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. 2018 Nov 19;17(1):123.
doi: 10.1186/s12904-018-0377-2.

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

S Aebischer Perone  1 , R Nikolic  2 , R Lazic  2 , E Dropic  3 , T Vogel  4 , B Lab  4 , S Lachat  4 , P Hudelson  5 , C Matis  6 , S Pautex  6 , F Chappuis  7
Affiliations

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

S Aebischer Perone et al. BMC Palliat Care. .

Abstract

Background: Many 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.

Methods: We 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.

Results: While 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.

Conclusions: Our 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.

Keywords: Bosnia-Herzegovina; End of life care; Home care; Low and middle income countries; Palliative care; Patients’ perceptions; Terminally ill patients; Transition countries.

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Conflict of interest statement

Ethics approval and consent to participate

The study was approved by the Geneva Canton Research Ethics Commission (CCER) (N°2016-01422) and the ethical board of the PHCC in Doboj. Patients were given verbal and written information about the study. We required and obtained written consent from all patients prior to the interviews. Patients were also informed about the voluntary nature of their participation and they had always the possibility to withdraw at any time during the study.

Consent for publication

Not applicable

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Fifteen themes and their relative weight according to patients
Fig. 2
Fig. 2
Emerging themes (grouping)
See this image and copyright information in PMC

References

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