BackgroundSocial support plays an important role for health outcomes. Support for those living with chronic conditions may be particularly important for their health, and even for their survival. The role of support for the survival of cancer patients after receiving an allogeneic hematopoietic cell transplant (alloHCT) is understudied. To better understand the link between survival and support, as well as different sources and functions of support, we conducted two studies in alloHCT patients. First, we examined whether social support is related to survival (Study 1). Second, we examined who provides which support and which specific support-related functions and tasks are fulfilled by lay caregivers and healthcare professionals (Study 2).MethodsIn Study 1, we conducted a retrospective chart review of alloHCT patients (N = 173, 42.8% female, age: M = 49.88) and registered availability of a dedicated lay caregiver and survival. In Study 2, we prospectively followed patients after alloHCT (N = 28, 46.4% female, age: M = 53.97, 46.4% ethnic minority) from the same hospital, partly overlapping from Study 1, who shared their experiences of support from lay caregivers and healthcare providers in semi-structured in-depth interviews 3 to 6 months after their first hospital discharge.ResultsPatients with a dedicated caregiver had a higher probability of surviving to 100 days (86.7%) than patients without a caregiver (69.6%), OR = 2.84, p = 0.042. Study 2 demonstrated the importance of post-transplant support due to patients’ emotional needs and complex self-care regimen. The role of lay caregivers extended to many areas of patients’ daily lives, including support for attending doctor’s appointments, managing medications and financial tasks, physical distancing, and maintaining strict dietary requirements. Healthcare providers mainly fulfilled medical needs and provided informational support, while lay caregivers were the main source of emotional and practical support.ConclusionThe findings highlight the importance of studying support from lay caregivers as well as healthcare providers, to better understand how they work together to support patients’ adherence to recommended self-care and survival.

Little is known about how women with a BRCA1/2 mutation develop an individual understanding of their breast and ovarian cancer risk and how this affects their psychological distress. In this study, we investigated associations between illness representations, coping strategies and psychological distress. N = 101 BRCA1/2 mutation carriers answered self-report questionnaires on illness representations, coping strategies, cancer worry and depressive symptoms. Women without cancer were compared to women with a previous cancer diagnosis. Illness representations explained 50% and 45% of the variability in cancer worry and depressive symptoms, respectively. Woman perceiving severe consequences (β = 0.29, p < 0.01) and having more concerns (β = 0.37, p < 0.01) were found to report more cancer worry. Perceiving information about the mutation as less coherent (β = −0.17, p < 0.05) and experiencing negative emotional responses (β = 0.60, p < 0.01) were both associated with more depressive symptoms. Women with a previous cancer diagnosis show patterns of illness representations that are potentially more distressing than women without a cancer diagnosis. Findings suggest that physicians involved in counseling should pay attention to illness representations of distressed women. Thereby, it would be possible to detect maladaptive thoughts associated with the mutation, address negative emotions and encourage adaptive coping strategies.

Background: Science strives to provide high-quality evidence for all members of society, but there continues to be a considerable gender and diversity data gap, i.e., a systematic lack of data for traditionally underrepresented groups. Gender and other diversity domains are related to morbidity, mortality, and social and economic participation, yet comprehensive measures as well as evidence regarding how these domains intersect are missing. We propose a brief, efficient Diversity Minimal Item Set (DiMIS) for routine data collection in empirical studies to contribute to closing the diversity and gender data gap. We focus on the example of health but consider the DiMIS applicable across scientific disciplines.Methods: To identify items for the DiMIS across diversity domains, we performed an extensive literature search and conducted semi-structured interviews with scientific experts and community stakeholders in ten diversity domains. Using this information, we created a minimal item set of self-report survey items for each domain.Findings: Items covering ten diversity domains as well as discrimination experiences were compiled from a variety of sources and modified as recommended by experts. The DiMIS focuses on an intersectional approach, i.e., studying gender, age, socioeconomic status, care responsibilities, sexual orientation, ethnicity, religion, disability, mental and physical health, and their intersections. It allows for data sets with comparable assessments of gender and diversity across multiple projects to be combined, creating samples large enough for meaningful analyses. Interpretation: In proposing the DiMIS, we hope to advance the conversation about closing the gender and diversity data gap in science.