Free Standard AU & NZ Shipping For All Book Orders Over $80!
Register      Login
Australian Journal of Primary Health Australian Journal of Primary Health Society
The issues influencing community health services and primary health care
RESEARCH ARTICLE (Open Access)

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

Amy Coe https://orcid.org/0000-0003-3723-7645 A * , Noor Abid https://orcid.org/0000-0002-8631-7273 A and Catherine Kaylor-Hughes https://orcid.org/0000-0003-3353-4108 A
+ Author Affiliations
- Author Affiliations

A Department of General Practice and Primary Care, The University of Melbourne, Medical Bldg (181) Corner Grattan Street & Royal Parade, Melbourne, Vic. 3010, Australia.

* Correspondence to: amy.coe@unimelb.edu.au

Australian Journal of Primary Health 30, PY23046 https://doi.org/10.1071/PY23046
Submitted: 7 March 2023  Accepted: 17 April 2024  Published: 6 May 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of La Trobe University. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Background

Antidepressant use has continually increased in recent decades and although they are an effective treatment for moderate-to-severe depression, when there is no longer a clinical benefit, deprescribing should occur. Currently, routine deprescribing is not part of clinical practice and research shows that there has been an increase in antidepressant users seeking informal support online. This small scoping exercise used a mixed-methods online survey to investigate the motives antidepressant users have for joining social media deprescribing support groups, and what elements of the groups are most valuable to them.

Methods

Thirty members of two antidepressant deprescribing Facebook groups completed an online survey with quantitative and open-text response questions to determine participant characteristics and motivation for group membership. Quantitative data were analysed using descriptive statistics, and open-text responses were analysed thematically through NVivo.

Results

Two overarching themes were evident: first, clinician expertise, where participants repeatedly reported a perceived lack of skills around deprescribing by their clinician, not being included in shared decision-making about their treatment, and symptoms of withdrawal during deprescribing going unaddressed. Motivated by the lack of clinical support, peer support developed as the second theme. Here, people sought help online where they received education, knowledge sharing and lived experience guidance for tapering. The Facebook groups also provided validation and peer support, which motivated people to continue engaging with the group.

Conclusions

Antidepressant users who wish to cease their medication are increasingly subscribing to specialised online support groups due to the lack of information and support from clinicians. This study highlights the ongoing need for such support groups. Improved clinician understanding about the complexities of antidepressant deprescribing is needed to enable them to effectively engage in shared decision-making with their patients.

Keywords: antidepressant, clinician, deprescribing, experiences, online, patient, peer support, withdrawal.

References

Ambresin G, Palmer V, Densley K, Dowrick C, Gilchrist G, Gunn JM (2015) What factors influence long-term antidepressant use in primary care? Findings from the Australian diamond cohort study. Journal of Affective Disorders 176, 125-132.
| Crossref | Google Scholar | PubMed |

Australian Institute of Health and Welfare (2022) Australia’s health 2022: data insights, catalogue number AUS 240, Australia’s health series number 18. (Australian Institute of Health and Welfare: Canberra, ACT, Australia) Available at http://www.aihw.gov.au/reports/australias-health/australias-health-2022-data-insights/about

Bogowicz P, Curtis HJ, Walker AJ, Cowen P, Geddes J, Goldacre B (2021) Trends and variation in antidepressant prescribing in English primary care: a retrospective longitudinal study. BJGP Open 5(4), BJGPO.2021.0020.
| Crossref | Google Scholar |

Bot M (2024) Optimal, PERsonal Antidepressant use. The Netherlands Organisation for Health Research and Development. Available at https://opera-project.nl/

Bowers HM, Williams SJ, Geraghty AWA, Maund E, O’brien W, Leydon G, May CR, Kendrick T (2019) Helping people discontinue long-term antidepressants: views of health professionals in UK primary care. BMJ Open 9, e027837.
| Crossref | Google Scholar |

Braun V, Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2), 77-101.
| Crossref | Google Scholar |

Braun V, Clarke V (2021) To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Research in Sport, Exercise and Health 13(2), 201-216.
| Crossref | Google Scholar |

Britt H, Miller GC, Bayram C, Henderson J, Valenti L, Harrison C, Pan Y, Charles J, Pollack AJ, Chambers T, Gordon J, Wong C (2016) ‘A decade of Australian general practice activity 2006-07 to 2015-16: BEACH: bettering the evaluation and care of health.’ (Sydney University Press: NSW, Australia)

Cartwright C, Gibson K, Read J, Cowan O, Dehar T (2016) Long-term antidepressant use: patient perspectives of benefits and adverse effects. Patient Preference and Adherence 10, 1401-1407.
| Crossref | Google Scholar |

Coe A, Kaylor-Hughes C, Fletcher S, Murray E, Gunn J (2021) Deprescribing intervention activities mapped to guiding principles for use in general practice: a scoping review. BMJ Open 11(9), e052547.
| Crossref | Google Scholar | PubMed |

Coe A, Gunn J, Kaylor-Hughes C (2022) General practice patients’ experiences and perceptions of the WiserAD structured web-based support tool for antidepressant deprescribing: protocol for a mixed methods case study with realist evaluation. JMIR Research Protocols 11(12), e42526.
| Crossref | Google Scholar | PubMed |

D’Agostino AR, Optican AR, Sowles SJ, Krauss MJ, Escobar Lee K, Cavazos-Rehg PA (2017) Social networking online to recover from opioid use disorder: a study of community interactions. Drug and Alcohol Dependence 181, 5-10.
| Crossref | Google Scholar | PubMed |

Davidson SK, Romaniuk H, Chondros P, Dowrick C, Pirkis J, Herrman H, Fletcher S, Gunn J (2020) Antidepressant treatment for primary care patients with depressive symptoms: data from the diamond longitudinal cohort study. Australian & New Zealand Journal of Psychiatry 54, 367-381.
| Crossref | Google Scholar |

Davies J, Read J (2019) A systematic review into the incidence, severity and duration of antidepressant withdrawal effects: are guidelines evidence-based? Addictive Behaviors 97, 111-121.
| Crossref | Google Scholar | PubMed |

Fava GA, Belaise C (2018) Discontinuing antidepressant drugs: lesson from a failed trial and extensive clinical experience. Psychotherapy and Psychosomatics 87(5), 257-267.
| Crossref | Google Scholar | PubMed |

Gage-Bouchard EA, LaValley S, Mollica M, Beaupin LK (2017) Cancer communication on social media: examining how cancer caregivers use Facebook for cancer-related communication. Cancer Nursing 40(4), 332-338.
| Crossref | Google Scholar | PubMed |

Gibson K, Cartwright C, Read J (2014) Patient-centered perspectives on antidepressant use: a narrative review. International Journal of Mental Health 43(1), 81-99.
| Crossref | Google Scholar |

Gupta S, Cahill J, Miller R (2019) ‘Deprescribing in psychiatry.’ (Oxford University Press: USA)

Horne R, Weinman J, Hankins M (1999) The beliefs about medicines questionnaire: the development and evaluation of a new method for assessing the cognitive representation of medication. Psychology & Health 14, 1-24.
| Crossref | Google Scholar |

Horowitz MA, Taylor D (2022) Distinguishing relapse from antidepressant withdrawal: clinical practice and antidepressant discontinuation studies. BJPsych Advances 28(5), 297-311.
| Crossref | Google Scholar |

Horowitz M, Taylor D (2024) ‘The Maudsley deprescribing guidelines: antidepressants, benzodiazepines, gabapentinoids and Z-drugs.’ 1st edn. (Wiley-Blackwell)

Iacobucci G (2019) NICE updates antidepressant guidelines to reflect severity and length of withdrawal symptoms. BMJ 367, l6103.
| Crossref | Google Scholar |

Isenor JE, Bai I, Cormier R, Helwig M, Reeve E, Whelan AM, Burgess S, Martin-Misener R, Kennie-Kaulbach N (2021) Deprescribing interventions in primary health care mapped to the behaviour change wheel: a scoping review. Research in Social and Administrative Pharmacy 17, 1229-1241.
| Crossref | Google Scholar |

Kaylor-Hughes C, Coe A, Fletcher S, Chondros P, Chatterton ML, Hoyer D, Chen TF, Ng C, Mangin D, Allnutt Z, Densley K, Kendrick T, Gunn J (2023) WiserAD: the effect of a structured online intervention on antidepressant deprescribing in primary care. Available at https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=383739&isReview=true

Kelly K, Posternak M, Jonathan EA (2008) Toward achieving optimal response: understanding and managing antidepressant side effects. Dialogues in Clinical Neuroscience 10(4), 409-418.
| Crossref | Google Scholar | PubMed |

Kendrick T, Geraghty AWA, Bowers H, Stuart B, Leydon G, May C, Yao G, O’Brien W, Glowacka M, Holley S, Williams S, Zhu S, Dewar-Haggart R, Palmer B, Bell M, Collinson S, Fry I, Lewis G, Griffiths G, Gilbody S, Moncrieff J, Moore M, Macleod U, Little P, Dowrick C (2020) REDUCE (reviewing long-term antidepressant use by careful monitoring in everyday practice) internet and telephone support to people coming off long-term antidepressants: protocol for a randomised controlled trial. Trials 21(1), 419.
| Crossref | Google Scholar | PubMed |

Kroenke K, Spitzer RL, Williams JBW (2003) The patient health questionnaire-2: validity of a two-item depression screener. Medical Care 41(11), 1284-1292.
| Crossref | Google Scholar | PubMed |

Malhi GS, Bell E, Bassett D, Boyce P, Bryant R, Hazell P, Hopwood M, Lyndon B, Mulder R, Porter R, Singh AB, Murray G (2021) The 2020 Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for mood disorders. Australian & New Zealand Journal of Psychiatry 55(1), 7-117.
| Crossref | Google Scholar | PubMed |

McKenna KYA, Bargh JA (1998) Coming out in the age of the Internet: identity “demarginalization” through virtual group participation. Journal of Personality and Social Psychology 75(3), 681-694.
| Crossref | Google Scholar |

Mojtabai R, Olfson M (2013) National trends in long-term use of antidepressant medications: results from the US National Health and Nutrition Examination Survey. The Journal of Clinical Psychiatry 75(2), 169-177.
| Crossref | Google Scholar |

Naslund JA, Aschbrenner KA, Marsch LA, Bartels SJ (2016) The future of mental health care: peer-to-peer support and social media. Epidemiology and Psychiatric Sciences 25(2), 113-122.
| Crossref | Google Scholar | PubMed |

NICE (2022) Depression in adults: treatment and management. p. 103. (National Institute for Health and Care Excellence) Available at https://www.nice.org.uk/guidance/ng222/resources/depression-in-adults-treatment-and-management-pdf-66143832307909

OECD Statistics (2023) Pharmaceutical market – full dataset [dataset]. (Organisation for Economic Co-operation and Development). Available at https://stats.oecd.org/index.aspx?datasetcode=health_phmc

Pestello FG, Davis-Berman J (2008) Taking anti-depressant medication: a qualitative examination of internet postings. Journal of Mental Health 17(4), 349-360.
| Crossref | Google Scholar |

Ramic E, Prasko S, Gavran L, Spahic E (2020) Assessment of the antidepressant side effects occurrence in patients treated in primary care. Materia Socio-Medica 32(2), 131-134.
| Crossref | Google Scholar | PubMed |

Read J (2020) How common and severe are six withdrawal effects from, and addiction to, antidepressants? The experiences of a large international sample of patients. Addictive Behaviors 102, 106157.
| Crossref | Google Scholar | PubMed |

Read J, Moncrieff J, Horowitz MA (2023) Designing withdrawal support services for antidepressant users: patients’ views on existing services and what they really need. Journal of Psychiatric Research 161, 298-306.
| Crossref | Google Scholar | PubMed |

Royal College of Psychiatrists (2019) Position statement on antidepressants and depression. Royal College of Psychiatrists.

Scott IA, Hilmer SN, Reeve E, Potter K, Le Couteur D, Rigby D, Gnjidic D, Del Mar CB, Roughead EE, Page A, Jansen J, Martin JH (2015) Reducing inappropriate polypharmacy: the process of deprescribing. JAMA Internal Medicine 175(5), 827-834.
| Crossref | Google Scholar | PubMed |

Sørensen A, Jørgensen KJ, Munkholm K (2022) Description of antidepressant withdrawal symptoms in clinical practice guidelines on depression: a systematic review. Journal of Affective Disorders 316, 177-186.
| Crossref | Google Scholar | PubMed |

Wallis KA, Donald M, Horowitz M, Moncrieff J, Ware RS, Byrnes J, Thrift K, Cleetus MA, Panahi I, Zwar N, Morgan M, Freeman C, Scott I (2023a) RELEASE (REdressing Long-tErm Antidepressant uSE): protocol for a 3-arm pragmatic cluster randomised controlled trial effectiveness-implementation hybrid type-1 in general practice. Trials 24(1), 615.
| Crossref | Google Scholar | PubMed |

Wallis KA, Dikken PJS, Sooriyaarachchi P, Bohnen AM, Donald M (2023b) Lessons from the Netherlands for Australia: cross-country comparison of trends in antidepressant dispensing 2013–2021 and contextual factors influencing prescribing. Australian Journal of Primary Health 30, PY23168.
| Crossref | Google Scholar |

White E, Read J, Julo S (2021) The role of Facebook groups in the management and raising of awareness of antidepressant withdrawal: is social media filling the void left by health services? Therapeutic Advances in Psychopharmacology 11, 204512532098117.
| Crossref | Google Scholar |

Wilson CJ, Deane FP, Ciarrochi JV, Rickwood D (2005) Measuring help seeking intentions: properties of the general help seeking questionnaire. Canadian Journal of Counselling 39(1), 15–-28.
| Google Scholar |