scholarly journals A systematic literature review exploring the psychosocial aspects of palliative care provision for incarcerated persons: a human rights perspective

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Lise Johns ◽  
Stacey Weightman ◽  
Pippa Blackburn ◽  
Donna McAuliffe
Keyword(s):  
Palliative Care ◽  
Human Rights ◽  
Mixed Methods ◽  
Public Discourse ◽  
Assessment Tool ◽  
Psychosocial Care ◽  
Psychosocial Aspects ◽  
Care Provision ◽  
Provider Attitudes ◽  
Content Type

Purpose The purpose of this study is to explore the psychosocial aspects of palliative care provision for incarcerated persons drawing on a human rights perspective. Design/methodology/approach Seven databases were searched to identify empirical studies published from 2010 to 2020. Articles included were qualitative, quantitative, mixed methods, written in English and with westernised health/prison settings, with a key focus on the psychosocial aspects of palliative care provision and human rights. The quality of the articles was appraised using the Mixed Methods Assessment Tool (2018). Findings The results from 26 articles revealed multiple models of care, with the US prison hospice program depicted as optimal, because of the use of trained incarcerated caregivers, working as aides to the interprofessional team. The bereavement needs of caregivers were highlighted. The barriers to adequate psychosocial care were negative public discourse, prison processes and resources, provider attitudes and the incarcerated person’s level of knowledge and trust. Identified facilitators were related to incarcerated persons’ caregiving programs, a sense of purpose and visitation leniency. Human rights principles were identified in studies that featured compassionate release and advance care planning. Research limitations/implications There is inconsistency in the literature regarding what constitutes psychosocial care, which meant that the authors needed to draw on multiple literature sources to formulate a definition. Additionally, the review only included studies written in English, meaning some high-quality studies could have been missed. The articles that conducted interviews with incarcerated individuals were undertaken in male prisons only and not female prisons. Practical implications Understanding the importance of psychosocial care for incarcerated persons with a life-limiting illness requires a shift in negative public discourse and the need for a stronger human rights focus. Some countries, such as the USA and UK, are achieving effective outcomes; however, countries such as Australia are yet to contribute to this knowledge base. Originality/value If palliative care is a human right, then its philosophy should be considered in its entirety, with the inclusion of psychosocial care.

Respecting the autonomy of the living and dying

2020 ◽  
Vol 28 (4) ◽  
pp. 379-385
Author(s):  
Jill Stavert
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Human Rights ◽  
International Human Rights Law ◽  
Advanced Dementia ◽  
Persons With Disabilities ◽  
Content Type ◽  
Care And Support ◽  
Recent Developments ◽  
Care And Treatment

PurposeThe purpose of this study is to inform those who are supporting persons who are dying and are responsible for planning, commissioning or delivering palliative care about the need to support and maximise the decision-making ability and choices of persons with advanced dementia or severe frailty.Design/methodology/approachThis article will consider the legal and human rights principles applicable to Scotland, and indeed to other jurisdictions, which govern decisions about care and treatment of persons with and without capacity and the application of these principles to palliative care situations.FindingsIt is important that those involved in the care and support of the dying are fully aware of the need to support and maximise their decision-making ability concerning palliative care and treatment choices.Research limitations/implicationsIt is a well-established legal and human rights principle that the decisions of a person with capacity must be respected, including decisions about palliative care and treatment at the end of life. Moreover, recent developments in international human rights law reinforce the message that this principle applies equally to all. Applying this principle into persons with advanced dementia or severe frailty therefore requires skilled assessment and supported decision-making in order to optimise capacity and respect autonomy.Originality/valueThe discussion applies the United Nations Convention on the Rights of Persons with Disabilities approach concerning equality of rights enjoyment and supported decision-making to palliative care and treatment situations.

Corporate social and environmental reporting practices

2017 ◽  
Vol 8 (2) ◽  
pp. 138-165 ◽  
Author(s):  
Md Moazzem Hossain ◽  
Mahmood Ahmed Momin ◽  
Anna Lee Rowe ◽  
Mohammed Quaddus
Keyword(s):  
Human Rights ◽  
Mixed Methods ◽  
Environmental Reporting ◽  
Holistic View ◽  
Content Type ◽  
Mixed Methods Approach ◽  
Reporting Practices ◽  
Social And Environmental Reporting ◽  
Corporate Social ◽  
Community Investment

Purpose The purpose of this paper is to explore corporate social and environmental reporting (CSER) practices and motivations in Bangladesh. Design/methodology/approach Using a mixed-methods approach, the paper attempts to understand what corporate social and environmental issues Bangladeshi firms are reporting and why. The paper first explores the motivations for CSER in line with O’Dwyer’s (2003) proposed classifications of proactive and reactive motivations through interviews and frames its findings using stakeholder theory. To provide a more holistic view, content analysis adapted from CSR Asia (2008) categorization (broadly guided by GRI) was conducted to enhance findings from engagement-based interviews with managers. Findings The paper finds that “community investment and development” and “governance codes and policies” received the highest amount of disclosure, while the least amount of disclosure was found in the “workplace/human rights” category. Although a philanthropic tone was found behind “community investment”, such as poverty alleviation activities, disclosure in this area is mostly motivated by proactive rationales with enlightened self-interest and image-building activities. In terms of reactive motivations underpinning CSER, the paper finds that companies also report reactively to reduce pressure from powerful stakeholders such as international buyers and government agencies. Contrary to other studies regarding reactive motivations, the authors argue that a director’s proactive motivation is the prime determinant of CSER in a developing country. They also argue that low-level disclosures on workplace environment/human rights need to be given more importance by policymakers, management and other relevant stakeholders. Originality/value To the best of the authors’ knowledge, the study is one of the few engagement-based field studies that uses a mixed-methods approach to seek managerial perspectives in an attempt to understand CSER practices in an emerging country context.

Standards of human rights to palliative care: gaps and trends

2020 ◽  
Vol 13 (4) ◽  
pp. 293-298
Author(s):  
Varsha Agarwal ◽  
Ganesh L.
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Human Rights ◽  
Older Persons ◽  
Children's Rights ◽  
Right To Health ◽  
Children’S Rights ◽  
World Health ◽  
Content Type ◽  
Right To Health Care

Purpose The purpose of this paper is to investigate key milestones in development of standards of human rights to health care in particular context of addressing palliative care, relevant efforts of advocacy in past decade and future area of growth. Design/methodology/approach In this study, analysis of human rights and its standards in context of palliative care has been provided through the lens of freedom from ill treatment and torture, right to health care and older persons’ and children’s rights. Findings Findings of this study highlighted significant developments in this area which include following: first treaty of human rights which explained right to palliative care; first resolution on palliative care by World Health Assembly; special rapporteur’s report focussed on denial of pain; and addressing issue of controlled medicine availability in special session of UN General Assembly. Originality/value Human rights standards and their development in context of palliative care have been most significant in relation to freedom from ill treatment and torture, right to health care and older persons’ rights. Further work is required in context of children’s rights and treaty bodies of human rights need to consistently address state obligations towards palliative care.

Palliative and end-of-life care in prisons: a content analysis of the literature

2014 ◽  
Vol 10 (3) ◽  
pp. 172-197 ◽  
Author(s):  
Tina Maschi ◽  
Suzanne Marmo ◽  
Junghee Han
Keyword(s):  
Palliative Care ◽  
Human Rights ◽  
End Of Life ◽  
End Of Life Care ◽  
Terminally Ill ◽  
Life Care ◽  
Human Right ◽  
Content Type ◽  
Future Studies ◽  
Facilitators And Barriers

Purpose – The growing numbers of terminally ill and dying in prison has high economic and moral costs as global correctional systems and the society at large. However, to date little is known about the extent to which palliative and end-of-life care is infused within global prison health care systems. The purpose of this paper is to fill a gap in the literature by reviewing and critically appraising the methods and major findings of the international peer-reviewed literature on palliative and end-of-life care in prison, identify the common elements of promising palliative and end-of-life services in prison, and what factors facilitate or create barrier to implementation. Design/methodology/approach – A content analysis was conducted of the existing peer-reviewed literature on palliative and end-of-life care in prison. English-language articles were located through a comprehensive search of peer-reviewed journals, such as Academic Search Premier Literature databases using differing combinations of key word search terms, “prison,” “palliative care,” and “end-of-life care.” A total of 49 studies published between 1991 and 2013 met criteria for sample inclusion. Deductive and inductive analysis techniques were used to generate frequency counts and common themes related to the methods and major findings. Findings – The majority (n=39) of studies were published between 2001-2013 in the USA (n=40) and the UK (n=7). Most were about US prison hospice programs (n=16) or barriers to providing palliative and end of life care in prisons (n=10). The results of the inductive analysis identified common elements of promising practices, which included the use of peer volunteers, multi-disciplinary teams, staff training, and partnerships with community hospices. Obstacles identified for infusing palliative and end-of-life care in prison included ethical dilemmas based on custody vs care, mistrust between staff and prisoners, safety concerns, concern over prisoners’ potential misuse of pain medication, and institutional, staff, and public apathy toward terminally ill prisoners and their human rights to health in the form of compassionate and palliative care, including the use of compassionate release laws. Research limitations/implications – Implications for future research that foster human rights and public awareness of the economic and moral costs of housing the sick and dying in prisons. More research is needed to document human rights violations as well as best practices and evidence-based practices in palliative and end-of-life care in prisons. Future studies should incorporate data from the terminally ill in prison, peer supports, and family members. Future studies also should employ more rigorous research designs to evaluate human rights violations, staff and public attitudes, laws and policies, and best practices. Quantitative studies that use experimental designs, longitudinal data, and multiple informants are needed. Qualitative data would allow for thick descriptions of key stakeholders experiences, especially of the facilitators and barriers for implementing policy reform efforts and palliative care in prisons. Practical implications – This review provides a foundation on which to build on about what is known thus far about the human right to health, especially parole policy reform and infusing palliative and end-of-life care for the terminally ill and dying in prisons. This information can be used to develop or improve a new generation research, practice, policy, and advocacy efforts for that target terminally ill and dying in prison and their families and communities. Social implications – There are significant social implications to this review. From a human rights perspective, the right to freedom from torture and cruel and unusual punishment is a fundamental human right along with prisoners’ rights for an appropriate level of health care. These rights should be guaranteed regardless of the nature of their crime or whether they are in a prison placement. The information provided in this review can be used to educate and possible transform individual's and society's views toward the terminally ill and dying who are involved in the criminal justice system. Originality/value – This paper extends the extant literature by using both quantitative and qualitative analysis methods to organize, summarize, and critically analyze the international literature on palliative care and end of life care in prison. This review is designed to increase awareness among the international community of the pain and suffering of the terminally ill in prison and the facilitators and barriers to providing them compassionate care while in custody.

scholarly journals Advanced chronic liver disease in the last year of life: a mixed methods study to understand how care in a specialist liver unit could be improved

BMJ Open ◽  
2017 ◽  
Vol 7 (8) ◽  
pp. e016887 ◽  
Author(s):  
Joseph Low ◽  
Sarah Davis ◽  
Victoria Vickerstaff ◽  
Lynda Greenslade ◽  
Katherine Hopkins ◽  
...  
Keyword(s):  
Palliative Care ◽  
Mixed Methods ◽  
Focus Groups ◽  
Hospital Admissions ◽  
Symptom Burden ◽  
Care Provision ◽  
Tertiary Referral ◽  
Retrospective Case ◽  
Individual Interviews ◽  
Liver Health

ObjectiveTo identify the limitations in palliative care provision in the last year of life for people with liver cirrhosis and potential barriers to and enablers of palliative care.DesignMixed methods, including a retrospective case note review, qualitative focus groups and individual interviews.SettingA tertiary referral liver centre in the south of England (UK).ParticipantsPurposively selected case notes of 30 people with cirrhosis who attended the tertiary referral liver centre and died during an 18-month period; a purposive sample of 22 liver health professionals who participated in either focus groups or individual interviews.Primary and secondary outcomesData collected from case notes included hospital admissions, documented discussions of prognosis and palliative care provision. Qualitative methods explored management of people with cirrhosis, and barriers to and enablers of palliative care.ResultsParticipants had high rates of hospital admissions and symptom burden. Clinicians rarely discussed prognosis or future care preferences; they lacked the skills and confidence to initiate discussions. Palliative care provision occurred late because clinicians were reluctant to refer due to their perception that reduced liver function is reversible, poor understanding of the potential of a palliative approach; palliative care was perceived negatively by patients and families.ConclusionsPeople dying with cirrhosis have unpredictable trajectories, but share a common pathway of frequent admissions and worsening symptoms as death approaches. The use of clinical tools to identify the point of irreversible deterioration and joint working between liver services and palliative care may improve care for people with cirrhosis.

scholarly journals Psychosocial Care Provided by Physicians and Nurses in Palliative Care: A Mixed Methods Study

2017 ◽  
Vol 53 (2) ◽  
pp. 216-223 ◽  
Author(s):  
Sheng-Yu Fan ◽  
I-Mei Lin ◽  
Jyh-Gang Hsieh ◽  
Chih-Jung Chang
Keyword(s):  
Palliative Care ◽  
Mixed Methods ◽  
Psychosocial Care ◽  
Mixed Methods Study

scholarly journals Evaluating Barriers and Opportunities in Delivering High-Quality Oncology Care in a Resource-Limited Setting Using a Comprehensive Needs Assessment Tool

2018 ◽  
pp. 1-9
Author(s):  
Chika R. Nwachukwu ◽  
Omobola Mudasiru ◽  
Lynn Million ◽  
Shruti Sheth ◽  
Hope Qamoos ◽  
...  
Keyword(s):  
Palliative Care ◽  
Needs Assessment ◽  
Cancer Care ◽  
Assessment Tool ◽  
Hospital Staff ◽  
Teaching Hospitals ◽  
High Quality ◽  
Middle Income ◽  
Quality Cancer Care ◽  
Oncology Care

Purpose Despite recognition of both the growing cancer burden in low- and middle-income countries and the disproportionately high mortality rates in these settings, delivery of high-quality cancer care remains a challenge. The disparities in cancer care outcomes for many geographic regions result from barriers that are likely complex and understudied. This study describes the development and use of a streamlined needs assessment questionnaire (NAQ) to understand the barriers to providing quality cancer care, identifies areas for improvement, and formulates recommendations for implementation. Methods Using a comprehensive NAQ, in-depth interviews were conducted with 17 hospital staff involved in cancer care at two teaching hospitals in Nigeria. Data were analyzed using content analysis and organized into a framework with preset codes and emergent codes, where applicable. Results Data from the interviews were organized into six broad themes: staff, stuff, system, space, lack of palliative care, and provider bias, with key barriers within themes including: financial, infrastructural, lack of awareness, limited human capacity resources, lack of palliative care, and provider perspective on patient-related barriers to cancer care. Specific solutions based on ability to reasonably implement were subcategorized into short-, medium-, and long-term goals. Conclusion This study provides a framework for a streamlined initial needs assessment and a unique discussion on the barriers to high-quality oncology care that are prevalent in resource-constrained settings. We report the feasibility of collecting and organizing data using a streamlined NAQ and provide a thorough and in-depth understanding of the challenges in this setting. Knowledge gained from the assessments will inform steps to improve oncology cancer in these settings.

scholarly journals Missing in Action: Reports of Interdisciplinary Integration in Canadian Palliative Care

2021 ◽  
Vol 28 (4) ◽  
pp. 2699-2707
Author(s):  
Maggie C. Robinson ◽  
Maryam Qureshi ◽  
Aynharan Sinnarajah ◽  
Srini Chary ◽  
Janet M. de Groot ◽  
...  
Keyword(s):  
Palliative Care ◽  
Social Work ◽  
Spiritual Care ◽  
Psychosocial Care ◽  
Research And Practice ◽  
Barriers And Enablers ◽  
Special Concern ◽  
Missing In Action ◽  
Interdisciplinary Integration

Palliative care has an interdisciplinary tradition and Canada is a leader in its research and practice. Yet even in Canada, a full interdisciplinary complement is often lacking, with psychosocial presence ranging from 0–67.4% depending on the discipline and region. We sought to examine the most notable gaps in care from the perspective of Canadian palliative professionals. Canadian directors of palliative care programs were surveyed with respect to interdisciplinary integration. Participants responded in writing or by phone interview. We operationalized reports of interdisciplinary professions as either “present” or “under/not-represented”. The Vaismoradi, Turunen, and Bondas’ procedure was used for content analysis. Our 14 participants consisted of physicians (85.7%), nurses (14.3%), and a social worker (7.1%) from Ontario (35.7%), British Columbia (14.3%), Alberta (14.3%), Quebec (14.3%), Nova Scotia (14.3%), and New Brunswick (7.1%). Psychology and social work were equally and most frequently reported as “under/not represented” (5/14, each). All participants reported the presence of medical professionals (physicians and nurses) and these groups were not reported as under/not represented. Spiritual care and others (e.g., rehabilitation and volunteers) were infrequently reported as “under/not represented”. Qualitative themes included Commonly Represented Disciplines, Quality of Multidisciplinary Collaboration, Commonly Under-Represented Disciplines, and Special Concern: Psychosocial Care. Similar to previous reports, we found that (1) psychology was under-represented yet highly valued and (2) despite social work’s relative high presence in care, our participants reported a higher need for more. These finding highlight those psychosocial gaps in care are most frequently noted by palliative care professionals, especially psychology and social work. We speculate on barriers and enablers to addressing this need.

Human rights-based conceptions of deservingness: health and precarity

2020 ◽  
Vol 16 (3) ◽  
pp. 279-292
Author(s):  
Sarah Marshall
Keyword(s):  
Health Care ◽  
Human Rights ◽  
Health Care Providers ◽  
Health Care Access ◽  
Migrant Health ◽  
Dominant Negative ◽  
Care Providers ◽  
Content Type ◽  
Care Access ◽  
Health Related

Purpose Ideas of health-related deservingness in theory and practise have largely been attached to humanitarian notions of compassion and care for vulnerable persons, in contrast to rights-based approaches involving a moral-legal obligation to care based on universal citizenship principles. This paper aims to provide an alternative to these frames, seeking to explore ideas of a human rights-based deservingness framework to understand health care access and entitlement amongst precarious status persons in Canada. Design/methodology/approach Drawing from theoretical conceptualizations of deservingness, this paper aims to bring deservingness frameworks into the language of human rights discourses as these ideas relate to inequalities based on noncitizenship. Findings Deservingness frameworks have been used in public discourses to both perpetuate and diminish health-related inequalities around access and entitlement. Although, movements based on human rights have the potential to be co-opted and used to re-frame precarious status migrants as “undeserving”, movements driven by frames of human rights-based deservingness can subvert these dominant, negative discourses. Originality/value To date, deservingness theory has primarily been used to speak to issues relating to deservingness to welfare services. In relation to deservingness and precarious status migrants, much of the literature focuses on humanitarian notions of the “deserving” migrant. Health-related deservingness based on human rights has been under-theorized in the literature and the authors can learn from activist movements, precarious status migrants and health care providers that have taken on this approach to mobilize for rights based on being “human”.

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