M Ramasamy Venkatasalu1, N Sirala Jagadeesh2, S Elavally3, Y Pappas4, F Mhlanga5, R Pallipalayam Varatharajan6. 1. Cancer and Palliative Care, PAP Rashidah Sa'adatul Bolkiah Institute of Health Sciences, Universiti Brunei Darussalam, Gadong, Brunei Darussalam. 2. Faculty of Nursing, Sri Ramachandra University, Chennai, India. 3. Government College of Nursing, Alappuza, India. 4. Institute for Health Research, University of Bedfordshire, Bedfordshire, UK. 5. Mental Health Nursing, Department of Healthcare Practice, Faculty of Health and Social Sciences, University of Bedfordshire, Bedfordshire, UK. 6. Nursing Education, Faculty of Nursing, Sri Ramachandra University, Chennai, India.
Abstract
AIM: To systematically review the existing evidence on the Indian public, patient and carers' perspectives on palliative and end-of-life care. BACKGROUND: With a growing population of terminally ill people across the world, there is also an increasing awareness among international health policy makers of the need to improve the quality of life for terminally ill patients. Understanding service users' (patients, family and public) perspectives is crucial in developing and sustaining successful community-centred palliative nursing policies and service models especially in countries like India with diverse population. METHODS: An integrative review was performed on five databases, using hand searches of key journals and reference citation tracking for empirical studies published in English from 1990 to 2015. A thematic analysis framework was used to analyse and identify key themes. RESULTS: Analysis of the six eligible studies revealed five themes. Themes describe how social, economic, cultural, religious, spiritual and traditional factors influenced the palliative and end-of-life care perspectives and experiences among Indians. They also illustrated preferences relating to place of care, as well as benefits and challenges of family caregiving during the last days of life. CONCLUSIONS: Although we found minimal evidence on user perspectives, nurses need to aware of those unique components of context-specific palliative and end-of-life care practices in India - socioeconomic, cultural and religious factors - on their nursing encounters. Nurses need to advocate same in policy development to enable accessibility and utility of palliative and end-of-life care services, which are scant in India. IMPLICATIONS FOR NURSING AND HEALTH POLICY: Nurses can be central in gathering the contextual evidence that advocate users' perspectives to inform further studies and national palliative care policies in India. Emerging policies in nursing education need to focus on integrating family-centred palliative and end-of-life care within curricula, whereas nursing practice may promote nurse-led community models to address the patchy palliative and end-of-life service provision in India.
AIM: To systematically review the existing evidence on the Indian public, patient and carers' perspectives on palliative and end-of-life care. BACKGROUND: With a growing population of terminally ill people across the world, there is also an increasing awareness among international health policy makers of the need to improve the quality of life for terminally ill patients. Understanding service users' (patients, family and public) perspectives is crucial in developing and sustaining successful community-centred palliative nursing policies and service models especially in countries like India with diverse population. METHODS: An integrative review was performed on five databases, using hand searches of key journals and reference citation tracking for empirical studies published in English from 1990 to 2015. A thematic analysis framework was used to analyse and identify key themes. RESULTS: Analysis of the six eligible studies revealed five themes. Themes describe how social, economic, cultural, religious, spiritual and traditional factors influenced the palliative and end-of-life care perspectives and experiences among Indians. They also illustrated preferences relating to place of care, as well as benefits and challenges of family caregiving during the last days of life. CONCLUSIONS: Although we found minimal evidence on user perspectives, nurses need to aware of those unique components of context-specific palliative and end-of-life care practices in India - socioeconomic, cultural and religious factors - on their nursing encounters. Nurses need to advocate same in policy development to enable accessibility and utility of palliative and end-of-life care services, which are scant in India. IMPLICATIONS FOR NURSING AND HEALTH POLICY: Nurses can be central in gathering the contextual evidence that advocate users' perspectives to inform further studies and national palliative care policies in India. Emerging policies in nursing education need to focus on integrating family-centred palliative and end-of-life care within curricula, whereas nursing practice may promote nurse-led community models to address the patchy palliative and end-of-life service provision in India.
Authors: William E Rosa; Amisha Parekh de Campos; Nauzley C Abedini; Tamryn F Gray; Huda Abu-Saad Huijer; Afsan Bhadelia; Juli McGowan Boit; Samuel Byiringiro; Nigel Crisp; Constance Dahlin; Patricia M Davidson; Sheila Davis; Liliana De Lima; Paul E Farmer; Betty R Ferrell; Vedaste Hategekimana; Viola Karanja; Felicia Marie Knaul; Julius D N Kpoeh; Joseph Lusaka; Samuel T Matula; Cory McMahon; Salimah H Meghani; Patricia J Moreland; Christian Ntizimira; Lukas Radbruch; M R Rajagopal; Julia Downing Journal: J Pain Symptom Manage Date: 2021-07-29 Impact factor: 3.612
Authors: Arunangshu Ghoshal; Jayita Deodhar; Chandana Adhikarla; Avinash Tiwari; Sydney Dy; C S Pramesh Journal: Indian J Palliat Care Date: 2021-08-12