Alicia G. Dugan, PhD, University of Connecticut School of Medicine; Ragan E. Decker, MS, University of Connecticut; William S. Shaw, PhD, University of Connecticut School of Medicine; Sara Namazi, PhD, Springfield College; Jennifer M. Cavallari ScD, CIH, University of Connecticut School of Medicine; Martin G. Cherniack MPH, MD, University of Connecticut School of Medicine; Keith M. Bellizzi, PhD, University of Connecticut; Thomas O. Blank, PhD, University of Connecticut
Breast cancer and treatment regimens can produce lasting symptoms that pose significant challenges for workers to return to work or stay at work. In this qualitative study we sought to identify the types of employer support that breast cancer survivors most value and desire, and sources of support within employing organizations. The three research questions were: (1) What types of employment- and health-related support are most valuable to receive from employers during early survivorship?, (2) What types of employment- and health-related support are desired but not received from employers during early survivorship?, and (3) What people within the organization provide or do not provide support during early survivorship?
Currently, about four million U.S. adults of working age are cancer survivors – people living after a cancer diagnosis – and the prevalence of working survivors is rising as treatments improve and the workforce ages.1,2 Given that 38% of cancer survivors fail to return to work (RTW),3,4 it is essential to identify factors enabling a successful RTW after treatment. Survivors face health-related difficulties including treatment after-effects and cancer recurrence, as well as work-health conflict (difficulty balancing work and cancer management) which can hinder the RTW process.3,5 Individual factors that influence RTW have been studied (e.g., work capacity), but organizational facilitators and barriers to survivors’ sustained employment have received less research attention. Moreover, RTW interventions have been designed for individuals (e.g., survivor self-advocacy, clinician skill-building) rather than organizations.6 Organizational support is a modifiable factor and strong RTW predictor for workers managing chronic diseases.7-9 These findings may be partially generalized to cancer survivors, but a detailed understanding of survivors’ unmet support needs and employer-based best practices for supporting survivors is needed. We examined breast cancer survivors’ unmet needs for organizational support and the role of organizational actors in providing support for the purposes of developing future interventions.
Breast cancer survivors who were >18 years of age, able to speak and read English, ended treatment within the past 36 months, and were employed 20+ hours per week at time of diagnosis and at eligibility screening, were invited to take an online survey. Ninety-four participants responded to an open-ended survey question that asked: “What information, emotional support, or practical assistance did your employer, supervisor, or coworkers provide you (or could they have provided you) to make it easier to cope with the challenges of having cancer and keeping a job?” We content-analyzed qualitative data gathered from question responses using the constant comparative method. We identified recurrent themes (until reaching saturation) related to type of support, whether support was received or not, and the organizational members who provided support. Discrepancies were resolved through discussion, consensus, and the refinement of code definitions.
On average, respondents were 51 years old (SD = 9.8), female (98%), White (97%), married/partnered (70%) and highly educated (79% had a college or graduate degree). Most were employed full-time (85%) and average job tenure was 12 years (SD = 9.2). The average time since cancer diagnosis was 1.5 years. We identified five major themes and numerous subthemes related to type of organizational support. Instrumental (practical) support was the most valued (39%) and usually received (86%, when cited) support. Emotional support was also valued (20%) and was the most received type of support (90%). Time-related support (time off from work) was highly valued (16%) but the least-received type of support (74%). Other themes included non-specific support and support not provided. Regarding sources of support, survivors specifically referenced supervisors (11%), coworkers (10%) and human resources (3%).
Our findings confirm other studies showing that instrumental support in the form of flextime, telecommuting, reduced hours and reduced workload are a helpful, received kind of support. Few studies have focused on navigation/coordination, an unmet need for survivors identified in our study. As found in other studies, empathy was also highly valued, but our finding that it is not perceived as supportive when employers act as if “everything is normal”, contrasts with a recent study’s findings that from the employer’s perspective, acting as if everything is normal is perceived as supportive.10 Future research should examine discrepancies between what survivors and employers perceive as supportive. Paid and unpaid time off from work was an unmet need among survivors, which is not always found in similar studies of organizational support (mostly international); likely due to our sample being based in the US, where there is no federal policy mandating paid time off for workers. 11
Breast cancer survivors rate employer support as an important factor in workplace retention and day-to-day coping. Therefore, coping with work and health challenges may benefit if employer support for returning breast cancer survivors can be improved. We will use results to design tailored interventions to better support cancer survivors, which may be applicable to workers living with other chronic health conditions.