Social media group support for antidepressant deprescribing: a mixed-methods survey of patient experiences

Introduction

The rate of antidepressant prescriptions in Australia are among the highest in the world and is steadily increasing (OECD Statistics 2023). This trend is consistent with other developed countries, such as the United Kingdom (UK) and the United States (US) (Mojtabai and Olfson 2013; Bogowicz et al. 2021). Guidelines published by The Royal Australian and New Zealand College of Psychiatrists (RANZCP) and the National Institute for Health and Care Excellence (NICE) recommend that individuals remain on antidepressants for 6–12 months following the cessation of depressive symptoms (Malhi et al. 2021; NICE 2022). However, evidence suggests that some individuals are continuing to be prescribed antidepressants for longer than the recommended duration (Cartwright et al. 2016). Prolonged use of antidepressant medications can result in various health concerns including an exacerbation of depressive symptoms, functional impairment and physical side-effects (Kelly et al. 2008; Ambresin et al. 2015; Ramic et al. 2020). Studies also suggest that anywhere between 30 and 50% of antidepressant users are continuing treatment without experiencing any clinical benefit (Ambresin et al. 2015; Davidson et al. 2020); therefore, deprescribing (the supervised and planned process of gradual dose reduction) may be necessary for some individuals.

Some antidepressant users have reported receiving little support from healthcare professionals when attempting to deprescribe (White et al. 2021; Read et al. 2023). In the past, clinicians have been criticised for mistaking withdrawal symptoms for relapse (Fava and Belaise 2018). Further, a recent review suggests that there is inadequate guidance for clinicians and patients when distinguishing withdrawal from relapse and managing withdrawal symptoms (Sørensen et al. 2022). Evidence-based information and research into antidepressant deprescribing is currently in its infancy (Gupta et al. 2019), with two trials underway in Australia (Coe et al. 2022; Kaylor-Hughes et al. 2023; Wallis et al. 2023a), one in the UK (Kendrick et al. 2020) and one in the Netherlands (Bot 2024). As such, a lack of information and support has led to patients recommencing antidepressant treatment or seeking other avenues for help (White et al. 2021; Read et al. 2023).

Online support groups may play a role in the supportive element of care for antidepressant users (Kendrick 2020). A recent study by White et al (2021) examined the role and utility of 13 Facebook groups dedicated to antidepressant withdrawal support (White et al. 2021). Group members reported that they found value in the support and knowledge offered from other members with lived experience, a finding that is reflected in specialised support groups on social media, in other illness domains (Scott et al. 2015; D’Agostino et al. 2017). In addition to peer support and community, multiple studies have proposed that the presence of online support platforms and the identification of oneself within these social groups has other benefits such as improving a member’s self-esteem and self-belief (McKenna and Bargh 1998; D’Agostino et al. 2017; Gage-Bouchard et al. 2017). Thus, there is use for social media to be a facilitator of support and information sharing between peers with lived experience.

The current study was used as a scoping exercise to investigate what motivates individuals to join online antidepressant deprescribing support groups and to determine which features of the group members find most valuable. This study aimed to contribute to the emerging research investigating the value of joining online antidepressant deprescribing support groups, which might then be applied to other areas of support for the deprescribing journey.

Methods

This study was conducted as part of a fourth-year honours biomedical student project (NA). Potential participants from two Facebook support groups (FG1; FG2, henceforth) were invited to take part in the study via expression of interest posts from the Facebook group administrators. Participants were able to click on a link to the survey if they wished to participate. Facebook was chosen as this social media platform allows for the formation of topic-specific, private groups. The selected Facebook groups were chosen due to their large number of members, as well as their primary ‘group aims’ being focussed on guidance and support for individuals who are attempting to deprescribe or reduce their antidepressant dose. At the time of recruitment, FG2 was exclusive to Facebook and had approximately 5000 members. FG1 has a presence as both a Facebook group with approximately 4000 members, as well as a web-based forum, with recruitment for this study taking place on both platforms. A third Facebook group with approximately 6000 members was initially approached to take part in the study; however, a response was only received after the survey had closed. To be eligible for the study, participants had to be aged >18 years and a member of FG1 and/or FG2.

Participants completed a short online survey via the Qualtrics online survey platform (https://www.qualtrics.com/au/) consisting of 34 multiple choice and nine open-response questions (see Supplementary Appendix A). Due to the time constraints of the student program, the survey was open for 4 weeks between July and August 2021.

Results

A total of 37 individuals clicked the link to the survey, and 30 (81%) consented to participate. All 30 participants provided demographic details (see Table 1), 26 (87%) completed the quantitative measures, and 26 (87%) provided open text responses, with 21 completing both the quantitative and open response questions. Responses to the open questions ranged from 1 to 10 sentences. Most participants were female (n = 19; 63.3%). Participants were aged ≥18 years, with the most common age range (n = 15; 50%) being 46–50+ years. The majority (n = 22, 73.3%) of members reported being first diagnosed with depression ≥4 years prior to the commencement of the study. More than half (n = 16; 53.3%) stated that they had been prescribed their current antidepressant medication for >4 years. Seventeen participants (56.7%) reported experiencing withdrawal symptoms when abruptly ceasing or tapering their antidepressant medication (see Supplementary Appendix B). The four most common effects reported by participants were experiences of insomnia (70%; n = 12), dizziness (52%; n = 9), anxiety (52%; n = 9) and increased feelings of pain in the body (47%; n = 8).

Group members primarily resided in the US, Australia and the UK. The majority (n = 19; 63.3%) of individuals were members of FG1. Most participants reported contributing to their group in some capacity (e.g. posting questions or responding to other group members), with 33.3% (n = 10) denoting that they were an active participant and 53.3% (n = 16) reporting that they were an occasionally active participant.

Mean scores on the PHQ-2 indicated the presence of none to low depressive symptoms (M = 2.3, s.d. = 2.1). Most respondents held somewhat negative beliefs about their antidepressants, with many believing that antidepressant medications were unnecessary to recover from their depression (M = 20.12, s.d. = 4.75). Participants were also concerned about the negative effects of their medication (M = 10.12, s.d. = 4.9), the way doctors prescribe antidepressants (M = 7.12, s.d. = 3.63) and believed that antidepressants cause harm (M = 10.91, s.d. = 3.76). Results from the GHSQ indicated that participants were more likely to seek help for personal­–emotional problems from their partners, friends or mental health professionals. When seeking help for suicidal thoughts, individuals were most likely to seek help from mental health professionals and friends. See Supplementary Appendix C for the full table of help-seeking responses.

Peer support through education, validation and shared experiences

Sharing of knowledge and learning from others’ experiences

Participants were overwhelmingly positive about their experiences of online support groups. This was mainly due to participants having the opportunity to receive support and obtain additional information about antidepressant use, tapering and withdrawal symptoms. One participant said:

It has been helpful in a myriad of ways. As a way of education in how traditional tapering strategies are bound to fail and what comprises a harm reduction approach in tapering. Best of all, you get in contact with peers that are in the same boat with whom one can share experiences. (Male, aged 36–45 years, FG2, Netherlands)

The sharing and validation of experiences naturally created a sense of community where participants felt that help-seeking also led to receiving empathy and understanding from their peers.

I literally owe my life to the Facebook group. It was there that I learned why I was experiencing such bad withdrawals and how I could taper to make the process survivable. And the emotional support and companionship with others who truly understand is how I got through the hardest times. (Female, aged 26–35 years, FG1, USA)

Guidance for deprescribing

Participants highlighted the value of the accessibility to resources and deprescribing protocols successfully used by others. These deprescribing protocols had been used by others who had similarly experienced difficulties adhering to the traditional deprescribing protocols. Some respondents reported that they had successfully deprescribed from their medications as a result of the information obtained from their online support group. One participant wrote:

The people on these forums understand what happens in withdrawal and will give you appropriate guidelines to go by. There are thousands of people like myself seeking guidance from these places. (Female, aged 36–45 years, FG2, Australia)

A model showing the engagement process of antidepressant users when joining an online support group and their subsequent continued engagement with these support groups on Facebook, is shown in Fig. 1. The antidepressant user is situated in the middle, between the clinician and their online supportgroup. A lack of confidence in clinician skills acts as the initial driver for antidepressant users to seek help from online peer groups. Support, information and validation act as motivators for improving confidence in deprescribing within the groups.

Fig. 1.

Antidepressant user motivations for joining online antidepressant deprescribing support groups.

Discussion

This scoping study investigated the motivations of antidepressant users seeking support from social media groups for antidepressant deprescribing. It found that antidepressant users perceived that clinician education and knowledge is lacking with respect to their ability to appropriately deprescribe medications, as well as their ability to support the process of deprescribing when it is appropriate to do so. Clinician education has become a recent focus in the wider deprescribing literature to support routine deprescribing in practice, in a manner that is representative of the real-life challenges faced by patients (Coe et al. 2021; Isenor et al. 2021; Horowitz and Taylor 2024). Clinicians also welcome the prospect of additional training in order to adequately support the deprescribing efforts of their patients (Bowers et al. 2019).

As a result of the lack of clinician-led information, patients appear to be educating themselves about their medication, as well as seeking alternative deprescribing protocols through online social media, in line with findings by White et al. (2021). In addition, the quantitative and open text response data indicated that participants were concerned that there was an over-reliance by clinicians to prescribe antidepressants for depressive disorders when alternative treatments may be just as effective or preferrable. These perceptions of potential medical overtreatment match those found in previous studies (Pestello and Davis-Berman 2008; Gibson et al. 2014).

The motivations individuals appear to have when joining an online antidepressant support group primarily stem from their need for support and guidance while managing symptoms of withdrawal. Many participants reported feeling a lack of trust from their general practitioner and often felt that the withdrawal symptoms they experienced were a result of ‘unrealistic’ and ‘harmful’ deprescribing protocols. Thus, the acknowledgement of symptoms and shared experiences of others serves to be a welcome factor within social media-based support groups. The sense of community and peer support formed within these groups provides an element of care that seemingly makes the practice of deprescribing easier. Furthermore, there appeared to be greater compliance with the tapering strategies suggested by these groups when compared with those suggested by medical professionals. Although these strategies are based on patient experiences, caution should be exercised when consuming such information as it is generally disseminated by non-expert peers and has the potential to be misleading or harmful.

It is worth considering that potential differences in healthcare training and funding models could impact patients’ perceptions and experiences of deprescribing with their clinician. GPs are the first port of call for mental health help-seeking and they prescribe the majority of antidepressants globally (Britt et al. 2016; Australian Institute of Health and Welfare 2022). However, there may be differences in GP training, insurance payouts and patient billing, which may contribute to the lack of knowledge, skills or capacity to adequately support deprescribing in practice. Some countries have also integrated specialised mental health practices into their clinics. For example, the Netherlands have a nurse practitioner model where nurses provide mental health care including antidepressant deprescribing support (Wallis et al. 2023b), potentially resulting in lower prescribing rates and higher patient satisfaction. However, participant views in the current study remained largely similar, regardless of their country of origin, suggesting that the lack of antidepressant deprescribing knowledge by clinicians is a global issue.

Although participants were emphatic about the helpfulness of their Facebook support group, the results from the GHSQ indicated that online support groups were not the first port of call when seeking help. This could suggest that factors such as desperation and frustration at the current antidepressant deprescribing standards prompt individuals to join online deprescribing groups. The presence of individuals with shared experiences makes these groups a viable option for members who feel as though they did not receive adequate care from their medical professional. Many group members faced similar challenges and it is this sense of camaraderie that seemingly supports members through their deprescribing journey. These viewpoints indicate that a motive for subscribing to online groups stems from the need for empathy and understanding. For some, these elements appear to be lacking in a clinical setting. Consistent with a 2016 study that proposed that a reluctance to use formal healthcare services may exist for many in need of mental health care, the treatment efforts of participants may be encouraged through online peer support (Naslund et al. 2016).

The extent to which withdrawal symptoms contributed to the motivation for joining specialised social media support groups was somewhat expected (White et al. 2021), but continues to highlight the experiences of antidepressant users. Research suggests that 61% of people who attempt deprescribing experience withdrawal effects, with 44% reporting those effects as severe (Read 2020). A systematic review also found that up to 86% of people experience withdrawal symptoms that may last up to 79 weeks (Davies and Read 2019). Historically, withdrawal symptoms have been attributed to relapse due to a similarity in symptoms and there has been a reported lack of knowledge in reliably distinguishing between the two (Read 2020). This may indicate why clinicians are not able to support people with their withdrawal symptoms and, in turn, lead to patients seeking online peer support. However, withdrawal symptoms and relapse are distinguishable (Horowitz and Taylor 2022) and recently have been recognised by The Royal College of Psychiatrists (RCPsych; Royal College of Psychiatrists 2019) and the NICE Guidelines (Iacobucci 2019). Withdrawal symptoms should be prioritised in future clinical training and patient information, given its prevalence as a key area of concern for patients and GPs alike (Davies and Read 2019; Read 2020).

Conclusion

Antidepressant prescribing rates are growing, and individuals are increasingly turning to social media for deprescribing information and support due to a perceived lack of support by healthcare professionals. Antidepressant users who may be seeking information or who are ready to deprescribe report that Facebook antidepressant withdrawal support groups are a major source of help for their withdrawal symptoms.

Supplementary material

Supplementary material is available online.