TY - JOUR
T1 - Translation and cross-cultural adaptation of the Integrated Palliative Care Outcome Scale in Hindi
T2 - Toward capturing palliative needs and concerns in Hindi speaking patients
AU - Bhardwaj, Tushti
AU - Chambers, Rachel L.
AU - Watson, Harry
AU - Srividya, null
AU - Higginson, Irene J.
AU - Hocaoglu, Mevhibe B.
N1 - Funding Information:
The authors express sincere thanks to CanSupport for extending support for implementation of the project. Our special thanks to Dr. Reena, Head of Home care teams at CanSupport for all coordination and facilitating data collection in their premises. We thank all professionals, caregivers, patients, translators who gave us their precious time during this project. Authors also thank research volunteers Ms. Sony Kumari and Ms. Renu who assisted us during focus group discussions. IJH is a National Institute for Health Research (NIHR) Emeritus Senior Investigator and is supported by the NIHR Applied Research Collaboration (ARC) South London (SL) at King’s College Hospital National Health Service Foundation Trust. IJH leads the Palliative and End of Life Care theme of the NIHR ARC SL and co-leads the national theme in this. MBH is supported by the NIHR ARC SL and RC is a NIHR pre-doctoral fellow. The views expressed in this article are those of the authors and not necessarily those of the NIHR, or the Department of Health and Social Care. MBH is also supported by a Fulbright Grant under the provisions of the Mutual Educational and Cultural Exchange Act of 1961 (as amended), the FULBRIGHT PROGRAM, administered by the Bureau of Educational and Cultural Affairs, United States Department of State with the cooperation of the Institute of International Education, the views expressed in this article are those of the authors and not necessarily the Government of the United States or any agency representing it has endorsed the conclusions or approved the contents of the publication. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Support was from the National Institute for Health Research (NIHR), Applied Research Collaboration, South London, hosted at King’s College Hospital NHS Foundation Trust, Palliative Outcome Scale Development Team and Cicely Saunders International (Registered Charity No. 1087195). The funders of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report.
Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Support was from the National Institute for Health Research (NIHR), Applied Research Collaboration, South London, hosted at King’s College Hospital NHS Foundation Trust, Palliative Outcome Scale Development Team and Cicely Saunders International (Registered Charity No. 1087195). The funders of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report.
Funding Information:
The authors express sincere thanks to CanSupport for extending support for implementation of the project. Our special thanks to Dr. Reena, Head of Home care teams at CanSupport for all coordination and facilitating data collection in their premises. We thank all professionals, caregivers, patients, translators who gave us their precious time during this project. Authors also thank research volunteers Ms. Sony Kumari and Ms. Renu who assisted us during focus group discussions. IJH is a National Institute for Health Research (NIHR) Emeritus Senior Investigator and is supported by the NIHR Applied Research Collaboration (ARC) South London (SL) at King’s College Hospital National Health Service Foundation Trust. IJH leads the Palliative and End of Life Care theme of the NIHR ARC SL and co-leads the national theme in this. MBH is supported by the NIHR ARC SL and RC is a NIHR pre-doctoral fellow. The views expressed in this article are those of the authors and not necessarily those of the NIHR, or the Department of Health and Social Care. MBH is also supported by a Fulbright Grant under the provisions of the Mutual Educational and Cultural Exchange Act of 1961 (as amended), the FULBRIGHT PROGRAM, administered by the Bureau of Educational and Cultural Affairs, United States Department of State with the cooperation of the Institute of International Education, the views expressed in this article are those of the authors and not necessarily the Government of the United States or any agency representing it has endorsed the conclusions or approved the contents of the publication.
Publisher Copyright:
© The Author(s) 2023.
PY - 2023/3
Y1 - 2023/3
N2 - Background: Culturally relevant patient-centered outcomes tools are needed to identify the needs of patients and to assess their palliative care concerns. Aim: To translate and culturally adapt the Integrated Palliative Care Outcome Scale (IPOS) into Hindi. Design: The study applied a standardized methodology entailing six phases for translation and content validation: equivalence setting through a three-step process; forward translation; blind backward translation; expert review by a panel of the POS team; cognitive de-briefing with patients; and proof-reading of the final tool. All interviews and focus groups were audio-recorded, transcribed and analyzed using content analysis. Setting/participants: (1) Healthcare professionals including doctors, nurses, psychologists, counselors, and volunteers working in Indian palliative care settings with expertise in both English and Hindi languages; (2) Hindi speaking patients diagnosed with cancer who were receiving palliative care in community settings. Caregivers, palliative care experts, and language translators contributed to the translation procedure. Results: Phrases like nausea, poor appetite, drowsiness, and depression were difficult to translate into Hindi. Response categories “occasional” and “sometimes” were overlapping. All items, instructions and response categories were simple to understand. A visual thermometer is a unique feature of Hindi IPOS to facilitate responses from less educated patients. Conclusion: Hindi IPOS has face and content validity for use in clinical practice and research. The Hindi IPOS has implications beyond Indian palliative care settings. Millions of Hindi speakers can now respond to IPOS, and have a tool for communicating their palliative care needs in their mother tongue to inform patient-centered care.
AB - Background: Culturally relevant patient-centered outcomes tools are needed to identify the needs of patients and to assess their palliative care concerns. Aim: To translate and culturally adapt the Integrated Palliative Care Outcome Scale (IPOS) into Hindi. Design: The study applied a standardized methodology entailing six phases for translation and content validation: equivalence setting through a three-step process; forward translation; blind backward translation; expert review by a panel of the POS team; cognitive de-briefing with patients; and proof-reading of the final tool. All interviews and focus groups were audio-recorded, transcribed and analyzed using content analysis. Setting/participants: (1) Healthcare professionals including doctors, nurses, psychologists, counselors, and volunteers working in Indian palliative care settings with expertise in both English and Hindi languages; (2) Hindi speaking patients diagnosed with cancer who were receiving palliative care in community settings. Caregivers, palliative care experts, and language translators contributed to the translation procedure. Results: Phrases like nausea, poor appetite, drowsiness, and depression were difficult to translate into Hindi. Response categories “occasional” and “sometimes” were overlapping. All items, instructions and response categories were simple to understand. A visual thermometer is a unique feature of Hindi IPOS to facilitate responses from less educated patients. Conclusion: Hindi IPOS has face and content validity for use in clinical practice and research. The Hindi IPOS has implications beyond Indian palliative care settings. Millions of Hindi speakers can now respond to IPOS, and have a tool for communicating their palliative care needs in their mother tongue to inform patient-centered care.
KW - cancer patients
KW - cross-cultural comparison
KW - end of life care
KW - focus groups
KW - India
KW - palliative care
KW - Patient reported outcome measures
UR - http://www.scopus.com/inward/record.url?scp=85147441104&partnerID=8YFLogxK
U2 - 10.1177/02692163221147076
DO - 10.1177/02692163221147076
M3 - Article
C2 - 36719047
AN - SCOPUS:85147441104
SN - 0269-2163
VL - 37
SP - 391
EP - 401
JO - Palliative Medicine
JF - Palliative Medicine
IS - 3
ER -
