Evaluation of a hospital-based cancer information and support centre

Abstract

Although information seeking is encouraged by health care professionals as a positive coping strategy evidence suggests information needs of those affected by cancer are not always fully met. In response to the need for novel models of information provision and educational support for people affected by cancer, a hospital-based cancer information and support centre (CISC) was introduced into a tertiary cancer hospital. Professional support is provided by a cancer support nurse (CSN) with the clinical experience of working with cancer patients, whilst peer support is provided by volunteers. A survey was developed to ascertain the perceptions and experiences of consumers (users) of a hospital-based CISC. The aim was to understand what information and support patients and families consider important and helpful in order to develop the service to reflect the needs of its users. During a 12-month period 111 surveys were distributed to users of the centre. Sixty-nine surveys were returned (62.1%). Nearly all visits were motivated by the need to access (58/84.0%) information, indicating an unmet or changing need. The CSN initiated referrals to support services, both internal and community based, for 21 (53.9%) participants with whom there was contact. Contact with the CISC volunteers also resulted in internal or community-based referrals for 15 (32.6%) of participants. Of note, half of the participants (35/50.7%) reported seeking additional information from the internet as a consequence of having visited the CISC and/or having contact with the CSN or volunteer, in contrast to the six (8.7%) who had reported internet use for information prior to their first visit. Participants indicated a desire for the service to provide additional support to enhance self-care capacity and to do so alongside other people affected by cancer. Our study results support the capacity of a hospital-based CISC to provide a highly valued service that can broaden information options and meet changing information and support needs of people affected by cancer in an ongoing capacity. An experienced, qualified CSN in this setting is ideally positioned to screen for unmet information and support needs and deliver tailored education to support both inpatient and ambulatory care services. Information prescriptions have the potential to provide a 'directed information seeking approach' to those who visit a CISC. Through the use of information technology there is scope to develop information and support that expands beyond pamphlets and booklets.