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

Abstract

Aim

To understand how people with stroke and carers adapt over time, and how health professionals support transition to home.

Method

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.

Findings

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) importance of team involvement; ii) differences in perceived roles within the triad; iii) differences in expectations and collaboration within the triad and iv) planning a different future. 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.

Conclusion

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 REHABILITATION

• Divergence 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.

Keywords:

• Stroke
• caregivers
• family
• adaptation
• psychological
• goals
• qualitative research

Acknowledgements

We acknowledge the participants for their contribution to this study. We also acknowledge the contribution of António Manuel Marques, Eduardo Brazete Cruz, Gabriela Colaço and Sarah Pearson with excerpt translations from the Portuguese recorded interviews.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

Funding was obtained from PROTEC – Programa de Apoio à Formação Avançada de Docentes do Ensino Superior Politécnico (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].