What Hope Means to Parents of Children with Cancer?

Abstract

Objetivo: describir el concepto de la esperanza que tienen los padres de niños entre 0 y 15 años de edad con diagnóstico de cáncer. Método: investigación cualitativa de tipo descriptivo exploratorio; la información se recolectó en cuatro ciudades de Colombia, a través de entrevistas semiestructuradas a once padres de niños con diagnóstico de cáncer. Resultados: se identificaron doce categorías que describen las experiencias de los padres y cómo estas los llevan vivir y a describir la esperanza como virtud y estado de ánimo. Conclusiones: la esperanza termina siendo el eje fundamental que mueve la vida de los padres; las experiencias alrededor del cáncer de sus hijos transforman el significado de la enfermedad y de su propias vidas, en las cuales se redescubren estrategias y mecanismos positivos de afrontamiento.

The experience of hope in families of children and adolescents living with chronic illness: A thematic synthesis of qualitative studies

“…The family feels anger, sadness, frustration, disappointment, fear, pain, shock, loneliness, and loss of confidence (Bally et al, ; Björk, Wiebe, & Hallström, ; Chinchilla‐Salcedo, ; Cornelio, Nayak, & George, ; De Graves & Aranda, ; Pourghaznein, Heydari, Manzari, & Valizadehzare, ; Sällfors, Fasth, & Hallberg, ; Winger, Ekstedt, Wyller, & Helseth, ). All these feelings diminish family hope (Andrade, Dupas, & Wernet, ; Chinchilla‐Salcedo, ; Cornelio et al, ) and may lead to treatment non‐adherence or abandonment (Chinchilla‐Salcedo, ). Meanwhile, the family maintains the hope that the diagnosis might not be real (Bally et al, ; Sällfors et al, ; Sposito et al, ).…”

“…This review highlights that family support, external support, and spirituality are resources that the family uses to balance hope. The intrinsic family connection (parent–child support) occurs when parents are by their children's side taking care and encouraging them to continue with treatment (Bally et al, ; Björk et al, ; Chinchilla‐Salcedo, ; Hinton & Kirk, ; Huang et al, ; Kylmä & Juvakka, ; Samson et al, ; dos Santos, de Oliveira, Pereira de Lima, & Barbosa da Conceição, Miriã Fernandes, ). This connection is demonstrated when parents continue to believe in their children's future and dreams (Kylmä & Juvakka, ).…”

“…This reciprocity is identified by children and adolescents, who also want to transmit hope to their parents (Hinds & Martin, ). The lack of hope in one of the family members can affect the whole family unit because of the connection between members (Bally et al, ; Chinchilla‐Salcedo, ; Hinds & Martin, ; Huang et al, ; Kylmä & Juvakka, ).…”

“…Another study highlighted the importance of financial support for maintaining parental hope (Kylmä & Juvakka, ). Support also comes from the extended family (Bally et al, ; Barrera et al, ; Björk et al, ; Chinchilla‐Salcedo, ; Dupas & Angelo, ; Samson et al, ; dos Santos et al, ; Wu et al, ), friends (Bally et al, ; Barrera et al, ; Chinchilla‐Salcedo, ; Samson et al, ; dos Santos et al, ), support groups (Sällfors et al, ), pets (Kylmä & Juvakka, ), the healthcare system (Cornelio et al, ), the community (Bally et al, ; Barrera et al, ), peers (Kylmä & Juvakka, ), other parents (Barrera et al, ; Ringnér, Jansson, & Graneheim, ), online groups (Barrera et al, ), and health professionals (Bally et al, ; Björk et al, ; Kylmä & Juvakka, ; dos Santos et al, ). The following excerpt from an adolescent exemplifies how nursing support can foster hope: “ One time I said [adolescent] I wanted to die and one nurse said: “No, you don't.…”

“…The belief that there is a reason for experiencing chronicity (Chinchilla‐Salcedo, ; Kylmä & Juvakka, ; dos Santos et al, ), that their future can be promising (Hinds & Martin, ), or exist a life after death without disease (Grossoehme, Ragsdale, Wooldridge, Cotton, & Seid, ; Kylmä & Juvakka, ) helps the maintenance of family hope. For parents who do not believe in the divine, hope lies in health professionals or future research that can heal their children (Bally et al, ; Kylmä & Juvakka, ; Samson et al, ).…”