ArticleBMJ (Clinical research ed.)2009
Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study.
Article in BMJ (Clinical research ed.), 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
36 citing papers in PubMed, 3 syntheses or guidelines pooled it, 85 citations in OpenAlex.
- What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence.Palliative medicine · 2021Pooled it
- Approaches to integrating palliative care into African health systems: a qualitative systematic review.Health policy and planning · 2020Pooled it
- Cervical cancer prevention and treatment research in Africa: a systematic review from a public health perspective.BMC women's health · 2016Pooled it
- Barriers and Facilitators to, and Experience of, Voluntary Medical Male Circumcision Among Men Who Have Sex with Men in China: A Mixed-Methods Study.Archives of sexual behavior · 2023Trial
- Factors, including patient education, that impact cancer treatment adherence in low- and middle-income African countries: a scoping review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- Setting the stage for communication skills training in Rwandan cancer care: a qualitative study of local priorities and key contextual factors.BMC palliative care · 2025Article
- Healthcare Professionals' Knowledge, Attitudes and Practices Toward Providing Artificial Nutrition and Hydration for Patients With Terminal Cancer.Journal of human nutrition and dietetics : the official journal of the British Dietetic Association · 2025Article
- A scoping review of clinical communication in cancer care in Africa.The oncologist · 2025Article
- Improving person-centred care for older persons with serious multimorbidity in LMICs.African journal of primary health care & family medicine · 2024Article
- Caregivers' demands: caring atmosphere expected by cancer patients' caregivers-a qualitative content analysis.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Article
- Impact of patient-centered communication on patient satisfaction scores in patients with chronic life-limiting illnesses: an experience from Kenya.Frontiers in medicine · 2024Article
- Remote Symptom Monitoring to Enhance the Delivery of Palliative Cancer Care in Low-Resource Settings: Emerging Approaches from Africa.International journal of environmental research and public health · 2023Article
- The caring experiences of family caregivers for patients with advanced cancer in Uganda: A qualitative study.PloS one · 2023Article
- Therapeutic pluralism and the politics of disclosure: breast cancer patients' experiences in public healthcare.African health sciences · 2022Article
- Patient experiences of living with cancer before interaction with palliative care services in Zimbabwe: A qualitative secondary data analysis.European journal of cancer care · 2022Article
- Building evidence and capacity in global health palliative care.Ecancermedicalscience · 2022Article
- Symptom prevalence and burden, and the risk of depression among patients with advanced cancer attending two South African oncology units.Ecancermedicalscience · 2022Article
- The burden of serious health-related suffering among cancer decedents: Global projections study to 2060.Palliative medicine · 2021Article
- "The way I am treated is as if I am under my mother's care": qualitative study of patients' experiences of receiving hospice care services in South Africa.BMC palliative care · 2020Article
- Rehabilitation needs in individuals with knee OA in rural Western Cape, South Africa: an exploratory qualitative study.Primary health care research & development · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors at 6 institutions in 4 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo 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.
designSemistructured qualitative interview study.
settingFour palliative care services in South Africa and one in Uganda, covering rural, urban, and peri-urban locations.
participants90 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.
resultsFive 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.
conclusionsLack 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.