Stroke survivors' views on their priorities for upper-limb recovery and the availability of therapy services after stroke: a longitudinal, phenomenological study.

PURPOSE: Forty percent of stroke survivors have a persistent lack of function in the upper limb, causing significant disability. Most personal-care tasks and meaningful activities require bi-manual function of both upper limbs. However, lower-limb mobility is often viewed as the priority in stroke services. Perspectives of stroke survivors on priorities for upper-limb recovery and therapy have not been investigated in detail. Therefore, this study aimed to explore their views. MATERIALS AND METHODS: Thirteen stroke survivors each engaged in up to four semi-structured interviews over 18 months. A phenomenological approach guided the research. RESULTS: Three themes were identified. Priorities change on coming home: recovery of walking is a priority early after stroke but upper-limb recovery becomes equally important over time, particularly once living at home. Limited therapy services: therapy has a short duration, prioritizes lower-limb mobility, and is short-lived in the community; people feel abandoned by services. Active partners in recovery: stroke survivors want intermittent access to review and advice so they can be active partners with therapists to manage their upper-limb recovery. CONCLUSION: Therapy services should recognize stroke survivors' changing priorities and work with them as active partners in upper-limb recovery. Intermittent access to review and advice should be included in service design.Implications for rehabilitationStroke survivors' priorities may change over time from recovery of walking toward upper-limb recovery.Post-stroke services can be perceived as insufficient to meet the needs of stroke survivors who want to participate actively in rehabilitation of their upper limb.Stroke survivors may prefer services that are more flexible to provide regular review of their progress, access to guidance and support to self-manage their recovery.

The experience of upper-limb dysfunction after stroke: a phenomenological study.

BACKGROUND: Stroke can bring about a profound disruption to people's lives, but what is less understood is the effect that specific dysfunctions can have. The aim of this study was to explore stroke survivors' experiences of upper-limb dysfunction over time. METHODS: 13 adult stroke survivors engaged in a series of up to four semi-structured interviews over an 18-month period after stroke. Data were interpreted through a method based on framework analysis. An interpretive phenomenological approach guided the research. RESULTS: Upper-limb dysfunction brought substantial challenges for people, identified in a main theme of an altered way of life. Subordinate themes that contributed to this alteration were challenges in personal care, participating in meaningful and valued activities, and managing life roles and relationships. The second main theme was the disrupted self, with subordinate themes of feeling devalued, disrupted self-image and changes in identity. CONCLUSION: The impact of upper-limb dysfunction on people's lives after stroke should be understood and acknowledged by rehabilitation professionals. Restoring some functional upper-limb activity could play an important role in enabling a person to regain a meaningful life and a coherent sense of self after stroke.IMPLICATIONS FOR REHABILITATIONUpper-limb dysfunction after stroke, and the loss of bimanual hand function, can profoundly alter a person's life, rendering them unable to manage simple tasks of personal care, participate in valued activities and fulfil important life roles.These functional and social limitations can then disrupt their sense of self, with feelings of low self-worth, and changes in self-image and identity.It is important that these changes in stroke survivors' lives are acknowledged and understood by rehabilitation professionals. More prolonged periods of therapy for recovery of upper-limb function, or for developing compensatory strategies, should be considered so that people can regain some meaning in life and maintain a coherent sense of self.

Development and Content Validity of the Clinical Assessment of Body Alignment for Children With Cerebral Palsy.

PURPOSE: The purpose of this study is to describe the development and content validity of the clinical assessment of body alignment (CABA) to measure body alignment in children with cerebral palsy. METHODS: Content validity and clinical utility were examined through expert opinion of 283 pediatric physical therapists. Participants reviewed items as matching or not to the domain of body alignment. Clinical utility was evaluated on a 5-point scale. Means and standard deviation were calculated for each attribute. Fleiss' kappa examined interrater reliability of expert responses. RESULTS: Percentage agreement was high for 19 items and good for 1 item. Clinicians' ratings showed overall fair to good agreement. Four clinical utility attributes had a net importance score of more than 90%, although interrater reliability was low. CONCLUSION: Content validity of the CABA was supported. Construct validity, reliability, and responsiveness require further study. What this adds to the evidence: The CABA has potential to offer clinicians and researchers a clinically practical measure of postural alignment for children with cerebral palsy. Preliminary investigation of CABA shows good content validity. However, more studies to assess the assessments' psychometrics including construct validity, reliability, and responsiveness are required.