Family knowledge about the legal rights of children and adolescents with cancer

Identify the knowledge of family members of children and adolescents with cancer about their legal rights, difficulties, and concessions to ensure them.

Method:

Quantitative study, survey type, of intersectional design. A questionnaire drawn up by the researchers was applied in order to characterize the minor and their family and also to identify the family’s knowledge about legal rights. Descriptive statistics were used to analyze data.

Results:

61 family members who participated know some more rights to the detriment of others and are especially motivated to search for information when negative impacts on the financial life increase, with repercussions beyond family health.

Conclusion:

the studied population requires more information and demands knowledge about some rights guaranteed by law. Guidance on rights empowers the family and guarantees the necessary care, searching to have an intersectoral action qualify care and assist in restructuring family dynamics to deal with chronic conditions.

Descriptors:
Patient Rights; Defense of Children and Adolescents; Neoplasms; Family; Pediatric Nursing

	n	%
Characteristics of the participants
Gender
Female	55	90
Male	6	10
Relationship with the children and adolescents
Mother	51	83.6
Father	6	9.8
Grandmother	03	4.9
Stepmother	01	1.6
Age
< 30	16	26.2
30-40	33	54.1
40-49	9	14.8
50-59	2	3.3
≥ 60	1	1.6
Marital status
Married	42	68.9
Single	12	19.7
Widower	5	8.2
Divorced	2	3.3
Education
Complete primary education	6	9.8
Incomplete primary education	17	27.8
Complete high school	17	27.8
Incomplete high school	13	21.3
Complete higher education	8	13.2
Characteristics of the children and adolescents
Gender
Female	28	45.9
Male	33	54.1
Age
1-5 years	21	34.3
6-10 years	15	24.6
11-15 years	22	36.2
> 16 years	3	4.9

Rights known to family members of children and adolescents with cancer	n	%
Right to remain with a companion during consultations, exams, and period of hospitalization and right to food.	58	95.1
Right to the Continuous Cash Benefit (BPC) or Disability Assistance.	51	83.6
Right to universal and equal access to health services, through SUS.	49	80.3
Right of parents or guardians of the child/adolescents to withdraw from the Government Severance Indemnity Fund for Employees (FGTS).	39	63.9
Right of exemption of public transport tariffs (urban, intermunicipal, interstate, and patients' transportation) for the patient and a companion.	34	55.7
Right to continue school activities during periods of hospitalization.	33	54.1
Right to purchase imported medicines.	33	54.1
The right to have some form of recreation, such as toys in hospitals and health centers that serve children and adolescents.	26	42.6
Right to continue school activities during periods of home stay.	25	41.0
The right of parents or guardians of cancer patients up to 21 years of age, who are workers registered with PIS until 10/04/1988, to withdraw the PIS/PASEP quotas.	20	33.0
The right to a caregiver and/or mediator together with the child in the classroom of the school where he/she is studying.	16	26.2
Right to priority progress in lawsuits.	14	23.0
Other	3	4.9

Associação Brasileira de Enfermagem SGA Norte Quadra 603 Conj. "B" - Av. L2 Norte 70830-102 Brasília, DF, Brasil, Tel.: (55 61) 3226-0653, Fax: (55 61) 3225-4473 - Brasília - DF - Brazil
E-mail: reben@abennacional.org.br

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[1] Corresponding author: Lucila Castanheira Nascimento. E-mail: lucila@eerp.usp.br