Exploring the occupational performance and performance patterns of caregivers of clients who have sustained a stroke

Abstract

Background: Stroke is the leading cause of long-term disability worldwide, often resulting in significant physical, cognitive, and emotional impairments that require ongoing support (Béjot et al., 2016; De Wit et al., 2017). Informal caregivers play a crucial role in supporting stroke survivors; however, caregiving responsibilities can significantly disrupts their own occupational performance, routines, and overall well-being (Bugge et al., 1999; Tziaka et al., 2024). Aims: This study aimed to explore the lived experiences of informal caregivers of stroke survivors in Malta. It specifically examined how caregiving responsibilities impact caregivers’ occupational performance, performance patterns, and well-being. Method: A qualitative research design was adopted. Participants were recruited using purposive sampling and were required to be aged 18 or over and provide daily or weekly unpaid care to a person who has sustained a stroke within the past five years. Data were collected through semi-structured interviews with six informal caregivers. Interviews were audio-recorded, transcribed verbatim, and analysed using Braun and Clarke’s (2006) thematic analysis. Findings: Five main themes were identified: ‘A Drastic Change in Daily Routine’, ‘Changes in Role and Identity’, ‘Financial Constraints and Employment’, ‘Impact on Physical, Social, and Emotional Wellbeing’, and ‘Limited Time for Self and Leisure’. Participants described a transition into a continuous caregiving role which disrupted their previous roles and routines. Caregivers experienced physical exhaustion, emotional distress, and social isolation, alongside financial strain due to reduced employment. Many reported giving up meaningful activities and leisure occupations, resulting in occupational imbalance and reduced wellbeing. Despite these challenges, some caregivers demonstrated resilience through personal coping strategies and support from family networks. Discussion: The findings highlight the significant and multifaceted impact of caregiving on occupational performance and well-being. Caregiving responsibilities often lead to occupational disruption, role redefinition, and reduced engagement in meaningful occupations, consistent with existing literature (Knecht-Sabres et al., 2016; Tziaka et al., 2024). These challenges emphasise the importance of adopting a client-centred, occupation focused approach that includes caregivers as active participants in rehabilitation. The study also highlights the need for continued occupational therapy support beyond discharge to promote occupational balance, support role adaptation, and improve caregiver well-being. However, the implementation of such support may be influenced by resource and service limitations.