AN EXPLORATION OF THE THEORETICAL UNDERSTANDING AND INDIVIDUAL EXPERIENCES OF INFORMAL CAREGIVING IN THE STROKE POPULATION

Abstract

This thesis explored the theoretical understanding and individual experiences of providing informal care following stroke. It consists of three papers: 1) a systematic scoping review, 2) an empirical study and 3) a personal and critical appraisal of the research process. The systematic scoping review (Paper 1) identified and thematically synthesised existing theories of informal caregiving in the stroke population. New knowledge was generated regarding the experience and psychological impact of providing informal care. Seventeen papers presenting thirteen distinct theories were identified and included. A thematic synthesis derived two overarching themes: Systemic and Cultural factors and A staged process. These contained three main themes 1) Adjustment to aspects of post-stroke life, 2) Emotional and psychological aspects of caring, 3) Carer needs and four subthemes that constituted stages across the stroke pathway of relevance to carers - 1) Stroke Event, 2) Discharge Preparation, 3) Initial Discharge Home, and 4) Long-term Home Living. The synthesised theoretical knowledge was considered with the aim of guiding stroke service improvements. The empirical study (Paper 2) explored the self-identification of informal carers, investigating how and when they start to identify with their caregiving role. Preferred terminology and experiences of support in relation to this role were also explored. Semi- structured interviews were completed with eighteen adults who had experience of providing informal care to a friend or family member following stroke. A template analysis approach to thematically analysing the data resulted in five main themes: 1) Adopting and adjusting to the care role, 2) Accessibility of support, 3) Perceptions of support, 4) Acceptability of care- related language and terminology, 5) Function of care-related language and terminology and related subthemes. Participants described the process of how and when they started to identify with the care role, including barriers and facilitators to this. Two main contrasting opinions around care-related terminology were revealed. Experiences and accessibility of support were discussed. Findings were discussed in relation to the development of support provision for informal carers of stroke survivors. Paper 3 provides a critical evaluation and personal reflections of the process of completing this research. This paper considers strengths and limitations of each thesis study. It also offers a critical reflective account of the positioning of these pieces of research in the wider literature, including their relevance and contributions to the profession of clinical psychology.

Date of Award	6 Jan 2025
Original language	English
Awarding Institution	The University of Manchester
Supervisor	Audrey Bowen (Supervisor) & Richard Brown (Supervisor)