PURPOSE: This study described stroke survivors' experiences of upper limb post-stroke sensory impairment (ULPSSI) and its rehabilitation. METHODS: A qualitative descriptive study of 15 stroke survivors with ULPSSI using semi-structured interviews. A focus group of eight survivors reviewed thematic outcomes. Analysis was completed by three authors. RESULTS: Three themes emerged: (1) What happened to my hand?: A description of the significant impact of sensory impairments on survivors roles and participation; (2) I was only just getting started: Survivors felt sensory impairments and the upper limb were ignored in rehabilitation and described being left on their own to devise their own rehabilitation; and (3) If I work hard then maybe someday: Survivors felt sensory impairments recovered slowly and was aided by working towards recovery and maintaining hope. CONCLUSIONS: Sensory impairments are significant for survivors and are deserving of greater clinical and research attention. In particular, assessments and interventions need further development and testing. This study's findings revealed the need to ascertain individual survivors' preference for involvement in decision making related to their rehabilitation planning. It also found survivors view recovery as extending well beyond current rehabilitation frameworks, necessitating further description of recovery and re-evaluation of service delivery to address survivors' needs. IMPLICATIONS FOR REHABILITATION: Sensory impairments significantly impact stroke survivors' roles and participation. Remediation of sensory impairments is important to survivors, but seems to be ignored in the rehabilitation process. Individual survivors' preference for involvement in decision making related to their rehabilitation planning should be ascertained. Stroke survivors feel left on their own to address their upper limb impairments long after rehabilitation services have ended. The development of services beyond the normal rehabilitation timeframes is warranted.
PURPOSE: This study described stroke survivors' experiences of upper limb post-stroke sensory impairment (ULPSSI) and its rehabilitation. METHODS: A qualitative descriptive study of 15 stroke survivors with ULPSSI using semi-structured interviews. A focus group of eight survivors reviewed thematic outcomes. Analysis was completed by three authors. RESULTS: Three themes emerged: (1) What happened to my hand?: A description of the significant impact of sensory impairments on survivors roles and participation; (2) I was only just getting started: Survivors felt sensory impairments and the upper limb were ignored in rehabilitation and described being left on their own to devise their own rehabilitation; and (3) If I work hard then maybe someday: Survivors felt sensory impairments recovered slowly and was aided by working towards recovery and maintaining hope. CONCLUSIONS:Sensory impairments are significant for survivors and are deserving of greater clinical and research attention. In particular, assessments and interventions need further development and testing. This study's findings revealed the need to ascertain individual survivors' preference for involvement in decision making related to their rehabilitation planning. It also found survivors view recovery as extending well beyond current rehabilitation frameworks, necessitating further description of recovery and re-evaluation of service delivery to address survivors' needs. IMPLICATIONS FOR REHABILITATION: Sensory impairments significantly impact stroke survivors' roles and participation. Remediation of sensory impairments is important to survivors, but seems to be ignored in the rehabilitation process. Individual survivors' preference for involvement in decision making related to their rehabilitation planning should be ascertained. Stroke survivors feel left on their own to address their upper limb impairments long after rehabilitation services have ended. The development of services beyond the normal rehabilitation timeframes is warranted.