Information Needs Regarding Cognitive Late Effects of Caregivers of Central Nervous System Tumor Survivors

Abstract

Pediatric central nervous system (CNS) tumor survivors are at risk for experiencing cognitive late effects (CLEs). Caregivers of survivors may be unaware of these changes or receive untimely information regarding CLEs. Conversely, health care providers (HCPs) may face barriers to providing education. This study aims to (a) understand the knowledge and resource gap for caregivers regarding CLEs and (b) explore how HCPs currently provide education. Caregivers and HCPs were both interviewed. Qualitative analysis was performed using emergent coding. Fifteen caregivers and eight HCPs participated. Caregivers generally felt confident in assisting their survivor but experienced "information overload" during initial diagnosis and treatment. HCPs reported difficulties in determining appropriate timing for education and perceived that caregivers typically lack understanding of CLEs. Caregivers should be aware of and understand a survivor's risk for CLEs to help survivors manage changes. With increasing survival rates of pediatric CNS tumor patients, HCPs must be prepared to provide appropriate education and referrals regarding CLEs for long-term care.

Families’ experiences of child and adolescent brain tumor: A systematic review and synthesis of qualitative research

“…17,22,38,50,54,56 A few reported their functionality to improve with time, 50 challenging themselves with new sports and activities, 36,38 and physical therapy. 46 Not all survivors reported changes in their body to be an issue for them. 29 We observed some gendered differences in survivors' and parents' discussions of body image for the diagnosed child.…”

“…Emotion/attitude Practical Healthcare Other Treatment • Maintaining a "positive" attitude, for example, accepting the situation and making space for it in their lives 24,35,41 • Focusing on the present and taking each day as it comes 24,43 • Acknowledging and processing "negative" emotions as they are felt rather than not confronting them 24 • Reframing the tumor as something manageable and removing the weight of "cancer" 43 • Maintaining and encouraging sense of humor 20,47 • Self-care activities for parents 24 • Celebrating every positive outcome or event 24 • Establishing a family routine when treatment allowed it 48 • Keeping busy during the mundane phases of treatment 23 • Using any social or practical support offered from friends, family, or community members 24 • Seeking second opinions 43 • Seeking all available medical and alternative health treatment options 43 • Giving rewards or treats to children 43 • Using play and imagination as a distraction 28,43 • Religion and prayer 24,43 Survivorship • Maintaining a "positive" attitude and acceptance of having had a brain tumor 56 • Taking it one day at a time 37 • Attending support groups 46 • Seeing a therapist, psychologist, or counselor • Accepting help when the child faced developmental regressions 20 • Taking an active role in interventions and treatment decision making 20…”

“…However, religion was more so spoken about in terms of being a coping strategy through prayer and the community support a Church could offer. 24,37,46 At end of life, religion was spoken of as easing fear of death for some children and contributing to a positive meaning for the child's life for the parents. 20,35 7 | DISCUSSION…”

“…54 Various coping strategies were described by family membersthough mostly by mothers-as to how their family managed to get through treatment and how they coped with the diagnosed child's needs into survivorship (Table 4). It was rare for families to describe using professional support, 46 with the primary caregiver (usually the mother) often developing, implementing, and managing strategies for the whole family.…”

“…Survivors (children, but more commonly, adolescents and young adults) reported feeling frustrated or sad about their body’s changed appearance and functionality 17,22,38,50,54,56 . A few reported their functionality to improve with time, 50 challenging themselves with new sports and activities, 36,38 and physical therapy 46 . Not all survivors reported changes in their body to be an issue for them 29 …”