Capturing the lived experience of depression

MEEFRO November 21, 2023

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Depression is one of the most common mental health disorders worldwide and is also one of the leading causes of disability. For decades, researchers have focused on developing our understanding of what depression is in order to identify how it can be best treated. This has subsequently informed the diagnostic criteria through which people’s experiences are assessed and categorised.

But such research has tended to take a “top-down” approach, meaning that our understanding has often started with the development of theories by academics. This is problematic, as it has the potential to obscure the subjective experience of people living with the phenomenon under examination.

The current blog summarises a paper by Fusar-Poli and colleagues (2023) which is the result of a novel attempt to produce a review of the qualitative literature on clinical depression which is “bottom-up” (grounded in the data of lived experience) and collaborative. As such, people with lived experience have been included as co-researchers and authors, and the focus of the review is qualitative studies which explore the experiences of people living with depression.

Most research investigating depression is ‘top-down’ and based on existing theories; but what about research that is ‘bottom-up’, using subjective lived experience perspectives to develop theories?

Methods

The authors searched 3 databases to identify qualitative studies focusing on first-person experiences, beliefs, and narratives on unipolar clinical depression. The paper’s intention was to “give the word” to those living with depression and only then consider theoretical implications; the authors therefore did not seek to test the methods or theories of the papers they reviewed. To supplement first person narratives drawn from research, the authors incorporated complementary sources written by people with lived experience of depression (e.g., The Bell Jar by Sylvia Plath).

Analysis was conducted in three phases:

All identified titles and abstracts were screened by two researchers against the inclusion/exclusion criteria.
The study team undertook thematic synthesis, which involved line-by-line coding and identifying themes across the studies.
The team shared and developed their themes and subthemes in virtual collaborative workshops. These workshops had a global reach, involving peer experts form four continents and 11 countries, including those in the middle- and lower-income brackets.

Results

The results section focuses on three broad themes, each with individual overarching themes and subthemes. The paper’s exploration of these themes draws on and directly quotes first-person narratives which expand upon, develop, and sometimes challenge diagnostic criteria and expert explanations written for patient audiences.

Theme 1: The subjective world of depression (3 themes, 14 subthemes)

Low mood in this review is conceptualised as “feeling overwhelmed by negative emotions”, including anhedonia (loss of interest or pleasure), cognitive impairment (inability to think or concentrate), loss of a sense of personal power or agency, and feeling painfully incarcerated; accounts speak vividly of being confined in a “hole”, “fog” or “glass bell jar”, associated with a struggle to communicate and sense of isolation.

While low mood and sadness are traditionally considered the key marker for major depression, little attention is given in diagnostic criteria to somatic experiences commonly reported by people with lived experience of the condition. This paper highlights aspects of bodily sensation summarised as “feeling stuck in a heavy aching body drained of energy”.

Suicidality is of course another key marker of severe depression but rather than describing this in clinical terms, the review highlights that depressed people “dream” of death as “a possible escape route”. The impact of depression on time is an interesting finding, with accounts focussing not just on clinically recognised disruption to biorhythms such as insomnia or hypersomnia but describing being consumed by guilt about the past and facing a world devoid of future promise.

Theme 2: The experience of depression in the social and cultural context (2 subthemes, 6 themes)

This theme explores in some depth how social and cultural context influences the experience of depression, examining the impact of race, ethnicity, and gender by drawing on studies from a variety of nations and cultures. A key finding is an acute difficulty in communicating with others in one’s own society, leading to feelings of alienation and isolation which are often expressed in the data in terms of powerful metaphors. A subtheme of stigma also emerges, with some research participants internalising perceived social stigma, and others hiding their suffering to avoid judgement or struggling in the face of stereotypes and/or lack of understanding of their condition.

Theme 3: The lived experience of recovering from depression (4 themes, 10 subthemes)

The authors go on to explore experiences of recovery and treatment. A key finding is that the meaning of the term “recovery” is highly subjective, ranging from the mere remission of active symptoms or regain of functioning to a “return to who I was” and even a “profound existential maturation”. Some patients spoke of the process as one of “discovery”, rather than recovery.

While some research participants rejected professional intervention, most saw the support of a mental health professional as an essential safety net, and feelings about both pharmacological treatment and psychotherapy were broadly positive. Antidepressants were seen as necessary, or at least helpful, despite fears of dependence. Psychotherapy was generally conceptualised as a safe, liberating space which generated feelings of relief, but some sufferers of depression were reluctant to start the therapeutic process for fear of exposure or a challenge to their beliefs and sense of self.

A vivid sense of living with depression emerges from the current paper, depicting the experience of living in a pit or a fog in a world where time has stopped.

Conclusions

The authors identified some common themes in the lived experience of depression, indicating that it is more than a collection of symptoms and represents an existential change or “altered unitary experience”. This experience is, however, highly variable across cultures, minority/majority ethnic and racial groups, and gender.

The body looms large in first-person narratives, and the authors therefore argue that as the lived experience depression cuts across any distinction between the mind and the body, it is unhelpful to view the two as separate or distinct. There is also considerable variability and notable ambivalence in attitudes towards recovery and treatments for depression.

Despite variability, the authors identified common themes across the lived experience of depression, highlighting that it is more than just a collection of symptoms and represents something more.

Strengths and limitations

This paper represents a significant contribution to our understanding of the experience of clinical depression due to its commitment to centring the voices of those with lived experience. It is therefore unfortunate that a lot of methodological information is missing from this paper, making it hard to understand how the study was conducted, where the results come from, how systematic the research was, and the scale of the pool of evidence. Omissions include:

The number of studies identified through database searches.
The total number of studies included in the thematic synthesis.
The total number of participants incorporated into the review.
Sample characteristics and where/how the participants were recruited.
The quality of the included studies.

This paper is co-written by academics and people with lived experience of depression and the authors explicitly intend the work to be useful to patients and clinicians. It is therefore slightly disappointing that more effort has not been made to make the text accessible to the lay reader. For example, it would have been helpful for the authors to provide brief definitions of academic terms such as “psychopathological” or “phenomenology”.

However, the multinational, multidisciplinary nature of this review is a key strength. The core review team incorporated experts by experience and academic psychiatrists, psychologists, philosophers, and researchers, thus drawing on a plethora of perspectives and knowledge. The lived experience component involved a broad range of genders, age groups and ethnicities, and utilising virtual workshops as part of the analytic process facilitated the involvement of experts by experience from around the globe, including lower- and middle-income countries whose interests are often badly served by research arising in the global north. It would have been interesting, however, to hear about the gender, ethnic, age and nationality of the academics involved in the review along with some consideration of the fact that lived experience experts are not the only group whose insights are influenced by their identities. Researcher reflexivity with some consideration of these issues would have been a good addition to this piece.

Whilst the findings from this study are strengthened by a multinational, multidisciplinary approach, the reliability is undermined by a lack of rigour in the reporting of the methodology.

Implications for practice

Several useful points for clinicians emerge from this paper. The first-hand experiences compiled here reveal some common experiences among people living with depression which are not reflected in diagnostic criteria or checklists for lay people. While sleep, weight and appetite disturbances are noted in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders as indicative of depression, this paper suggests that the somatic nature of the depressive experience is more pronounced than this. Experiences such as aches and pains, a sense of heaviness, and a body that lacks physical energy may be important markers of depression, and it is therefore unhelpful to view the mind and body as separate. The importance of fatigue has also been stressed by adolescents experiencing depression (read Georgia’s Mental Elf blog to learn more).

An important caveat however is that despite these commonalities, the experience of depression can vary widely according to culture, gender and membership of majority or minority ethnic group. Clinicians would do well to ensure that when they look for evidence of depression, they consider that its appearance might not always display the “classic” signs expected in white patients from the Global North, and that sufferers might not conceptualise depression as an illness which will benefit from medical intervention. As Shuichi Suetani and Jon Paul Teo discuss in their Mental Elf blog on understanding the epidemiology and experience of psychosis, much of what we think we know about mental health conditions comes from thinking and data that is limited to the Global North. Clinicians might enhance their practice around diagnosis in diverse populations by bearing a wider range of depression experiences in mind.

Practitioners can take heart from this paper, as it provides evidence that people suffering from depression do appreciate the support of mental health professionals in the recovery process, yet it also highlights the diversity of understanding of what recovery entails. This suggests that clinicians would do well to explore with depressed patients what their conceptualisation of recovery entails, shifting to a personalised definition of the term which can inform shared work, rather than aiming for simple remission of symptoms or restored occupational functionality.

As a researcher investigating lived experience and someone who has survived countless bipolar depressions, I appreciate this paper both for its sterling efforts at centring the real-life experience of depression and for its recognition of symptoms which are very familiar to me but rarely mentioned by professionals. I hope that practitioners will read this paper in its entirety with a sense of openness to new insights.

This paper highlights important implications for clinicians in treating depression, including developing definitions of ‘recovery’ in collaboration with patients, and taking note of the somatic element of depression.