Psychotic mental health conditions like bipolar-I and schizophrenia are serious mental health conditions that can cause severe depression, suicidal ideation, mania, psychosis, hallucinations, and delusions (Heckers et al., 2013). Psychotic disorders are associated with stigma, low quality of life, financial difficulties, and unemployment (Sibitz et al., 2011). Worldwide, it’s estimated that 24 million people are diagnosed with schizophrenia. In the UK, it is over 685,000 people (around 1% of the population) (Zacher, 2022).
The UK National Institute for Health and Social Care (NICE) guidelines recommend GPs refer people with possible psychotic mental health conditions for secondary care for assessment and intervention (Kuipers et al., 2014). The foremost intervention for these people is antipsychotic medication like risperidone (Risperdal), quetiapine (Seroquel), and olanzapine (Zyprexa) (Kuipers et al., 2014). A recent systematic review found that all antipsychotics reduced overall symptoms more than placebo in people with psychotic mental health conditions (Huhn et al., 2019).
Psychotic mental health conditions can be long-term (Kuipers et al., 2014); although in a 20-year follow-up study, around a third of people with these conditions fully recovered, and two-thirds showed a significant reduction in symptoms (O’Keeffe et al., 2019). However, stopping antipsychotics is challenging for people (e.g., fear or relapse) and clinicians (e.g., uncertainty regarding best practice) (Zisman-Ilani et al., 2018, Cooper et al., 2019). There is a growing body of research exploring these challenges and providing support for people and clinicians (e.g. this recent study blogged by Joe Pierre), but there is less research on family members of people who take antipsychotics. Family members are pivotal in supporting people taking and withdrawing from these medications (Morrison and Stomski, 2017). Understanding family members’ perspectives could further draw out the challenges of taking, reducing, or stopping antipsychotics and provide recommendations for clinicians about how to communicate with family members about how to do so.
The authors aimed to explore the perspectives of family members of people with psychosis on the long-term use, reduction, and discontinuation of antipsychotics (Lewins et al, 2022).
Family support is pivotal for people with psychosis in stopping or reducing antipsychotics.
Methods
The authors used a qualitative methodology to explore family members’ perspectives.
People were recruited through a carer support group in London and from the clinical caseloads of community mental health services. Inclusion criteria were: (1) adults of at least eighteen years; and (2) parents, relatives, or friends who consider themselves carers of someone taking antipsychotics and diagnosed with schizophrenia, schizoaffective disorder, delusional disorder, or another non-affective psychotic condition.
The authors conducted 11 semi-structured interviews. The interview questions were developed based on a previous study on the topic with mental health professionals (Cooper et al., 2019). Data were transcribed verbatim, and transcripts were anonymised before analysis.
The authors used thematic analysis to organise data into common ‘themes’ (Braun & Clarke, 2006). This type of analysis is an interpretative method meaning that themes should go beyond description to a higher-order level to describe the underpinning social processes underpinning participants’ talk. All authors agreed to the final themes. The authors provided no information on when they decided to stop recruitment, data collection, or analysis.
Results
The authors interviewed ten parents and one spouse. The parents included two sets of husbands and wives who were interviewed separately. As a result, the described experiences related to nine service users (seven males and two females). The service users used mental health services for five or more years, except for one service user. All participants said they were highly involved in the family members’ lives.
The authors developed three themes:
- Fragile Stability: could the person I care for relapse without antipsychotics;
- Ambivalence: do antipsychotics really help the person I care for?; and
- Constant Vigilance vs Autonomy: I am unsure if I am the right person to be in control of decisions about reducing or stopping antipsychotics.
These themes capture the positives and negatives of antipsychotics for psychotic mental health conditions and the uncertainties of reducing or stopping their use. Quotes are from the original paper.
Theme One: Fragile Stability
Almost all participants described awareness that antipsychotics had improved the family members’ mental health. It was noted that this state of wellness was fragile, as the person could become ill again if something changed in their mental health management. Consequently, family members described caution about stopping or reducing antipsychotics. Their caution was heightened because many had tried multiple antipsychotics over many years to reach this ‘fragile stability.’
There was a need for fragile stability not only for the family member with a psychotic mental health condition but also for the quality of life of the family members: “I know they think that some people can come off the medication. But with clozapine… It’s a dangerous one to mess around with. My opinion is: once you’ve stabilised something, you can’t play about with it…” The antipsychotics one family member said zombified her son, masked his true self, and made it impossible for him to lead a fulfilling life. Her view was that relapses were worth leading an overall fulfilling life.
Theme Two: Ambivalence
All participants described feeling ambivalent about the effectiveness of antipsychotics. It was not that antipsychotics did not provide some sense of ‘fragile stability’; the antipsychotic sedated the family member so much that they were perceived as having no sense of self. As one participant explained, “[my family member as a result of antipsychotics my family member is a] small child that eats, drinks, sleeps, watches TV. That’s it.” Another family member said: “He was just like a zombie – sitting in the chair dribbling and dribbling. It wasn’t a quality of life. And I thought, oh, I wonder if he’ll always be like this.” As a result, family members viewed antipsychotics as a trade-off between sedation and fragile stability.
Theme Three: Constant Vigilance vs Autonomy
Almost all participants reported feeling responsible for not reducing or stopping their family members’ antipsychotic medication and risking their ‘fragile stability’. While participants’ considered this an important role, they were also concerned about a possible regression in the relationship dynamic between themselves and the family member. One parent said: “Sometimes [son’s name] will say “oh, I’ll take it later”. But I’ll keep on at him. It’s really important to me that he takes it and has the quality of life – the best quality of life that he can have, and I think that’s what medication gives him.”
Participants also questioned whether they should handle their family members’ antipsychotics. From their point of view, telling the family member to take their antipsychotics reduced their personhood. However, participants said they struggled to relinquish control to the family member: “I haven’t got round to letting him do it himself on his own. I’ve not felt confident enough yet. I’m worried he’ll not do them and end up not taking them. So I’m not ready yet to leave them alone.”
Family members described feeling antipsychotics provide a sense of mental wellness, but also sometimes took away people’s personality and sense of self.
Conclusions
The authors conclude that it is important:
to consider family members’ views within collaborative care plans, and family members should be included in processes of shared decision-making in relation to medication.
This study demonstrates families’ lack of clarity about the advantages and disadvantages of antipsychotic discontinuation.
Strengths and limitations
The strength of this paper is its new, novel insights into family members’ perspectives on antipsychotic reduction and discontinuation. There are seldom papers like this despite family members being crucial in supporting people with psychotic mental health conditions and their use of antipsychotics (Jaworska et al., 2022). Even though the sampling method and stopping criteria are not described, the authors provide a detailed description of the methods, which enhances dependability (Lincoln, 1985) — the ability for the study to be repeated using the same methods albeit with different results.
The authors say they followed a thematic interpretative approach (Braun & Clarke, 2006), but their results are more indicative of qualitative content analysis (Bengtsson, 2016). Qualitative content analysis usually stays close to participant talk — that is, it stays at the descriptive level. On the other hand, an interpretative thematic analysis goes beyond description to uncover the underlying meanings of participants’ words.
In the title, abstract, and aim, the authors say they explore family members’ perspectives, but they mentioned that they also sampled friends’ perspectives in the methods. It is noted that the sample lacked ethnic or cultural diversity, highlighting the difficulty of recruiting a diverse group of people for mental health research (Brown et al., 2014). I am glad the authors acknowledged this, but I am frustrated that this seems to be the case across mental health research. An authors’ statement on how they attempted to recruit people from these backgrounds would be helpful. This way, it would be clear that although participants from minority and cultural backgrounds were low, there was a clear attempt to recruit these individuals (Rai et al., 2022).
Finally, the authors mention that they increased validity by using reflexivity. However, reflexivity is not about increasing validity because our humanness will always influence research (Berger, 2013). By being reflexive, one strives to clarify to themselves and the readers how their positionality might have influenced the study. Reflexivity is also for celebrating how our humanity led us to our interpretations.
How did the researchers attempt to recruit families of culturally minoritised individuals in this study?
Implications for practice
It is clear from the results that participants were uncertain about how to support their family members with reducing or stopping antipsychotics and the harms and benefits of doing so. Thus, it might be beneficial for clinicians to provide family members with sufficient information about the above, so they can make an informed decision about the best options for support. Continued monitoring might ensure that the family member does not need to increase their dosage, change antipsychotics, or take antipsychotics again. Methods for effective tapering of antipsychotics to minimise the risk of relapse have been written about in the Oxford Academic Schizophrenia Bulletin (Horowitz et al., 2021).
Future research could sample a larger population to provide a greater variance of opinions and perspectives. A clinical observational study could also examine the structure of conversations about stopping or reducing antipsychotics.
Recurrent check-ins between clinicians and people with psychotic mental health conditions and their families are important for coming off antipsychotics safely.
Statement of interests
Amelie has lived experience of bipolar II and antipsychotic medication, but has no conflicts of interest with the current study.
Links
Primary paper
Lewins, A. Morant, N. Akther-Robertson, J. Crellin, N. E. Stansfeld, J. L. Smith, R. & Moncrieff, J. (2022) A qualitative exploration of family members’ perspectives on reducing and discontinuing antipsychotic medication. Journal of Mental Health.
Other references
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Photo credits
- Photo by Towfiqu barbhuiya on Unsplash
