Meaning Making and Religious Engagement Among Survivors of Childhood Brain Tumors and Their Caregivers

Abstract

Purpose: To describe how adolescent and young adult survivors and their mother-caregivers ascribe meaning to their post–brain tumor survivorship experience, with a focus on sense making and benefit findings and intersections with religious engagement. Participants & Setting: Adolescent and young adult survivors of childhood brain tumors and their families, living in their community settings. Methodologic Approach: Secondary analysis of simultaneous and separate individual, semistructured interviews of the 40 matched dyads (80 total interviews) occurred using conventional content analysis across and within dyads. Meaning is interpreted through narrative profiles of expectations for function and independence. Findings: Participants made sense of the brain tumor diagnosis by finding benefits and nonbenefits unique to their experiences. Meaning was framed in either nonreligious or religious terms. Implications for Nursing: Acknowledging positive meaning alongside negative or neutral meaning could enhance interactions with survivors, caregivers, and their families. Exploring the meaning of their experiences may help them to reconstruct meaning and reframe post-tumor realities through being heard and validated.

Identification of Evidence for Key Positive Psychological Constructs in Pediatric and Adolescent/Young Adult Patients with Cancer: A Scoping Review

“…Some specific areas of growth mentioned were improved self-reflection, 52 clearer life purpose, 53 a positive new identity, 54 , 55 overall maturation, 56 and increased empathy. 57 Faith in God and spiritual struggles played a significant role in patient personal growth, 58 , 59 mostly by allowing patients to adapt to or comprehend their disease. Social support systems helped promote growth in patients with cancer.…”

Religious–spiritual experiences of family members and caregivers of children and adolescents with cancer

“…The religious and spiritual aspects of family members and caregivers were also strengthened during children and adolescents’ illness. The results showed the adoption of religious and spiritual practices as a way to get closer to God, with an openness to the use of objects and participation in rites/practices directed to R/S, such as going to certain places considered sacred (e.g., Wang et al, 2017; Ahmadi et al, 2019; Rabelais et al, 2019; Chen et al, 2020). Going to sacred places or adopting certain habits and objects linked to personal religiosity/spirituality are ways of establishing a connection and contact with a superior force that transcends concrete/material existence, and these actions are positive for people (Rossato et al, 2021).…”

Relationship Between Quality of Life of Children With Cancer and Caregiving Competence of Main Family Caregivers

“…Therefore, from this perspective, any suggested nursing care for meeting dyad's needs should be aimed at assessing difficulties in the caregivers' role and should pay attention to processes such as job and family adjustment, and social, spiritual, financial and emotional adaptation; in addition, nurses should improve caregiver education in diagnosis, treatment, prognostics, secondary effects, prolonged hospitalizations and procedures, which may occur during the illness experience. Furthermore, nurses should encourage the caregivers to maintain family relationships, involve other family members in the child's care since, as Rabelais et al (2019) comment, the family is crucial for the caregiver's experience and to keep their roles in progress. It is also important to refer the caregivers to social support groups that will help them improve their caregiving competence, especially those who are beginners to caregiving.…”