Chronicles of informal caregiving in cancer: using ‘The Cancer Family Caregiving Experience’ model as an explanatory framework

Abstract

Cancer caregiving has emerged as a dominant focus of research in recent years. A striking feature of this vast amount of literature is that it is static, examining certain points of the cancer trajectory, mostly the diagnosis and palliative care. Only The Cancer Caregiving Experience Model conceptualised the caregiving experience and explored the conceptual implications of cancer family caregiving research. The data from this paper aim to empirically support the Cancer Caregiving Experience model, by exploring the cancer caregiving experience longitudinally. Semi-structured interviews with 53 caregivers were carried out at patient's diagnosis (T1), 3 months (T2), 6 months (T3) and 12 months (T4) post diagnosis. Analysis of 139 interviews generated four themes that reflected a complex and dynamic process. The themes that mapped those of the model were "Primary stressors", "Secondary stressors", "Appraisal", "Cognitive-Behavioural responses" and "Health and Well Being". The study adds empirical support to The Cancer Caregiving Experience Model and confirms that different primary and secondary stressors influence how the caregivers perceive the caregiving demands, the coping mechanisms they employ and their health and well being during the cancer trajectory. Access to support services should be offered to all the caregivers from as early as the diagnosis period and take into account their specific needs.