Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India
Objectives This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.Design This was an exploratory, qualitati...
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| Format: | Article |
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BMJ Publishing Group
2020-10-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/10/10/e036179.full |
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| author | Kathryn Richardson Mohit Nair Pragya Kumar Amit Harshana Laura Moreto-Planas Sakib Burza Raman Mahajan |
| author_facet | Kathryn Richardson Mohit Nair Pragya Kumar Amit Harshana Laura Moreto-Planas Sakib Burza Raman Mahajan |
| author_sort | Kathryn Richardson |
| collection | DOAJ |
| description | Objectives This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.Design This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.Setting All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.Participants We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.Results Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as ‘palliative care’ and ‘end-of-life care’. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients’ deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.Conclusions Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients’ preferences. |
| format | Article |
| id | doaj-art-9b51ff0a6561484db623a5eb7dcf4454 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2020-10-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-9b51ff0a6561484db623a5eb7dcf44542024-11-16T04:35:07ZengBMJ Publishing GroupBMJ Open2044-60552020-10-01101010.1136/bmjopen-2019-036179Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, IndiaKathryn Richardson0Mohit Nair1Pragya Kumar2Amit Harshana3Laura Moreto-Planas4Sakib Burza5Raman Mahajan6Norwich Medical School, University of East Anglia, Norwich, UKMedecins Sans Frontieres, New Delhi, Delhi, IndiaCommunity & Family Medicine, All India Institute of Medical Sciences, Patna, Bihar, India3 International Training and Education HIV (I-TECH), Delhi, IndiaMedical Department, Médecins Sans Frontières, Barcelona, SpainMedecins Sans Frontières, New Delhi, India3 International Training and Education HIV (I-TECH), Delhi, IndiaObjectives This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.Design This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.Setting All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.Participants We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.Results Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as ‘palliative care’ and ‘end-of-life care’. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients’ deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.Conclusions Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients’ preferences.https://bmjopen.bmj.com/content/10/10/e036179.full |
| spellingShingle | Kathryn Richardson Mohit Nair Pragya Kumar Amit Harshana Laura Moreto-Planas Sakib Burza Raman Mahajan Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India BMJ Open |
| title | Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India |
| title_full | Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India |
| title_fullStr | Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India |
| title_full_unstemmed | Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India |
| title_short | Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India |
| title_sort | lived experiences of palliative care among people living with hiv aids a qualitative study from bihar india |
| url | https://bmjopen.bmj.com/content/10/10/e036179.full |
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