Schooling in survivorship: Understanding caregiver challenges when survivors return to school

Abstract

Objective Schooling after treatment can hold challenges for survivors of childhood cancer and caregivers who may need to act as advocates on their behalf. This study seeks to understand caregiver experiences of survivor's school‐related challenges. This understudied area is critical given the 85% survivor rate for those diagnosed with childhood cancer and the disproportionate risk of learning difficulties faced by those with brain tumor or who receive therapy that targets the central nervous system. Methods Affected caregivers participated in open‐ended interviews addressing school experiences during survivorship. Following preliminary analysis using a grounded theory approach, interviewees and other stakeholders from education, medical, and foundation communities participated in focus groups. Member‐check activities explored the validity of identified themes and a model derived from interview data describing schooling challenges during survivorship. Results Caregivers reported schooling‐related experiences were often stressful and such stressors recurred during survivors' ongoing education. They reported a lack of appropriate knowledge among themselves, school staff, and clinicians about issues their survivor faced as well as concerns about communication and uncertainties about the processes required to attain appropriate services. These themes of knowledge, communication, and process issues were embedded within family approaches to coping with difficulties as well as the specific types of late effects each survivor faced. Conclusions The proposed model and clinical implications provide a foundation for future research and intervention development. Such work is needed to more effectively support survivors and their caregivers with difficulties that arise during schooling following treatment for childhood cancer.

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

“…The experiences of the parents reinforce that children face specific challenges during reintegration after the end of treatment, which may not be captured by solely quantitatively analyzing quality of life levels [35]. Getting back to their new old "normal" life can lead to exhaustion and requires many resources from the children [17]. The time of reintegration poses new demands and difficulties after undergoing cancer treatment.…”

“…After completion of treatment the shift from focusing on surviving the cancer disease to living with the consequences of the diagnoses and treatment has been described as a crucial phase for reintegration and adjustment [16]. Patients and caregivers describe the reentry into school as challenging [17]. Moreover, children may go through difficulties with regard to reintegration into social life [18].…”

A systematic review of the educational experiences and needs of children with cancer returning to school

“…Returning and being connected to the school environment provided some children with a sense of normality and the start of a new challenge through survivorship (Choquette et al, 2016;Paré-Blagoev et al, 2019;Pini et al, 2013Pini et al, , 2019. However, other children experienced some social anxiety, disease burden and lowered personal confidence (McLoone et al, 2011).…”

“…Communication and re-entry into schools improved when a school liaison (Pini et al, 2013(Pini et al, , 2016 or a named hospital contact (Tresman et al, 2016) were assigned. It also helped when schools were amenable to parents' suggestions (Paré-Blagoev et al, 2019), parental involvement (Pini et al,2013;Vanclooster et al, 2020) or parental realistic expectations (Vanclooster et al, 2019a). Maintaining and initiating communication between the health and educational communities seemed to be the sole responsibility of parents, who were the ones assuming the task of monitoring educational progress (Paré-Blagoev et al, 2019;Vanclooster et al, 2020).…”

“…Although cancer affects an increasing proportion of school-age children and significantly disrupts their schooling, little is known about their educational needs and re-entry experiences, especially from the children's own perspectives, their parents and teachers (Boles & Winsor, 2019;Paré-Blagoev et al, 2019). Therefore, it is important to understand children's experiences of school re-entry and the obstacles associated with the educational transition process to provide optimal care and support (Kuntz et al, 2019).…”