Survivors require guidance to decide whether (or not) to disclose their cancer, how to respond to discriminatory behaviors, and how to best state their needs for workplace accommodations.
Background: Death rates on liver transplant waiting lists range from 5%-25%.Herein, we report a unique experience with 50 anonymous persons who volunteered to address this gap by offering to donate part of their liver to a recipient with whom they had no biological connection or prior relationship (A-LLD).Methods: Candidates were screened to confirm excellent physical, mental, social, and financial health. Demographics and surgical outcomes were analyzed. Qualitative interviews after donation examined motivation and experiences. Validated selfreported questionnaires assessed personality traits and psychological impact.Results: 50 A-LLD liver transplants (LT) were performed between 2005 and 2017.Most donors had a university education, a middle-class income, and a history of prior altruism. Half were women. Median age was 38.5 years (range 20-59 yrs.). Thirtythree (70%) learned about this opportunity through public or social media. Saving a life, helping others, generativity, and reciprocity for past generosity were motivators. Social, financial, healthcare, and legal supports in Canada were identified as facilitators. A-LLD identified most with the personality traits of agreeableness and conscientiousness. The median hospital stay was six days. There was one Dindo-Clavien Grade 3 complication that completely resolved. One-year recipient survival was 91% in 22 adults and 97% in 28 children. No A-LLD reported regretting their decision.Conclusions: This is the first and only report of the motivations and facilitators of A-LLD in a large cohort. With rigorous protocols, outcomes are excellent. A-LLD has significant potential to reduce the gap between transplant organ demand and availability. Highlights• Anonymous liver donors can successfully contribute to the donor organ pool.• Social media can be used to educate communities about this opportunity.• Anonymous donors are motivated by their values and beliefs and are very satisfied with their experience.
Comparison of postoperative outcomes among patients treated by male and female surgeons: a population based matched cohort study. BMJ 2017; 359: j4366. 24 Greenwood B, Carnahan S, Huang L. Patient-physician gender concordance and increased mortality among female heart attack patients.
The provision of appropriate workplace accommodations can enhance survivors' abilities to stay or return to work.
Supports from health care providers in determining work readiness can ensure survivors do not return to work either "too early" or "too late."
Key Points Question How do individuals narrate their experiences of living with type 1 diabetes during early emerging adulthood (the developmental life stage roughly spanning between the ages of 18 and 24 years)? Findings This qualitative study involved in-depth interviews with 33 emerging adults with type 1 diabetes. Narrative analysis identified 3 distinct story types encompassing differing perceptions of living with type 1 diabetes (3i), termed ingrained (characterized by actively integrating diabetes within one’s life), intrusive (characterized by struggles to accept diabetes and a sense of striving for control), and inconspicuous (characterized by attempts to minimize attention toward diabetes to protect one’s sense of normalcy). Meaning The 3i conceptual framework provides a means by which differing emerging adult perceptions of type 1 diabetes can be recognized and articulated, which may help health care professionals better individualize their approaches to self-management support during the transitioning years.
Within mainstream cancer literature, policy documents, and clinical practice, “work” is typically characterized as being synonymous with paid employment, and the problem of work is situated within the “return to work” discourse. The work that patients perform in managing their health, care, and everyday life at times of illness, however, is largely overlooked and unsupported. Drawing on feminist political economy theory, we report on a qualitative study of 12 women living with cancer. Major findings show that the work of patienthood cut across multiple fields of practice and included both paid and unpaid labor. The most prevalent types of work included illness work, body work, identity work, everyday work, paid employment and/or the work of maintaining income, and coordination work. The findings of this study disrupt popular conceptualizations of work and illuminate the nuanced and often invisible work that cancer patients may encounter, and the health consequences and inequities therein.
IntroductionWhereas it is widely recognized that emerging adulthood can be a difficult time in the life of an individual living with type 1 diabetes, relatively little is known about the experiences of their parents or guardians. These individuals once shouldered much of the burden for their child’s diabetes ‘self’-management, yet their contribution is often overlooked by the adult healthcare system. Here, we set out to gain an understanding of the perspectives of parents of emerging adults living with type 1 diabetes.Research design and methodsSemi-structured interviews were performed with a purposeful sample of parents of emerging adults with type 1 diabetes recruited from two urban young adult diabetes clinics and through a national diabetes charity. Thematic coding was derived using a constant comparative approach.ResultsAnalysis of interviews with 16 parents of emerging adults with type 1 diabetes identified three themes: parental experiences of the transition to adult care; negotiating parent–child roles, responsibilities and relationships; and new and evolving fears. Parents spoke in detail about the time surrounding their child’s diagnosis of type 1 diabetes to emphasize the complexity of diabetes care and the need to establish a ‘new normal’ for the family. In turn, adolescence and emerging adulthood required a renegotiation of roles and responsibilities, with many parents continuing to play a role in high-level diabetes management. Several parents of emerging adults with type 1 diabetes (particularly those of young men) vocalized worries about their child’s readiness to assume responsibility for their self-care, and some expressed frustration with the apparent dichotomy in the role expectations of parents between the pediatric and adult care settings.ConclusionsAdult healthcare providers should recognize both the ongoing involvement of parents in the ‘self’-management of emerging adults with type 1 diabetes and the unique aspects of the caregiver burden that they experience.
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