Community-based palliative care needs and barriers to access among cancer patients in rural north India: a Participatory action research
Abstract Background This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. Methods A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization...
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BMC
2024-10-01
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| Series: | BMC Palliative Care |
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| Online Access: | https://doi.org/10.1186/s12904-024-01572-7 |
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| author | Mayank Gupta Ankita Kankaria Liya E. Joshy Sandeep Singh Bhajan Lal Subhash Choudhary Sapna Marcus Anju Grewal Lajya Devi Goyal Rakesh Kakkar |
| author_facet | Mayank Gupta Ankita Kankaria Liya E. Joshy Sandeep Singh Bhajan Lal Subhash Choudhary Sapna Marcus Anju Grewal Lajya Devi Goyal Rakesh Kakkar |
| author_sort | Mayank Gupta |
| collection | DOAJ |
| description | Abstract Background This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. Methods A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used. Results A total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients’ and their families’ lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult. Conclusions The study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services. Trial registration Clinical Trial Registry of India (CTRI/2023/04/051357). |
| format | Article |
| id | doaj-art-dbd41563201945e3b74587cd2a20e595 |
| institution | OA Journals |
| issn | 1472-684X |
| language | English |
| publishDate | 2024-10-01 |
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| series | BMC Palliative Care |
| spelling | doaj-art-dbd41563201945e3b74587cd2a20e5952025-08-20T02:13:32ZengBMCBMC Palliative Care1472-684X2024-10-0123111710.1186/s12904-024-01572-7Community-based palliative care needs and barriers to access among cancer patients in rural north India: a Participatory action researchMayank Gupta0Ankita Kankaria1Liya E. Joshy2Sandeep Singh3Bhajan Lal4Subhash Choudhary5Sapna Marcus6Anju Grewal7Lajya Devi Goyal8Rakesh Kakkar9Department of Anaesthesiology, All India Institute of Medical SciencesDepartment of Community and Family Medicine, All India Institute of Medical SciencesProject Staff, C3PaC Project, All India Institute of Medical SciencesProject Staff, C3PaC Project, All India Institute of Medical SciencesProject Staff, C3PaC Project, All India Institute of Medical SciencesProject Staff, C3PaC Project, All India Institute of Medical SciencesDepartment of Radiation Oncology, All India Institute of Medical SciencesDepartment of Anaesthesiology, All India Institute of Medical SciencesDepartment of Obstetrics and Gynaecology, All India Institute of Medical SciencesDepartment of Community and Family Medicine, All India Institute of Medical SciencesAbstract Background This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. Methods A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used. Results A total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients’ and their families’ lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult. Conclusions The study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services. Trial registration Clinical Trial Registry of India (CTRI/2023/04/051357).https://doi.org/10.1186/s12904-024-01572-7CancerCommunityNorth IndiaPalliative careParticipatory action researchRural |
| spellingShingle | Mayank Gupta Ankita Kankaria Liya E. Joshy Sandeep Singh Bhajan Lal Subhash Choudhary Sapna Marcus Anju Grewal Lajya Devi Goyal Rakesh Kakkar Community-based palliative care needs and barriers to access among cancer patients in rural north India: a Participatory action research BMC Palliative Care Cancer Community North India Palliative care Participatory action research Rural |
| title | Community-based palliative care needs and barriers to access among cancer patients in rural north India: a Participatory action research |
| title_full | Community-based palliative care needs and barriers to access among cancer patients in rural north India: a Participatory action research |
| title_fullStr | Community-based palliative care needs and barriers to access among cancer patients in rural north India: a Participatory action research |
| title_full_unstemmed | Community-based palliative care needs and barriers to access among cancer patients in rural north India: a Participatory action research |
| title_short | Community-based palliative care needs and barriers to access among cancer patients in rural north India: a Participatory action research |
| title_sort | community based palliative care needs and barriers to access among cancer patients in rural north india a participatory action research |
| topic | Cancer Community North India Palliative care Participatory action research Rural |
| url | https://doi.org/10.1186/s12904-024-01572-7 |
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