Information manual for the family of the child with leukemia: reception study

Qualitative study based on the theoretical framework of the Reception Study. Online interviews were conducted with families of children undergoing treatment for acute leukemia at different stages of treatment and who used the manual ‘My child has acute leukemia. How about now?’ for thirty days. The WebQDA^® software was used in the organization of data analyzed according to the inductive Qualitative Content Analysis.

Results

Participation of nine families represented by seven mothers, one father and one grandmother. From the analysis, emerged analytical categories related to the context experienced by the family when receiving the manual and to the evaluation of the language and illustrations. The meaning attributed by the family to receiving the manual, based on interactions with it, is ‘Having the Hope of Healing Strengthened’, which helps them to face the adversities of the treatment and keeps them optimistic about the best prognosis.

Conclusion

The use of informative materials facilitates communication with the team, promotes the family’s health literacy and strengthens their hope for a cure.

Information technology; Neoplasms; Family; Pediatric nursing; Child

Identification and composition of the family of the child with ALL	Main caregiver/education/profession	Period when the family received the manual	Phase of the child’s treatment when the family received the manual
Family 1 (MF1) Composition: father, mother and a 3-year-old daughter with ALL	Mother - postgraduate – pedagogue	Three months after diagnosis	Consolidation therapy
Family 2 (MF2) Composition: mother, 3 children, two 5-year-old girls (twins), one with ALL, and a boy, maternal aunt and maternal grandparents	Mother - completed higher education - nurse	Two months after diagnosis	Consolidation therapy
Family 3 (MF3) Composition: father, mother and a 4-year old daughter with ALL	Mother – complete high school - nanny	Seven months after diagnosis	Maintenance therapy
Family 4 (MF4) Composition: father, mother and a 6-year old daughter with ALL	Mother - complete high school – housewife	11 months after diagnosis	Maintenance therapy
Family 5 (MF5) Composition: father, mother and a 14-year-old daughter with ALL	Mother - complete higher education - publicist	Two years after diagnosis	Maintenance therapy, one month after the end of treatment
Family 6 (MF6) Composition: father, mother and three children; two girls, the oldest 9 years old with ALL, and a boy	Mother - complete higher education - pedagogue	One month after diagnosis	Induction therapy
Family 7 (FF7) Composition: father, mother and two children; a 5-year-old boy with ALL and a girl	Father - complete higher education - business administrator	Four days after diagnosis	Induction therapy
Family 8 (MF8) Composition: father, mother and three children; two 3-year-old girls (twins), one with ALL, and a boy	Mother - complete high school - hospital plaster technician	Seven days after diagnosis	Induction therapy
Family 9 (GF9) Composition: paternal grandmother, paternal aunt and a 6-year old girl with ALL (granddaughter)	Paternal grandmother (has custody of the child) – complete higher education - psychologist	Five months after diagnosis	Maintenance therapy

Representative picture of the analytical category - Evaluation of the manual from the family’s perspective: use of embracing language	Primary caregiver speech	What did it represent to the family?
Definition of leukemia	“[...] there is this part where it says there is no reason for Priscila to have had this, right... and there is someone who told me that I must have let her get anemia. [...] the manual was good because I could see things clearly. The right research I was doing and the wrong research, right, and what that person said had nothing to do....” (MF6)	Understanding the etiology of leukemia, clarifying possible doubts and even misconceptions that could be contributing to intensify their suffering.
Representation of a warning sign (adverse effect) during treatment	“[...] and then, I was even able to ask the physicians about some things that I had not yet been warned of, until one day, I even told you about the wounds on the skin and then I just started using the moisturizing cream “x” because I saw in the manual that these wounds could occur.” (FF7)	Family see themselves as capable of anticipating child care and learn to question the team, as reading the manual awakens them to aspects that had not yet been warned of.
Representation of the bald child in the treatment phase	“[...]because there was a fear, on our part, on the issue of hair loss, and then, this little child in the manual itself, there is an illustrative image, right [...]. In fact, illustrations are very important in the manual! I think it’s fundamental because it makes us see ourselves or else you see your child in those illustrations and this is part of this acceptance process we are going through [...]” (FF7)	The child with alopecia is represented at different times in the manual. When seeing the illustrations, the family can think of their own child who is experiencing the disease. This helps in accepting the changes that occur in the child’s body.
Representation of the symptoms of acute lymphoblastic leukemia (ALL)	“Laura has always had a throat infection, always, since she was a little girl... I remember this could be a symptom, but for me, who didn’t know, I had no idea that it could be [...] she got a lot of throat infections, so I imagine that this was already a symptom of leukemia, because I saw in the manual that infections are one of the symptoms, right.” (MF3)	Learn about early signs that may indicate a possible leukemia diagnosis, such as repeated infections.

Escola Paulista de Enfermagem, Universidade Federal de São Paulo R. Napoleão de Barros, 754, 04024-002 São Paulo - SP/Brasil, Tel./Fax: (55 11) 5576 4430 - São Paulo - SP - Brazil
E-mail: actapaulista@unifesp.br

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[1] Corresponding author Larissa Guanaes dos Santos E-mail: guanaes.unifesp@gmail.com