Cancer Information and Support (CIS) services are an important source of community-based practical, informational and emotional support for people affected by cancer (PABC) worldwide. They typically include cancer helplines predominately used by people with breast cancer and supportive care programs which act as a useful adjunct to cancer treatment services. CIS services are rarely evaluated for their contribution to outcomes that extend beyond customer satisfaction. Cancer Council Victoria (Australia), Cancer Research UK and the American Cancer Society collaborated in this world first study which aimed to develop an in depth understanding of the rationale, experiences, evaluation and outcomes of using CIS services.
This study utilised a grounded theory qualitative research design. Semi-structured interviews were used to gather data from CIS users between November 2015 and January 2016. Participants were eligible for inclusion if they had utilised a CIS in the participating organisations in 2015 via telephone contact with a CIS nurse, and identified as a PABC or friend/family member. Telephone interviews were recorded, de-identified, transcribed and thematically analysed.
Thirty service users (10 from each country’s CIS) were interviewed. Four major themes emerged: i) Drivers for access ii) Experience iii) Impact and iv) An adjunct to cancer treatment services. Sub-themes included previous hospital experience; seeking answers; nurse as a therapeutic communicator and problem solver; CIS is for everyone; a safe open door; positioning and integration with cancer treatment services; and increased competence and confidence to manage own health and wellbeing.
CIS nurses internationally act as expert navigators, educators and compassionate communicators who ‘listen between the lines’ to enable callers to better understand, contextualise and discuss their situation with their healthcare team and support networks. The positioning of CIS alongside cancer treatment services aids fuller integration of supportive cancer in care which benefits both patients and clinicians.