Experiences of post-stroke emotion dysregulation: A meta-ethnography and interpretative phenomenological analysis

Lewis, Elin 2025. Experiences of post-stroke emotion dysregulation: A meta-ethnography and interpretative phenomenological analysis. ClinPsy Thesis, Cardiff University. Item availability restricted.

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Abstract

Stroke is a leading cause of long-term disability. It can have a range of consequences, including changes to mobility, memory, and speech. It also has significant emotional and psychological effects that have been less widely considered in research and health care. Many people who have a stroke have difficulties managing their emotions afterwards. This might include frequent tearfulness, sudden changes in mood, or feeling overwhelmed in everyday situations. Some people describe themselves as more emotional than before, crying or laughing more easily, or struggling to feel in control of how they react. These emotional changes are referred to by lots of different names, but in this paper, they will be referred to as post-stroke emotion dysregulation (PSED). While PSED is relatively common, it is poorly understood. Many people feel confused or ashamed by their emotional reactions after stroke, and healthcare professionals do not always know how to recognise or support it. This can leave individuals feeling isolated, misunderstood, and unsure about how to make sense of what they are going through. This thesis aims to explore and understand the lived experiences of people who have experienced emotion dysregulation after a stroke. It brings together two pieces of research, detailed below. The first is a systematic review that synthesises findings from existing qualitative studies. It aimed to gather and integrate insights from previous research studies that explored how stroke survivors make sense of PSED. Using a method called meta-ethnography, five qualitative studies were analysed to identify common themes. These studies included interviews with stroke survivors from various backgrounds and explored how they experienced and responded to PSED. Five key themes emerged from this synthesis. First, many survivors described a sense of disrupted emotional control, where their emotions felt sudden, intense, and out of proportion. Second, emotional changes were often linked to a sense of identity disruption. Participants spoke about the emotional differences as feeling unfamiliar and out of sync with who they believed themselves to be. Third, people used different coping strategies to manage these changes. Some tried to suppress or hide their emotions, while others developed more adaptive strategies such as breathing techniques or seeking social support. Fourth, a lack of awareness and recognition from family, friends, and professionals often left individuals feeling unsupported. Finally, some participants described a process of adjustment and growth, where over time, they found ways to integrate their emotional experiences and even discovered new aspects of themselves. These findings suggest that PSED is not just a neurological symptom but also a deeply personal and social experience. It affects how people see themselves, how they relate to others, and how they navigate their recovery. The review highlights the need for stroke services to recognise and better support these emotional experiences. The empirical study built on the findings of the review by exploring the lived experiences of ten stroke survivors in more depth. Using a qualitative research approach called Interpretative Phenomenological Analysis (IPA), this study focused on how individuals understood PSED, and how this related to their sense of self. Interviews were conducted several months to years after each person’s stroke, allowing them to reflect on their journey and the challenges they had faced. Four main themes were developed. Firstly, participants described intense, unpredictable emotions after stroke, often feeling overwhelmed and unlike their pre-stroke selves. This was distressing and led to attempts to suppress or control feelings. Secondly, they described a process of identity disruption, particularly in their jobs and family roles. Beliefs about emotional control, shaped by culture, gender, or profession, seemed to make this difference feel worse. Over time, some reconnected with parts of their old identity or accepted a “new version” of themselves. Thirdly, PSED resulted in strained relationships and increased feelings of shame or exclusion. Participants often felt misunderstood by others and stigmatised. However, peer support groups helped many feel accepted and better understood. With time, some found meaning in their experience, developed greater empathy, and re-evaluated their values. Acceptance and self-compassion were key to adjustment, enabling emotional growth and resilience. Together, these studies offer a more holistic perspective of PSED. Rather than viewing it purely as a neurological deficit, this thesis suggests that PSED is a complex biopsychosocial phenomenon. It is shaped not only by changes in the brain, but also by social expectations, personal beliefs, identity processes, and relational experiences. Theoretically, this work contributes to a growing recognition that emotional experiences after stroke need to be understood in context. Identity theories, emotion regulation models, and wide psychosocial frameworks all help to explain how survivors interpret and respond to PSED. Clinically, the findings support a shift towards more holistic, person-centred rehabilitation. Interventions that validate emotional experiences, promote flexible coping, and explore identity, such as Acceptance and Commitment Therapy, may be especially beneficial.

Item Type:	Thesis (DClinPsy)
Date Type:	Completion
Status:	Unpublished
Schools:	Schools > Psychology
Subjects:	B Philosophy. Psychology. Religion > BF Psychology
Date of First Compliant Deposit:	22 September 2025
Last Modified:	23 Sep 2025 08:56
URI:	https://orca.cardiff.ac.uk/id/eprint/181223

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