Hoping and coping: Understanding the experience of people with malignant glioma

Abstract

Overall median survival for malignant glioma or ‘brain tumour’ is limited; few patients will survive longer than two years, while many will live in a prolonged state of dependency with high attendant care needs, early cognitive failure, and prognostic uncertainty. Little is currently known about people’s experiences with glioma across the treatment trajectory. The aim of this study is to describe and explain how people come to terms with, adapt to and cope with their illness from diagnosis through different stages of treatment, and how these experiences develop and change over time. Grounded theory method was used to capture the experiences of people with glioma across the treatment trajectory. Sixteen people with a recent diagnosis of glioma participated in repeated in-depth qualitative interviews at the start of treatment, end of treatment and 3-4 months post-treatment regarding their experiences of their illness journey, yielding a total of 43 interviews. Data were collected and analysed in tandem, and emerging findings guided sampling. Data were analysed using initial, focused, and theoretical coding procedures in order to develop a substantive theory detailing the experiences of people with glioma. This study resonates with work by Cavers et al. (2013) and Sterckx et al. (2015) who examined the experiences of glioma patients (the former also utilised repeat interviews), but is unique in its detailed illumination of the processes surrounding people’s ability to hope and cope when faced with terminal illness. This study is also unique in its identification of the influential roles of embodiment and uncertainty in the glioma experience. The participants’ primary concern throughout their illness was to make the most of daily life, while they were still well enough to do so. This required successfully coping with their illness on a day-to-day basis. Developing Salander’s (1996) descriptions of the creation and protection of hope in the experiences of glioma patients, this study found that hope, specifically hope for a better outcome than anticipated, was the key to enabling people to cope with the illness despite their knowledge of their dismal future. Participants created a ‘tolerable reality’ within which they could cope with the implications of their illness by cultivating and preserving hope for the future, exerting control over their thoughts and maintaining uncertainty regarding their anticipated outcomes. People with glioma maintain hope in order to cope, but also derive hope from their ability to cope. This study suggests that psychosocial interventions, particularly during the initial stages of treatment, should be directed at supporting patients’ ability to cope in the immediate sense, enabling them optimise their ability to make the most of daily life. The participants did not feel capable of making provisions for their decline or their death until 3-4 months post radiotherapy.