Promoting Resilience among Parents and Caregivers of Children with Cancer

Abstract

Background: Promoting resilience is an aspect of psychosocial care that affects patient and whole-family wellbeing. There is little consensus about how to define or promote resilience during and after pediatric cancer. Objectives: The aims of this study were (1) to review the resilience literature in pediatric cancer settings; (2) to qualitatively ascertain caregiver-reported perceptions of resilience; and (3) to develop an integrative model of fixed and mutable factors of resilience among family members of children with cancer, with the goal of enabling better study and promotion of resilience among pediatric cancer families. Methods: The study entailed qualitative analysis of small group interviews with eighteen bereaved parents and family members of children with cancer treated at Seattle Children's Hospital. Small-group interviews were conducted with members of each bereaved family. Participant statements were coded for thematic analysis. An integrative, comprehensive framework was then developed. Results: Caregivers' personal appraisals of the cancer experience and their child's legacy shape their definitions of resilience. Described factors of resilience include baseline characteristics (i.e., inherent traits, prior expectations of cancer), processes that evolve over time (i.e., coping strategies, social support, provider interactions), and psychosocial outcomes (i.e., post-traumatic growth and lack of psychological distress). These elements were used to develop a testable model of resilience among family members of children with cancer. Conclusions: Resilience is a complex construct that may be modifiable. Once validated, the proposed framework will not only serve as a model for clinicians, but may also facilitate the development of interventions aimed at promoting resilience in family members of children with cancer.

Mothers’ psychological adaptation to Duchenne/Becker muscular dystrophy

“…Resilience is a multidimensional personal attribute that may be shaped by personality traits, evolving appraisals, social support systems, and family environments. 20,[27][28][29] Simply defined, it is a relative resistance to adversity 30 that has been demonstrated to influence positive outcomes after a stressful event. 29,[31][32] As measured by the Resilience Scale for Adults, it comprises protective personal and social resources.…”

Cognitive dysfunction in patients with brain metastases: influences on caregiver resilience and coping

“…Resilience, a personality trait that allows individuals to withstand stress and adapt to adversity, has been defined both as a preexisting trait and a dynamic, modifiable process [17,18]. Resilience may affect variability in caregiver burden by decreasing the likelihood of distress from caring for an impaired individual or increasing the benefits derived from social support.…”

Cuidador familiar del niño con cáncer: un rol en transición

“…Para gran parte de los cuidadores familiares el cáncer infantil significa adversidad, los encara a un conflicto consigo mismos, con otros significativos, con la vida y con el ser o fuerza superior. La asociación del cáncer con la muerte hace que el cuidador se enfrente a una crisis de significado, lo que en la mayoría de casos inhibe una transición adecuada de su rol (Arruda-Colli et al, 2015;Bally et al,2014;Flury et al, 2015;Njuguna et al, 2015;Rosenberg et al, 2013;Shortman et al, 2013;Wong y Chan, 2006). Ningún padre o allegado se prepara para tener a futuro un niño con cáncer.…”

“…Es claro que la transición del rol del cuidador del niño con cáncer es difícil y en muchos casos dolorosa, lo que también se refleja en los patrones de respuesta que se esperan, pues en últimas el resultado deseable es que la experiencia sea lo menos traumática posible y que los cuidadores puedan encontrar en ella algún sentido que les ayude a luchar y a continuar viviendo para disfrutar los momentos que la vida les ofrece junto al niño y los otros significativos (Arruda-Colli et al, 2015;Bally et al, 2014;Flury et al, 2015;Njuguna et al, 2015;Rosenberg et al, 2013;Shortman et al, 2013;Wong y Chan, 2006).…”