How calls from carers, friends and family members of someone affected by cancer differ from those made by people diagnosed with cancer; analysis of 4 years of South Australian Cancer Council Helpline data

Purpose: The purpose of this study is to determine how people diagnosed with cancer who call the Cancer Council Helpline in South Australia differ from carers/family/friends (caregivers) who call. Method: Descriptive, retrospective audit of calls from people who contacted Cancer Council Helpline in South Australia between 16 April 2009 and 16 April 2013 who were diagnosed with cancer (n = 5766) or were the caregivers (n = 5174) of a person with cancer. Results: Caregivers were more likely to be female (p < 0.001); younger in age (p < 0.001); call regarding cancer that was metastasised/widespread/advanced, terminal or at an unknown stage (p < 0.001) and phone requesting general cancer information or emotional support (p < 0.001). This group was more distressed (p < 0.001) but less likely (p = 0.02) to be offered and/or accept referrals to counselling than people diagnosed with cancer who called. Follow-up care was required by 63.5 % of caregivers and 73.1 % of people with cancer according to distress management guidelines; 8.5 and 15.3 %, respectively, accepted referrals to internal services. The most frequently discussed topic for both groups was emotional/psychological concerns. There were no differences in remoteness of residence or call length between groups. Conclusions: Caregivers represented different demographic groups than people diagnosed with cancer who called this helpline. The two groups phoned for different issues, at different stages of disease progression, displayed different levels of distress and, therefore, may benefit from services being tailored to meet their unique needs. These results also demonstrate the capacity of helplines to complement other health services and confirm that callers to cancer helplines exhibit high levels of distress.