Participation in questionnaire studies among couples affected by breast cancer

Abstract

Socioeconomic characteristics of patients and partners, and morbidity of partners may influence participation in couple-based psychosocial breast cancer research. Breast cancer-related characteristics do not seem to influence participation.

Recruitment of breast cancer survivors and their caregivers: implications for dyad research and practice

“…Nevertheless, this study implies that once sexual minority women are enrolled and given the option of providing contact information for a spouse/partner or other support person, they are likely to have informal caregivers participate. Our other findings, including individual and dyad characteristics related to caregiver participation, are also consistent with previous research in predominantly heterosexual study populations or assuming heterosexuality [11,13,14].…”

“…This finding extends research on recruitment and retention of individual breast cancer survivors [41] and may reflect response biases that have been consistently observed throughout epidemiologic [12] and breast cancer literature [15,41,42]. Similarly consistent with previous research, we found that survivors with higher numbers of comorbidities were less likely to have caregivers participate, which may reflect time constraints or lower quality of life among caregivers [14,15]. In addition to the study design and recruitment considerations discussed below, these individual characteristics of survivors that relate to their caregivers' participation should be carefully assessed as potential sources of participation bias in future dyad-focused research and practice.…”

“…Representativeness may also be limited in couplesfocused research, with higher levels of participation being observed among caregivers who were younger and had better physical functioning and mental health, and among dyads with higher relationship satisfaction [13,14].…”

“…Significantly, the emerging literature on breast cancer survivor-caregiver dyads has focused almost exclusively on heterosexual dyads of female survivors and male caregivers, typically in the context of marriage. Eligibility criteria for most existing dyadic studies have required female survivors to nominate a male spouse or cohabitating partner [14], and some studies have had to exclude women with female partners due to sample size constraints [15]. However, researchers are increasingly recognizing that breast cancer affects all women, regardless of sexual orientation or marital or partnership status.…”

“…Existing cancer survivorship research with dyads of survivors and caregivers [13,14], which has identified some potential biases in dyad participation [11], have assumed heterosexuality. However, caregiving experiences and potential barriers to dyad participation in research studies and interventions likely differ between sexual minority and heterosexual populations due to the experience, perception, and anticipation of social stigma and discriminatory policies [34].…”