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Multilevel model of stigma and barriers to cancer palliative care in India: a qualitative study.

ABSTRACT: INTRODUCTION:Palliative care coverage and opioid consumption in India are relatively low compared with global data. The literature suggests commonplace concealment and collusion in withholding information, but these hypotheses lack evidence. OBJECTIVES:This study aimed to develop an explanatory evidence-based model of stigma, communication and access to cancer palliative care in India that can be used to develop, test and implement future interventions. DESIGN:This cross-sectional qualitative study sampled advanced cancer patients (n=10), their family caregivers (n=10) and oncologists (n=10). Grounded theory procedures were utilised to analyse transcripts, and a theoretical model generated. SETTING:A tertiary teaching hospital in South India. RESULTS:The model explains how stigma associated with communicating a diagnosis of advanced cancer is enacted by treating oncologists, family members and community. This leads to patient expectations of cure and futile treatment uptake. Patients commonly only present needs with respect to pain, not within psychological, social or spiritual domains, likely due to the lack of patients' insight into their diagnosis and prognosis. As a result of oncologists' and families' unwillingness to disclose the prognosis, and patient focus on pain due to their lack of insight, palliative care clinicians view their services as under-utilised, and patients perceive palliative care as a pain management service that is not 'different' from other clinical services. Advanced care needs and purchase of futile treatments lead to lost employment among families, increased family debt and high care costs, which are rarely disclosed due to their unwillingness to discuss their needs. CONCLUSION:Our novel theoretical model is an essential first step to ensure that complex interventions are plausible, with mechanisms of action that address the needs of relevant stakeholders. A family-centred approach with an oncology workforce skilled in communication and an enabled patient population could increase access to palliative care, and improved outcomes may be attainable.

SUBMITTER: Harding R

PROVIDER: S-EPMC6429952 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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Multilevel model of stigma and barriers to cancer palliative care in India: a qualitative study.

Harding Richard R Nair Shoba S Ekstrand Maria M

BMJ open 20190304 3

<h4>Introduction</h4>Palliative care coverage and opioid consumption in India are relatively low compared with global data. The literature suggests commonplace concealment and collusion in withholding information, but these hypotheses lack evidence.<h4>Objectives</h4>This study aimed to develop an explanatory evidence-based model of stigma, communication and access to cancer palliative care in India that can be used to develop, test and implement future interventions.<h4>Design</h4>This cross-se ...[more]

PMID: 30837250

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Project description:ObjectivesThis 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.DesignThis was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.SettingAll interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.ParticipantsWe 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.ResultsCritically 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.ConclusionsDespite 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.

Project description:Background: The need for palliative care among patients living with cancer is increasing globally. This need is far greater in resource-constrained settings like Ghana where there is a high unmet need for palliative care services. Consequently, there are lapses in the current palliative care regime, thus, resulting in suboptimal utilization. Objective: The study aims to explore patients living with cancer’s expectations of palliative care services and examine the barriers that impede palliative care utilization. Design: Descriptive exploratory qualitative design. Methods: A total of 15 patients living with cancer and receiving treatment in a tertiary health facility were purposively sampled to participate in this study. Semi-structured interviews were conducted. The data were transcribed and inductively analysed following Collaizi’s qualitative analysis framework. Results: From the analysis, the findings were grouped under two main categories: perceived expectations and barriers to utilizing palliative care. The participants expected to receive meaningful communication about their condition and prognosis; they also expected to be actively involved in palliative care decision-making. Regarding the barriers, the following themes emerged: financial constraints, unfavourable health appointment schedules, problems with the distance to the health facility, poor referral and follow-up from oncology specialists and being unaware of the availability of palliative care services. Conclusion: In conclusion, there is a need to actively involve patients and their families in all decision-making along the continuum of palliative care service delivery. The study underscores the need for Ghana to implement an integration of palliative care services in primary healthcare facilities to avert the challenges that distance to tertiary healthcare facilities poses to palliative care utilization. Service providers must implement awareness programmes to enable patients to better comprehend palliative care services.

Project description:BackgroundBreast and cervical cancer are two of the most common cancers among women worldwide and were the two leading causes of cancer related death for women in India in 2013. While it is recognized that psychosocial and cultural factors influence access to education, prevention, screening and treatment, the role of stigma related to these two cancers has received limited attention.MethodsTwo qualitative exploratory studies. One focusing on cervical cancer, the other on breast cancer, were conducted in Karnataka, India using in-depth interviews and focus group discussions. In the breast cancer study, 59 in-depth interviews were conducted with patients, primary caregivers and healthcare providers. In the cervical cancer study, 147 respondents were interviewed including older and younger women, husbands, healthcare providers and community leaders. While stigma was not the focus of either study, themes relating to stigma emerged and are the focus of this analysis.ResultsCancer stigma emerged as a general theme across both data sets. It appeared throughout the transcripts as descriptions of how women with breast or cervical cancer would be treated and talked about by husbands, family and the community (manifestations of stigma) and the reasons for this behavior. Stigma as a theme also arose through discussions around managing disclosure of a cancer diagnosis. Stigma was juxtaposed with a narrative of support for women with cancer. Three major themes emerged as driving the manifestations of cancer stigma: fear of casual transmission of cancer; personal responsibility for having caused cancer, and; belief in and fear of the inevitability of disability and death with a cancer diagnosis. Manifestations of cancer stigma were described in terms of experienced (enacted) stigma, including isolation or verbal stigma, and anticipated (fear of) stigma, should a cancer diagnosis be disclosed.ConclusionsThe presence in these communities of cancer stigma and its many forms emerged across both the cervical and breast cancer data sets. Stigma was a feared outcome of a cancer diagnosis and described as a barrier to screening, early diagnosis and treatment seeking for women with symptoms. While further research on cancer stigma is needed, this exploration of some of the driving factors provides insight for future programmatic efforts to reduce cancer stigma and improve access to information, screening and treatment.

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Multilevel model of stigma and barriers to cancer palliative care in India: a qualitative study.

Publications

Multilevel model of stigma and barriers to cancer palliative care in India: a qualitative study.

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