Oloyede, Lateefah and Preston, Nancy and Hughes, Sean (2021) Expressing end of life care wishes and preferences amongst Nigerian patients with advanced cancer and their family members : A grounded theory study. PhD thesis, Lancaster University.
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Abstract
Background: Expressing end of life care wishes and preferences is a vital component of Advance Care Planning (ACP) which facilitates the provision of end of life care that is consistent with the patient’s expressed values, beliefs and goals of care outcomes. There is an acknowledgement of the impact of contextual values on the process of expressing wishes and preferences. Aim: The aim of this study is to a gain a theoretical understanding of the process involved in expressing end of life care wishes and preferences based on the perspectives and experiences of advanced cancer patients and their family carers in Nigeria. Methods: Using a constructivist grounded theory study approach, fourteen qualitative interviews from eight patients with advanced cancer and six family members of patients with advanced cancer were analysed to construct a theoretical model that explains the process of expressing end of life care wishes and preferences in Nigeria. Results: “Rubbing minds together” explains a process by which patients with advanced cancer negotiate their way with their family members to facilitate expressing their end of life care wishes and preferences in the context of a cultural commitment to familial involvement in end of life decision making. The theory is composed of three interlinked components: controlling to seek relief, enduring and collaboration that acknowledges the ongoing overt and hidden compromises that occur in the end of life care communication in this context. Conclusion: This constructed theory emphasises the relational nature of end of life care communication in the African cancer context. This may increase healthcare professionals’ understanding and be crucial to achieving an end of life care context that acknowledges and encourages family members’ involvement and not only that of the patients, thereby enhancing end of life communication with Africans nearing the end of life.