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Introduction: There is a growing recognition that the perception of adolescents and young adults with cancer (AYAs) diagnosed with cancer is distinctive from that of children or adults. The main objective of this project is understanding how AYAs and their caregiving parents experience cancer, diagnosis, hospitalisation, treatment and survivorship to develop a patient centred tool which can be used by the multidisciplinary team. Methods: A qualitative study based on the principles of Grounded Theory. 24 semi structured interviews were held with AYAs between 15 and 25 years of age. Additionally 21 caregiving parents (19 mothers and 2 fathers) were interviewed. Sampling was based on situational diversity. The interviews were transcribed and coded (NVivo7) and constant comparison was used to analyse the data. Datacollection and –analyse took place in a cyclic process. Results: From the AYAs’ perspective, cancer is something temporarily passing their life-path. Their copingstrategies are focused on preserving identity and guarding normal life, not only during treatment, but also in follow-up and survivorship. Findings suggest that AYAs prefer care, tailored to their needs. The AYAbox has been developed to meet these specific needs and to enhance the communication with the AYA. The box belongs to the AYA only and contains a booklet with revealing stories of AYAs’ experiences, postcards, a unique AYA tag, stickers mentioning feelings or concerns, cards with information or instructions, a brief symptomscale and smart aids in communication with their relatives and professional caregivers. The whole multidisciplinary team work with this instrument and can use it to talk about more difficult or emotional topics. When confronted with the cancer of AYAs, the caregiving parents face various fears and insecurities. Findings demonstrate poor communication about emotions between the AYAs and the caregiving parents. The box provides a means to promote this communication. Conclusions: This study revealed that cancer has a different meaning for AYAs than for their caregiving parents. The results are translated in a practical and meaningful tool, based on the experiences of the AYAs, inspiring caregivers to provide patientcentred care in accordance to the specific preferences and wishes of the AYA

The experiences and needs of Adolescents and Young Adults (AYAs) with cancer

Introduction: The results presented in this abstract are part of a larger Belgian study about the perception of Adolescents and Young Adults (AYAs) with cancer during and after their diagnosis and treatment. This research focuses on the psychosocial experiences of AYAs confronted with cancer. The purpose of the study is understanding how AYAs experience cancer, diagnosis, hospitalisation, treatment and survivorship to open a debate on how their unique needs and experiences can be implemented. Methods : This qualitative study was based on the principles of grounded theory. 26 semi-structured interviews with AYAs between 15 and 25 years of age diagnosed with cancer were held to collect the data. Sampling was based on situational diversity (e.g. gender, age, social context, education, time since diagnosis). The interviews were transcribed and coded (NVivo 7) and constant comparison was used to analyse the data. Data-collection and –analyses took place in a cyclic process. Results : Analyses revealed that cancer is often seen as something temporarily passing the life-path of the AYA, something that has to be overcome. Two major themes came to the fore: identity and normal life. The coping-strategies used by AYAs are focused on preserving identity and guarding normal life, during treatment, in follow-up and in survivorship. Furthermore, AYAs go through a process in which several stages can be defined. Findings suggest that AYAs prefer care, tailored to their needs. Discussion : This study increases the understanding of the perception of AYAs with cancer. The data revealed that cancer seems to have different meaning for AYAs then for adults. This demonstrates the need for specific patient centred care for AYAs. The results can inspire caregivers to develop psychosocial pathways in accordance to the preferences and wishes of the AYA

'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