Waves of family hope: narratives of families in the context of pediatric chronic illness.
Ana Carolina Andrade Biaggi Leite, Cristina García-Vivar, Francine DeMontigny and 1 others
PMID 34816873WHAT IT FOUND
Three families of children with chronic illness described hope moving through uncertainty at diagnosis, optimism during stable treatment, feeling lost during worsening, and future hope.
Clear, empathetic information and family strengths were named as supports.
Key findings
01Families described hope as changing through four named states: uncertain at diagnosis, caring during stable treatment, latent when the child worsened, and expectant when projecting a desired future.
02Clear, empathetic information could support hope, but information about death or poor outcomes could reinforce uncertainty; faith, family support, and normal activities also helped.
03Mothers often became primary caregivers and felt burdened or guilty, while another hopeful person, such as an aunt or faith group, could supply driving energy for family hope.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study included only 10 participants from three families, so the themes may not represent other families. Families were from one hospital in Brazil, with similar family structures, living contexts, and chronic diagnoses, so transferability is limited. Children newly diagnosed within six months were excluded, so the earliest crisis period may be missing. It is a qualitative study of narratives, so it cannot show whether any nurse action changes hope or health. Transcripts and analyses were not shared with participants, and the photos were not analyzed.
Declared interests
The study was financed by CAPES (Finance Code 001) and CNPq in Brazil. The supplied text does not state a competing interest declaration beyond funding.
The easy way to misread this
Do not conclude that clear information and identifying family strengths will raise hope. This is a small qualitative study of families' narratives, not a tested intervention, and the paper says information can also reinforce uncertainty when it concerns poor outcomes.