Parents’ perception of their children’s process of reintegration after childhood cancer treatment

Abstract

Our objective was to further the understanding of the process of reintegration of childhood cancer patients after treatment and to identify factors influencing that process. Using a qualitative approach, we conducted 49 interviews with parents (n = 29 mothers, n = 20 fathers) from 31 families with a child (<18 years) with leukemia or CNS tumor. Interviews were conducted about 16 to 24 months after the end of the treatment. We used a semi-structured interview guideline and analyzed the data using content analysis. Average age of pediatric cancer patients was 5.5 years at the time of diagnosis; mean time since diagnosis was 3.5 years. Parents reported immediate impact of the disease on their children. Reintegration had gone along with delayed nursery/school enrollment or social challenges. In most cases reintegration was organized with a gradual increase of attendance. Due to exhaustion by obligatory activities, reintegration in leisure time activities was demanding and parents reported a gradual increase of activity level for their children. Parents described several barriers and facilitators influencing the reintegration process into nursery/school and leisure time activities (structural support, social support, health status, intrapersonal aspects). Although many children reintegrate well, the process takes lots of effort from parents and children. Childhood cancer survivors and their families should be supported after the end of intensive treatment to facilitate reintegration.

A qualitative study of young childhood cancer survivors and their parents’ experiences with treatment‐related late effects in everyday life post‐treatment

“…This finding builds on previous research showing that the parents of childhood cancer survivors often find it difficult to let go of the child's cancer experience because of their role as caregivers during treatment (Manne, 2005; Mckenzie & Curle, 2012; Schepers et al, 2019; Van Dongen‐Melman et al, 1995). Inhestern et al (2020) reported similar experiences of transitioning from treatment to everyday life as being difficult for childhood cancer survivors and their parents. Paired interviewing allowed relationship changes between the child and parent(s) during cancer treatment to surface.…”

Processing Speed and Time since Diagnosis Predict Adaptive Functioning Measured with WeeFIM in Pediatric Brain Tumor Survivors

“…Based on the severity, the phase of the disease, and its consequences, rehabilitation interventions can be offered with different modalities and in accordance with the patient’s needs. Usually, an inpatient pediatric rehabilitation setting includes a multi-professional approach, with physical, occupational, and speech therapists; neuropsychologists; and psychotherapists, for at least three hours per day [ 76 ] for several weeks [ 77 ]. The hypothesis that longer time since diagnosis corresponds to a higher number of rehabilitation interventions that BT survivors have undergone is purely speculative, and further investigations are needed to explore this potential relationship.…”

Impact of “chemobrain” in childhood cancer survivors on social, academic, and daily living skills: a qualitative systematic review protocol

“…Acute lymphoblastic leukemia (ALL) is the most common form of pediatric cancer, representing 25.1% of all new childhood cancer cases, with 37.3% of these occurring in children between the ages of one and four years. 10 Advances in cancer treatment and supportive care have resulted in a vast improvement in survival rates over the past 50 years in children with a cancer diagnosis, with a current event-free five-year relative survival rate of 85% to 90%.…”

“…25 Of those who reintegrated into school, there were associated challenges with the curriculum due to previous absence as well as social, emotional, and cognitive challenges (specifically difficulties in concentration). 25,26 Some children had fewer friends than previously and struggled to integrate into their peer groups. 25 Understanding the personal experiences of children with chemobrain is important to inform survivorship frameworks and care following treatment.…”

“…25,26 Some children had fewer friends than previously and struggled to integrate into their peer groups. 25 Understanding the personal experiences of children with chemobrain is important to inform survivorship frameworks and care following treatment. However, at present, this group is under-represented in the literature.…”