control was usually described as being achieved through medication [26, 28, 33–35, 39]. Having control meant that individuals could move beyond ‘the all encompassing world of their illness’  and instead attend to other important areas of their lives [28, 31]. However, medication could also have a detrimental effect on quality of life through side effects, [26, 28, 30, 34] feelings of dependency, [34, 35] and fear of the consequences of not taking it . It was therefore necessary to find the right medication to balance symptom management and side effects [26, 28, 32, 33, 35, 39] as a means to a sense of well-being .
“I’m on good medication, no symptoms, no side effects. I used to go through all the side-effects and symptoms and I don’t have anything now. .before that, I never really felt human. .I’m human, I’m flesh, you know like that in my mind and, it’s just a good feeling. I can’t explain how I was, used to be but since I’ve been on this medication I feel like a human… I don’t have any side-effects or anything or any problems. .I just take my pills and go. Like I feel like a human being… it’s just great”; “I think for me, apparently the most important one is just managing the illness…different medications, side-effects, knowing what they are… for me there's been limited discomfort” [28-Experience of illness-gaining control]
The concept of control was particularly important for those with bipolar disorder, and was related to an inability to control or pre-empt the onset of mood episodes or their behaviour [35, 38] and to a need for stability .
Being informed and having an understanding and insight about the illness was considered to be important [26, 28, 32, 34, 39]. To achieve this it was important to have an accurate diagnosis [32, 33]. This meant that people could receive effective medication , knew what to expect for the future [28, 33, 39] and could develop strategies to manage their illness and deal with it better [28, 34]. This was regarded as a first step on the way to recovery  and improving quality of life .
There was a complex relationship between independence, dependence, and support. Both support [26, 28, 31, 33, 34, 37, 39, 40] and independence [32, 33, 37], particularly financial independence  were regarded as being important for quality of life. Support helped people manage their illness, access resources, and increase their self-confidence . However, it could also result in feelings of dependency [26, 37] with a resulting loss of a sense of control and self-esteem . Hence there could be a dilemma between wanting help and support and at the same time resenting it . On the other hand, choosing to be dependent could enhance power and control . Personal autonomy, finding the optimum balance between support and independence, was therefore important to quality of life [25, 33].
“I think that’s a big part of what I recognize now as quality of life is feeling I can take care of myself without being heavily dependent on a long-term basis on either the welfare system or my Dad, unless I’m choosing to do so for a specific reason” [33-Independence: ‘Or rather, not being independent, but not being dependent]
Personal strength, determination, and self-sufficiency were also regarded as important [26, 32, 33, 38]. It meant people were able to make use of available resources and develop self-help and personal coping strategies [26, 28, 32, 37] which in turn promoted independence and a sense of control [28, 32, 37].
The concept of choice was most associated with the availability of financial resources [26, 28, 30, 33, 34, 37] and with limited employment opportunities [26, 28, 30, 34, 38, 40]. Having sufficient financial resources meant people could more readily have a healthy lifestyle , engage in activities that promoted well-being [26, 28, 30, 33], facilitate the attainment of an optimum balance between dependency and independence [26, 37], have a choice in their surroundings [26, 28, 34] and be able to plan for the future .
“I’d have had more money if I’d stayed in the [job] … I’d have been able to board the animals and go on holiday. I would have been able to afford a bigger house maybe even have some help with some of my domestic tasks. yes. it’s limited my choices”…“Lack of control of your finances because what you get in benefits goes immediately what with all the things you have to pay out for. So you have to be very careful… That’s another sort of loss of control of part of your life which doesn’t make you feel very good about yourself” [30-Financial constraints on activities and plans]
Also of value was being able to choose whether or not to take part in things (particularly social activities), [28, 34] flexible work conditions,  when and with whom to disclose mental illness,  and choices associated with mental health services, workers and interventions .
A number of aspects of self associated with quality of life were identified: self-efficacy - having a belief and confidence in your own abilities; self-identity - having a perception of self and knowing who you are; self-esteem - having a sense of self-worth and self-respect; and self-stigma - internalizing the negative views of others. These were linked to a further theme of self-acceptance. These self concepts were closely associated and used interchangeably within the studies reviewed making them difficult to differentiate. Aspects of the self and self-perception were a major theme in three studies [28, 32, 35] and were present in some form within all of the other studies except one  which had an abstract analytical style and only had undertones suggesting low self- esteem/image.
Problems related to self-identity, having a sense of self and ‘knowing who you are’ appeared particularly to be related to bi-polar disorder, schizophrenia, and panic disorder. The studies described difficulties with having a coherent sense of self, identity, and personality [31, 32, 35, 37, 39].
‘when you end up in the hospital with a full-blown mania and you think that you’re a king and you’re screaming at the top of your lungs… trying to eat your hospital bed and, and… you don’t know how to deal with it or, or how to be. You don’t know how to become yourself again. You don’t know what happened to you. It’s like your identity has been changed. It’s like somebody hands you a different driver’s license and you’re like, ‘Well who is this person?’ [37-Identity]
This loss of a sense of self necessitated a re-negotiation  or reclaiming  of self, based on self-acceptance, self-knowledge and understanding, [31, 32, 37, 39] and relationships with reliable others . Spirituality also had a role in achieving a sense of self .
This concept was expressed in the reviewed studies primarily as a lack of self-confidence, but also as feelings of inadequacy, uselessness, failure, an inability to cope, and helplessness [26, 28, 30–33, 35, 37]. Mental health problems were associated with a lack of confidence [26, 31, 32, 35, 38]. This lack of confidence limited day to day functioning and activities , and access to helpful resources  and affected choice and opportunities in employment [26, 28, 38] and relationships [26, 28]. Bipolar disorder could be associated with an increase in self-confidence during manic episodes .
Self-esteem and self-acceptance
The theme of self- esteem includes the concepts of self-image, worth, value, and shame, and a view of the self as ‘defective’ [26, 28, 30, 35–37, 40]. It was primarily reported as a negative concept closely associated with loss of self-identity  and confidence . Occupational activity was considered particularly important for self-esteem and status [28, 36, 38], as was the satisfaction gained from helping others . However, the difficulties encountered in obtaining employment often resulted in a lowering of self-esteem [30, 40]. A closely related concept to self-esteem was the positive concept of self-acceptance, [28, 32, 37, 40] acceptance of the self as a person with an illness , or the belief that the illness did not represent everything that they were [28, 37].
The theme of ‘the self’ was closely related to the next theme of ‘belonging’, particularly through the concepts of ‘stigma’ and ‘feeling normal’ (see below). This inter-relationship is most evident in the concept of self-stigmatization, an internalisation of the negative views of others .
Individuals living with severe and persistent mental illnesses suffer from a form of stigma - self-stigma - perhaps the most powerful of all stigmas as it affects the inner sense of self in very profound ways . ‘I stigmatize myself. I just have a very low self-image. I'm kind of hard on myself for not conducting myself the way I should be…not being as productive as I could be. It's a reflection from general community's perceptions of what this illness is all about. […] [27-Sense of Self: Self doubt, criticism-a barrier]
The concept of belonging has been defined as the experience of integration and personal involvement in a system or environment at differing interpersonal levels. It can have two dimensions: ‘valued involvement’ - the experience of feeling valued, needed, accepted; and ‘fit’ - the person’s perception that his or her characteristics articulate with, or complement, the system or environment .
Of the primary research studies included in the review, one identified ‘connecting and belonging’ as being important to quality of life . Others identified closely related main themes: being part of a social context , rejection and isolation from the community , a need for acceptance by others , social support , relationships , barriers placed on relationships , labeling and attitudes from others , stigma [28, 30, 37, 40], alienation , detachment and isolation .
Relationships were clearly central to the concept of ‘belonging’. These relationships included close connections with family and friends and also more casual relations with the local community, in the workplace, with service providers or with society at large. The complex nature of relationships and the positive and/or negative effects on quality of life were evident in all the primary studies.
The provision of support was a particularly strong theme, being a major theme in three studies [33, 37, 39]. Both practical [26, 28, 32, 33, 37, 39] and emotional [26, 28, 32–34, 37, 39] care and support was identified as important to quality of life. This could be from family and friends [26, 28, 31, 33, 34, 37, 39, 40] or peers and work colleagues [28, 38, 39]. Also important was the support received from professionals [26, 28, 32, 33, 35, 39]. When families and professionals were unsupportive, quality of life declined [26, 28, 39].
“[.] if you have schizophrenia or you have mental illnesses a lot of support helps, helps you get back on track”; “The support that they give me means a lot to me. I wouldn't be where I am today without my family and my friends. They've supported me in every little way that they could… like my Mom will drive me to doctor's appointments… just having my family in [name] living around me… I know that if, if I can't get somewhere myself I can always rely on family members to take me” [28-Relationships with supportive family members]
Within the reviewed studies the most predominant benefits of good and reliable relationships were to feel accepted and understood [26, 28, 33–35, 37, 40], and having company, camaraderie and shared interests [28–31, 33, 34, 36]. Good relationships also satisfied the need for love, care, and affection [26, 28, 33, 34, 37], facilitated the experience of joy, fun, and happiness [29, 33], someone to talk to/share problems with [26, 28, 29, 33, 39], to feel needed/helpful to others [28, 30, 33, 39], to have people in whom one had trust and confidence [26, 33, 39] and who provided motivation and encouragement .
Connecting with others and achieving a sense of belonging emerged as key to quality of life: “You need friends to be happy…you need affection, you need to be loved by people, or else you would never get ahead in life. You will always be miserable and unhappy” [34-Connecting and Belonging]
Given the importance of others, their well-being was also important to the quality of life of the study participants .
Whilst relationships which satisfied the need to belong were important, difficulties forming and maintaining these relationships were evident [26, 28–30, 34–36, 40]. These difficulties included problems and tensions within supportive long term relationships [26, 28, 29, 35, 37].
“My Dad considers me a problem son. My mother thinking it's going to be a bit of a problem… you're not treated with the same kind of respect that you were before… you're not given the same kind of credibility…it's not, not quite the same. You don't feel a part anymore. You're separated… You're not even part of your family… you don't feel part of the community; I don't feel part of anything.” [28- Negative reactions from family members-a barrier]
Problems with relationships represented a complex multidirectional interaction between the person and society at varying interpersonal levels. This interaction involved the effect of the person’s illness when relating to others, other people’s subsequent reactions and attitudes to them, and the effect of those reactions and attitudes in further exacerbating symptoms of anxiety and depression and affecting the person’s perception of themself. Examples of the barriers experienced in connecting and relating to people included cognitive and thought disorders resulting in problems with concentration and attention [28, 30, 40] problems controlling behaviour [30, 35, 37] including acting out [30, 37], irritability, volatile or inappropriate behaviour , grandiosity or self-inflation , and feelings of anxiety when talking to or being around people, including problems with trust and paranoia [26, 28, 38].
Stigma can be defined as ‘any condition, attribute, trait or behaviour that symbolically identifies the bearer as culturally unacceptable or inferior’ . Stigmatisation was a major theme in four of the studies [28, 30, 37, 40] and evident in three others [26, 34, 35]. The experience and perception of negative reactions on the part of family, friends, service providers, employers, and society at large was shown to have a detrimental effect on quality of life. Individuals felt that they were perceived as lesser human beings who were discriminated against and treated accordingly  and that they were feared, avoided, or not accepted, which in turn led to feelings of rejection, marginalization, or being written off [28, 30, 35, 37, 40]. As a result, disclosure of mental illness was problematic and often avoided, and this had consequences for employment and close relationships [28, 34, 37]. Stigma had a detrimental effect on most aspects of life, including relationships [26, 28, 30, 37], employment and career [26, 28, 30, 37], going out and pursuing leisure activities [26, 30], obtaining services , and planning for the future . Stigma was considered to be more predominant in bipolar than unipolar depression .
A major barrier to achieving a sense of belonging was that informants were not perceived by others – and often did not perceive themselves – as “normal” . Whilst feeling normal was something they held in high regard, instead they were aware of being perceived differently and consequently treated differently . Feelings that they were different, and attempts to appear normal, do normal things, or be accepted as normal, formed a theme that permeated many of the studies reviewed [28, 30, 31, 34, 35, 40], being a major theme of three [28, 31, 34]. This is consistent with the dimension of ‘fit’ within the concept of ‘belonging’ - the person’s perception that his or her characteristics articulate with, or complement, the system or environment .
…most informants expressed a need to both feel and be perceived as normal. For example, Informant 2 remarked, “The thing is that I want to be a normal person and achieve something in my life,” and Informant 25 stated, “I’d like to be treated as equal in society.” Informants spoke about not feeling like other persons and implied that this set them apart. As Informant 16 stated, I don’t want to be mentally ill, I wanna be normal so I can study normally, go to school normally, get married, this and that. […]” [34-Connecting and belonging: being normal]
Feelings of isolation, loneliness, and particularly the concept of alienation can be regarded as the antithesis of a sense of belonging. Whilst highlighted as a main theme in one study only , these feelings were evident within the themes of relationships and stigmatization in all studies except one . The symptoms of mental illness, the barriers these caused in the formation of relationships, the stigma and consequential effects on the self, together with feelings of being different and not accepted, resulted in a pervasive sense of loneliness and isolation. People chose isolation, or avoided relationships, as a way of protecting themselves against rejection and dealing with the fears of how they appeared and what others thought of them [28, 30, 40]. The effects of being consistently treated as undesirable or different became internalised and further influenced their sense of self . Isolation was further compounded by the feelings that they were the only person suffering in this way . Hence, isolation was not just feeling as though they did not have any friends but became a painful feeling of despair that affected all aspects of life.
“I think one of the things about schizophrenia, I don't know whether it's schizophrenia or whether it's, it happens in other mental illnesses too, is this terrible, terrible kind of inner isolation feeling, like you're the only person…who is going through what you are going through and you, and you're completely alone […] it's just a terrible, painful sense of utter loneliness and isolation.” [28-The Tyranny of Psychosis-a barrier]
For quality of life, people wanted a reciprocal relationship with others [33, 37] which involved understanding and acceptance [26, 28, 33–35, 37, 40]. This could be achieved through ‘supportive own’, those who share their illness and experiences [28, 33, 34, 37, 39], or through belonging to a religious community . However, it was also possible to have a sense of belonging to a social network that was ultimately not beneficial to quality of life , and difficulties disentangling ‘real’ spiritual experience from hyper-religiosity when hypo/manic could make belonging to a religious community problematic .
By ‘doing’, a person achieves a sense of self, mastery, and successfully participates in the external world [21, 42]. The importance of activity in some form to quality of life was expressed in all of the studies except one (which examined panic disorder from a nursing perspective) . There was a difference in emphasis between studies: some focused specifically on the benefit of employment [30, 35, 38, 40] and others on activity or occupation in its broader sense, including both employment and leisure activity [26, 28, 31, 33, 34, 36, 39]. Whatever the type of activity, it was stressed that it should be meaningful or fulfilling [26, 28, 31, 33, 34, 36, 39], enjoyable, [31, 36, 39] and suited to need and capabilities [26, 31, 33].
The benefit of activity is that it can provide the means for many of the factors important to quality of life discussed above. It is through activity that the opportunity arises to interact with others and hence develop a sense of belonging . Activity can also improve mood [26, 28, 31, 33, 34], increase energy and/or motivation [28, 34, 39], relieve stress  and boredom [34, 36] and provide a distraction from problems [26, 33, 34]. It also helps self-esteem and self-confidence, engenders a positive self-identity, [26, 28, 30, 34, 36, 38, 40] and enables people to take control of their lives .
One further factor is how activity provides order, routine, and structure [30, 33, 34, 37, 39]. Routine and structure can be achieved through employment [30, 37], childcare [30, 37] or activity in general, be it work or leisure [33, 34, 37, 39]. However, one study highlighted how too much structure could be problematic and that what was important was flexibility and choice . Having a physiological routine - particularly regular sleep, meals, and exercise - was considered important for general well-being [37, 39].
Positive outcomes that could be derived from the strategy of using activity to structure and fill time included increased motivation, diversion from present problems, and avoidance of negative moods: [.] “The actual work, whatever it is, is good for the mind and soul… you forget yourself. You forget your own problems when you are working” [.] “In the morning I have to do something. Some job or something I should do. Otherwise, I become bored and then become depressed because I don’t have anything to do…. when I have nothing to do I become sad and unhappy and become very depressed, and I don’t know what to do. It is very difficult.” [34-Managing time].
Whilst activity was almost universally considered to be beneficial, taking part could be difficult if the activity was too demanding and not suited to needs [33, 38, 39]. The symptoms of mental illness could make difficult even the most rudimentary of activities, such as self-care, cooking and shopping, [26, 36] and taking up employment was especially problematic . Even potentially enjoyable leisure activities were avoided because of concern regarding other people’s reactions, [26, 30, 36] problems relating to people,  and the associated fear and stress resulting in a deterioration in health [26, 30]. Lack of money also put a restriction on enjoyable pastimes .
For those who were employed, interpersonal relationships at work were particularly affected due to social withdrawal and irritability, or interfering, inappropriate, or volatile behaviour during hypomania, although work productivity could increase during hypomania .
Hope and hopelessness
Integral to the concept of hope is having dreams, goals and a positive view of the future. The importance to quality of life of having dreams and goals or personal achievement was evident in six of the studies [28, 29, 31, 33, 34, 37], the importance of activity and/or life in general being fulfilling and having some meaning and purpose was also evident [28, 33, 34, 37, 40]. Both having dreams and goals and having meaning and purpose in life were necessary to instigate change, make plans, and to move forward. Again, the difficulty of achieving this was stressed [28, 31, 34]. Losses experienced in the past affected the view of the future with a perception of reduced opportunities and choices  and diminished hopes and dreams, [29, 31] particularly in the fields of employment [30, 38, 40] and relationships [29, 40]. Loss and the effect of past experiences was a theme in seven of the studies,[26, 28–31, 35, 38, 40] and a major theme in three of these [29, 31, 35]. These losses included the loss of life roles generally, and more specifically the loss of work and career opportunities, relationship and the parental role, skills and ability, time, financial losses, and, ultimately, the loss of a sense of self and identity. Losses which had occurred in the past were perceived as a burden  with a pervasive sense of ‘something missing’  which had long-lasting effects and made life a constant struggle [29, 35, 40]. Participants compared their own lives negatively with those of others [29, 35, 40], or with their own lives before illness struck [29, 31], and all this brought about feelings of failure, of being cheated, and a sense of unfairness [35, 38, 40].
Past losses, including the loss of meaning and purpose in life, a sense of helplessness and inability to cope, all brought about a sense of hopelessness, necessitating a renegotiation and a lowering of aspirations and priorities [28, 29, 31].
The concepts of ‘hope’ and ‘hopelessness’ permeated the review studies [29, 30, 35, 39, 40] and formed a major theme for two [29, 35]. Hopelessness was an expression of the view that life would never change for the better, and brought about a pervasive feeling of distress . Conversely, hope provided a catalyst for change and a better life .
"Well, my whole life feels problematic, I feel as if I'm not going anywhere… I know it sounds negative and I'm not really negative like this all the time, but you know, I find it hard, projecting myself into the future, and leading a happy life. I don't think my life is very happy at the moment, it's not very fulfilling. I haven't got any real struggles at the moment, but it could be better. I don't know if it's because of the illness or the sort of person I am…"; "I don't have hope that I'll ever have a nice boyfriend, I don't have any hope that I'll get married, I don't have any hope that I'll work a full week—week after week after week. I don't really have hope for stability…" [35- Bipolar Patients' View of Their Future]