Social impacts of cancer diagnosis, survivorship, and caregiving in NL

Lay Summary 

*Currently looking for interested investigators from social sciences/survey researchers

Brief background and rationale: Cancer can be a highly stigmatized disease (Wilson and Luker, 2006; Chapple et al. 2004; Gray et al. 2000; Chambers et al. 2012).

Cancer related social issues and stigmatization have been studied and published in scientific literature (Kearney et al. 2003; Knapp et al. 2014). Tools to examine the social stigma in both cancer patients and non-cancer individuals are developed and available for research community (Marlow and Wardle, 2014).

Considering that almost 45% of all Canadians are estimated to be diagnosed with cancer in their life time and this rate is higher in NL when compared to other provinces (Canadian Cancer Statistics, 2016), it is the time that we have a detailed look at the social aspects, impact, and stigma associated with this disease in the NL population.

The main research questions are:
1) What are the common social stigma, discrimination, unfavorable attitude, and stereotyping experienced or perceived by the cancer patients, long-time survivors, caregivers, and their family members?

- These could include their experiences with spouses, children, and other family members, friends, neighbours, boss/colleagues, strangers interacted with during daily life, hospitals/health care employees, banks, insurance/mortgage companies, and other financial or legal institutions.

2) Do these experiences and issues differ by participant group (cancer patients, long-term survivors, care-givers, and family members)?

3) Do these experiences differ by cancer type (for example breast cancer versus lung cancer; childhood cancers versus adult-onset cancers).

Anticipated outcomes:
1. The social and stigma-related issues and needs of the cancer community in NL will be identified. This will be based on the survey-collected list of experienced or perceived stigma and social challenges reported by the survey participants, such as the identity, frequency, extent, and depth of such issues. Additionally, potential variability based on type of cancer or type of participant group will also be examined. Last, the narrative part can provide additional information and will act as a channel for cancer-community in NL to express their experiences/opinions.
2. Reports/publications on the social issues and needs of cancer community in NL will be drafted. These reports/publications would also include an assessment of whether NL differs from other regions/provinces/countries; this could identify potentially unique issues or social structures that we may want to address by future activities in our Province. This being said, it is also possible that the project results will show that the social stigma is much less pronounced here than somewhere else.
3. We also anticipate an increased public and government awareness about the social issues and stigma experienced/perceived by the cancer community in our province.

Clinical Disciplines - Genetics
St. John's
Newfoundland and Labrador
Health Research
Industry Sectors 
Health Care and Social Assistance
Start date 
1 Sep 2018