The daily life and care experiences of adolescents and young adults with an uncertain or poor cancer prognosis

Vivian Burgers

Research output: Types of ThesisDoctoral ThesisInternal

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Abstract

Due to the rapid developments in treatment options and accompanied increasing overall survival rates, an increasing number of adolescents and young adults (AYAs, aged 18-39 years at primary diagnosis) with an uncertain or poor cancer prognosis (UPCP) live for a longer period of time. In this thesis we identified AYAs with a UPCP as those with advanced cancer for which there is no reasonable hope of cure, indicating that they will die prematurely from cancer, but have no immediate threat of death. Given the unique age, developmental and disease characteristics of AYAs with a UPCP cancer prognosis, one can imagine that they experience different challenges than older adults with a UPCP and AYAs with a good prognosis. Given the gap in literature it is unknown how to best support these young people, let alone how to provide person-centred care for this unique group of patients. This thesis explored the daily life challenges, coping mechanisms and healthcare needs of AYAs with a UPCP, and examined the challenges in clinical practice as experienced by healthcare professionals (HCPs) treating AYAs with a UPCP.

A multicentre qualitative interview study was conducted to explore the daily life challenges, coping and healthcare experiences of AYAs with a UPCP in-depth. We recruited AYAs with a UPCP in eight hospitals in the Netherlands. These included six University Medical Centres, the Netherlands Cancer Institute, and one large teaching hospital (Haaglanden Medical Centre). We interviewed 46 AYAs with a UPCP and five AYAs with a UPCP participated in additional focus groups. Furthermore, we interviewed 49 HCPs treating AYAs with a UPCP to explore challenges in daily clinical practice when providing care to this patient group including clinical nurse specialists, medical oncologists, neurologists, psychologist, social workers or other specialised HCPs working in one of the Dutch hospitals. AYAs with a UPCP were actively involved as research partners during all the phases of our studies.

In the first chapters this thesis we developed a definition for this group, in collaboration with the patients involved, that would best fit with their specific epidemiologic, clinical, and psychosocial characteristics and challenges. We investigated the daily life challenges of AYAs with a UPCP and identified five primary themes: (1) feeling inferior to previous self and others (e.g. feeling useless), (2) feeling of being alone (e.g. lonely thoughts), (3) ongoing confrontation (e.g. own decline), (4) grief about life (e.g. grief about life I did not get, grief about old life), and (5) loss of control over the future (e.g. not able to make future plans). Additionally, we identified seven coping strategies in order to reduce the suffering from the experienced challenges: (1) minimizing impact of cancer, (2) taking and seeking control, (3) coming to terms, (4) being positive, (5) seeking and receiving support, (6) carpe diem and (7) being consciously alive. This study found seven coping strategies around the concept of ‘double awareness’ and showcases that AYAs are able to actively cope with their disease but prefer to actively choose life over illness. To meet the unique medical, psychosocial and supportive care needs of AYAs with a UPCP and to provide oncology HCPs with examples and resources to provide the best possible care. AYAs with a UPCP reported four pillars for a satisfying healthcare experience: (1) trust, (2) tailored communication, (3) holistic empathic open attitude and (4) care being offered (pro-)actively. The challenges in daily clinical practice experienced by HCPs from different disciplines who provide palliative as well as general care to AYAs with a UPCP found in the data were: (1) emotional confrontation (e.g. experiencing a greater sense of empathy), (2) questioning own professional attitude and skills, (3) navigating uncertainty (e.g. discussing prognosis and end of life) and (4) obstacles in the health care organisation (e.g. lack of knowledge and clarity about responsibilities). At last, the process of involving AYAs with a UPCP as partners in research and their experiences is documented including the impact and lessons learned. This highlights that patient involvement in research not only pays off in the signifi cance of the project but also positively effects patients.


Original languageEnglish
Awarding Institution
  • Erasmus University Rotterdam
Supervisors/Advisors
  • van der Graaf, Winette, Supervisor
  • Husson, Olga, Co-supervisor
Award date28 Mar 2024
Place of PublicationRotterdam
Publication statusPublished - 28 Mar 2024

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