From recovery to regaining control of life: the perspectives of people with stroke, their carers and health professionals

Carla Mednes Pereira, Nan Greenwood, Fiona Jones

    Research output: Contribution to journalArticlepeer-review

    Abstract

    To understand how people with stroke and carers adapt over time, and how health professionals support transition to home. A multi-perspective, prospective, qualitative, longitudinal study was conducted using in-depth semi-structured interviews one and six months after inpatient discharge. Twenty-four participants (eight triads, including people with stroke, carers and health professionals) were included. Thematic and narrative analysis facilitated identification of cross-cutting themes according to individual trajectories post-stroke. A major theme: "regaining control of life" suggested a shift in perspective after six months at home. Four sub-themes help to understand the triads' perspectives over time: i) ii) iii) and iv) . People who were involved in supporting adaptation and rehabilitation processes were reported differently between triads and over time, showing the complexity of interrelations. A reduction in professional involvement was matched by changes in participants' goals and expectations. Findings suggest the importance of a dyadic perspective and a gradual increase in people with stroke and carers' active engagement. Professionals' approach throughout rehabilitation should be modified according to people with stroke and carers' changing needs and expectations.IMPLICATIONS FOR REHABILITATIONDivergence in perspectives about priorities and goals between the person with stroke their carers and healthcare professionals can lead to the creation of different agendas within rehabilitation.An open dialogue and decision-making process that involves both the person with stroke and carers is highly recommended for the identification of shared rehabilitation goals and to support ongoing recovery post discharge.A tailored approach to rehabilitation is required which focusses on shared priorities and includes individual or collective support for the person with stroke and their carers.Ongoing consultation about the desires of the person with stroke about rehabilitation, priorities and goals is important in order to tailor the professional approach to the stage individuals are at with their coping and adjustment post stroke.
    Original languageEnglish
    Pages (from-to)2897-2908
    JournalDisability and Rehabilitation
    Volume43
    Issue number20
    Early online date8 Feb 2020
    Publication statusPublished - 2021

    Bibliographical note

    Note: This work was supported by PROTEC : Programa de Apoio a Formacao Avancada de Docentes do Ensino Superior Politecnico (literally "Programme to Support the Advanced Studies of Higher Education Teachers"), supported by the Portuguese Government - Directorate of Higher Education and the Polytechnic Institute of Setubal (SFRH/PROTEC/67867/2010).

    Keywords

    • Allied health professions and studies

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