A qualitative study on the challenges health care professionals face when caring for adolescents and young adults with an uncertain and/or poor cancer prognosis

Advanced Cancer in Young Adults (YAs): Living in a Liminal Space

“…This tension was reportedly not felt to such an extent when treating older adults. The emotional tension that healthcare providers experience when trying to balance hopeful messages with risk when treating YAs has been noted in other research (Burgers et al, 2022a(Burgers et al, , 2022bFigueroa Gray et al, 2018;Wiener et al, 2015) and perhaps contributes to inconsistent messaging, as reported by our study participants. Further, this inconsistency in messaging from healthcare providers might have contributed to the difficulty YAs experienced in choosing a mode of living from one day to the next.…”

“…AYAs with advanced cancer, defined as a stage 4 or incurable diagnosis of any type of cancer and/or recurrent or metastasized cancer, have an ongoing need for life-sustaining cancer treatments and symptom management ( Abdelaal et al, 2021 ; Figueroa Gray et al, 2018 ). However, they still face the real prospect of dying at a young age ( Burgers et al, 2022a , 2022b ; Knox et al, 2017 ). These individuals are at a life stage typified by seeking autonomy from their parents, developing their own values and identity, focusing on building relationships, embarking on a career, and starting a family of their own ( Arnett et al, 2014 ).…”

“…These individuals are at a life stage typified by seeking autonomy from their parents, developing their own values and identity, focusing on building relationships, embarking on a career, and starting a family of their own ( Arnett et al, 2014 ). Advanced cancer during adolescence and young adulthood disrupts this development ( Barakat et al, 2016 ; Burgers et al, 2022a , 2022b ). AYAs with advanced cancer have reported feeling socially isolated from their peers and family, dependent on others, and unable to pursue life goals or achieve developmental milestones ( Clark & Fasciano, 2015 ; Zebrack & Isaacson, 2012 ).…”

Aneurysmal Subarachnoid Hemorrhage and Clinical Decision-Making: A Qualitative Pilot Study Exploring Perspectives of Those Directly Affected, Their Next of Kin, and Treating Clinicians

“…Dealing with death and deciding to forgo life-sustaining therapies are also cited as risk factors for burnout. Another study on coping with poor or uncertain diagnoses in oncology [ 53 ] shows that neurologists and specialist nurses in neuro-oncology appear to have self-doubt because of a lack of data, highlighting the need for further studies and data collection. A quantitative study of high burnout risk and posttraumatic stress disorder in ICU personnel [ 54 ] found a preference for talking with colleagues and with people outside of work to reduce this risk.…”

Improving supportive, palliative and end of life care for teenagers and young adults with cancer in adult haematology services

“…Burgers et al [49 ▪▪ ] asked HCPs ( n = 48) in the Netherlands to describe challenges specific to caring for T/AYAs (ages 15–39) with UPCP, and four main themes were identified that echoed and expanded on previous findings: similar age/life stage to the patient and their family, a sense of helplessness and inherent unfairness of a life cut short (emotional confrontation); finding the balance between promoting autonomy and paternalistic support, uncertainty of what constitutes optimal support for the individual, and managing the triadic nature of the patient/caregiver/HCP dynamic (questioning professional attitude and skill); prognostic uncertainty, judging timing of EOL conversations, and adjustments to psychosocial care aligning with fluctuations in stability of disease (navigating uncertainty); limited resources to plan and provide developmentally appropriate care, and poorly defined roles within the patient clinical team (organisational obstacles).…”