Recruitment of carer/person with cancer dyads into a randomised controlled trial: factors associated with non-participation and reasons for decline (#312)
The aims of this study were to determine the profile of non-participants in a multi-centred, randomised controlled trial, designed to test the efficacy of a telephone-based intervention to reduce burden and depression in carers of persons newly diagnosed with cancer; and to examine the reasons for non-participation.
From August 2013 to December 2014, 216 carer/person with cancer dyads were recruited at four Australian hospitals. Individuals diagnosed with cancer (stage I-III) were identified through medical records and invited to participate when presenting at the hospital for treatment, together with their carer (N=737). Interested dyads were given an information sheet, consent form and baseline survey, and were phoned within 48hrs to confirm participation. Reasons for non-participation were collected from dyads who chose not to take part. Descriptive analysis was used to describe sample demographics, X2analysis to examine factors associated with non-participation.
Of 737 eligible dyads, 522 (71%) declined. Dyads were less likely to participate if the carer was male (X2=6.2, p<0.05) and in a non-spousal relationship with the person with cancer (X2=14.5, p<0.05). Dyads were less likely to take part if the person with cancer was receiving chemotherapy or radiotherapy only (X2=98.7, p<0.001) or was treated at a public health service (X2=36.6, p<0.001), as opposed to receiving a combination of treatments and attending a private health service. Most common stated reasons for non-participation were lack of interest (29%), too busy (28%), and no need for support (22%).
This study identifies carer/person with cancer dyads who are most likely to decline participation in health research. Specific characteristics of non-participation in research has implications for evaluating the external validity of findings and future approaches to recruitment.