The effect of a dysfunctional upper limb on community‐dwelling stroke survivors and their carers: An interpretative phenomenological analysis

OBJECTIVES: The poststroke upper limb continues to pose a myriad of physical and psychological challenges for patients and caregivers. To optimize existing services, this study firstly aimed to explore the experiences of both stroke survivors and caregivers and secondly identify their ongoing needs. METHODS: A qualitative approach was utilized for this study. Six participants (three stroke survivors and three caregivers) were purposively sampled from community stroke groups. Semi structured interviews were utilized to collect experiential data, which were analysed using an interpretative phenomenological approach. RESULTS: Three master themes emerged from data analysis: "Finding a way forwards from a poor start," "The battle with the upper-limb," and "Relationships with self and society." All participants, seemingly affected by disappointing services, expressed negative views of rehabilitation. Misplaced or persistent hope, losses in control, and reduced autonomy may have contributed to poor functional outcomes and perceptions of rehabilitation services. The complex physical and psychological impact of the experience of the dysfunctional upper limb was also associated with ongoing and unmet support needs for stroke survivors and carers. CONCLUSIONS: Healthcare professionals may consider the varying impact of the dysfunctional upper limb during decision-making and treatment planning, particularly during acute rehabilitation. Future research could explore therapists' perceptions and experiences of upper-limb rehabilitation during this period.