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


METHODS
Semistructured qualitative interview study.


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


METHODS
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.
Selman
Lucy
L
King's College London, Department of Palliative Care, Policy and Rehabilitation, King's College London, London SE5 9RJ. lucy.selman@kcl.ac.uk
Higginson
Irene J
IJ
Agupio
Godfrey
G
Dinat
Natalya
N
Downing
Julia
J
Gwyther
Liz
L
Mashao
Thandi
T
Mmoledi
Keletso
K
Moll
Anthony P
AP
Sebuyira
Lydia Mpanga
LM
Panajatovic
Barbara
B
Harding
Richard
R
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D005260:Female; D015658:HIV Infections / Q000150:complications / Q000628:therapy*; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000628:therapy*; D009369:Neoplasms / Q000150:complications / Q000628:therapy*; D010166:Palliative Care / Q000592:standards; D010353:Patient Education as Topic / Q000592:standards*; D017060:Patient Satisfaction; D010549:Personal Satisfaction; D012423:Rural Health; D013019:South Africa; D019452:Terminally Ill; D014454:Uganda; D014504:Urban Health; D055815:Young Adult