Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study

Lucy Selman, I.J. Higginson, G. Agupio, N. Dinat, J. Downing, L. Gwyther, T. Mashao, K. Mmoledi, A.P. Moll, L.M. Sebuyira, B. Panajatovic, Richard Harding-Swale

Research output: Contribution to journalArticlepeer-review

63 Citations (Scopus)

Abstract

Objectives: To explore the information needs of patients with progressive, life limiting disease and their family caregivers in South Africa and Uganda and to inform clinical practice and policy in this emerging field.

Design: Semistructured qualitative interview study.

Setting: Four palliative care services in South Africa and one in Uganda, covering rural, urban, and peri-urban locations.

Participants: 90 patients and 38 family caregivers enrolled in palliative care services; 28 patients had cancer, 61 had HIV infection (including 6 dual HIV/cancer diagnoses), and 1 had motor neurone disease.

Results: Five themes emerged from the data. (1) Information sources: a lack of information from general healthcare providers meant that patients and caregivers had to draw on alternative sources of information. (2) Information needs: patients and caregivers reported needing more information in the key areas of the causes and progression of the disease, its symptoms and treatment, and financial/social support. (3) Impact of unmet needs: poor provision of information had a detrimental effect on patients’ and caregivers’ ability to cope. (4) Communication: negative experiences of communication with general healthcare staff were reported (misinformation, secrecy, insensitivity). (5) Barriers to effective provision of information: barriers related to symptoms, culture, time constraints in hospital, and paternalism in general health care.

Conclusions: Lack of information was a major theme for both patients and carers, who had important unanswered questions relating to living with a progressive incurable disease. Evidence based recommendations for clinicians are presented, including the proactive provision of information tailored to individual patients and families.
Original languageEnglish
Pages (from-to)1127-1131
Number of pages5
JournalBMJ
Volume338
Issue number7703
DOIs
Publication statusPublished - 22 Apr 2009

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