`A life on hold': adolescents' experiences of stem cell transplantation in a long-term perspective

Abstract

Stem cell transplantation is one of the treatment methods for cancer in children and adolescents which has resulted in a positive outcome. Unfortunately this method of treatment brings with it a number of late effects such as short stature, cognitive effects and infertility. However, a majority of children and adolescents experience a good quality of life. By examining their medical records this study has gained a deeper understanding of the situation for the minority of young people who describe themselves as suffering severe mental distress which they relate to their illness and treatment. The population comprised seven adolescents who sought psychotherapeutic support several years after treatment. They describe how they are affected by the feeling of being different, the loss of contact with friends and their dependence on parents. The study points to the need for long-term psychosocial support for children and adolescents who have undergone stem cell transplantation.

Parental Perspectives on a Behavioral Health Music Intervention for Adolescent/Young Adult Resilience During Cancer Treatment: Report From the Children's Oncology Group

“…Parents indicated that the process of writing lyrics and selecting photos/images gave AYA a platform to engage in meaningful conversations with parents, extended family, and friends. Previous research has described the difficulties that very ill children and adolescents experience when trying to communicate painful experiences with their parents [3]. During cancer treatment, AYA distress-coupled with efforts to avoid distressing parents – often stifle AYA-parent communication about cancer-related concerns [3,15,21,22].…”

“…Previous research has described the difficulties that very ill children and adolescents experience when trying to communicate painful experiences with their parents [3]. During cancer treatment, AYA distress-coupled with efforts to avoid distressing parents – often stifle AYA-parent communication about cancer-related concerns [3,15,21,22]. In addition, many parents may avoid important cancer-related conversations with their child in an effort to diminish their own and their AYA’s suffering.…”

“…Restrictions to these developing competencies can lead to anxiety, depression, and defensive coping [28]. Previous studies have documented that AYA with cancer often view themselves as being more dependent on their parents than their same-age peers [3,28]. …”

“…For adolescents and young adults (AYA) between 11 and 24 years of age, a cancer diagnosis and treatment can heighten stress, place additional demands on coping skills, and increase the risk for adaptation problems [1,2]. Cancer treatment with stem cell transplantation is a particularly stressful experience for AYA and may result in significant short- and long-term decrements in quality of life [3-5]. Yet few behavioral health interventions have been targeted to this unique and vulnerable population.…”

3233 Safe in the bubble, out into the unknown: Returning home following allogeneic stem cell transplantation: A phenomenological study

“…In a retrospective study of seven adolescents Forinder and Posse (2008) identities which need to be untangled. Seeking an identity is considered a basic human need by Erikson (1968) where identity is defined as a subjective experience consisting of three components: biological identity, psychological identity and social identity.…”