TY - JOUR

T1 - Everyday life challenges among adolescent and young adult survivors of childhood acute lymphoblastic leukemia

T2 - An in‐depth qualitative study

AU - Andrés-Jensen, Liv

AU - Larsen, Hanne Bækgaard

AU - Johansen, Christoffer

AU - Frandsen, Thomas Leth

AU - Schmiegelow, Kjeld

AU - Wahlberg, Ayo

PY - 2020/10/11

Y1 - 2020/10/11

N2 - ObjectiveAs survival rates increase, growing numbers of childhood acute lymphoblastic leukemia (ALL) survivors are at risk for somatic and psychosocial late effects. Adolescent and young adult (AYA) survivors represent a distinct and vulnerable group. This study aimed to explore how AYA survivors of childhood ALL experience everyday life after cancer while adjusting to the potential impact of prior disease and treatment.MethodsSemi‐structured interviews were performed with survivors aged 15‐22 years. Criterion‐based homogenous purposive sampling was used to identify similarities within the group. Data were analyzed using an inductive, thematic approach.ResultsData saturation occurred after 18 interviews. Identified themes included the post‐chemo body, negotiating identities, and disruption. More than 80% reported physical or cognitive late effects, but survivors adapted to these and had a positive view on own health. However, a co‐existing experience of frailty persisted. Social disruption during treatment had a negative impact on social relations even years following cure. Identity issues revolved around the paradox of seeking recognition for their cancer‐related experiences, while also wanting to be treated like everyone else. Some participants aged 18‐22 experienced delayed reactions and a new, but unmet, need to process the past.ConclusionsAYA survivors of childhood ALL adapt well to their new life situations, but many experience ongoing cancer‐related disruptions and experience not being fully understood. We suggest exploration and verbalization of these issues alongside somatic follow‐up around the age of 16‐18 years to support the AYA survivors during their transition into adulthood.

AB - ObjectiveAs survival rates increase, growing numbers of childhood acute lymphoblastic leukemia (ALL) survivors are at risk for somatic and psychosocial late effects. Adolescent and young adult (AYA) survivors represent a distinct and vulnerable group. This study aimed to explore how AYA survivors of childhood ALL experience everyday life after cancer while adjusting to the potential impact of prior disease and treatment.MethodsSemi‐structured interviews were performed with survivors aged 15‐22 years. Criterion‐based homogenous purposive sampling was used to identify similarities within the group. Data were analyzed using an inductive, thematic approach.ResultsData saturation occurred after 18 interviews. Identified themes included the post‐chemo body, negotiating identities, and disruption. More than 80% reported physical or cognitive late effects, but survivors adapted to these and had a positive view on own health. However, a co‐existing experience of frailty persisted. Social disruption during treatment had a negative impact on social relations even years following cure. Identity issues revolved around the paradox of seeking recognition for their cancer‐related experiences, while also wanting to be treated like everyone else. Some participants aged 18‐22 experienced delayed reactions and a new, but unmet, need to process the past.ConclusionsAYA survivors of childhood ALL adapt well to their new life situations, but many experience ongoing cancer‐related disruptions and experience not being fully understood. We suggest exploration and verbalization of these issues alongside somatic follow‐up around the age of 16‐18 years to support the AYA survivors during their transition into adulthood.

KW - Faculty of Social Sciences

KW - adolescent

KW - cancer survivors

KW - leukemia

KW - long-term adverse effects

KW - pediatrics

KW - psycho-oncology

KW - qualitative research

KW - quality of life

KW - survivorship

KW - young adult

U2 - 10.1002/pon.5480

DO - 10.1002/pon.5480

M3 - Journal article

C2 - 32672854

VL - 29

SP - 1630

EP - 1637

JO - Psycho-Oncology

JF - Psycho-Oncology

SN - 1057-9249

IS - 10

ER -