Addressing the needs of terminally-ill patients in Bosnia-Herzegovina: patients’ perceptions and expectations

Abstract

BackgroundMany terminally ill patients in Bosnia-Herzegovina (BiH) fail to receive needed medical attention and social support. In 2016 a primary healthcare centreer (PHCC) in Doboj (BiH) requested the methodological and technical support of a local partner (Fondacija fami) and the Geneva University Hospitals to address the needs of terminally ill patients living at home. In order to design acceptable, affordable and sustainable solutions, we involved patients and their families in exploring needs, barriers and available resources.MethodsWe conducted interviews with 62 purposely selected patients using a semi-structured interview guide designed to elicit patients’ experiences, needs and expectations. Both qualitative and quantitative analyses were conducted, using an inductive thematic approach.ResultsWhile patients were aware that their illnesses were incurable, they were poorly informed about medical and social support resources available to them. Family members appeared to be patients’ main source of support, and often suffered from exhaustion and financial strain. Patients expressed feelings of helplessness and lack of control over their health. They wanted more support from health professionals for pain and other symptom management, as well as for anxiety and depression. Patients who were bedridden or with reduced mobility expressed strong feelings of loneliness, social exclusion, and stigma from community members and – occasionally - from health workers.ConclusionsOur findings suggest a wide gap between patients’ end-of-life care needs and existing services. In order to address the medical, psychological and social needs of terminally ill patients, a multi-pronged approach is called for, including not only better symptom management through training of health professionals and improved access to medication and equipment, but also a coordinated inter-professional, inter-institutional and multi-stakeholder effort aimed at offering comprehensive medical, psycho-social, educational and spiritual support.Electronic supplementary materialThe online version of this article (10.1186/s12904-018-0377-2) contains supplementary material, which is available to authorized users.

Palliative care needs among patients with advanced illnesses in Bhutan

“…Consistent with previous research in both developed and developing countries [ 28 , 42 – 45 , 70 , 71 ], both cancer and non-cancer patients in Bhutan have varied needs throughout their illness that affects their overall QOL—ranging from physical symptom control to psychological, emotional, cognitive and spiritual support, as well as the need for food and financial assistance. Patients also had information needs about diagnosis, treatment options and side effects along with the need for psychological and spiritual support [ 35 , 72 ].…”

“…The needs of patients with non-malignant conditions are now increasingly identified [39][40][41]. This research found that people diagnosed with advanced malignant and non-malignant illnesses in Bhutan have poor levels of functioning and varied levels of symptom severity indicating high support needs, consistent with advanced illnesses in other LMICs [33,[42][43][44][45]. There was no differences in symptom severity or level of functioning between cancer and non-cancer patients except for constipation (p value < 0.05).…”

Palliative Care Needs among Patients with Advanced Illnesses in Bhutan

“…The needs of patients with non-malignant conditions are now increasingly identi ed [39][40][41]. This research found that people diagnosed with advanced malignant and non-malignant illnesses in Bhutan have poor levels of functioning and varied levels of symptom severity indicating high support needs, consistent with advanced illnesses in other LMICs [33,[42][43][44][45]. There was no differences in symptom severity or level of functioning between cancer and non-cancer patients except for constipation (p value < 0.05).…”

Palliative Care Needs among Patients with Advanced Illnesses in Bhutan

“…The needs of patients with non-malignant conditions are now increasingly identi ed [39][40][41]. This research found that people diagnosed with advanced malignant and nonmalignant illnesses in Bhutan have poor levels of functioning and varied levels of symptom severity indicating high support needs, consistent with advanced illnesses in other LMICs [33,[42][43][44][45]. There was no differences in symptom severity or level of functioning between cancer and non-cancer patients except for constipation (p value < 0.05).…”