Experience of antidepressant use and discontinuation: A qualitative synthesis of the evidence

Accessible Summary

What is known on the subject?

• Rates of antidepressant prescribing have been increasing.

• Antidepressants are not effective for many people.

What the paper adds to existing knowledge?

• Participants described how in order to receive help they had to engage with a medical pathway in which their experiences were constructed as arising from a biochemical deficit.

• Antidepressant prescribing was identified as being the only option available and was associated with stigma.

What are the implications for practice?

• Mental health nurses have a role to play in providing treatment options for those experiencing depression.

• Mental health nurses need to provide evidence‐based information about antidepressants support those experiencing depression to make informed choices.

Abstract

Introduction

There are increased prescribing rates of antidepressants associated with an increase in the diagnosis of depression. However, antidepressants are not effective for many people. There is a gap in the existing literature for a synthesis of the experiences of those with lived experience of antidepressant use to better understand their use and impact given their ubiquitous use in mental health, primary care and other secondary and tertiary care settings. Mental health nurses play direct or indirect roles in both advocating for antidepressant use and monitoring adherence.

Aims

To identify how people prescribed antidepressants describe their experiences of the medication including its discontinuation?

Method

A meta‐synthesis of qualitative studies examining patients' experiences of antidepressant medication. Ovid MEDLINE, EMBASE, PsychINFO and Cochrane Library databases were searched in May 2021. One reviewer screened titles and abstracts. Two reviewers independently reviewed the retrieved papers for eligibility and data extraction. The data synthesis was conducted using thematic analysis. Two reviewers independently conducted quality appraisals.

Results

Twenty‐seven studies with a total of 2937 participants were identified for inclusion in this review. Four themes were identified across the studies: the only option available; stigma associated with ‘biochemical deficit’ not myself and the vicious cycle.

Implications for practice

Those seeking treatment for depression need to be provided with treatment options and evidence‐based information about anti‐depressants to provide them with the opportunity to make informed choices.

1. BACKGROUND

The World Health Organization (WHO) has estimated that 3.8% of the global population experience depression and recommend psychological treatments and/or antidepressant medication (World Health Organisation, 2021). Rates of antidepressant prescribing have been increasing around the world. In the United States 13.2% of adults aged 18 years and over had used antidepressant medications in the previous 30 days during 2015–2018 (Brody & Gu, 2020). In the United Kingdom, 17% of the adult population were prescribed antidepressants in 2017–2018 with about half of these receiving long‐term antidepressant prescriptions (GOV.UK, 2020). Women and older people have the highest rates of antidepressant consumption (Brody & Gu, 2020). Despite these prescribing rates, depression continues to be increasingly prevalent and treatment of depression to full symptomatic and functional recovery remains challenging (Oluboka et al., 2018). This increase in prevalence has been identified as between 9% and 18.4% (Australian Bureau of Statistics, 2020; World Health Organisation, 2017). In a context where diagnosis of depression as a mental disorder and prescriptions for antidepressants continue to rise, it is important to understand the experiences of those who for whom antidepressants are prescribed. There is a gap in the existing literature for a synthesis of the experiences of those with lived experience of antidepressant use to better understand their use and impact given their ubiquitous use in mental health, primary care and other secondary and tertiary care settings.

The history of medication as a treatment for depression goes back to the 1950s which saw the clinical introduction of the first two specifically antidepressant drugs: iproniazid, a monoamine‐oxidase inhibitor that had been used in the treatment of tuberculosis, and imipramine, the first drug in the tricyclic antidepressant family (Lopez‐Munoz & Alamo, 2009). There were significant safety and toxicity issues associated with these drugs alongside the more common side effect of sedation (Lieberman, 2003). Fuelled by the monoamine hypothesis selective serotonin reuptake inhibitors were promoted in the 1980s as having improved safety and tolerability. The monoamine hypothesis proposes that people with depression have depleted concentrations of serotonin, norepinephrine and dopamine, however, more recent research suggests that depression is unlikely to have a single cause such as this (Harrington, 2019) and is better described in vulnerability‐stress models.

Despite the high rates of prescribing the evidence of the efficacy of antidepressants is tenuous even though clinical guidelines (Kennedy et al., 2016; Malhi et al., 2021; National Institute for Health and Care Excellence, 2018) recommend their use for moderate to severe depression. Less than half of clinical trials found antidepressants superior to placebo (Khan & Brown, 2015) and with correctly blinded studies there was no evidence of superiority of antidepressant over placebo (Moncrieff & Kirsch, 2005). In addition to limited efficacy, there is also emerging evidence that selective serotonin reuptake inhibitors and serotonin and norepinephrine reuptake inhibitors are associated with high rates of adverse effects in the personal and interpersonal domains and high rates of withdrawal effects (Timimi et al., 2018).

Whilst most antidepressants are prescribed by general practitioners or psychiatrists, nurses also play direct or indirect roles. Nurse practitioners and designated registered nurse prescribers can directly prescribe antidepressants (Ministry of Health, 2016) and mental health nurses often play a role in promoting medication adherence (Coombs et al., 2003). It has been reported that mental health nurses believe seeing a GP, psychiatrist or clinical psychologist, and taking antidepressants were the most effective interventions in the treatment of depression (Caldwell & Jorm, 2000).

Given the high rates of depression seen in primary care and mental health services, the high rates of prescribing despite limited evidence of efficacy, and the emerging evidence of the difficulties associated with stopping antidepressants this review was designed to examine the experiences of those for whom antidepressants had been prescribed.

2. THE REVIEW

2.1. Aim

To identify how people prescribed antidepressants describe their experiences of the medication including its discontinuation.

2.2. Design

A meta‐synthesis of qualitative studies based on Cochrane recommendations (Noyes et al., 2020) examining patients' experiences of antidepressant medication was conducted. Registered with PROSPERO #257513.

2.3. Search methods

The search strategy was developed in conjunction with a medical librarian with experience in systematic reviews. We searched Ovid MEDLINE, EMBASE, PsychINFO and Cochrane Library in May 2021. The databases were searched using the following terms that were based on eligibility criteria:

1. Antidepressants OR SSRIs AND

2. (qualitative research/or qualitative methods/OR qualitative measures OR qualitative.tw).

Manual searching was conducted using reference lists in papers identified by the initial search.

• Search outcome

• Eligibility criteria.

Studies were screened based on the following inclusion criteria:

1. description of experiences of antidepressant use;

2. adult;

3. qualitative method;

4. peer‐reviewed publication;

5. published in English.

6. 1987‐ May 2021.

Exclusion criteria were:

1. studies that included children or adolescents (under 18 years of age) or exclusively older people (over 65 years) as comorbidities are more prevalent and associated with depression;

2. mixed method studies where qualitative findings were not reported separately.

3. pregnancy and post‐partum.

4. systematic reviews, books, commentaries, conference abstracts or dissertations.

Two researchers (MC and MI) screened the abstracts identified in the electronic search and read the papers retrieved following screening. Each researcher them independently evaluated each retrieved paper in terms of the eligibility criteria and made a decision regarding eligibility.

2.4. Quality appraisal

Once consensus on eligibility was achieved the Critical Appraisal Skills Programme qualitative checklist was used to appraise the quality of individual studies (Critical Appraisal Skills Programme [CASP], 2014).

2.5. Data abstraction

Data were extracted from the included studies by MC. These data were displayed in tables according to country where study conducted, sample size, gender, qualitative method, aims and findings.

2.6. Qualitative synthesis

The data synthesis was conducted using a thematic synthesis approach (Thomas & Harden, 2007). This involved identifying key concepts from the published studies, but then ‘going beyond’ the studies to identify similarities and offer novel interpretations not found in any single study. Thematic synthesis uses the well‐established qualitative research technique of thematic analysis to inductively identify themes and abstract across published qualitative studies.

3. RESULTS

3.1. Study selection

The search identified 236 papers of which 188 were screened and 48 sought for retrieval (see Figure 1). Twenty‐seven studies were identified for inclusion in this review with a total of 2937 participants (59% coming from one study n = 1747). See Figure 1.

FIGURE 1.

PRISMA 2020 flow diagram for new systematic reviews

3.2. Quality appraisal

The CASP evaluation identified that all included studies had a clear statement of aims, used an appropriate qualitative method, were appropriately designed, with clear recruitment strategies, data collection and analysis processed, clear statement of findings and provided value. Many of the included studies did not have a clear statement of the relationship between researcher and participant and some were unclear about ethical procedures (see Table 1).

TABLE 1.

CASP evaluation

	1	2	3	4	5	6	7	8	9	10
All‐Party Parliamentary Group for Prescribed Drug Withdrawal 2018	Y?	?	?	?	Y	N	N	?	Y	Y
Anderson et al., 2015	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Bayliss & Holttum, 2015	Y	Y	Y	Y	Y	Y	Y	Y?	Y	Y
Bosman et al., 2016	Y	Y	Y	Y	Y	?	Y	?	Y	Y
Brijnath & Antoniades, 2017	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Cartwright et al., 2018	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Eveleigh et al., 2019	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Fullager, 2009	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Garfield et al., 2003	Y	Y	Y	Y	Y	N	N No ethical approval	Y	Y	Y
Gibson et al., 2016	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Guy et al., 2020	Y	Y	Y	Y	Y	Y	N No ethical approval	Y	Y	Y
Ho et al., 2017	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Huijbers et al., 2020	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Jaffray et al., 2014	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Karp, 1993	Y	Y	Y	Y	Y	N	N	?	Y	?
Knudsen et al., 2002	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Knudsen et al., 2003	Y	Y	y	Y	Y	Y	Y	Y	Y	Y
Lafrance & Stoppard, 2006	Y	Y	Y	Y	Y	N	N no ethical approval	Y	y	Y
Leydon et al., 2007	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
McMullen & Herman, 2009	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Price et al., 2009	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Ridge et al., 2015	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Schofield et al., 2011	Y	Y	Y	Y	Y	N	Y	?	Y	Y
van Geffen et al., 2011	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Vargas et al., 2015	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Verbeek‐Heida & Mathot, 2006	Y	Y	Y	Y	Y	N	N no ethical approval	y	y	y
Wills et al., 2020	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y

Note: Y, N,? = cannot tell.

3.3. Characteristics of included studies

There were 2079 female participants (70%) with one study not providing a gender breakdown (Ridge et al., 2015). The studies were conducted in United Kingdom (n = 9), Netherlands (n = 5) New Zeeland (n = 3), USA (n = 3), Australia (n = 2) Denmark (n = 2) Canada (n = 1), Malaysia (n = 1) and Australia and United Kingdom (n = 1). The methodologies used were described as thematic analysis (n = 11) grounded theory (n = 5) constant comparative (n = 3) framework (n = 2) discourse analysis (n = 2), descriptive (n = 2) and one each of iterative and narrative (see Table 2).

TABLE 2.

Data extraction

Author	Sample	Gender	Method	Aim	Findings
(Anderson et al., 2015) UK and Australia	108	70 F	Thematic analysis	To explore experience of starting antidepressants (SSRIs)	Experience shaped by stigma and stereotypes Worry about expectations and reality Worry about adverse effects Implications for sense of self
(Bayliss & Holttum, 2015) UK	12	5 F	Grounded theory	To explore experiences of antidepressants	Surviving a crisis Caught in a drug loop Passivity Nobody listening Underlying cause not addressed Fragility Dilemma about dependency
(Bosman et al., 2016) Netherlands	38	28 F	Constant comparative	To examine motivations of patients regarding long‐term antidepressant use	Importance of supportive guidance Discrepancies over perceived needs Whose responsibility to initiate discontinuation?
(Brijnath & Antoniades, 2017) Australia	58	35 F	Thematic analysis	The meaning and experience of antidepressant use from the patient perspective	The game of adherence Breaking the magic circle (side effects) New game, new balance Creating a magic circle – decide how to use
(Davies et al., 2018) UK	186	101 F	Thematic analysis	The impact of withdrawal and support received	Withdrawal as incapacitating Disillusionment with medical professionals Impact of withdrawal on relationships (strained) Impact of withdrawal on work (Challenging) Protracted and unbearable Feelings of helplessness
(Cartwright et al., 2018) New Zealand	50	50 F	Thematic analysis	To understand how experiences of using antidepressants promote or diminish women's sense of agency in regard to their recovery from depression	Alleviate symptoms Gave me a lift and I did the work Importance of my own efforts It did not work/side effects Fear of relapse/ withdrawal symptoms Biomedical model reinforces own abnormality and need for medication
(Eveleigh et al., 2019) Netherlands	16	11 F	Iterative	To explore barriers and facilitators for stopping long‐term antidepressant use	Counter to serotonin deficiency Fear of recurrence, relapse or disruption to equilibrium) Advice at first prescription Ambivalence
(Fullager, 2009) Australia	80	80 F	Thematic analysis	To examine the discourses that shape women's experiences of antidepressant medication	The neurochemically deficient self
(Garfield et al., 2003) UK	51	29 F	Constant comparison	To identify factors of importance to patients when beginning courses of antidepressant medication in their everyday lives and social identity.	Returning to normal functioning Stigma
(Gibson et al., 2016) New Zealand	1747	1345 F	Content and thematic analysis	To explore experiences of antidepressants and meaning attributed to them	Necessary treatment for disease Life saver Meet social obligations Enable normal functioning Temporary way of getting through A stepping‐stone Ineffective Unbearable side effects Loss of authenticity Mask real problem Undermine sense of control Balancing fear of dependency and fear of relapse Calmer but not myself
(Guy et al., 2020) UK	158	118 F	Thematic	To explore experience of withdrawal from antidepressants	Lack of information about withdrawal Doctors poorly informed about best method tapering Misdiagnosis of relapse Seeking alternative advice Impact on functioning of withdrawal
(Ho et al., 2017) Malaysia	30	15 F	Thematic	To study the reasons why patients do or do not adhere to antidepressants	Beliefs about cause Dislike of pills Forgetfulness Stigma Overall pill burden Lack of support
(Huijbers et al., 2020) Netherlands	15	8 F	Thematic approach	To examine the barriers and facilitators to discontinuation	Medication not always needed Missing a substance in brain Uncertain benefits Withdrawal symptoms
(Jaffray et al., 2014) UK	29	20 F	Framework method	To explore the factors, which hinder or facilitate the continuation of antidepressants	Involvement in decision‐making Beliefs about cause Perceived support
(Karp, 1993) USA	20	12 F	Grounded theory	To explore response to medication for depression	Identity change Resistance Trial commitment Conversion – accept and internalize rhetoric of biochemical causation Disenchantment
(Knudsen et al., 2002) Denmark	8	8 F	Descriptive	To understand young women's perspectives on using SSRIs	Deviate from normal Able to function Stigma
(Knudsen et al., 2003) Denmark	12	12 F	Descriptive	To explore younger women's perceived functions of SSRIs in their everyday lives	Ambiguous feelings Relief Able to lead ordinary lives
(Lafrance & Stoppard, 2006) USA	8	8 F	Discursive analysis	To examine how a biomedical understanding is drawn on and mobilized in women's accounts of depressive experiences	It's got a name It's just like diabetes Limits of biomedical model for legitimizing depression – incongruity between biomedical explanation and personal experience.
(Leydon et al., 2007) UK	17	10 F	Thematic analysis	To examine beliefs about and experiences of discontinuation	Uncertainty about need and benefits Unknown and uncertain consequences of stopping Discontinuation symptoms Problems of withdrawal‐ worse than original symptoms
(McMullen & Herman, 2009) Canada	6	6 F	Discourse analysis	To examine decision to quit taking antidepressant	Actual or potential effects Resisting medical knowledge Denigrating medical authorities
(Price et al., 2009) UK	38 + 11 validation + 272 online validation	28 F	Framework technique	To understand the phenomena of emotional blunting from SSRI use	Reduction in intensity Reduction of positive emotions Reduction of negative emotions Emotional detachment Not caring Like a shell Reduced responsiveness Reduced creativity
(Ridge et al., 2015) UK	107		Thematic analysis	To examine the moral framework for use of antidepressants	Concern about legitimacy of depression experience – shame, stigma Social stigma of antidepressants Concerns about legitimacy of antidepressants Addiction and withdrawal
(Schofield et al., 2011) UK	61	43 F	Constant comparison	To explore and compare factors that influence patients' decisions about treatment	Initial desperation Experimenting with dose Trade off risks and benefits 11 stopped 11 intend to stop …….17 cyclical use
(van Geffen et al., 2011) Netherlands	18	13 F	Grounded theory	To identify patterns of experiences and beliefs leading to discontinuation or continuation of treatment.	Continuers were satisfied with the GP's role during initiation and execution of SSRI treatment and fully trusted their decision. Discontinuers less involved in decision making and often appeared to have little confidence in their GPs.
(Vargas et al., 2015) USA	30	19 F	Grounded theory	To identify views regarding depression and antidepressant therapy among depressed Latinos and to explore potential cultural barriers to pharmacotherapy engagement	Stigma Alternate explanations for depression Concerns about antidepressant use Ambivalence about seeking psychiatric care
(Verbeek‐Heida & Mathot, 2006) Netherlands	16	9 F	Grounded theory	To provide insights into decision making from a patient's point of view in relation to stopping SSRIs	Trial and error Feeling good as justification for stopping Feeling good as justification for continuing Managing fears and uncertainties
(Wills et al., 2020) New Zealand	16	16 F	Narrative approach	To examine how antidepressants shape selfhood in young women	Diagnosed self An ill self A normal self A stigmatized self An uncertain self A powerless self

3.4. Qualitative synthesis

Four themes were identified across the studies: the only option available; stigma associated with ‘biochemical deficit’; not myself and the vicious cycle. The first two themes describe the participants' experiences of seeking medical help with how they were feeling. The third theme describes participants' experiences of taking antidepressants and the final theme captures how participants described their attempts to stop taking antidepressants.

3.4.1. The only option available

This theme captures how participants described how antidepressants were the only option available when they sought medical help. It encompasses the categories of surviving the crisis, desperation, nobody listening, temporary effect, worry about adverse effects, biomedical perception and mask real problems. This theme was developed from the findings in eight studies (Anderson et al., 2015; Bayliss & Holttum, 2015; Cartwright et al., 2018; Garfield et al., 2003; Gibson et al., 2016; Leydon et al., 2007; Schofield et al., 2011).

The first aspect of this theme describes the process of seeking help.

I think we both felt that I needed something, I was having a bit of a crisis and I needed something quite quickly (Schofield et al., 2011).

Participants were more accepting of being prescribed antidepressants when they were in acute crisis but were ambivalent about taking them outside this context (Bayliss & Holttum, 2015). They often described feeling as though nobody was listening and that antidepressants were their only option.

Well, yeah, on her notes I think she wrote depressed and I think she said to me, “I think you're suffering with depression and need antidepressants”…And she put me on antidepressants straight away, and on sleeping tablets as well I think. She did not even ask me! (Anderson et al., 2015).

The following quote describes how some participants felt if they did not follow medical advice treatments would be withheld.

I felt bullied into keeping taking them and at times told I would not receive therapeutic treatment if I did not take them. There felt like no alternative and I felt very trapped into taking them (Gibson et al., 2016).

Some participants found relief from symptoms on their first antidepressant but over half the participants in one study (Cartwright et al., 2018) had trialled more than one before obtaining relief from symptoms. Participants across the studies described three responses to the medical advice: 1) some took the medication as prescribed, 2) others decided for themselves when to take the medication and 3) others chose not to take the medication. Most participants described feeling that there was no other treatment option available and were desperate for relief.

3.4.2. Stigma associated with ‘biochemical deficit’

This theme was developed to capture the categories biochemical deficit, not normal, experience shaped by stigma, incongruity between medical explanations and own experience, passivity and undermining sense of control. The theme was developed from the findings in14 studies (Anderson et al., 2015; Cartwright et al., 2018; Fullager, 2009; Garfield et al., 2003; Ho et al., 2017; Huijbers et al., 2020; Jaffray et al., 2014; Knudsen et al., 2002; Lafrance & Stoppard, 2006; McMullen & Herman, 2009; Ridge et al., 2015; van Geffen et al., 2011; Vargas et al., 2015; Wills et al., 2020). Participants described how they believed the medical explanation was stigmatizing as it identified that they had some neurochemical abnormality leading to a mental disorder.

For some the ‘biochemical deficit’ was constructed as something that would require on‐going treatment.

One doctor … said this to me once, ‘If you're a diabetic, would you stop taking your medication because you felt good?’ And I said ‘No.’ And she said, ‘Well, why would you, as a person who has a chemical imbalance in your brain, stop taking the medication, because you feel good?’ I went, ‘Because you're not depressed anymore.’ And she goes, ‘Yeah, but your chemical imbalance hasn't gone though’ … if you are on it because you have obviously got a shortage of serotonin or something, if you are on that, you could be on it for life as maintenance (Fullager, 2009).

The authority with which this ‘doctor’ claimed an on‐going chemical imbalance suggested the person was biologically flawed and unable to make their own decisions. Despite a lack of evidence to support the ‘doctor's’ claim, it is stated as fact: there is something wrong and this is constructed as a mental disorder. This medical construction of their experience as a biochemical abnormality was a source of stigma to many participants:

I felt like it kind of, it made me feel like different, it made me feel kind of like damaged almost. … it just made me feel kind of like crazy almost, not crazy but like just different than other people (Wills et al., 2020).

The stigma was described by this participant as being different or damaged and reliant on medical expertise. Another participant described feeling shamed into taking antidepressants.

This GP was particularly um insistent that I take her prescription. And I had said, ‘no,’ I had said ‘no’ about three times. In the end she said to me, ‘um I don't know what's wrong with depressed people, why they always refuse to take um my prescriptions. I think depressed people like being depressed.’ I felt like she'd shamed me into taking her um prescription. (Anderson et al., 2015).

This participant described how her sense of control was undermined with the biochemical deficit approach positioning her in a passive position with the doctor having control. The shame and the social stigma associated with having a mental disorder was linked by many to the use of antidepressants.

I'm worried about, I'm concerned about them finding out that I'm on medication… (Garfield et al., 2003).

Most participants across the 14 papers included in this theme described being told they needed antidepressants because they had a ‘biochemical deficit’. Whilst this explanation had the weight of medical authority many experienced this as stigmatizing – that they were not normal.

3.4.3. Not myself

This theme was developed from the categories masking the real problem, detachment, loss of authenticity, not myself, fragility, reduction in emotional experiences and trade‐offs. This theme was apparent in six studies (Bayliss & Holttum, 2015; Gibson et al., 2016; Karp, 1993; Knudsen et al., 2003; Price et al., 2009; Wills et al., 2020). In response to the ‘biochemical deficit’ explanation most participants went through a risk a management decision‐making process weighing up the possible benefits and risks. Those that took the medication described it as helping their functioning but this was often offset by experiences in which they felt the medication was masking the real problem or altering their experiences of themselves and others. This was captured in one study where participants described unbearable side effects, undermining emotional authenticity, masking real problems and reducing the experience of control (Gibson et al., 2016). As a consequence, many participants were not taking their antidepressants as prescribed.

Many participants described an improvement in mood and a sense of hope following commencement on antidepressants.

It just takes a lot of weight lifted off your shoulders that you are starting medication and that you are starting on the road to get better (Anderson et al., 2015).

However, for most participants it was common to experience a flattening of emotional responses which included feelings of being ‘dulled’, ‘numbed’, ‘flattened’ or completely ‘blocked’, as well as descriptions of feeling ‘blank’ and ‘flat’ (Price et al., 2009). This affected their relationships with others and how they saw themselves.

[Antidepressants were] helpful in making my depression less. However, the effects that they had on me as a person and how I treated others is the main reason I came off them. I am a considerate and selfless person and while on the antidepressants I was the complete opposite (Gibson et al., 2016).

Many participants expressed concerns about how antidepressants made them feel which some found worse than the depressive symptoms for which they were seeking help.

3.4.4. A vicious cycle

This theme describes the process identified by many of the participants when trying to discontinue their antidepressants. The categories embedded in this theme were incapacitating, worse than original symptoms, caught in a drug loop, disillusionment, unbearable, misdiagnosis and lack of information. Participants in eight studies identified these categories (Bosman et al., 2016; Brijnath & Antoniades, 2017; Davies et al., 2018; Eveleigh et al., 2019; Guy et al., 2020; Leydon et al., 2007; Ridge et al., 2015; Verbeek‐Heida & Mathot, 2006).

Participants often described wanting to discontinue antidepressants but had a fear of relapse.

I do not really want to take the risk. If I stop with the antidepressant medication, that A the symptoms would come back, but also B there would be more tension in my relationship, and I would keep getting into a fight (Eveleigh et al., 2019).

Others described withdrawal reactions when attempting to discontinue antidepressants.

I think it is addictive because you have to start and discontinue really slowly. You can also really feel it when you discontinue. I find it quite scary, I dislike it, but should not think about it too much (Bosman et al., 2016).

The withdrawal effects were described by participants as ranging from mild to severe.

The withdrawals are so severe I cannot function to do simple tasks like make a cup of tea let alone leave the house to go to work (Davies et al., 2018).

Fear of relapse and the experience of withdrawal symptoms created a vicious cycle in which participants felt compelled to keep taking antidepressants when they no longer wanted to.

4. DISCUSSION

This review of qualitative studies of peoples' experiences of prescribed antidepressants found that these participants described how in order to receive help they had to engage with a medical pathway in which their experiences were constructed as arising from a biochemical deficit. Consequently, antidepressants were the only option made available. It was because of this biomedical explanation that participants felt abnormal and thus stigmatized. While it was evident that some participants found antidepressants helpful, others felt the medication was masking the real problem or altering their experiences of themselves and others. The participants in the studies described how they had received no advice or guidance about how long to take the medication and how to stop taking it. Many wanted to discontinue the antidepressants but were fearful of relapse and/or withdrawal symptoms.

The experiences of the participants in these studies were shaped by the spurious biological argument that antidepressants ‘correct a major imbalance in the brain’ (Lacasse & Leo, 2015). Biogenetic explanations—especially the chemical imbalance explanation—have risen in recent years, especially in the United States and there is accumulating evidence that these explanations contribute to stigmatizing attitudes (Schroder et al., 2020). The current evidence‐based biological understanding of depression is that it is an extremely complex behavioural phenotype regulated by a large number of biological pathways, external exposures and genetic factors each contributing small effects (Ionnidis, 2008). The stigmatizing effects of this construction is supported by Haslam and Kvaale's (2015) review that identified that biogenetic explanations are often associated with more stigmatizing attitudes. The findings from an experimental study conducted by Kemp et al. (2014) suggest that providing individuals with a chemical imbalance causal explanation for their depressive symptoms activates a host of negative beliefs with the potential to worsen the course of depression and attenuate a response to treatment.

A study investigating why patients with a mood disorder entered a psychotherapy study (Wells et al., 2020) reported that participants wanted a framework other than the medical model with its reliance on antidepressants, in order to make sense of their experiences and develop new strategies. The participants in that study identified that antidepressants were ‘not enough’. A recent study of the etiological beliefs of people receiving partial hospitalization for their depression (Schroder et al., 2020) found the most commonly endorsed explanation was that depression was caused by on‐going stressors. Many of those experiencing depression identify a psychosocial explanation rather than adopting the medical explanation. A diathesis‐stress model rather than an unsupported biomedical model of chemical imbalance is more aligned with the beliefs of those experiencing depression.

Our review found that many of the participants in the studies were not taking antidepressants as prescribed. Lingam and Scott (2002) found that approximately 30% of patients discontinue antidepressants within 1 month, and up to 60% discontinue them within 3 months. A more recent study (Gaspar et al., 2020) suggests that non‐adherence remains high. This study identified that most patients were not receiving antidepressants after the first 5 months following their initial diagnosis of major depressive disorder and if utilized adherence was low. It is significant to note that the advent of selective serotonin re‐uptake inhibitors has not changed overall patterns of non‐adherence (Demyttenaere & Haddad, 2000). A systematic review (Sansone & Sansone, 2012) reported that the reasons behind patient nonadherence to antidepressants are varied and include both patient factors (e.g., concerns about side effects, fears of addiction, belief that these medications will not really address personal problems) as well as clinician factors (e.g., lack of sufficient patient education, poor follow‐up).

The review also identified that people were caught in a vicious cycle in which while they did not necessarily want to continue taking antidepressants, they were fearful of potential relapse or withdrawal symptoms. Hengartner et al. (2020) reported that complex adaptive regulatory mechanisms in response to chronic dosing may lead to drug tolerance or dependence. Antidepressant withdrawal syndrome may follow abrupt discontinuation or inadequate tapering for those patients chronically administered dependence forming medicines. Limitations in the understanding of antidepressant dependence and withdrawal are influenced by limitations in what is understood about the neuropsychology of depression and the mode of action of antidepressants.

Mental health nurses are often caught in the tension between practising in services dominated by the psychiatric model of care and the needs of those with lived experience. The medical model with its emphasis on the ‘expertise’ of the doctor and a reliance on antidepressants as the only treatment option, is the antithesis of the recovery model (Crowe, 2017). Recovery, however, needs to be a cooperative process in which those with lived experience and mental health nurses work together towards the same goal. The key to this is that mental health nurses need to provide the opportunity to access to a range of treatments, including medications, that will promote recovery. Mental health nurses can engage with people seeking treatment by co‐operatively formulating the person's experiences in terms of predisposing, precipitating, perpetuating and protective factors (Crowe et al., 2008). This enables a shift from constructing those experiences as evidence of biochemical deficit and reframing them in terms of stress‐vulnerability a treatment approach to depression more in‐line with what the participants in this review wanted.

Those with lived experience of depression need to be actively involved in decision‐making about their treatment (Inder et al., 2019). They need to be provided with alternatives to the biochemical deficit model and if they choose to take antidepressants they need to be made aware of their limitations.

5. CONCLUSION

Participants in the studies described how in order to receive help they had to engage with a medical pathway that described depression as being caused by a biochemical deficit which many found stigmatizing. They were also not always advised of the side effects and the limitations to the efficacy of antidepressants. The included studies described experiences that were not always helpful and those seeking treatment for depression need to be provided with treatment options and evidence‐based information about anti‐depressants, so that they can make their own informed choices. As recommended by WHO (World Health Organisation, 2021) depending on the severity and pattern of depressive episodes over time, healthcare providers may offer psychological treatments such as behavioural activation, cognitive behavioural therapy and interpersonal psychotherapy and/or antidepressant medication. The full range of recommended treatments need to be made available.

6. RELEVANCE STATEMENT

Depression is the most common diagnosis used in mental health settings. Despite the evidence for the effectiveness of psychotherapy alone or in conjunction with medication, there are high rates of non‐adherence to antidepressants and many people experience disabling withdrawal symptoms when they discontinue taking them. Mental health nurses work alongside people prescribed antidepressants and need an evidence‐based understanding of the experience of taking them.

CONFLICT OF INTEREST

No conflict of interest has been declared by the authors.

1. Was there a clear statement of the aims of the research?

2. Is a qualitative methodology appropriate?

3. Was the research design appropriate to address the aims of the research?

4. Was the recruitment strategy appropriate?

5. Was the data collected in a way that addressed the research issue?

6. Has the relationship between researcher and participants been adequately considered?

7. Have the ethical issues been taken into consideration?

8. Was the data analysis sufficiently rigorous?

9. Is there a clear statement of findings?

10. How valuable is the research?

Crowe, M. , Inder, M. , & McCall, C. (2023). Experience of antidepressant use and discontinuation: A qualitative synthesis of the evidence. Journal of Psychiatric and Mental Health Nursing, 30, 21–34. 10.1111/jpm.12850

DATA AVAILABILITY STATEMENT

Data sharing not applicable ‐ no new data generated