Helping Canadians with cancer information and support and COVID-19

Overview:

Between January and May 2020, the CIH undertook a brief survey with callers who made Information and Support inquiries to collect meaningful client reaction and feelings, immediately following their interaction with CIH Information Specialists.   Results showed high degrees of caller satisfaction and mission impact.  Unintentionally, about half of the evaluation timeframe overlapped with the advent of the COVID-19 pandemic.  The evaluation results may be affirmed even further in the context, at the time, of a largely unknown virus with alarming impacts on public health, cancer system and personal distress.

That the CIH could produce such significant evaluation outcomes under circumstances of public duress, lack of scientific evidence about health and safety in general, and the intersection of COVID-19 and cancer in particular, may attest further to the value and effectiveness of the Cancer Information Helpline.

This report will provide information in two sections: 1) the CIH evaluation; 2) themes from COVID-19 inquiries to the helpline in the overlapping period of time.

1. Analysis of Cancer Information Helpline (CIH)

Written by Margaret Fitch, PhD, Toronto, Canada (February 2021)

Executive Summary of CIH Evaluation:

The Cancer information Helpline (CIH) assists people with cancer, caregivers or anyone who needs help understanding cancer or assistance to find cancer-related services.  Between January and May 2020, the CIH undertook a brief survey with callers who made Information and Support inquiries (not business calls) to collect meaningful client reaction and feelings, immediately following their interaction with CIH Information Specialists. The intention was to apply the results to program quality improvement and promotion and help to articulate the value or benefit of the CIH from the perspective of clients.

Data were collected through live agent interviews (n=236) over three weeks in January 2020, and an Interactive Voice Response (IVR) System (n=278) between February and May 2020. Based on the number of potentially eligible callers during the data collection period, the response rate for completed interviews was 37.5% for the live agent approach and 13.5% for the IVR approach. Technical issues led to about one-quarter (28.4%) of the IVR files being unusable for data analysis.

Most callers were individuals with a cancer diagnosis (53.8%) while family and friends accounted for the bulk of the remaining calls. The most frequently cited ‘main’ reason for calling was for information (42.7%) or for practical assistance (16.2%). Information calls were primarily questions about cancer, treatment options, and management. Practical assistance calls were to arrange transportation to cancer appointments or to find a wig or breast prosthesis.

Responses from the callers indicated high satisfaction with the service and repeated accolades of praise for staff members and the manner in which they answered calls. The service was described as helpful, informative, and ‘wonderful’. The help provided by the service was perceived primarily as providing information or links to other resources. However, many participants also described the help they received through the opportunity to talk with an individual who was knowledgeable, understanding of their situation, non-judgemental, and compassionate.

At the end of the call, the majority of participants in the survey indicated their objective in calling the CIH had been achieved. They identified a range of outcomes including increased knowledge and understanding, enhanced confidence and capacity to know what to do next, feeling better able to make decisions and talk with their health care team, and reduced stress and uncertainty. The themes which emerged during the analysis were: 1) being armed with information, 2) feeling a weight off my shoulders, 3) seeing a light at the end of the tunnel, and 4) wishing I had all the answers.

A few respondents (4.2%) shared that they experienced negative responses at the end of the call or did not feel assisted by the interaction. In some instances, respondents now understood their questions had to be answered by their physician, there were no readily available answers, or the type of service they were looking for did not exist. Others acknowledged their personal situation (i.e., having cancer) would continue (beyond the call) and they still had to cope with it.

Overall, the perspectives from the callers who engaged in the survey indicated the CIH is providing a valued service. It is serving its mandate and doing so in a compassionate and supportive manner. Clearly, the knowledge and skill of the information and support specialists is key to the outcomes that are achieved. For the majority of callers, the outcomes which were achieved were aligned with their original reason for calling the CIH.    

2. COVID-19 Inquiry Tracking and Analysis

CCS maintained a database of all client contacts related to COVID-19 received by the Cancer Information Helpline, CancerConnection.ca (online peer community) and CCS Lodges.  Volumes and themes over the course of the pandemic are still being analysed.

From the start of tracking on March 9^th through to May 31^st (the conclusion of the CIH evaluation), the Cancer Information Helpline (both English and French programs combined) accounted for approximately 62% of all COVID-related inquiries.  More than half of the COVID-19 inquiry timeframe overlapped with the CIH evaluation reported above.  However, some of the evaluation timeframe predated the onset of the pandemic and the evaluation data, and COVID-19 data, have not been collated.  In addition to the imperfect aligning of timing, it is possible that the influence of COVID-19 within the evaluation data pool was affected by sample and/or response biases. 

Practical supports were the main theme of COVID-19 related inquiries; predominantly patients requiring either treatment accommodation or treatment transportation.  During this timeframe, the majority of practical services across Canada were suspended and the CIH was not always able to directly meet the callers’ practical needs.  Similarly, for COVID-19 risks, treatment delays, and symptom assessment/diagnostic delays, the CIH was able to offer general information and encouraged callers to seek prescriptive input from their medical team. 

Regardless of the reason for the inquiry and the availability of services being sought, the CIH provided callers with emotional support, understanding and acknowledgement of the added stressors and challenges caused by the pandemic.  The kind and compassionate nature of the conversations were noted with appreciation by many callers in the CIH evaluation.  This affirms the instrumental value of the supportive care context of CIH calls and the skills of the CIH team in providing a caring experience that is distinct from the specificity of questions posed and responses provided.