Exploring the rationale, experience and impact of using Cancer Information and Support (CIS) services: an international qualitative study

PURPOSE: The aim of this study was to develop an in-depth understanding of the rationale, experiences, evaluation and outcomes of using Cancer Information and Support (CIS) services in Australia, the UK and USA. METHODS: Semi-structured interviews were used to gather data between November 2015 and January 2016. Telephone interviews were recorded, de-identified, transcribed and thematically analysed. Ten users from each of three international CIS services (n = 30 in total) were recruited. Participants were eligible for inclusion if they had utilised the CIS in 2015 via telephone contact with a cancer nurse and identified as a patient or cancer survivor, or friend or family member of such a person. RESULTS: Four major themes were derived and included a total of 25 sub-themes. Key themes included (i) drivers for access, (ii) experience of the service, (iii) impact and (iv) an adjunct to cancer treatment services. CONCLUSIONS: Cancer Information and Support nurses internationally act as expert navigators, educators and compassionate communicators who ‘listen between the lines’ to enable callers to better understand and contextualise their situation and discuss it with their healthcare team and family and friends. Use of the service can result in reduced worry, extend support repertoires and enable use of new knowledge and language as a tool to getting the most from the healthcare team. The positioning of CIS alongside cancer treatment services aids fuller integration of supportive care, benefiting both patients and clinicians. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s00520-016-3513-7) contains supplementary material, which is available to authorized users.