Rights of hospitalized children and adolescents in light of clinic management

This is a mixed methods research, sequential explanatory, carried out between September and December 2019, in a university hospital in center-western Brazil. Sixty companions, eight professionals and four health care students participated in hospitalization sectors for children and adolescents. A Likert-type scale was applied with the twenty rights in the quantitative stage, and semi-structured interviews in the qualitative stage, with descriptive and content analysis, respectively. Data were integrated by connection and analyzed in light of clinic management principles.

Results

In the quantitative stage, rights were identified with the lowest percentages of compliance: staying by the mother’s side at birth, being breastfed, psychological support, recreation, monitoring the school curriculum and dignified death. In the qualitative results, it was identified that participants did not know about the resolution, considering that the rights were partially complied with: not being hospitalized unnecessarily, having a companion, not being separated from the mother at birth, being breastfed, not feeling pain, knowing the disease, enjoying recreation and educational programs, receiving information, all resources for healing, protection against abuse, preservation of image, not being used by the media and having a dignified death. Limited principles of clinic management were identified, requiring development strategies in the hospital.

Conclusion

Principles of clinic management were weakened, especially those related to health needs and comprehensiveness, transparency and social accountability.

Child advocacy; Clinical governance; Hospitals, university; Child, hospitalized; Liability, legal

nº	Right
1	Right to protection, life and health with absolute priority and without any form of discrimination.
2	Right to be hospitalized when necessary for their treatment, regardless of social class, economic condition, race or religious belief.
3	Right not to be or remain hospitalized unnecessarily for any reason unrelated to the best treatment of illness.
4	Right to be accompanied by mother, father or guardian, throughout the period of hospitalization as well as receive visits.
5	Right not to be separated from the mother at birth.
6	Right to receive breastfeeding without restrictions.
7	Right not to feel pain when there are ways to avoid it.
8	Right to have adequate knowledge of illness, therapeutic care and diagnoses, respecting the cognitive phase, in addition to receiving psychological support when necessary.
9	Right to enjoy some form of recreation, health education programs, school curriculum monitoring during hospital stay.
10	Right to have parents or guardians actively participate in diagnosis, treatment and prognosis, receiving information about the procedures to which they will be submitted.
11	Right to receive spiritual/religious support, according to family practice.
12	Right not to be the subject of clinical trial, diagnostic and therapeutic evidence, without the informed consent of their parents or guardians and their own, when they have discernment to do so.
13	Right to receive all available therapeutic resources for their cure, rehabilitation and/or secondary and tertiary prevention.
14	Right to protection against any form of discrimination, negligence or ill-treatment.
15	Right to respect their physical, psychic and moral integrity.
16	Right to the preservation of their image, identity, autonomy of values, spaces and personal objects.
17	Right not to be used by the mass media, without the express will of their parents or guardians or their own will, guarding ethics.
18	Right to confidence of clinical data, as well as the right to become aware of them, filed with the institution for the period stipulated by law
19	Right to have their constitutional rights and those contained in the Child and Adolescent Statue respected by hospitals in full.
20	Right to have a dignified death, together with their families, when all available therapeutic resources are exhausted.

n	Right	Compliance n(%)	Non-compliance n(%)	Number of respondents	Mean	Standard deviation	Minimum	Maximum
1.1	Protection to life	60(100)	-(-)	60	99.6	3.2	75	100
1.2	Priority care according to health status	60(100)	-(-)	60	99.6	3.2	75	100
1.3	Care without any form of discrimination	59(98)	1(2)	60	97.1	14.6	0	100
2	Be hospitalized whenever needed	49(94.2)	3(5.8)	52	94.7	20.6	0	100
3	Do not remain hospitalized unnecessarily	59(98)	1(2)	60	98.7	9.7	25	100
4.1	Have a companion throughout hospitalization	60(100)	-(-)	60	100	0	100	100
4.2	Receive visits during hospitalization	58(97)	2(3)	60	96.2	16.5	0	100
5	Stay by the mother’s side after birth	16(64)	9(36)	25	69	42.9	0	100
6	Receive uncomplicated breast milk in the hospital, when there is no medical contraindication to do so	17(68)	8(32)	25	82.7	34.5	0	100
7	Do not feel pain while hospitalized, when there are means to avoid it	57(95)	3(5)	60	95.8	16.1	0	100
8.1	Have knowledge about their illness and the care needed for a better quality of life, according to age	55(91.7)	5(8.3)	60	94.2	20.8	0	100
8.2	Receive psychological support whenever needed	46(78)	13(22)	59	80.9	37.2	0	100
9.1	Receive some form of recreation in the hospital	47(78.4)	13(21.6)	60	81.2	35.2	0	100
9.2	Have access to health education programs or school curriculum monitoring in the hospital	5(71.5)	2(28.5)	7	71.4	48.8	0	100
10.1	The hospital allows the participation of parents or guardians in diagnosis, treatment and monitoring of children’s and adolescents’ health	55(92)	5(8)	60	92.1	24.1	0	100
10.2	Parents or guardians are informed about the procedures that will be carried out	57(95)	3(5)	60	94.6	22.1	0	100
11	Receive spiritual and religious support according to family practice	49(84.5)	9(15.5)	58	88.6	28.0	0	100
12	Not be subject of clinical, diagnostic and therapeutic tests without the permission of parents or guardians and their own, when they have the capacity to do so	59(98.3)	1(1.7)	60	99.2	6.4	50	100
13	Receive everything possible for their cure, health recovery and/or prevention	59(98.3)	1(1.7)	60	99.2	6.4	50	100
14	The hospital provides protection against any form of prejudice, lack of care or ill-treatment	55(91.7)	5(8.3)	60	93.7	18.2	0	100
15	The hospital respects children and adolescents’ physical, mental well-being and habits	57(95)	3(5)	60	96.2	15.8	0	100
16	The hospital protects the image, identity, decision-making power over their values and personal effects of children and adolescents	59(98.3)	1(1.7)	60	98.7	7.2	50	100
17	Do not have their image or state of health spread on the internet and other media, without their own permission or the guardian’s	60(100)	-(-)	60	100	0	100	100
18	The hospital keeps children and adolescents’ medical data confidential and enables their knowledge about it, in addition to keeping it for a period determined by law	56(93.4)	4(6.6)	60	94.6	18.5	0	100
19	The constitutional rights and those contained in the Child and Adolescent Statute are respected in this hospital	60(100)	-(-)	60	99.6	3.2	75	100
20	Have a dignified death, together with their families, when all therapeutic possibilities are exhausted	1(50)	1(50)	2	50	70.7	0	100

n°	Right	QUAL stage	Principle of weakened clinic management	Principle of enhanced clinic management
n°	Right	Participants’ speeches	Principle of weakened clinic management	Principle of enhanced clinic management
7	Do not feel pain while hospitalized, when there are means to avoid it	“[...] I take him on the lap, I try to calm him down, there are methods of non-nutritive sucking, hot tub bath, prescribed analgesics” (I1).		Quality and safety in health care.
14	Protection against any form of discrimination, negligence or ill-treatment	“[...] cases are referred to the guardianship council” (I7). “There is a group called EMAC, composed of several professionals [...] that assesses and discusses case. Can see if this child is being abused” (I8).		Articulation and valorization of different knowledge and practices in health to cope with health problems.
9a	Receive some form of recreation in the hospital	“[...] this toy library is only closed, so that it has a toy library if it is not even open” (I4). “[...] do not know what could enter for premature newborns” (I1)	Orientation to health needs and comprehensiveness of care.
8B	Receive psychological support whenever needed	“[...] the reduced number of psychologists impairs care, I am involved in specific cases, which need follow-up” (I1). “[...] has a psychologist alone and some interns” (I8).	Articulation and valorization of different knowledge and practices in health to cope with health problems.
9B	Access to education programs or school curriculum monitoring, if hospitalized for more than 15 days	“[...] I have seen some interventions by the pedagogues [...] but I do not know how this is done, whether it is based on what they believe, the age group, or if it is something talked about with the school” (I3).	Education of people and the organization.
6	Receive breastfeeding without restrictions	“[...] breastfeeding is free when the baby’s clinic can, only when there is a disease, some complication that we suspend” (I11).	Guidance on results that add value to health and life
5	Stay by the mother’s side after birth	“[...] there are mothers who take time to see and pick up the child [...] sometimes the mother can pick it up, but the professional does not let her” (I1).	Orientation to health needs and comprehensiveness of care.
20	Have a dignified death, together with their families, when available therapeutic resources are exhausted	“[...] they wait too long without giving opportunity [...] knowing that here they are unable to, research where they have a better support, to trigger justice, SUS to be forwarded” (I4). “[...] working with palliative care is something that still needs to improve as well. I see here individualized movements [...] punctual actions of some professionals” (I12).	Quality and safety in health care.

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: Mara Regina Rosa Ribeiro E-mail: mrrribeiro10@gmail.com