Information needs of people diagnosed with cancer and their caregivers

Abstract

This study examined the information needs of people experiencing cancer in their own lives or in the lives of members of their family. It focussed on the felt needs of participants, examining participants' reactions to this stressful situation and what part information played in it for them. The questions asked allowed insight into the personal needs of the participants, the different responses participants had to the provision of information, the different needs they have at different stages of the disease, and a description of the various types of information need they have. Three focus groups, each with from five to ten volunteer participants, were run to survey the information needs of these people. The data collected reflected the difficulty experienced by many of them in finding information, or in understanding the information given to them by the medical professionals, often because emotional informational needs were ignored and therefore shock prevented the understanding of explanations of practical, or physical matters relating to treatment. Data was used as an evaluation of the information delivery of the Wellington Division of the Cancer Society of New Zealand and suggestions are provided for more effective service delivery. The experiences of the participants lead to the conclusion that there is a serious gap between the information needs of cancer patients and their caregivers. It appears that medical professions in general fail to be aware of the emotional, psychological, and spiritual needs of their clients particularly at times that are likely to be stressful and thus can fail in their legal and professional responsibility to ensure that their patients give informed consent to treatment. Recommendations are practical and include suggestions as to how the medical professions and the Society might cooperate to improve information delivery, and to give their clients easier access to the help supplied by government agencies.