Upper limb recovery after stroke: the stroke survivors' perspective

Purpose. This study investigated stroke survivors' perspective of upper limb recovery after stroke. The aim was to determine factors other than medical diagnosis and co-morbidities that contribute to recovery. The objectives were to explore how stroke survivors define recovery, identify factors they believe influence recovery and determine strategies used to maximize upper limb recovery.

Method. A qualitative study consisting of three focus groups and two in-depth interviews was conducted with stroke survivors (n = 19) and spouses (n = 9) in metropolitan, regional and rural Queensland, Australia. Data were analysed using principles of grounded theory.

Results. Stroke survivors maximize upper limb recovery by 'keeping the door open' a process of continuing to hope for and work towards improvement amidst adjusting to life with stroke. They achieve this by 'hanging in there', 'drawing on support from others', 'getting going and keeping going with exercise', and 'finding out how to keep moving ahead'.

Conclusions. This study provides valuable insight into the personal experience of upper limb recovery after stroke. It highlights the need to develop training strategies that match the needs and aspirations of stroke survivors and that place no time limits on recovery. It reinforces the benefits of stroke support groups and advocates their incorporation into stroke recovery services. These findings can be used to guide both the development and evaluation of stroke survivor centred upper limb training programmes.