A new study, led by Lucy Selman and colleagues from King’s College London, has found that patients with incurable, progressive diseases and their family carers in sub-Saharan Africa often do not receive enough information about the patient’s disease and its management, which impacts negatively on their ability to cope with illness.
The results of the study, conducted in collaboration with five palliative care services in South Africa and Uganda and the palliative care associations of South Africa (HPCA) and Africa (APCA), have been published online by the BMJ (British Medical Journal).
A major finding from interviews with 90 patients and 38 family carers was that healthcare staff did not provide enough information to help patients and carers understand the disease, its causes and symptoms, as well as its treatment and management. Patients and carers also felt insufficiently informed about the financial and social support available to them. These information gaps can cause anxiety for the patient and affect the family’s ability to provide good patient care.
Patients and carers drew on a wide range of sources for information, including friends and family, peers with a similar condition and the media. Although patients and carers appreciated efforts made by their palliative care team to provide information, many still had unanswered questions.
For example, a patient with HIV reported that hospital staff never properly explained his diagnosis, likely symptoms and future care. Other patients talked about not receiving the results of blood tests, and described the trauma of being broken bad news in an insensitive manner. Carers reported not being told the patient’s diagnosis directly, but learning it from his or her medical notes or from simply being sent on an HIV education course.
Lack of information causes anxiety
‘The poor knowledge and lack of information provided impacted negatively on patients’ and carers’ ability to cope with their situation. For both groups, not having the information they needed was related to anxiety regarding the disease and the future’, said Lucy Selman, Research Associate in the Department of Palliative Care, Policy & Rehabilitation at King's.
‘The study highlights that it is crucial for all clinical staff to receive generalist training in palliative care skills, including communication and basic counselling. Communication with patients and carers should be open and honest, and records should be kept of the discussions between healthcare staff and patients regarding their condition. It is also essential that services work closely with families and volunteer carers in the community, empowering them to provide the care the patient needs, including sensitive and accurate communication.’
This study is the first to explore the information needs of patients and carers attending palliative care services in Africa, identify information needs and understand past experiences of communicating with healthcare staff. Patients’ diagnoses included cancer (28 cases), HIV infection (61) and motor neurone disease (1).
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