“A proof of life” through transition from hospital to home after a stroke in a Portuguese setting - a multi-perspective, longitudinal qualitative study

ABSTRACT

Purpose

The impact of a stroke is particularly evident during the transition home, with reported unmet needs. However, little is known about post-stroke adaptation in Portugal. This study aimed to understand how Portuguese people with stroke and their informal carers/family adapt over time, and how health professionals support their adaptation.

Methods

A multi-perspective, longitudinal qualitative study was conducted using in-depth semi-structured interviews one and six months after inpatient discharge. A purposive sample of 24 participants (8 triads) participated. Thematic and narrative analysis strategies were used.

Results

Three themes were identified: Managing change over time; Balancing support over time; Changing priorities. These suggest the importance of time and gradual adjustment of health professionals’ approach throughout the rehabilitation process tailored to people with stroke’ and carers’ needs. Both valued positive thoughts and support from others to adjust life goals and find a balance between a mutual/bidirectional support and time for themselves.

Conclusions

Findings show that the manner in which changes after a stroke are approached may be positively transformed to provide strength. As a result of the deeper understanding gained from this study, health professionals may be better placed to acknowledge the needs of people with stroke and carers and find effective ways of supporting them.

KEYWORDS:

• Stroke
• caregivers
• adaptation
• home transition
• rehabilitation

Acknowledgements

The authors appreciatively acknowledge the families and health professionals who agreed to participate in this study, and health institutions that collaborated with this research.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was supported by the Directorate of Higher Education - Portuguese Government, and the Polytechnic Institute of Setubal- PROTEC programme, under grant number: SFRH/PROTEC/67867/2010, and this paper was financed by Instituto Politécnico de Setúbal.

Notes on contributors

Carla Mendes Pereira

Carla Mendes Pereira is an adjunct lecturer at the Physiotherapy department at Health School of the Polytechnic Institute of Setúbal (IPS). She has a PhD in Rehabilitation. Her research interests are in stroke rehabilitation and patient-centred practice.

Nan Greenwood

Nan Greenwood is an emerita professor at the Faculty of Health, Science, Social Care and Education at Kingston University. Her research interests are older people, carers, dementia and stroke.

Fiona Jones

Fiona Jones is a professor of rehabilitation research at the Education at Kingston University and St George’s: University of London and the Population Health Institute. She is CEO and Founding Director of Bridges self-management programme. Her research interests are self-management and co-production in the rehabilitation of people with complex disabilities.