Suffering and Its Explanation in Couples Impacted by Breast Cancer: Development and Testing of an Explanatory Model

Abstract

Background: Suffering is a universal human experience. However, its definition fails to reflect the most recent evidence and does not reflect a comprehensive review of the concept. Both women with breast cancer and their intimate significant other experience significant psychological suffering, and growing evidence has shown that couples often cope with breast cancer jointly as a system rather than as individuals. However, there is very little known about the ways in which couples cope with breast cancer as a dyadic system. Further, little is known about which specific forms of common dyadic coping are linked to less psychological suffering and better health outcomes. Also less well understood is whether and what types of couples’ congruence in common dyadic coping relate to better health outcomes.Purpose: This three-study dissertation aims to fill these gaps by 1) conducing a comprehensive review and analysis of the concept of suffering and proposing a definition that integrates current studies and analyses of suffering; 2) developing a new measure of common dyadic coping; and 3) examining the associations between the magnitude and types of common dyadic coping, congruence in common dyadic coping, and psychological suffering in women with breast cancer and their spouse caregivers. Methods: The first study of this dissertation used Rodgers’ evolutionary approach to guide the concept analysis. The second and third study were secondary analyses using baseline data of a recently completed randomized clinical trial, Helping Her Heal, which tested the efficacy of a five-session psycho-educational intervention targeting marital communication and interpersonal support. Participants include 343 women with early-stage breast cancer and their 343 spouse caregivers. Women were eligible if they were diagnosed within the past eight months; married or in an intimate relationship with her spouse caregiver for at least six months; could read and write English; and lived within 100 miles of the study center. Spouses also need to speak English and reside in the same residence to be eligible. Measurement construction in Study 2 involved three phases: 1) an expert panel review to confirm the conceptual fit of items to measure common dyadic coping extracted from the Mutuality and Interpersonal Sensitivity Scale used in the completed clinical trial; 2) exploratory factor analysis to identify the factorial structure of the new measure; and 3) confirmatory factor analysis to examine goodness of fit of the identified factorial model. In Study 3, the Center for Epidemiologic Studies-Depression Scale and the Spielberger State-Trait Anxiety Inventory were used to measure psychological suffering. Common dyadic coping was assessed by the new measure developed in Study 2. Congruence in common dyadic coping was assessed by the absolute difference between women’s and spouses’ common dyadic coping scores. Multiple linear regression and path analysis were used to examine the relationship between these variables. Results: In Study 1, 172 articles out of initially identified 5628 records were included in the concept analysis. Analysis identified nine attributes of suffering (universal and unavoidable, individualized and subjective, multidimensional, overwhelming negative emotion, considerable duration and intensity and dynamic, loss of control, crisis of meaning and meaning making, unspeakable, and loneliness), three antecedents of suffering (capacity to perceive suffering, threats to the soundness/intactness/homeostasis of the person, and considerable magnitude beyond the person’s threshold to bear and cope), and two types of consequences of suffering (negative and positive). Study 2 generated a 12-item, 4-factor measure of common dyadic coping with a particular focus on open communication (CDC-C). The four factors include: Keeping the communication open with each other about breast cancer; Sharing a positive outlook on breast cancer; Avoiding discussion of negative thoughts and feelings about breast cancer; and Spending sufficient time together talking about breast cancer. Model fit was satisfactory for both diagnosed women and spouses, and internal consistency reliability indicated by McDonald’s omega was acceptable. Study 3 found that higher level of common dyadic coping predicted lower psychological suffering in both diagnosed women and spouses. Greater congruence in common dyadic coping also predicted lower psychological suffering. Different types of common dyadic coping and its congruence related to different outcomes in women and spouses. Conclusions: This dissertation generated a comprehensive definition of human suffering that provided a conceptual foundation for future research, including development or refinement of assessment tool of suffering, testing theoretical models, and developing theory-based interventions to alleviate suffering. It also generated a new measure that can be further validated and used to assess couple’s joint communication efforts to deal with shared stressor in future research. Further, it created important implications for health care in couples facing breast cancer that higher use of open communication and sharing a positive outlook and less use of avoidance coping have potential to enhance psychological adjustment.