Experiences of patients with cancer and their relatives confronted with COVID-19 related delay or change in care: A qualitative study.

AIMS: To provide in-depth insight into how patients and their relatives experienced change or delay in cancer treatment and care due to COVID-19. DESIGN: A qualitative study including semi-structured interviews with patients with cancer and their relatives. METHODS: Between July and October 2020, 42 patients who were confronted with a change or delay in cancer treatment or care, and 11 relatives were interviewed. Data collection and analysis were performed according to the most important methods of grounded theory, including iterative data collection and analysis, theoretical sampling, constant comparative analysis and theoretical sensitivity. RESULTS: This study shows that patients with cancer and relatives experienced paradoxical feelings when confronted with change or delay in treatment or care due to COVID-19. Patients and relatives felt relieved (e.g. less risk of infection), but were also concerned and anxious (e.g. fear for progression, fear for more side effects). Due to these ambivalent feelings, it was difficult for patients and relatives to cope with the change or delay in treatment or care, both when this was decided by the physician and by themselves. In combination with the general impact of COVID-19 on their daily lives, the change or delay led to additional distress. The interviews showed that exploring the meaning of change or delay of care for patients and their relatives and discussing what would help them might prevent or relieve distress. CONCLUSION: The findings of our study show that COVID-19 and the associated delay or changes in cancer treatment and care had a major impact on the well-being of patients and their relatives. Person-oriented care is even more important during (emergency) situations in which care might be changed or delayed.

The 3-Phase Process in the Cancer Experience of Adolescents and Young Adults.

BACKGROUND: When confronted with cancer, adolescents and young adults (AYAs) enter a psychosocial trajectory. Previous research has acknowledged the importance of care adjusted to the specific needs of AYAs. To develop AYA-focused care, in-depth knowledge about the experiences of AYAs with cancer is necessary. OBJECTIVE: The purposes of this study were to discover the psychosocial experiences of and their meanings for AYAs enduring cancer, as well as its treatment and follow-up, and to capture the basic social psychological process that shaped these experiences. METHODS: This was a qualitative study in which individual semistructured interviews were conducted with 23 participants aged 15 to 25 years. RESULTS: A 3-phase process was identified, which demonstrated alterations in the AYAs' experiences and their underlying meanings: (1) maintaining normal life was essential, (2) normal life was slipping away, and (3) evolving toward a new normal life after treatment. Certain core dynamics were present in these 3 phases. Throughout the cancer trajectory, the AYAs attempted to maintain control, redefine the self, and incorporate their cancer experience to the long-term course of life and had varying expectations of their social networks. CONCLUSIONS: Understanding the process that AYAs with cancer go through and taking into account their experiences can facilitate better psychosocial care for this emotionally vulnerable population. IMPLICATIONS FOR PRACTICE: Healthcare professionals need to take a patient-centered approach, with a focus on communication, to meet the needs of AYAs throughout the cancer trajectory.

"The AYA Director": A Synthesizing Concept to Understand Psychosocial Experiences of Adolescents and Young Adults With Cancer.

BACKGROUND: Adolescents and young adults with cancer face distinct psychosocial challenges because of the multiple developmental tasks associated with their age. Research on psychosocial care, directed to the unique needs and demands of this population, is limited. OBJECTIVE: The aim of this study was to describe the psychosocial experiences of adolescents and young adults with cancer to further the understanding of the meanings they attribute to their experiences. INTERVENTION/METHODS: This study used a qualitative design in which individual semistructured interviews were conducted with 23 participants aged 15 to 25 years. RESULTS: Physical consequences of the disease and its treatment, loss of independence, and being alone were significant challenges. Major coping strategies of the participants were to avoid the possible threats to life and maintain a positive attitude and normal life. Participants were "directors" who took control in order to manage their illness, maintain a sense of control, and master their lives to the fullest extent possible. CONCLUSIONS: The concept of the "AYA (adolescent and young adult) director" provides insight for healthcare professionals to understand how adolescents and young adults experience cancer. IMPLICATIONS FOR PRACTICE: Throughout the cancer experience, participants wanted to be treated as individuals with specific needs and preferences. They preferred circumstances they are accustomed to; some found it difficult to accept restrictions imposed by the hospital. Adolescents and young adults with cancer want to be involved in the way healthcare professionals communicate with them and the information they are provided.

Factors Influencing Adherence in Cancer Patients Taking Oral Tyrosine Kinase Inhibitors: A Qualitative Study.

BACKGROUND: Nonadherence in cancer patients taking oral anticancer drugs is common. Reasons for nonadherence are still not really understood as influencing factors are often complex, dynamic, and interrelated. OBJECTIVE: A qualitative study was conducted to gain insight into (non-)adherence behavior in patients taking oral tyrosine kinase inhibitors by exploring (1) processes and factors influencing (non-)adherence and (2) their interrelatedness. METHODS: Semistructured interviews were held with 30 patients of different ages and with different types of cancer. A grounded theory approach was used. RESULTS: Three foci were found when dealing with oral tyrosine kinase inhibitors: (1) a focus on survival, (2) a focus on quality of life, and (3) a balance between survival and quality of life. The process of adherence was determined by a set of complex and interrelated influencing factors: treatment-related side effects, hope, anxiety, trust, and feedback mechanisms. CONCLUSIONS: This qualitative study gives insight into processes and factors influencing (non-)adherence behavior in patients taking oral tyrosine kinase inhibitors. The results of this study can help healthcare professionals understand why patients taking oral tyrosine kinase inhibitors do not always adhere to their therapy. IMPLICATIONS FOR PRACTICE: Conditions should be created by which patients get maximum opportunity to establish a balance between survival and quality of life. An open climate and a trust-based relationship should be established in which patients feel comfortable to openly discuss their therapy and the difficulties they experience.