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

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.

“What is Killing Me Most”: Chronic Pain and the Need for Palliative Care in the Eastern Cape, South Africa

“…Research on the relationship between patients' understanding of pain and reported pain intensity, conducted in developed countries and with patients with chronic lower back pain and chronic fatigue syndrome, has found that basic education about pain can reduce pain intensity and catastrophic thinking about pain. 16,17 Although one study has investigated general information needs of patients in pain in South Africa and Uganda, 18 we are unaware of any research on patient understanding of pain in resource poor settings. This is an important area for further investigation.…”

The prevalence of life-limiting illness at a Ugandan National Referral Hospital: a 1-day census of all admitted patients

“…Further studies have identified advanced care needs in Uganda of communication and information,11 spiritual care,12 13 and for amelioration of pain and psychological distress 14. However, very little is known about the proportion of hospital populations with life-limiting disease, who therefore may have palliative care needs.…”

A Spider in the Web

“…4 Although some quantitative research has been done in the field of palliative care in Uganda, only a few studies have taken a qualitative approach. [5][6][7][8] None of these focus on the work of nurses. For that reason, among others, more research is needed about the palliative care nurse specialist (PCNS) in Uganda. Studying the role of the PCNS in Uganda could potentially contribute to the body of knowledge from which other countries might learn.…”

“…This is possibly a result of the general ignorance about cancer. Selman et al 30 found that patients and caregivers lack information about their condition, and their informational needs are not being attended.…”