Barriers and preferences in advance care planning: a mixed-methods study of end-stage kidney disease patients and caregivers in India
Abstract Objectives To understand preferences for illness-related information, decision-making roles, and barriers to Advance Care Planning (ACP) documentation among patients with End-stage Kidney Disease (ESKD) and their caregivers in India. Methods A convergent parallel mixed-methods study was con...
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BMC
2025-07-01
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| Series: | BMC Nephrology |
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| Online Access: | https://doi.org/10.1186/s12882-025-04354-2 |
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| author | Bharathi Naik Anuja Damani Arun Ghoshal Shankar Prasad Nagaraju Pankaj Singhai Swathi Nayak Ammunje Ravindra Prabhu Attur Naveen Salins |
| author_facet | Bharathi Naik Anuja Damani Arun Ghoshal Shankar Prasad Nagaraju Pankaj Singhai Swathi Nayak Ammunje Ravindra Prabhu Attur Naveen Salins |
| author_sort | Bharathi Naik |
| collection | DOAJ |
| description | Abstract Objectives To understand preferences for illness-related information, decision-making roles, and barriers to Advance Care Planning (ACP) documentation among patients with End-stage Kidney Disease (ESKD) and their caregivers in India. Methods A convergent parallel mixed-methods study was conducted from October 2022 to September 2023 at a tertiary care hospital in South India. Quantitative data were collected using a validated ACP questionnaire from 247 patient-caregiver dyads. Qualitative data were obtained from semi-structured interviews with 34 patients and 6 caregivers. Quantitative data were analyzed using descriptive and inferential statistics; qualitative data were analyzed thematically using Braun and Clarke’s framework. Results Most patients (90.7%) and caregivers (94.1%) preferred detailed illness-related information, yet ACP documentation interest was low (20.4% dialysis, 9.2% non-dialysis patients). The majority preferred collaborative decision-making involving family and clinicians. Barriers to ACP included limited awareness, emotional burden, and systemic challenges. Enablers included family support and provider guidance. Conclusions While interest in illness information and shared decision-making is high, ACP documentation remains limited. Tailored strategies are needed to promote ACP engagement. Practice implications Integrating culturally sensitive ACP discussions into routine nephrology care and involving families can improve ACP participation. |
| format | Article |
| id | doaj-art-dd0e448b3a434b43b3f3f0770334969a |
| institution | Kabale University |
| issn | 1471-2369 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Nephrology |
| spelling | doaj-art-dd0e448b3a434b43b3f3f0770334969a2025-08-20T03:42:34ZengBMCBMC Nephrology1471-23692025-07-0126111010.1186/s12882-025-04354-2Barriers and preferences in advance care planning: a mixed-methods study of end-stage kidney disease patients and caregivers in IndiaBharathi Naik0Anuja Damani1Arun Ghoshal2Shankar Prasad Nagaraju3Pankaj Singhai4Swathi Nayak Ammunje5Ravindra Prabhu Attur6Naveen Salins7Department of Renal Replacement Therapy and Dialysis Technology, Manipal College of Health Professions Manipal, Manipal Academy of Higher EducationDepartment of Palliative Medicine and Supportive Care, Kasturba Medical College Manipal, Manipal Academy of Higher EducationDepartment of Palliative Medicine and Supportive Care, Kasturba Medical College Manipal, Manipal Academy of Higher EducationDepartment of Nephrology, Kasturba Medical College Manipal, Manipal Academy of Higher EducationDepartment of Palliative Medicine, Sri Aurobindo Medical College and PG Institute, Sri Aurobindo UniversityDepartment of Nephrology, Kasturba Medical College Manipal, Manipal Academy of Higher EducationDepartment of Nephrology, Kasturba Medical College Manipal, Manipal Academy of Higher EducationDepartment of Palliative Medicine and Supportive Care, Kasturba Medical College Manipal, Manipal Academy of Higher EducationAbstract Objectives To understand preferences for illness-related information, decision-making roles, and barriers to Advance Care Planning (ACP) documentation among patients with End-stage Kidney Disease (ESKD) and their caregivers in India. Methods A convergent parallel mixed-methods study was conducted from October 2022 to September 2023 at a tertiary care hospital in South India. Quantitative data were collected using a validated ACP questionnaire from 247 patient-caregiver dyads. Qualitative data were obtained from semi-structured interviews with 34 patients and 6 caregivers. Quantitative data were analyzed using descriptive and inferential statistics; qualitative data were analyzed thematically using Braun and Clarke’s framework. Results Most patients (90.7%) and caregivers (94.1%) preferred detailed illness-related information, yet ACP documentation interest was low (20.4% dialysis, 9.2% non-dialysis patients). The majority preferred collaborative decision-making involving family and clinicians. Barriers to ACP included limited awareness, emotional burden, and systemic challenges. Enablers included family support and provider guidance. Conclusions While interest in illness information and shared decision-making is high, ACP documentation remains limited. Tailored strategies are needed to promote ACP engagement. Practice implications Integrating culturally sensitive ACP discussions into routine nephrology care and involving families can improve ACP participation.https://doi.org/10.1186/s12882-025-04354-2Advance care planningEnd-stage kidney diseaseDialysisIndiaPatient-centered careFamily involvement |
| spellingShingle | Bharathi Naik Anuja Damani Arun Ghoshal Shankar Prasad Nagaraju Pankaj Singhai Swathi Nayak Ammunje Ravindra Prabhu Attur Naveen Salins Barriers and preferences in advance care planning: a mixed-methods study of end-stage kidney disease patients and caregivers in India BMC Nephrology Advance care planning End-stage kidney disease Dialysis India Patient-centered care Family involvement |
| title | Barriers and preferences in advance care planning: a mixed-methods study of end-stage kidney disease patients and caregivers in India |
| title_full | Barriers and preferences in advance care planning: a mixed-methods study of end-stage kidney disease patients and caregivers in India |
| title_fullStr | Barriers and preferences in advance care planning: a mixed-methods study of end-stage kidney disease patients and caregivers in India |
| title_full_unstemmed | Barriers and preferences in advance care planning: a mixed-methods study of end-stage kidney disease patients and caregivers in India |
| title_short | Barriers and preferences in advance care planning: a mixed-methods study of end-stage kidney disease patients and caregivers in India |
| title_sort | barriers and preferences in advance care planning a mixed methods study of end stage kidney disease patients and caregivers in india |
| topic | Advance care planning End-stage kidney disease Dialysis India Patient-centered care Family involvement |
| url | https://doi.org/10.1186/s12882-025-04354-2 |
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