The Carers’ Journey: Exploring the Experience of Informal Carers of Patients with a Primary Malignant Brain Tumour

Abstract

The research uses a grounded theory methodology involving 22 in-depth qualitative interviews with informal carers. The principle of constant comparison was used to analyse the data, resulting in the generation of six themes. The findings identify the carers’ journey as an emotional and psychosocial experience that is at times completely shocking, baffling, overwhelming but also rewarding. Although the concept of a ‘journey’ is displayed in a linear fashion the journey is circuitous rather than linear and different milestones in the journey may be visited and re-visited at critical moments during the caring career. Six themes are identified, which are grounded in the data namely: getting the diagnosis and the realisation of what is involved; preparing oneself and gaining knowledge about PMBT by gathering information; enlisting emotional and practical support to sustain them on their journey; adapting to the changes in the person being cared for that cause changes in the caring role; surviving and managing, and strategies of coping.

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