How do people taking antipsychotics long-term manage and cope with tiredness-related side effects?

Hobson-Merrett, Charley and Simpson, Jane and Preston, Nancy (2026) How do people taking antipsychotics long-term manage and cope with tiredness-related side effects? PhD thesis, Lancaster University.

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Abstract

Antipsychotics are prescribed long-term to some people with mental health diagnoses. Some long-term antipsychotic users experience tiredness-related side effects (TRSEs), such as sedation and fatigue. For those who experience TRSEs this can cause distress, reduced functioning, and reduced social activity. Little is currently known about how people manage or cope with TRSEs. This study was designed with the aim of increasing understanding of the experiences of people taking antipsychotics long-term, as they manage and cope with TRSEs. A scoping study was undertaken, mapping both the way in which researchers conceptualise and research TRSEs, and mapping strategies for coping with/managing TRSEs. The scoping study showed: (1) Studies often either treated antipsychotics as interchangeable or focused on one or two antipsychotics; (2) Many studies either treated diagnoses as unimportant or focused on one or two diagnoses; (3) Most studies did not define terms such as ‘tiredness’ or ‘fatigue’, with some studies using different terms interchangeably; (4) No current viable pharmacological solutions to TRSEs were identified, with inconclusive evidence as to whether professional support might improve management and coping, but some evidence that acceptance of TRSEs and lifestyle changes might help. This highlighted a research gap regarding the experience of coping with TRSEs. Interpretative phenomenological analysis was used to design and undertake a study addressing this research gap. Ten people were interviewed about their experiences of managing and coping with TRSEs. Analysis showed that TRSEs and management/coping became a part of participants’ everyday lives, but requiring participants to prioritise particular elements of their lives. Management/coping strategies were often detrimental to participants, and either partially or completely unsuccessful. This resulted in the need for participants to practise acceptance of TRSEs. Antipsychotic users’ attempts to manage/cope with TRSEs resulted in further burdens for people who were already living with mental health problems and distressing TRSEs. Being unable to discontinue antipsychotic use due to real or perceived lack of power and/or fear of symptom relapse may leave antipsychotic users with mental health problems continually attempting to balance coping with TRSEs against continued antipsychotic use.