Perceptions and Experiences of Informal Caregivers of Breast Cancer Patients in South India: A Qualitative Study

Shradha S. Parsekar; Louise Meijering; Ajay Bailey; Suma Nair

doi:10.31557/APJCP.2023.24.5.1651

Perceptions and Experiences of Informal Caregivers of Breast Cancer Patients in South India: A Qualitative Study

Shradha S. Parsekar
, Louise Meijering
, Ajay Bailey
, Suma Nair

Research output: Contribution to journal › Article › peer-review

1 Citation (Scopus)

Abstract

BACKGROUND: This study was conducted to explore the prevailing perceptions and experiences of caregiving burden among informal caregivers of women living with breast cancer in South India. METHODS: In-depth interviews were conducted among breast cancer care-receivers (n=35) and their informal caregivers (n=39) and a thematic analysis was used to analyze the data. Informal caregiver in the context of this study was defined as one who takes up the responsibility of an informal caregiving role, and were either self-identified or acknowledged by the care-receivers. RESULTS: Four main inductive themes in the domains of: emotional culpability, financial and workplace liability, psychosocial affliction, physical strain and health system demand were identified, that were associated with caregiver burden. CONCLUSION: Informal caregivers form an integral part of the cancer care continuum in India. It is recommended to factor in the identified themes while developing a caregiver needs assessment model in the context of caring for breast cancer patients in the Indian setting.

Original language	English
Pages (from-to)	1651-1658
Number of pages	8
Journal	Asian Pacific journal of cancer prevention : APJCP
Volume	24
Issue number	5
DOIs	https://doi.org/10.31557/APJCP.2023.24.5.1651
Publication status	Published - 01-05-2023

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

All Science Journal Classification (ASJC) codes

Epidemiology
Oncology
Public Health, Environmental and Occupational Health
Cancer Research

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10.31557/APJCP.2023.24.5.1651

Cite this

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title = "Perceptions and Experiences of Informal Caregivers of Breast Cancer Patients in South India: A Qualitative Study",

abstract = "BACKGROUND: This study was conducted to explore the prevailing perceptions and experiences of caregiving burden among informal caregivers of women living with breast cancer in South India. METHODS: In-depth interviews were conducted among breast cancer care-receivers (n=35) and their informal caregivers (n=39) and a thematic analysis was used to analyze the data. Informal caregiver in the context of this study was defined as one who takes up the responsibility of an informal caregiving role, and were either self-identified or acknowledged by the care-receivers. RESULTS: Four main inductive themes in the domains of: emotional culpability, financial and workplace liability, psychosocial affliction, physical strain and health system demand were identified, that were associated with caregiver burden. CONCLUSION: Informal caregivers form an integral part of the cancer care continuum in India. It is recommended to factor in the identified themes while developing a caregiver needs assessment model in the context of caring for breast cancer patients in the Indian setting.",

author = "Parsekar, \{Shradha S.\} and Louise Meijering and Ajay Bailey and Suma Nair",

note = "Funding Information: Authors would like to acknowledge Kasturba Medical College, Manipal for the internal support and the transdisciplinary Centre for Qualitative Methods, MAHE, Manipal for providing partial support towards translation of interview transcripts and training the first author in qualitative research. The first author is grateful for the Erasmus+ International Credit mobility grant that enabled her visit to University of Groningen, the Netherlands wherein the initial analysis of the study was undertaken. We also recognise Ms Neelavathi, Ms Shashiprabha, Ms. Sushma D{\textquoteright}Souza and Dr Divya Sussana Patil for their support and the study participants for their valuable time and insightful inputs. Publisher Copyright: {\textcopyright} This work is licensed under a Creative Commons Attribution-Non Commercial 4.0 International License.",

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doi = "10.31557/APJCP.2023.24.5.1651",

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AU - Nair, Suma

N1 - Funding Information: Authors would like to acknowledge Kasturba Medical College, Manipal for the internal support and the transdisciplinary Centre for Qualitative Methods, MAHE, Manipal for providing partial support towards translation of interview transcripts and training the first author in qualitative research. The first author is grateful for the Erasmus+ International Credit mobility grant that enabled her visit to University of Groningen, the Netherlands wherein the initial analysis of the study was undertaken. We also recognise Ms Neelavathi, Ms Shashiprabha, Ms. Sushma D’Souza and Dr Divya Sussana Patil for their support and the study participants for their valuable time and insightful inputs. Publisher Copyright: © This work is licensed under a Creative Commons Attribution-Non Commercial 4.0 International License.

PY - 2023/5/1

Y1 - 2023/5/1

N2 - BACKGROUND: This study was conducted to explore the prevailing perceptions and experiences of caregiving burden among informal caregivers of women living with breast cancer in South India. METHODS: In-depth interviews were conducted among breast cancer care-receivers (n=35) and their informal caregivers (n=39) and a thematic analysis was used to analyze the data. Informal caregiver in the context of this study was defined as one who takes up the responsibility of an informal caregiving role, and were either self-identified or acknowledged by the care-receivers. RESULTS: Four main inductive themes in the domains of: emotional culpability, financial and workplace liability, psychosocial affliction, physical strain and health system demand were identified, that were associated with caregiver burden. CONCLUSION: Informal caregivers form an integral part of the cancer care continuum in India. It is recommended to factor in the identified themes while developing a caregiver needs assessment model in the context of caring for breast cancer patients in the Indian setting.

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Perceptions and Experiences of Informal Caregivers of Breast Cancer Patients in South India: A Qualitative Study

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