Human rights education in palliative care – an evaluation of a national training programme

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Jacqueline Graves ◽  
Amunpreet Boyal ◽  
Tracey Shields ◽  
Roger Newham ◽  
Alistair Hewison ◽  
...  

Purpose This paper aims to report findings of a service evaluation using a human rights-based approach in the training and education of staff in palliative settings. Design/methodology/approach A non-randomly sampled, uncontrolled, pre- and post-test design. Data was collected at three points over a six-month period during the period April 2017 to September 2019. As a service evaluation no ethical approval was required. Consent was implied by self-completion and submission of questionnaires. In total, 1,402 people attended the training, 480 completed pre- and post-training questionnaires (146 completed the questionnaire at six months), with 86 completing a questionnaire at all three data collection points. Findings Findings show increased levels of self-reported knowledge and confidence at two weeks and six months post-training. Implementing human rights in the workplace is complex. Difficulties maintaining knowledge and keeping up to date with changes in legislation and traditional ways of working were cited as barriers to service users’ human rights. Research limitations/implications More evaluation is required to ensure the positive elements in this evaluation can be applied more widely. Practical implications Human rights education has a contribution to make in supporting staff to manage the challenges involved. It may also increase the complexity of decision-making. Training needs to incorporate systems wide approaches and its benefits measured. Social implications The aim was to provide staff with the knowledge to make objective and proportionate decisions about personalised care. The assumption was this would help improve the experience of end of life care. Originality/value This is the first evaluation in the UK that we are aware of that has examined the impact of human rights education on end of life care.

2014 ◽  
Vol 10 (3) ◽  
pp. 172-197 ◽  
Author(s):  
Tina Maschi ◽  
Suzanne Marmo ◽  
Junghee Han

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.


2019 ◽  
Vol 57 (1) ◽  
pp. 93-99 ◽  
Author(s):  
Paola Di Giulio ◽  
Silvia Finetti ◽  
Fabrizio Giunco ◽  
Ines Basso ◽  
Debora Rosa ◽  
...  

2018 ◽  
Vol 24 (6) ◽  
pp. 366-382 ◽  
Author(s):  
Ruth Northway ◽  
Stuart Todd ◽  
Katherine Hunt ◽  
Paula Hopes ◽  
Rachel Morgan ◽  
...  

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.


2020 ◽  
Vol 15 (2) ◽  
pp. 153-160
Author(s):  
Yumie Yokoi ◽  
Tomoko Tamaki ◽  
Anri Inumaru ◽  
Makoto Fujii ◽  
Mayumi Tsujikawa

Sexualities ◽  
2020 ◽  
pp. 136346072093238
Author(s):  
Claude Chidiac

The available evidence demonstrates that lesbian, gay, bisexual, and transgender (LGBT) people face challenges when accessing palliative care services, and receive suboptimal care at the end of life. This is mainly attributed to assumed heterosexuality, lack of knowledge and understanding of LGBT issues and specific healthcare needs, discrimination, homophobia, and transphobia. In Lebanon, legal and institutional support for LGBT individuals is minimal, and palliative care provision remains scarce and fragmented. This compounds the impact of social stigma and marginalisation, and results in unrecognised palliative and end of life care needs for the LGBT individual. This short commentary discusses the development of an LGBT palliative care workshop in Lebanon, which was the first initiative of its kind in the Middle East and North Africa (MENA) region. It also explores how this initiative has led to further developments, and how these efforts can be replicated in other countries in the MENA region.


Author(s):  
S Kite ◽  
A Cracknell ◽  
A Hurlow ◽  
C Iwaniszak ◽  
C Pattison ◽  
...  

2007 ◽  
Vol 17 (1) ◽  
pp. 57-62 ◽  
Author(s):  
Linda Wright ◽  
Deborah Pape ◽  
Kelley Ross ◽  
Michael Campbell ◽  
Kerry Bowman

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