Providing palliative care in rural Nepal: Perceptions of mid-level health workers

RN Gongal, SK Upadhyay, KP Baral, M Watson, WG Kernohan

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Introduction: Nepal is beginning to develop palliative care services across the country. Most people live in rural areas, where the Mid-Level Health Workers (MHWs) are the major service providers. Their views on providing palliative care are most important in determining how the service is organized and developed. Aim: This study aims to ascertain the perceptions of MHWs about palliative care in their local community, to inform service development. Methods: A qualitative descriptive design, using focus group discussions, was used to collect data from a rural district of Makwanpur, 1 of the 75 districts of Nepal. Twenty-eight MHWs participated in four focus group discussions. The data were analyzed using content analysis. Result: Four themes emerged from the discussion: (i) suffering of patients and families inflicted by life-threatening illness, (ii) helplessness and frustration felt when caring for such patients, (iii) sociocultural issues at the end of life, and (iv) improving care for patients with palliative care needs. Conclusion: MHWs practicing in rural areas reported the suffering of patients inflicted with life-limiting illness and their family due to poverty, poor access, lack of resources, social discrimination, and lack of knowledge and skills of the health workers. While there are clear frustrations with the limited resources, there is a willingness to learn among the health workers and provide care in the community.
LanguageEnglish
Pages150-155
JournalIndian Journal of Palliatve Care
Volume24
Issue number2
Early online date13 Apr 2018
DOIs
Publication statusE-pub ahead of print - 13 Apr 2018

Fingerprint

Nepal
Palliative Care
Health Status
Frustration
Focus Groups
Social Discrimination
Health
Poverty
Psychological Stress
Patient Care

Keywords

  • Mid-level health worker
  • palliative care
  • rural

Cite this

Gongal, RN ; Upadhyay, SK ; Baral, KP ; Watson, M ; Kernohan, WG. / Providing palliative care in rural Nepal: Perceptions of mid-level health workers. In: Indian Journal of Palliatve Care. 2018 ; Vol. 24, No. 2. pp. 150-155.
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title = "Providing palliative care in rural Nepal: Perceptions of mid-level health workers",
abstract = "Introduction: Nepal is beginning to develop palliative care services across the country. Most people live in rural areas, where the Mid-Level Health Workers (MHWs) are the major service providers. Their views on providing palliative care are most important in determining how the service is organized and developed. Aim: This study aims to ascertain the perceptions of MHWs about palliative care in their local community, to inform service development. Methods: A qualitative descriptive design, using focus group discussions, was used to collect data from a rural district of Makwanpur, 1 of the 75 districts of Nepal. Twenty-eight MHWs participated in four focus group discussions. The data were analyzed using content analysis. Result: Four themes emerged from the discussion: (i) suffering of patients and families inflicted by life-threatening illness, (ii) helplessness and frustration felt when caring for such patients, (iii) sociocultural issues at the end of life, and (iv) improving care for patients with palliative care needs. Conclusion: MHWs practicing in rural areas reported the suffering of patients inflicted with life-limiting illness and their family due to poverty, poor access, lack of resources, social discrimination, and lack of knowledge and skills of the health workers. While there are clear frustrations with the limited resources, there is a willingness to learn among the health workers and provide care in the community.",
keywords = "Mid-level health worker, palliative care, rural",
author = "RN Gongal and SK Upadhyay and KP Baral and M Watson and WG Kernohan",
note = "Reference text: 1. Brown S, Black F, Vaidya P, Shrestha S, Ennals D, LeBaron VT, et al. Palliative care development: The Nepal model. J Pain Symptom Manage 2007;33:573-7. Back to cited text no. 1 2. Department of Health Services, Ministry of Health, Government of Nepal. Annual Report 2015-2016. Available from: http://www.dohs.gov.np/wp-content/uploads/2017/06/DoHS_Annual_Report_2072_73.pdf. [Last accessed on 2017 Mar 15]. Back to cited text no. 2 3. Burnard P. A method of analysing interview transcripts in qualitative research. Nurse Educ Today 1991;11:461-6. Back to cited text no. 3 4. Downing J, Kawuma E. The impact of a modular HIV/AIDS palliative care education programme in rural Uganda. Int J Palliat Nurs 2008;14:560-8. Back to cited text no. 4 5. Gongal R, Vaidya P, Jha R, Rajbhandary O, Watson M. Informing patients about cancer in Nepal: What do people prefer? Palliat Med 2006;20:471-6. Back to cited text no. 5 6. Harrison A, al-Saadi AM, al-Kaabi AS, al-Kaabi MR, al-Bedwawi SS, al-Kaabi SO, et al. Should doctors inform terminally ill patients? The opinions of nationals and doctors in the United Arab Emirates. J Med Ethics 1997;23:101-7. Back to cited text no. 6 7. Hamadeh GN, Adib SM. Cancer truth disclosure by Lebanese doctors. Soc Sci Med 1998;47:1289-94. Back to cited text no. 7 8. Akabayashi A, Kai I, Takemura H, Okazaki H. Truth telling in the case of a pessimistic diagnosis in Japan. Lancet 1999;354:1263. Back to cited text no. 8 9. Ferraz Gon{\cc}alves J, Castro S. Diagnosis disclosure in a Portuguese oncological centre. Palliat Med 2001;15:35-41. Back to cited text no. 9 10. Tang ST, Lee SY. Cancer diagnosis and prognosis in Taiwan: Patient preferences versus experiences. Psychooncology 2004;13:1-3. Back to cited text no. 10 11. Surbone A, Ritossa C, Spagnolo AG. Evolution of truth-telling attitudes and practices in Italy. Crit Rev Oncol Hematol 2004;52:165-72. Back to cited text no. 11 12. Zhenga R, Guo QH, Dong FQ, Owens RG. Chinese oncology nurses' experience on caring for dying patients who are on their final days: A qualitative study. Int J Nurs Stud 2015;52:288-96. Back to cited text no. 12 13. Health International. Stigma and Discrimination in Nepal: Community Attitudes and the Forms and Consequences Persons Living with HIV/AIDS; 2004. Available from: http://www.un.org.np/sites/default/files/report/tid_188/stigma{\%}20and{\%}20discrimination.pdf. [Last accessed on 2017 Jan 18]. Back to cited text no. 13 14. Anderson M, Elam G, Gerver S, Solarin I, Fenton K, Easterbrook P, et al. HIV/AIDS-related stigma and discrimination: Accounts of HIV-positive Caribbean people in the United Kingdom. Soc Sci Med 2008;67:790-8. Back to cited text no. 14 15. Genberg BL, Hlavka Z, Konda KA, Maman S, Chariyalertsak S, Chingono A, et al. Acomparison of HIV/AIDS-related stigma in four countries: Negative attitudes and perceived acts of discrimination towards people living with HIV/AIDS. Soc Sci Med 2009;68:2279-87. Back to cited text no. 15 16. Ulasi CI, Preko PO, Baidoo JA, Bayard B, Ehiri JE, Jolly CM, et al. HIV/AIDS-related stigma in Kumasi, Ghana. Health Place 2009;15:255-62. Back to cited text no. 16 17. Ugarte WJ, H{\"o}gberg U, Valladares EC, Ess{\'e}n B. Measuring HIV- and AIDS-related stigma and discrimination in Nicaragua: Results from a community-based study. AIDS Educ Prev 2013;25:164-78. Back to cited text no. 17 18. Daher M. Cultural beliefs and values in cancer patients. Ann Oncol 2012;23 Suppl 3:66-9. Back to cited text no. 18 19. Elliott-Schmidt R, Strong J. The concept of well-being in a rural setting: Understanding health and illness. Aust J Rural Health 1997;5:59-63. Back to cited text no. 19 20. Grant E, Murray SA, Grant A, Brown J. A good death in rural Kenya? Listening to Meru patients and their families talk about care needs at the end of life. J Palliat Care 2003;19:159-67. Back to cited text no. 20 21. Choi KS, Chae YM, Lee CG, Kim SY, Lee SW, Heo DS, et al. Factors influencing preferences for place of terminal care and of death among cancer patients and their families in Korea. Support Care Cancer 2005;13:565-72. Back to cited text no. 21 22. McCall K, Rice AM. What influences decisions around the place of care for terminally ill cancer patients? Int J Palliat Nurs 2005;11:541-7. Back to cited text no. 22 23. McGrath P. 'I don't want to be in that big city; this is my country here': Research findings on aboriginal peoples' preference to die at home. Aust J Rural Health 2007;15:264-8. Back to cited text no. 23 24. Viellette A, Fillion L, Wilson D, Roger T, Dumont S. La belle mort en milieu rural: A report of an ethnographic study of the good death for Quebec rural francophones. J Palliat Care 2010;26:159-66. Back to cited text no. 24 25. Gysels M, Pell C, Straus L, Pool R. End of life care in Sub-Saharan Africa: A systematic review of the qualitative literature. BMC Palliat Care 2011;10:6. Back to cited text no. 25 26. Gu X, Cheng W, Cheng M, Liu M, Zhang Z. The preference of place of death and its predictors among terminally ill patients with cancer and their caregivers in China. Am J Hosp Palliat Care 2015;32:835-40. Back to cited text no. 26 27. Shih CY, Hu WY, Cheng SY, Yao CA, Chen CY, Lin YC, et al. Patient preferences versus family physicians' perceptions regarding the place of end-of-life care and death: A nationwide study in Taiwan. J Palliat Med 2015;18:625-30. Back to cited text no. 27 28. Elliott TE, Elliott BA. Physician attitudes and beliefs about use of morphine for cancer pain. J Pain Symptom Manage 1992;7:141-8. Back to cited text no. 28 29. Oneschuk D, Fainsinger R, Hanson J, Bruera E. Assessment and knowledge in palliative care in second year family medicine residents. J Pain Symptom Manage 1997;14:265-73. Back to cited text no. 29 30. Pargeon KL, Hailey BJ. Barriers to effective cancer pain management: A review of the literature. J Pain Symptom Manage 1999;18:358-68. Back to cited text no. 30 31. Jagwe J, Merriman A. Uganda: Delivering analgesia in rural Africa: Opioid availability and nurse prescribing. J Pain Symptom Manage 2007;33:547-51.",
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}

Providing palliative care in rural Nepal: Perceptions of mid-level health workers. / Gongal, RN; Upadhyay, SK; Baral, KP; Watson, M; Kernohan, WG.

In: Indian Journal of Palliatve Care, Vol. 24, No. 2, 13.04.2018, p. 150-155.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Providing palliative care in rural Nepal: Perceptions of mid-level health workers

AU - Gongal, RN

AU - Upadhyay, SK

AU - Baral, KP

AU - Watson, M

AU - Kernohan, WG

N1 - Reference text: 1. Brown S, Black F, Vaidya P, Shrestha S, Ennals D, LeBaron VT, et al. Palliative care development: The Nepal model. J Pain Symptom Manage 2007;33:573-7. Back to cited text no. 1 2. Department of Health Services, Ministry of Health, Government of Nepal. Annual Report 2015-2016. Available from: http://www.dohs.gov.np/wp-content/uploads/2017/06/DoHS_Annual_Report_2072_73.pdf. [Last accessed on 2017 Mar 15]. Back to cited text no. 2 3. Burnard P. A method of analysing interview transcripts in qualitative research. Nurse Educ Today 1991;11:461-6. Back to cited text no. 3 4. Downing J, Kawuma E. The impact of a modular HIV/AIDS palliative care education programme in rural Uganda. Int J Palliat Nurs 2008;14:560-8. Back to cited text no. 4 5. Gongal R, Vaidya P, Jha R, Rajbhandary O, Watson M. Informing patients about cancer in Nepal: What do people prefer? Palliat Med 2006;20:471-6. Back to cited text no. 5 6. Harrison A, al-Saadi AM, al-Kaabi AS, al-Kaabi MR, al-Bedwawi SS, al-Kaabi SO, et al. Should doctors inform terminally ill patients? The opinions of nationals and doctors in the United Arab Emirates. J Med Ethics 1997;23:101-7. Back to cited text no. 6 7. Hamadeh GN, Adib SM. Cancer truth disclosure by Lebanese doctors. Soc Sci Med 1998;47:1289-94. Back to cited text no. 7 8. Akabayashi A, Kai I, Takemura H, Okazaki H. Truth telling in the case of a pessimistic diagnosis in Japan. Lancet 1999;354:1263. Back to cited text no. 8 9. Ferraz Gonçalves J, Castro S. Diagnosis disclosure in a Portuguese oncological centre. Palliat Med 2001;15:35-41. Back to cited text no. 9 10. Tang ST, Lee SY. Cancer diagnosis and prognosis in Taiwan: Patient preferences versus experiences. Psychooncology 2004;13:1-3. Back to cited text no. 10 11. Surbone A, Ritossa C, Spagnolo AG. Evolution of truth-telling attitudes and practices in Italy. Crit Rev Oncol Hematol 2004;52:165-72. Back to cited text no. 11 12. Zhenga R, Guo QH, Dong FQ, Owens RG. Chinese oncology nurses' experience on caring for dying patients who are on their final days: A qualitative study. Int J Nurs Stud 2015;52:288-96. Back to cited text no. 12 13. Health International. Stigma and Discrimination in Nepal: Community Attitudes and the Forms and Consequences Persons Living with HIV/AIDS; 2004. Available from: http://www.un.org.np/sites/default/files/report/tid_188/stigma%20and%20discrimination.pdf. [Last accessed on 2017 Jan 18]. Back to cited text no. 13 14. Anderson M, Elam G, Gerver S, Solarin I, Fenton K, Easterbrook P, et al. HIV/AIDS-related stigma and discrimination: Accounts of HIV-positive Caribbean people in the United Kingdom. Soc Sci Med 2008;67:790-8. Back to cited text no. 14 15. Genberg BL, Hlavka Z, Konda KA, Maman S, Chariyalertsak S, Chingono A, et al. Acomparison of HIV/AIDS-related stigma in four countries: Negative attitudes and perceived acts of discrimination towards people living with HIV/AIDS. Soc Sci Med 2009;68:2279-87. Back to cited text no. 15 16. Ulasi CI, Preko PO, Baidoo JA, Bayard B, Ehiri JE, Jolly CM, et al. HIV/AIDS-related stigma in Kumasi, Ghana. Health Place 2009;15:255-62. Back to cited text no. 16 17. Ugarte WJ, Högberg U, Valladares EC, Essén B. Measuring HIV- and AIDS-related stigma and discrimination in Nicaragua: Results from a community-based study. AIDS Educ Prev 2013;25:164-78. Back to cited text no. 17 18. Daher M. Cultural beliefs and values in cancer patients. Ann Oncol 2012;23 Suppl 3:66-9. Back to cited text no. 18 19. Elliott-Schmidt R, Strong J. The concept of well-being in a rural setting: Understanding health and illness. Aust J Rural Health 1997;5:59-63. Back to cited text no. 19 20. Grant E, Murray SA, Grant A, Brown J. A good death in rural Kenya? Listening to Meru patients and their families talk about care needs at the end of life. J Palliat Care 2003;19:159-67. Back to cited text no. 20 21. Choi KS, Chae YM, Lee CG, Kim SY, Lee SW, Heo DS, et al. Factors influencing preferences for place of terminal care and of death among cancer patients and their families in Korea. Support Care Cancer 2005;13:565-72. Back to cited text no. 21 22. McCall K, Rice AM. What influences decisions around the place of care for terminally ill cancer patients? Int J Palliat Nurs 2005;11:541-7. Back to cited text no. 22 23. McGrath P. 'I don't want to be in that big city; this is my country here': Research findings on aboriginal peoples' preference to die at home. Aust J Rural Health 2007;15:264-8. Back to cited text no. 23 24. Viellette A, Fillion L, Wilson D, Roger T, Dumont S. La belle mort en milieu rural: A report of an ethnographic study of the good death for Quebec rural francophones. J Palliat Care 2010;26:159-66. Back to cited text no. 24 25. Gysels M, Pell C, Straus L, Pool R. End of life care in Sub-Saharan Africa: A systematic review of the qualitative literature. BMC Palliat Care 2011;10:6. Back to cited text no. 25 26. Gu X, Cheng W, Cheng M, Liu M, Zhang Z. The preference of place of death and its predictors among terminally ill patients with cancer and their caregivers in China. Am J Hosp Palliat Care 2015;32:835-40. Back to cited text no. 26 27. Shih CY, Hu WY, Cheng SY, Yao CA, Chen CY, Lin YC, et al. Patient preferences versus family physicians' perceptions regarding the place of end-of-life care and death: A nationwide study in Taiwan. J Palliat Med 2015;18:625-30. Back to cited text no. 27 28. Elliott TE, Elliott BA. Physician attitudes and beliefs about use of morphine for cancer pain. J Pain Symptom Manage 1992;7:141-8. Back to cited text no. 28 29. Oneschuk D, Fainsinger R, Hanson J, Bruera E. Assessment and knowledge in palliative care in second year family medicine residents. J Pain Symptom Manage 1997;14:265-73. Back to cited text no. 29 30. Pargeon KL, Hailey BJ. Barriers to effective cancer pain management: A review of the literature. J Pain Symptom Manage 1999;18:358-68. Back to cited text no. 30 31. Jagwe J, Merriman A. Uganda: Delivering analgesia in rural Africa: Opioid availability and nurse prescribing. J Pain Symptom Manage 2007;33:547-51.

PY - 2018/4/13

Y1 - 2018/4/13

N2 - Introduction: Nepal is beginning to develop palliative care services across the country. Most people live in rural areas, where the Mid-Level Health Workers (MHWs) are the major service providers. Their views on providing palliative care are most important in determining how the service is organized and developed. Aim: This study aims to ascertain the perceptions of MHWs about palliative care in their local community, to inform service development. Methods: A qualitative descriptive design, using focus group discussions, was used to collect data from a rural district of Makwanpur, 1 of the 75 districts of Nepal. Twenty-eight MHWs participated in four focus group discussions. The data were analyzed using content analysis. Result: Four themes emerged from the discussion: (i) suffering of patients and families inflicted by life-threatening illness, (ii) helplessness and frustration felt when caring for such patients, (iii) sociocultural issues at the end of life, and (iv) improving care for patients with palliative care needs. Conclusion: MHWs practicing in rural areas reported the suffering of patients inflicted with life-limiting illness and their family due to poverty, poor access, lack of resources, social discrimination, and lack of knowledge and skills of the health workers. While there are clear frustrations with the limited resources, there is a willingness to learn among the health workers and provide care in the community.

AB - Introduction: Nepal is beginning to develop palliative care services across the country. Most people live in rural areas, where the Mid-Level Health Workers (MHWs) are the major service providers. Their views on providing palliative care are most important in determining how the service is organized and developed. Aim: This study aims to ascertain the perceptions of MHWs about palliative care in their local community, to inform service development. Methods: A qualitative descriptive design, using focus group discussions, was used to collect data from a rural district of Makwanpur, 1 of the 75 districts of Nepal. Twenty-eight MHWs participated in four focus group discussions. The data were analyzed using content analysis. Result: Four themes emerged from the discussion: (i) suffering of patients and families inflicted by life-threatening illness, (ii) helplessness and frustration felt when caring for such patients, (iii) sociocultural issues at the end of life, and (iv) improving care for patients with palliative care needs. Conclusion: MHWs practicing in rural areas reported the suffering of patients inflicted with life-limiting illness and their family due to poverty, poor access, lack of resources, social discrimination, and lack of knowledge and skills of the health workers. While there are clear frustrations with the limited resources, there is a willingness to learn among the health workers and provide care in the community.

KW - Mid-level health worker

KW - palliative care

KW - rural

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U2 - 10.4103/IJPC.IJPC_196_17

DO - 10.4103/IJPC.IJPC_196_17

M3 - Article

VL - 24

SP - 150

EP - 155

JO - Indian Journal of Palliatve Care

T2 - Indian Journal of Palliatve Care

JF - Indian Journal of Palliatve Care

SN - 0973-1075

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ER -