Pain is one of the most neglected areas of care in sub-Saharan Africa. Access to adequate pain management is important, especially in marginalised populations, such as pastoralists. Little is known about health professionals’ perceptions of pain-related care for Somali pastoralists. This study seeks to understand health professionals’ perceptions of Somali pastoralists in the context of pain management in Eastern Ethiopia. Within the scope of this qualitative multicentre study, we conducted semi-structured interviews with 17 health professionals (mainly nurses) experienced in treating Somali pastoralists with pain. Data analysis was based on the coding paradigm proposed by Strauss and Corbin within Grounded Theory methodology and resulted in a conceptual model of pastoralist-specific pain management. We gave voice to pastoralists in the study design, for example, through focus group discussions conducted prior to this study. Our study is part of a larger ongoing research project involving health professionals and pastoralist communities. The perspective of pastoralists is explored in a consecutive study. ‘Patient-professional relationship’ was the core category we identified within the conceptual model. This category was closely linked with issues of ‘(mis)trust’ and ‘communication (barriers)’. ‘Patient-related conditions’ (eg, (under)-reporting of pain, care preferences and beliefs) and ‘health professional-related’ conditions’ (eg, insufficient training, (under)exposure to local culture) had an influence on the core category. Contextual factors proved to be relevant as well, such as age and gender. The study highlights the complexity of pain management among marginalised communities, such as pastoralists. Health professionals perceive Somali pastoralists to have distinct illness beliefs and pain concepts influencing their health-seeking behaviour. The study highlights the importance of reaching this patient group with culturally acceptable and comprehensive pain management strategies.
BACKGROUND Most people wish to die at home, but most people in Switzerland die in hospitals or nursing homes. Family caregivers often offer support so patients with palliative care needs can stay at home for as long as possible. However, crises and unplanned hospital admissions often occur in this setting because of family caregiver strain and symptom severity in patients. The so-called smart devices such as wearables or smartphones offer the opportunity to continuously monitor certain parameters and recording symptom deteriorations. By providing professionals with this information in a timely manner, crises in the home could be avoided. OBJECTIVE The aim of this interdisciplinary study is to explore the symptom burden of people with palliative care needs who are cared for at home and to understand the development of crises in the home care setting. On the basis of the findings from this study, we will develop an early warning system to stabilize the home care situation and to prevent critical events from happening, thereby reducing avoidable hospitalizations. METHODS A mixed method study is being conducted consisting of 4 main consecutive phases: (1) developing the monitoring system; (2) pretesting the system and adapting it to user needs; (3) conducting the study in the palliative home care setting with approximately 40 patients; and (4) distinguishing symptom patterns from the collected data specific to crisis emergence, followed by the development of an early warning system to prevent such crises. In study phase 3, each patient will receive an upper arm sensor and a symptom diary to assess symptom burden related to patients and family caregivers. A within-case analysis will be conducted for each patient’s situation followed by a cross-case comparison to identify certain symptom patterns that may predict symptom deterioration (study phase 4). RESULTS The collaboration with the local mobile palliative care team for participant recruitment and data collection has been established. Recruitment is forthcoming. CONCLUSIONS We expect the findings of this study to provide holistic insight into symptom burden and the well-being of patients with palliative care needs and of their family caregivers. This information will be used to develop an early warning system to avoid the occurrence of potential crises, thereby improving palliative care provision at home.
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