How patients understand depression associated with chronic physical disease – a systematic review

Search strategy

The review protocol can be requested from the study authors. We sought English-language studies of adults with current depressive symptoms that reported beliefs about depression. We systematically searched for articles and included studies of beliefs associated with chronic physical illness in stage 1 and then systematically searched for studies that included all depression beliefs in stage 2. Searches were limited to primary care where that was possible using the database search terms. We excluded non-English language studies and studies that assessed subjects without current depression or, explored beliefs about other mental health disorders (including anxiety, post-natal depression or bipolar disorder). Figure1 detail our search methods [17]. Appendix 1 details the search terms applied. We (SA) also reviewed reference lists of all included studies.

Initial screening of titles and abstracts, with exclusion of those that were obviously not related to depression beliefs, was undertaken by one reviewer (SA) with 18% (913) of studies reviewed by a second reviewer (KM). Full-text articles were assessed in detail by two reviewers (SA and KM) for all potentially eligible studies. All disagreements between reviewers were resolved by discussion.

Data extraction and quality assessment

Data on study participants, methods and findings were abstracted from included studies using a standardised form specifically developed for this review. The findings of qualitative studies were entered verbatim into NVivo8, a qualitative data analysis software package. We assessed study quality using established criteria [18]. Authors were contacted for further information as required.

Data synthesis

We conducted a narrative synthesis [19]. This approach to the synthesis of evidence relies primarily on the use of words and text to summarise and explain the findings of multiple studies. It is especially suited to a study like ours in which there is wide variation in study type included. Stage one involved a thematic and content analysis of the qualitative data. We initially categorised beliefs about depression using Leventhal’s Illness Representations [20], a framework for characterising patients’ beliefs about illnesses [21–23].

The illness representation includes five main categories of belief: identity (beliefs concerning label and associated symptoms), cause (factors and conditions believed to have caused a condition), timeline (acute, cyclical or chronic), consequences (expected effects on physical, social and psychological well-being) and the control and/or cure (to what extent treatment and behaviours will help), along with a parallel emotional representation. We also identified beliefs not adequately captured by the framework and developed new themes which were agreed by consensus. The coding of themes was checked for 10% of studies by a second researcher.

Reviews of the quantitative findings were mapped onto the framework derived from the qualitative literature. For example, the finding that 68% of participants in one study felt that having depression changed the way they viewed themselves [24] supported the theme of existential & self.

In stage two we assessed the robustness of the synthesis by appraising the contribution of weak studies to review findings. Quality was assessed using criteria appropriate to study design [18]. Studies were assigned a score and topics based upon weak studies only were not included in the final analysis.

The final stage involved integrating the findings from the preceding stages into overarching conclusions.

Identity

Depression, depressed and depressive were the most commonly used labels by both authors and study participants. Other labels used by participants were stress, blues, nerves, sadness, loneliness and emotional or mental disorder.

Some participants said they would rather not know they had depression, whereas others believed the label meant treatment was possible and they were not ‘mad’. Some felt depression or its symptoms were a normal part of life and not a disease and that the word ‘depression’ is used in everyday language without meaning an illness.

“It never occurred to me that I could be depressed, I just thought that I was a nasty person.” [64]

“Did I know what it was? It was pain, but I don’t think I would have called it depression. I think I would have called it my pain.” [60]

Cause

Most study participants could name at least one cause for their depression and many had complex, multi-factorial causes. Most participants believed the causes were external and took the form of significant negative life events and stress rather than subscribing to a mainly biological model. Co-existing physical illnesses were mentioned by several participants. Where the biological model was mentioned it was either to disagree with it or to mention it alongside other causal beliefs.

“I have diabetes and other people with diabetes have experience with depression because of our treatment, and the things we have to do, and the way we have to live now [which is] different from the way we were used to doing things before.” [59]

“I think it [depression] is due to a lack of hormones, that is, a consequence of being exposed to stress over such a long period of time.” [44]

Cure and/or control

Study participants found it difficult to acknowledge the need for help; however, many believed the GP was the right person to approach. Participants had strong beliefs over whether medication or talking therapies would help them. Some mentioned beliefs about alternative therapies such as St. John’s wort or using prayer, often used alone if the depression was not seen as having a severe impact upon their life. A few participants were unable to identify any cure or control and some felt that depression is incurable.

“When I talk about my problems I think about them and I feel worse. So I don’t know if it really is better to talk about them because you remember all your problems. Sometimes I feel better when I am doing other things and not talking about it to anyone.” [58]

“Well I think it’s a waste of time really, he’ll just give me yet another pill and I shall still be depressed because of all the other things that are wrong with me.” [43]

Timeline

The timescales participants mentioned for onset, duration and response to treatment were reported as varying markedly with acute, cyclical and chronic timescales being mentioned. The onset was described as “a bolt out of the blue” or “slow and insidious”. Treatment response was seen as a short or long process.

“I am so afraid that I am going to remain depressed. That is the only thing I fear.” [79]

“Well, if it’s only something that’s going to be short term, then obviously it’s worth getting the help and then sort your problems out and see how things go after that, more or less.” [69]

Consequences

Depression was seen as having mostly negative consequences, affecting all present and future aspects of life, including work, social and home life and physical health, especially where there was a co-existing illness. Some held particular fears of losing control and embarrassing themselves.

“So you’ll be dying of sadness, you get that sadness because the doctors say that if you stay really sad you begin to get other types of diseases like those that come from anguish, sadness, from depression you go on getting other types of disease and you end up dying too. Besides depression, it sets off other systems within your organism and ends up killing you.” [88]

“I was already on a pedestal, being the first doctor ever in the family, and my mom and dad didn’t want this to take me down from that pedestal in the other family’s eyes.” [54]

Emotions

We could not distinguish an emotional representation for depression from emotional symptoms of depression. Participants associated depression emotionally with fear, anger, sadness, despair, and guilt.

“Anxiety, anger, confusion, frustration for me is associated with the depression. Not sadness so much.” [59]

“I’m afraid…of being an invalid…not doing the things I want to do.” [32]

Understandability

Participants’ beliefs about depression were not always internally consistent. Some understood their depression in terms of their life story and gave coherent beliefs. Thereby, a woman who believed the cause of her depression was her poor eyesight that stopped her from doing things believed the cure for this was to “get her eyes sorted” [35]. For others depression was “unexplained” and “not understood” which led to conflicting and less fixed beliefs. For example, one study reported of people with depression “Their explanations changed within their narratives and they tried out several explanations, not finding one that explained all of their experience” [55], leading to uncertainty about how to resolve problems.

"Sometimes the account of depression contained several narrative episodes based on more than one storyline.[55]

Depression cycle

Depression was sometimes seen as a spiraling process, with episodes being both a consequence of previous depression and a cause of new onset of depression. These data could not be coded to the cause construct or the cyclical timeframe construct as one episode of depression was believed to be the cause of a subsequent episode of depression itself. Being depressed caused individuals to become more isolated and lonely, and made the sufferer further depressed. Having depression left the person with an internal weakness and predisposed to future depression, a cycle from which it was hard to break out. There are few other diseases where the disease itself can be seen in this way, and in this respect, this depression belief is unique.

“Anxieties cause depression and depression causes self-depreciation.” [59]

Existential and self

This theme concerned the individual’s sense of identity and differs from the identity of the disease theme. For some participants, even more than in physical diseases, depression is deeply interwoven in everyday life, in an existential understanding of the self and in a person’s sense of social and individual identity. It defined the person as who they were in their entirety, not as a consequence of depression but more of a statement of their individuality. Having depression changed the way they viewed themselves and their personality. Depression gave them a new identity, and they joined a category of person in which they had not previously seen themselves. For many this was a distressing and unwelcome experience. On questioning, many participants strongly agreed that having depression affected the way they saw themselves as a person [24, 34].

“You know, I was a mental patient. That was my identity…depression is very private…It’s no longer just my own pain. I am a mental patient. I am a depressive. I am a depressive [said slowly and with intensity]. This is my identity. I can’t separate myself from that. When people know me they’ll have to know about my psychiatric history, because that’s who I am.” [60]

“And when I came out I did feel quite odd because she gave me a prescription. I couldn’t. I suddenly felt like I fell into a bracket of a type of people, emotionally in my head. Which is quite a strange feeling really because . . . I’m not like I thought I was and now I’m a bit different” [48]."

Suicidal thinking

Suicide was rarely mentioned but when it was, it had an ambiguous status and did not fit within an obvious theme and was often a gender specific belief. Suicidal thinking was seen as symptom of depression, something people would never suffer with when well. For others, suicide was a consequence; the depression was so severe that suicide was an understandable response to suffering. It could also be seen as a control mechanism – a means of getting relief from their distress, and the most acceptable way of dealing with a problem. Suicide required a lot of self control and counteracted the image of being weak for having depression, particularly amongst males [54].

“In the beginning, you may not know what’s happening to you… if it gets worse and you don’t get help, people eventually hurt themselves with drugs or they can take their own life.” [83]

“Men who kill themselves are doing what maybe a lot of men have been taught to do. Literally they are taking their lives in their own hands because that’s what guys are taught to do. You know, to take care of it, and they take care of it in a way that is absolutely what they believe to be the right thing to do.” [54]

Stigma, blame and responsibility

Participants feared the outcome of others knowing about their condition. Depression was seen as poorly understood by the public, and misrepresented in the media, so that sufferers were to blame or responsible for their depression. This idea of blameworthiness was different from the situation when external factors were clearly contributing. For example, a severe economic depression in Finland was seen as being responsible for the increase in depression and was socially acceptable [55]. Participants were ashamed of being seen as not been able to cope – the stigma beliefs they had attached to people suffering from depression – and were now a part of themselves. Perceived stigma in itself had consequences, such as their judgment would no longer be trusted whilst they suffered from depression, leading to employment problems and the loss of friendships.

“When you have an operation you have friends who you can talk to. Last year, I had an accident and I received 45 get-well cards, but you go down with depression and nobody knocks on your door.” [70]

“The reason why it was hard to get psychiatric help was because of pride. I didn’t want people to think, “How did he end up this bad?” I just don’t want to be one of those crazy people, and it’s basically admitting that I am not in charge of my own emotions.” [76]

Summary of main findings

Our most striking finding is the wide range of beliefs held by people experiencing symptoms when they are questioned, and importantly, although we started with a framework based upon how people think about illness, not all the beliefs we identified could be fitted into this structure. These themes have not been actively looked for in previous literature and therefore the number of studies contributing to each theme is small. They could not be fitted into the illness representations framework without losing some of the most interesting and potentially clinically significant beliefs about depression.

Our new themes support ideas from the health psychology literature. Sense of Coherence is said to assist individual coping with illness by facilitating understanding of the challenge of illness and by allowing the individual to integrate the illness experience with a sense of personal meaningfulness [89]. It is therefore closely related to our themes of understandability and existential and self. Sense of Coherence has been associated with good health and especially with good mental health [90].

There was no evidence that the selection criteria and depression status of the participants influenced beliefs. For example beliefs about whether depression symptoms are a normal part of life were endorsed in studies including participants who were recruited following self-diagnosis of depression, a diagnosis in the medical records and those identified by screening or diagnostic interview. This suggests that beliefs about depression can be similar, regardless of whether a person is formally diagnosed.

Comparison with existing literature

We identified a greater diversity of beliefs than in previous review of the beliefs of people with current depression [16], perhaps because we actively looked for beliefs outside the framework of illness representations. That study also had a wider focus, including beliefs of the general public and those suffering from other problems such as anxiety [16].

Strengths and limitations of the study

Our review strengths include the comprehensive search strategy, the development of themes from methodologically robust studies, the systematic approach to synthesis and the integration of both qualitative and quantitative data. We used one increasingly common approach to integrating mixed data although others exist [19]. The sensitive search strategy employed meant that many non-relevant articles were found in the searches; however this has hopefully ensured that no relevant articles were missed.

Stage 1 identified only two studies with beliefs associated with a chronic physical illness [32, 79]. So in stage 2 we included all depression beliefs. Beliefs associated with a physical illness may differ from those which are not, but the difference is likely to be on emphasis rather than in specific content. For example, symptoms of illness or its treatment may be seen as a cause of depression; or physical symptoms and depression may interact so that the consequences of their co-existence are felt more severely. Cause and consequence are existing themes in our framework, here given new content but not displaced by a new theme. Limiting the scope of this review to primary care may have meant that potentially relevant studies were missed but increased the relevance of this review to the current management of depression in primary care, such as case-finding for at-risk people. In the absence of established methodological consensus on whether or not to include quotations from original studies in a review of this type, we opted for inclusion to enhance illustration of the themes [91].

Implications for further research and clinical practice

These considerations are important when there is a financial reward for administering a screening test without clear evidence of benefit, and when patients do not undergo an informed consent process which includes the risks and benefits of testing prior to the test being administered.

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