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

Shradha 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 Parsekar, Louise Meijering, Ajay Bailey, Suma Nair

International Development Studies

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

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
Volume	24
Issue number	5
DOIs	https://doi.org/10.31557/APJCP.2023.24.5.1651
Publication status	Published - 1 May 2023

Bibliographical 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’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.

Keywords

Breast cancer
In-depth interviews
India
burden of care
caregiving
qualitative study

UN SDGs

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

Access to Document

10.31557/APJCP.2023.24.5.1651Licence: CC BY-NC

APJCP_Volume 24_Issue 5_Pages 1651-1658Final published version, 295 KBLicence: CC BY-NC

https://journal.waocp.org/article_90624.html

Cite this

@article{b1242fc150ec4aefa6462464b48b0d0d,

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.",

keywords = "Breast cancer, In-depth interviews, India, burden of care, caregiving, qualitative study",

author = "Shradha Parsekar 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.",

year = "2023",

month = may,

day = "1",

doi = "10.31557/APJCP.2023.24.5.1651",

language = "English",

volume = "24",

pages = "1651--1658",

journal = "Asian Pacific Journal of Cancer Prevention",

issn = "1513-7368",

publisher = "Asian Pacific Organization for Cancer Prevention",

number = "5",

}

TY - JOUR

T1 - Perceptions and Experiences of Informal Caregivers of Breast Cancer Patients in South India: A Qualitative Study

AU - Parsekar, Shradha

AU - Meijering, Louise

AU - Bailey, Ajay

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.

AB - 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.

KW - Breast cancer

KW - In-depth interviews

KW - India

KW - burden of care

KW - caregiving

KW - qualitative study

UR - http://www.scopus.com/inward/record.url?scp=85160503918&partnerID=8YFLogxK

U2 - 10.31557/APJCP.2023.24.5.1651

DO - 10.31557/APJCP.2023.24.5.1651

M3 - Article

SN - 1513-7368

VL - 24

SP - 1651

EP - 1658

JO - Asian Pacific Journal of Cancer Prevention

JF - Asian Pacific Journal of Cancer Prevention

IS - 5

ER -

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

Abstract

Bibliographical note

Keywords

UN SDGs

Access to Document

Other files and links

Fingerprint

Cite this