Chronic pain among Somali pastoralists in Ethiopia: A mixed-methods study
Eleonore Cäcilia Baum1,2,3, Sied Abdi4, Peter van Eeuwijk1,2, Jan Hattendorf1,2, Rea Tschopp1,2,5, Birgit Vosseler3, Jakob Zinsstag1,2, Nicole Probst-Hensch1,2
1Swiss Tropical and Public Health Institute (Swiss TPH); 2University of Basel; 3Ostschweizer Fachhochschule (OST); 4Jigjiga University (JJU); 5Armauer Hansen Research Institute (AHRI)
Background
Despite chronic pain being one of the leading causes of disability worldwide, it lacks the necessary prioritization in global health agendas. Pain management as an essential component of palliative care remains particularly neglected in the global South and among marginalized communities, such as pastoralists, with underrepresentation in Sub-Saharan Africa's pain research.
Objectives
To explore the perceptions, notions and burden of chronic pain among adult pastoralists in the Somali Regional State of Ethiopia.
Design
The study followed a mixed-methods sequential exploratory study design. The project is embedded within the Jigjiga University One Health Initiative (JOHI). The initiative strives to improve the health and wellbeing of pastoralists, using transdisciplinary research approaches.
Methods
In the qualitative study phase, focus group discussions and semi-structured interviews were conducted with health professionals and pastoralists. The insights from the studies formed the foundation for developing a pastoralist-specific questionnaire to assess chronic pain burden. The questionnaire was piloted and later applied in a survey among 150 households. The households were randomly selected using GPS-based household location.
Results
Chronic pain was perceived as a complex, interconnected experience, with no specific term for pain in the local language. Pastoralists relied on distinct illness beliefs, where spirituality and community played a mediating role. Stigmatization and stoicism hindered pain reporting, with health professionals exhibiting demeaning attitudes. The survey indicated a chronic pain prevalence of nearly 30% among adult Somali pastoralists, with women and the elderly being more vulnerable. The body sites most commonly affected were the knees, followed by the lower back with moderate interference on overall activity and enjoyment.
Conclusion
This study reveals a substantial burden of chronic pain likely impacting not only pastoralists themselves but also their livelihoods, animals, and communities. The findings provide an in-depth understanding of chronic pain in a unique context, emphasizing the importance of culturally sensitive, pastoralist-specific pain management. Aligned with global health agendas, the study advocates for equitable access to comprehensive health services for vulnerable populations. Recognizing and incorporating pastoralists' self-care practices and lay health knowledge into the palliation of pain is essential.
Information meetings stimulate older people to talk about their wishes at the end of life.
Tessa D. Bergman1,2, Annicka G.M. van der Plas1,2, H. Roeline W. Pasman1,2, Bregje D. Onwuteaka-Philipsen1,2
1Department of Public and Occupational Health, Amsterdam UMC, Amsterdam, The Netherlands; 2Center of Expertise in Palliative Care, Amsterdam UMC, Amsterdam, The Netherlands
Background
Information meetings are a way to inform older people about end-of-life care, increase awareness, and to prepare for advance care planning (ACP). Meetings are organized by general practitioners (GPs) inviting their own patients or by other organizations (e.g. hospice, welfare organization) targeting older people in general.Objectives
To assess whether information meetings increase ACP conversations with the GP and relatives and advance directives in older people, and to explore which factors are associated with having ACP conversations with the GP in response to a meeting.
Design
A pre-post interventional study was designed with questionnaires before (T0), at the end (T1), and 6 months after the information meeting (T2).Between February 2021 and December 2022, 124 information meetings were organized, of which 59 by GPs and 65 by other organizations.
Methods
2,230 older people attended a meeting and filled out questionnaires directly before and after the meeting, with 1,212 of them also completing a questionnaire six months later. Descriptive statistics and logistic regression analyses were done.
Results
Six months after the meeting (T2), 26% of attendees had had an ACP conversation with their GP in response to the information meeting. Age (OR 1.05; CI 1.03-1.08) and having discussed wishes with a physician before the meeting (OR 2.53; CI 1.82-3.51) were significantly associated with having had an ACP discussion with their GP. Type of meeting (GP vs other), sex, and having recorded or discussed wishes with relatives before were not associated. Further, more older people discussed their wishes with relatives (T0: 59%; T2: 83%) and recorded their wishes (T0: 38%; T2: 52%) at T2.
Conclusion/discussion
Information meetings about end-of-life care stimulate older people to have ACP conversations with GPs and relatives and to record wishes. The type of meeting, by GPs or others, does not affect ACP conversations with the GP in response to the meeting. ACP ideally includes regular reflection on wishes; the meetings stimulate regular ACP conversations with the GP.
Ethnic disparities in rates of opioid prescribing for cancer pain and impact on health service use in the UK: Findings from an observational cohort study
Jonathan Koffman1, Sophie Law-Clucas1, Sabrina Bajwah2, Gemma Clarke3, Rashmi Kumar2, Martin Gilliford2, Stephen Barclay4, Emeka Chukwusa2
1Wolfson Palliative Care Research Centre, Hull York Medical School, United Kingdom; 2Cicely Saunders Institute, King's College London, United Kingdom; 3University of Leeds; 4University of Cambridge
Background: Relief from cancer pain is a public health issue and a human right. Opioids are effective in managing pain and are a population-based quality marker for end-of-life care. Ethnic inequity is evident in the receipt, experiences and outcomes of end-of-life care. No UK research has examined if the prescribing of opioids varies by ethnic group.
Aim: To examine trends in opioid prescribing patterns regarding patient ethnicity during the last six months of life and describe its association with health service.
Design: Observational cohort study.
Methods: 232329 adult patients aged ≥18 years in England diagnosed with cancer who died between 2011 and 2021 using linked data from the Clinical Practice Research Database, Hospital Episode Statistics and Office for National Statistics. Opioid prescription rates during the last 6 months of life were described. Poisson regression models fitted using Generalised Estimating Equations examined associations between opioid prescribing and ethnicity and health service use. The model was adjusted for patients’ sociodemographic and clinical characteristics. The strength of association was described using adjusted rate ratios (aRR) and 95% confidence intervals (95% CI).
Results: The most common cancers were lung (56779, 24.4%) colorectal (43524, 18.7%) and breast cancer (42710, 18.4%). Less than half (97734, 42.1%) of patients received at least one opioid prescription during the last 6 months of life. Compared to the White British reference population the aRRs of opioid prescribing were markedly lower for patients from minority ethnic communities - Black aRR 0.87 (95% CI 0.78– 0.98), South Asian aRR 0.86 (95% CI 0.77–0.96), mixed ethnicity aRR 0.75 (95% CI 0.61–0.91) and ‘other’ ethnicity aRR 0.82 (95% CI 0.70-0.97). Rates of emergency department attendance were commensurately higher for patients from minority ethnic communities than the reference group - Black aRR 1.08 (95% CI 1.03-1.13), South Asian aRR 1.12 (95% CI 1.07 – 1.17) mixed ethnicity aRR 1.13 (95% CI 1.01 -1.26) and ‘other’ ethnicity aRR 1.04 (95% CI0. 95-1.13).
Conclusions: We identify novel public health findings. Disparities exist in rates of opioid prescribing among minority ethnic patients and differences in health service use, both with potential negative impacts on patient quality of life. Future research is needed to explore explanations of why differences exist leading to a path to patient benefit.
Using relational ethics to guide equity in public health palliative care
Kristina Alexis Smith, Kelli Stajduhar
University of Victoria, Canada
Background: Evidence suggests that people experiencing inequities and who are highly marginalized (e.g., people impacted by racism, sexism, discrimination, stigma, mental illness, substance use issues, disability, and the effects of homelessness; also referred to as structurally vulnerable) often die alone, in pain, not receiving the care they need. Some research even points to individuals who are highly marginalized not feeling worthy of care. The need to consider equity in the context of palliative care has emerged but little attention has been paid to how ethical decision-making generally, and relational ethics, specifically, could provide guidance in the care of individuals who are highly marginalized who are on a palliative trajectory. Relational ethics offers a model of care and decision-making framework that emphasizes how clients, health care providers, and larger social structures are interwoven, and acknowledges that one’s background and relationships influence their choices. Relational approaches in the context of public health palliative care have the potential to provide a lens to better support the delivery of equitable care and change the discourse around how care is offered to individuals who are highly marginalized. Objectives: The aim of this session is to explore relational ethics as a way to approach equity in public health palliative care in order to support clients facing structural vulnerabilities. Design/Methods: Case based discussions theoretically-informed by relational ethics will be used to show how a relational ethics framework can facilitate the development of collaborative partnerships with clients, health care providers, and community-based stakeholders to enable an equity and public health focused approach to the delivery of palliative care. Results: In this session, learners will explore how relational approaches can support decision-making and care delivery that is trauma-informed, harm reduction focused, culturally sensitive, and supportive of clients’ values. Conclusion: Relational ethics can support social change in equity and palliative care by contributing ethically-informed ways of caring for/with/about individuals who are highly marginalized.
Governance and organisation of palliative care in cancer care in Sweden - cancer care leaders’ perspectives
Anna O'Sullivan1,2, Joakim Öhlén3,4,5, Stina Nyblom5,6, Anneli Ozanne3,7, Carl-Johan Fürst8,9, Cecilia Larsdotter1
1Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden; 2Department of Health care Sciences, Marie Cederschiöld University, Stockholm, Sweden; 3Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; 4Centre for Person-centred Care (GPCC) Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; 5Palliative centre, Sahlgrenska University Hospital, Gothenburg, Sweden; 6Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Sweden; 7Department of Neurology, Sahlgrenska University Hospital, Gothenburg, Sweden; 8Faculty of Medicine, Department of Clinical Sciences, Lund University, Lund, Sweden; 9The Institute for Palliative Care, Respiratory Medicine, Allergology, and Palliative Medicine, Lund University, Lund, Sweden
Background
Governance and organisation of care is driven by policy and inclusion of palliative care in policy has been encouraged internationally, and gradually implemented in Sweden. However, governance and organisation of palliative care in cancer care in Sweden has not been systematically reviewed previously.
Objectives
The aim of this study was to investigate cancer care leaders’ perspectives on governance and organisation of palliative cancer care in Sweden.
Design
Qualitative design.
Methods
Participants in this study were leaders and patient representatives in the national cancer care organisation for different cancer diagnoses, including palliative care, and heads of regional cancer centres. They were identified through regional cancer centres’ websites, policy documents for cancer care and websites from national patient organisations. In total 157 leaders were invited to participate in an interview, and 36 participated in 16 interviews; ten individual and six group interviews with 2-6 participants in each.
Results
Governance and organisation of palliative care was seen as primarily performed on an individual and local level, rather than regionally or nationally – large differences locally within regions were described, however differences between regions were also stressed. A scarcity of national governance for palliative cancer care was voiced, and a more nationally aligned governance and organisation with a minimum standard for palliative care was called for. Discussions were about continuation of oncological treatments late in patients’ trajectories, which hindered early integration of palliative care and the possibility of dying at home. Specialised palliative care was expressed as care of the dying and although general (non-specialised) palliative care was not clearly defined, it was expected to be provided by all healthcare professionals. Furthermore, the discussions were about prevailing lack of knowledge and reluctance towards palliative care amongst the public and clinicians.
Conclusion
The result indicates that national prerequisites for palliative care varies in ways that may hinder equity in palliative care. National governance and a nationally equivalent organization with strategies and minimum standards to enable palliative care according to patients’ preferences are called for. The possibility to die in one’s preferred place, and especially at home, requires knowledge about palliative care and early integration of palliative care.
|
