Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers
| dc.contributor.author | Philip, Rekha Rache | |
| dc.contributor.author | Philip, Sairu | |
| dc.contributor.author | Tripathy, Jaya Prasad | |
| dc.contributor.author | Manima, Abdulla | |
| dc.contributor.author | Venables, Emilie | |
| dc.date.accessioned | 2018-04-18T07:47:52Z | |
| dc.date.available | 2018-04-18T07:47:52Z | |
| dc.date.issued | 2018-02-14 | |
| dc.date.updated | 2018-04-09T15:08:03Z | |
| dc.description.abstract | 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. | |
| dc.identifier.apacitation | Philip, R. R., Philip, S., Tripathy, J. P., Manima, A., & Venables, E. (2018). Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers. <i>BMC Palliative Care</i>, http://hdl.handle.net/11427/27802 | en_ZA |
| dc.identifier.chicagocitation | Philip, Rekha Rache, Sairu Philip, Jaya Prasad Tripathy, Abdulla Manima, and Emilie Venables "Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers." <i>BMC Palliative Care</i> (2018) http://hdl.handle.net/11427/27802 | en_ZA |
| dc.identifier.citation | Philip, R. R., Philip, S., Tripathy, J. P., Manima, A., & Venables, E. (2018). Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers. BMC palliative care, 17(1), 26. | |
| dc.identifier.ris | TY - Journal Article AU - Philip, Rekha Rache AU - Philip, Sairu AU - Tripathy, Jaya Prasad AU - Manima, Abdulla AU - Venables, Emilie AB - 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. DA - 2018-02-14 DB - OpenUCT DO - 10.1186/s12904-018-0278-4 DP - University of Cape Town J1 - BMC Palliative Care LK - https://open.uct.ac.za PB - University of Cape Town PY - 2018 T1 - Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers TI - Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers UR - http://hdl.handle.net/11427/27802 ER - | en_ZA |
| dc.identifier.uri | http://dx.doi.org/10.1186/s12904-018-0278-4 | |
| dc.identifier.uri | http://hdl.handle.net/11427/27802 | |
| dc.identifier.vancouvercitation | Philip RR, Philip S, Tripathy JP, Manima A, Venables E. Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers. BMC Palliative Care. 2018; http://hdl.handle.net/11427/27802. | en_ZA |
| dc.language.iso | en | |
| dc.publisher | BioMed Central | |
| dc.publisher.department | Department of Public Health and Family Medicine | en_ZA |
| dc.publisher.faculty | Faculty of Health Sciences | en_ZA |
| dc.publisher.institution | University of Cape Town | |
| dc.rights.holder | The Author(s). | |
| dc.source | BMC Palliative Care | |
| dc.source.uri | https://bmcpalliatcare.biomedcentral.com/ | |
| dc.subject.other | Home-based care | |
| dc.subject.other | Palliative care | |
| dc.subject.other | Community-based care | |
| dc.subject.other | Care-givers | |
| dc.subject.other | Chronic disease | |
| dc.subject.other | Cancer | |
| dc.title | Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers | |
| dc.type | Journal Article | |
| uct.type.filetype | Text | |
| uct.type.filetype | Image |