Keeping Hope Possible

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

“…The search for constant hope begins at the moment of diagnosis. 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, ).…”

“…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, ).…”

“…For parents, this occurs after acceptance of the diagnosis when they develop skills to care for their chronically ill child and feel more confident. At this stage they have the strength to re‐establish control, face future uncertainties, and restructure the balance of hope (Bally et al, ; Björk et al, ; Cornelio et al, ; Hinton & Kirk, ; Huang, Mu, & Chiou, ; Samson et al, ). Adolescents resist the loss of hope and seek to be confident and rebuild hope, imagining a promising future (Wu, Chin, Haase, & Chen, ).…”

“…There is a constant uncertainty about diagnoses, treatment efficacy, prognosis (Amador, Reichert, Lima, & Collet, ; Barrera et al, ; Cornelio et al, ; De Graves & Aranda, ; Hinton & Kirk, ; Huang et al, ; Nyborn, Olcese, Nickerson, & Mack, ), exacerbation, relapse (Amador et al., ; Cornelio et al, ; Granek et al, ; Hinton & Kirk, ; Sällfors et al, ; Sposito et al, ), and impacts on family life (Hinton & Kirk, ; Pizzignacco & Lima, ). Hence, the family cannot plan their future (Granek et al, ; Hinton & Kirk, ; Nicholas et al, ) and try to live day‐by‐day in the present: “have to take things slow and day to day” (Barrera et al, , p. 412) because “things can change in an instant and so does hope ” (Bally et al, , p. 367) .…”

“…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, ).…”