Awareness and attitudes of primary caregivers toward end-of-life care in advanced cancer patients: A cross-sectional study

• Published in: Indian journal of palliative care Vol. 27; no. 1; pp. 126 - 132
• Main Authors: Burman, Sourav, Garg, Rakesh, Bhatnagar, Sushma, Mishra, Seema, Kumar, Vinod, Bharati, Sachidanand, Gupta, Nishkarsh
• Format: Journal Article
• Language: English
• Published: United States Wolters Kluwer India Pvt. Ltd 01-01-2021; Medknow Publications and Media Pvt. Ltd; Scientific Scholar; Wolters Kluwer - Medknow
• Subjects: Attitudes; Cancer; Cancer patients; Caregivers; Cross-sectional studies; Health care access; Home health care; Knowledge; Oncology, Experimental; Original; Palliative care; Palliative treatment; Questionnaires; India; awareness; Attitude; caregiver; cancer; terminal; palliative care; end-of-life care
• ISSN: 0973-1075; 1998-3735
• DOI: 10.4103/IJPC.IJPC_226_20

Introduction: Awareness of end-of-life care (EOLC) has been at grass root level in our country. The caregivers are clueless about the concept of comfort care and that terminally ill cancer patients need care at home rather than the paraphernalia of the hospital ward. The basic aim of the study was to assess the awareness of the EOLC in the caregivers of the advanced cancer patients. Methods: After Ethics Committee approval, this prospective cross-sectional observational study was conducted among primary caregivers of patients receiving palliative care for advanced cancer. The primary caregiver was identified and written informed consent was obtained. The questionnaire for assessing awareness and attitudes of primary caregivers toward EOLC in advanced cancer patients was prepared and validated. The standardized study questionnaire was completed by the primary caregiver assisted by the researcher. The categorical data were analyzed using Fisher's exact test and Chi-square tests. The intergroup correlation was done using the Chi-square and nonparametric tests. Results: The results showed that only mere 26% of caregivers were aware of the term palliative care. The female population was more knowledgeable about EOLC, with 68% of them willing to initiate the same. The rural population was more willing to adopt palliative care (47%) and was more receptive about discontinuing aggressive definitive therapy. Conclusion: We conclude that the awareness about EOLC remains poor in caregiver if patients with advanced cancer in spite of good awareness of the disease. The consequences of the outcome of disease, EOLC understanding, futility for definitive care, acceptability, and understanding of palliative care lacked in most of the caregivers.