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Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers
BACKGROUND: The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregiv...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2018
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5813368/ https://www.ncbi.nlm.nih.gov/pubmed/29444688 http://dx.doi.org/10.1186/s12904-018-0278-4 |
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author | Philip, Rekha Rachel Philip, Sairu Tripathy, Jaya Prasad Manima, Abdulla Venables, Emilie |
author_facet | Philip, Rekha Rachel Philip, Sairu Tripathy, Jaya Prasad Manima, Abdulla Venables, Emilie |
author_sort | Philip, Rekha Rachel |
collection | PubMed |
description | BACKGROUND: The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013–2015. METHODS: A descriptive study was conducted in the oldest community-based palliative clinic in Kerala. Data were collected from annual patient registers from 1996 to 2016 and patient case records during the period 2013–2015. RESULTS: While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%).Among patients registered during 2013–15, the median number of home visits from nurses and doctors in 12 months were five and one respectively. In the same cohort, twelve months’ post-enrolment, 56% of patients died, 30% were in continuing in active care and 7% opted out. Those who opted out of care were likely to be aged < 60 years, received one or less visit annually from a doctor or have a serious mental illness. 96% of patients had a care-giver at home, 85% of these care-givers being female. CONCLUSIONS: The changing dynamics over a 20-year period of this palliative care programme in Kerala, India, highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of Non Communicable Diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a cohort such as this one. |
format | Online Article Text |
id | pubmed-5813368 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-58133682018-02-16 Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers Philip, Rekha Rachel Philip, Sairu Tripathy, Jaya Prasad Manima, Abdulla Venables, Emilie BMC Palliat Care Research Article BACKGROUND: The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013–2015. METHODS: A descriptive study was conducted in the oldest community-based palliative clinic in Kerala. Data were collected from annual patient registers from 1996 to 2016 and patient case records during the period 2013–2015. RESULTS: While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%).Among patients registered during 2013–15, the median number of home visits from nurses and doctors in 12 months were five and one respectively. In the same cohort, twelve months’ post-enrolment, 56% of patients died, 30% were in continuing in active care and 7% opted out. Those who opted out of care were likely to be aged < 60 years, received one or less visit annually from a doctor or have a serious mental illness. 96% of patients had a care-giver at home, 85% of these care-givers being female. CONCLUSIONS: The changing dynamics over a 20-year period of this palliative care programme in Kerala, India, highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of Non Communicable Diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a cohort such as this one. BioMed Central 2018-02-14 /pmc/articles/PMC5813368/ /pubmed/29444688 http://dx.doi.org/10.1186/s12904-018-0278-4 Text en © The Author(s). 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Research Article Philip, Rekha Rachel Philip, Sairu Tripathy, Jaya Prasad Manima, Abdulla Venables, Emilie Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers |
title | Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers |
title_full | Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers |
title_fullStr | Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers |
title_full_unstemmed | Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers |
title_short | Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers |
title_sort | twenty years of home-based palliative care in malappuram, kerala, india: a descriptive study of patients and their care-givers |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5813368/ https://www.ncbi.nlm.nih.gov/pubmed/29444688 http://dx.doi.org/10.1186/s12904-018-0278-4 |
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