Experiences of stroke survivors and their carers living with a dysfunctional upper limb: An interpretative phenomenological study

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A large proportion of stroke survivors and their carers continue to live with a non-functioning upper limb, even after rehabilitation. The consequences of the non-functioning upper limb range across physical and psychosocial parameters, whilst also adversely affecting quality of life. Previous qualitative studies have examined the long-term affects of these sequelae on stroke survivors, however little evidence exists on the concurrent experiences of stroke survivors and their carers. Therefore, this study aimed to explore the lived experience and ongoing needs of carers and individuals with a non-functioning upper limb.

A phenomenological approach was selected to gain insight into experiential data. Participants were purposively selected from community stroke groups. Semi-structured, in-depth interviews were carried out with stroke survivors with non-functioning upper limbs, and their carers. An interview guide was developed in consultation with a public patient involvement group. Interview data was transcribed verbatim and analysed using the interpretative phenomenological analysis framework.

Three stroke survivors and their carers participated, yielding a total of 6 interviews. Four superordinate themes emerged from analysis of both patient and carer data: changing identities and relationships, a loss in independence resulting in physical and psychological confinement, stigma and the restrictive nature of the non-functioning upper limb, and a perceived lack of rehabilitation and information regarding recovery and expectations.

This research highlights the diverse and wide ranging impact of the lack of upper limb recovery on stroke survivors and their carers. It is worth noting the lack of clarity in expectations and information regarding upper limb recovery during the initial stage of rehabilitation
Original languageEnglish
Article number055
Pages (from-to)34
Number of pages1
JournalInternational Journal Of Stroke
Volume 10
Issue numberSupplement S5
Early online date23 Oct 2015
Publication statusPublished - Dec 2015


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