Challenges for families of longterm survivors of childhood cancer during transition from adolescence to young adulthood : the CHANCE project phase 1

Domeisen Benedetti, Franzisca; Mezger, Mirjam; Pelican, Patric; Fringer, André

Publication type:	Conference other
Type of review:	No review
Title:	Challenges for families of longterm survivors of childhood cancer during transition from adolescence to young adulthood : the CHANCE project phase 1
Authors:	Domeisen Benedetti, Franzisca Mezger, Mirjam Pelican, Patric Fringer, André
et. al:	No
Conference details:	16th International Family Nursing Conference (IFNC), Dublin, Ireland, 21-23 June 2023
Issue Date:	Jun-2023
Language:	English
Subject (DDC):	155: Differential and developmental psychology 362: Health and social services
Abstract:	Background and Purpose: Longterm survival of children with childhood cancer has greatly improved with current treatment management. Consequently, adolescents and young adults (AYA) that are longterm survivors of childhood cancer (LSCC) may suffer from long-term effect which also affect their families – especially during the transition to adulthood and beyong. The objective of phase 1 is to identify problems, challenges, and supportive elements of AYA-LSCC family systems. To understand the nature of specific long-term impact on the family system, the family functioning model of Kazak et al. (2006) is used as theoretical framework. In the second study-phase results may inform a Care-Model to support and educate the families of AYA-LSCC adequately. Methods: Phase 1 is part of an exploratory sequential mixed methods design. This design leads to in-depth as well as transferable data. In phase 1 the lifeworld experience of the families/parents of AYA-LSCC has been analyzed with a Grounded Theory procedure. To reach theoretical saturation 18-25 narrative interviews have been targeted. Based on the results, in phase 2 developed practice elements shall be tested. Results: Analyses of 21 interviews confirm that childhood cancer has, years after acute stage/ treatment and follow-up, still great impact especially on parents. Parents suffer from ongoing fear for the child's health and are having difficulties in letting go during adolescence. They describe, how AYALSCC themselves struggle with physical consequences which effect their self-esteem, need for support and their ducation/occupation. Also, positive emotions and behavior has emerged from these traumatic experiences, such as gratitude, and a reflective way of parenting. Among the AYA-LSCC, parents observe a psychological maturity. Conclusions and Implications: Cancer is healed, but findings suggest that families of AYA-LSCC still need to be considered years after treatment and follow-up. Professionals in AYA follow-up programs should include issues from the family of origin.
URI:	https://digitalcollection.zhaw.ch/handle/11475/28299
Fulltext version:	Published version
License (according to publishing contract):	Licence according to publishing contract
Departement:	School of Health Sciences
Organisational Unit:	Institute of Nursing (IPF)
Published as part of the ZHAW project:	Challenges for families of longterm survivors of childhood cancer during transition from adolescence to young adulthood - Phase 1
Appears in collections:	Publikationen Gesundheit

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Domeisen Benedetti, F., Mezger, M., Pelican, P., & Fringer, A. (2023, June). Challenges for families of longterm survivors of childhood cancer during transition from adolescence to young adulthood : the CHANCE project phase 1. 16th International Family Nursing Conference (IFNC), Dublin, Ireland, 21-23 June 2023.

Domeisen Benedetti, F. et al. (2023) ‘Challenges for families of longterm survivors of childhood cancer during transition from adolescence to young adulthood : the CHANCE project phase 1’, in 16th International Family Nursing Conference (IFNC), Dublin, Ireland, 21-23 June 2023.

F. Domeisen Benedetti, M. Mezger, P. Pelican, and A. Fringer, “Challenges for families of longterm survivors of childhood cancer during transition from adolescence to young adulthood : the CHANCE project phase 1,” in 16th International Family Nursing Conference (IFNC), Dublin, Ireland, 21-23 June 2023, Jun. 2023.

DOMEISEN BENEDETTI, Franzisca, Mirjam MEZGER, Patric PELICAN und André FRINGER, 2023. Challenges for families of longterm survivors of childhood cancer during transition from adolescence to young adulthood : the CHANCE project phase 1. In: 16th International Family Nursing Conference (IFNC), Dublin, Ireland, 21-23 June 2023. Conference presentation. Juni 2023

Domeisen Benedetti, Franzisca, Mirjam Mezger, Patric Pelican, and André Fringer. 2023. “Challenges for Families of Longterm Survivors of Childhood Cancer during Transition from Adolescence to Young Adulthood : The CHANCE Project Phase 1.” Conference presentation. In 16th International Family Nursing Conference (IFNC), Dublin, Ireland, 21-23 June 2023.

Domeisen Benedetti, Franzisca, et al. “Challenges for Families of Longterm Survivors of Childhood Cancer during Transition from Adolescence to Young Adulthood : The CHANCE Project Phase 1.” 16th International Family Nursing Conference (IFNC), Dublin, Ireland, 21-23 June 2023, 2023.