Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 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.

PubMed Disclaimer

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.

Publisher’s Note

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

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Almack K, Cox K, Moghaddam N, Seymour J. After you: conversations between patients and healthcare professionals in planning for end of life care. BMC Palliat Care. 2012;11:15. doi: 10.1186/1472-684X-11-15. - DOI - PMC - PubMed
    1. Belanger E, Rodriguez C, Groleau D, Legare F, Macdonald ME, Marchand R. Initiating decision-making conversations in palliative care: an ethnographic discourse analysis. BMC Palliat Care. 2014;13:63. doi: 10.1186/1472-684X-13-63. - DOI - PMC - PubMed
    1. Dev R, Coulson L, Del Fabbro E, Palla SL, Yennurajalingam S, Rhondali W, Bruera E. A prospective study of family conferences: effects of patient presence on emotional expression and end-of-life discussions. J Pain Symptom Manag. 2013;46(4):536–545. doi: 10.1016/j.jpainsymman.2012.10.280. - DOI - PubMed
    1. IM F, Stajduhar KI, Outcalt L. What family members learn when providing care at the end of life: a qualitative secondary analysis of multiple datasets. Palliat Support Care. 2015;13(3):425–433. doi: 10.1017/S1478951513001168. - DOI - PubMed
    1. Wallace CI. Family communication and decision making at the end of life: a literature review. Palliat Support Care. 2015;13(3):815–825. doi: 10.1017/S1478951514000388. - DOI - PubMed

MeSH terms