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. 2017 Aug 14;16(1):40.
doi: 10.1186/s12904-017-0222-z.

Socio-cultural contexts of end- of- life conversations and decisions: bereaved family cancer caregivers' retrospective co-constructions

Jennifer Nyawira Githaiga  1 , Leslie Swartz  2
Affiliations

Socio-cultural contexts of end- of- life conversations and decisions: bereaved family cancer caregivers' retrospective co-constructions

Jennifer Nyawira Githaiga et al. BMC Palliat Care. .

Abstract

Background: End-of-life communication becomes increasingly difficult in terminal cancer, which inevitably entails conversations around dying and death. In resource-limited areas, the context of end-of-life communication is usually home-based palliative care comprising mostly women in the family who play critical roles as informal caregivers. This article examined the content and contexts of family end-of-life conversations and decisions based on the retrospective accounts of a sample of bereaved women family cancer caregivers in Nairobi, Kenya.

Method: An interpretative phenomenological analysis approach was utilized to explore pertinent end-of-life communication themes. Four mini focus group interviews with a total of 13 participants [n = 5; n = 3; n = 3; n = 2] were conducted.

Results: Two end-of-life themes, advance directives as preparedness for death, and initiating death talk were examined. Findings (a) illustrate the role of family dynamics in influencing the nature of end-of-life conversations and decisions (b) demonstrate the transitional nature of family caregiver roles, and (c) underscore the paradox of the critical role played by family members in palliative care versus their ill preparedness in dealing with end-of-life issues.

Conclusions: Findings are relevant in informing palliative psychosocial interventions and specifically the concerns and decisions of cancer patients and their families. This prompts further engagement with the question of how to equip family caregivers in resource-limited contexts for end of life care. Methodologically, these results demonstrate the possibility of simultaneous elucidation of individual experiences, interactive co-constructions and the socio-cultural contexts of experiences and meaning making processes in IPA research.

Keywords: Communication; End-of-life; Family caregivers; Focus groups; Palliative care.

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Conflict of interest statement

Ethics approval and consent to participate

Ethics clearance to conduct the larger study from which this article is developed was obtained from University of Cape Town Research Ethics Committee, Department of Psychology, which stipulated that a proposal of the intended research be submitted to the Ethics Committee for approval prior to embarking on fieldwork, and that the ethical principles of the Helsinki Declaration concerning research on human subjects are adhered to. Research participants were given adequate information about the purpose of the study, potential risks and benefits of the study, the procedures of the research including details about interviews, protection of participants’ confidentiality, the voluntary nature of their participation and the participants’ right to withdraw at any point during the study. In addition, JNG undertook to respect and safeguard information given by participants and to present this information with accuracy and in a manner that safeguards their privacy. Based on their comprehension of the above information, participants were requested to give their informed consent by each signing a written consent form prior to participating in the FGDs.

Consent for publication

Participants consented to the use of data gained from FGDs for academic research with the understanding that this information would be presented accurately, respectfully and in a manner that safeguards individuals’ privacy.

Competing interests

The authors declare that they have no competing interests.

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Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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