Cuidados paliativos pediátricos: Perspectivas do familiar cuidador de crianças e adolescentes internados em um hospital universitário

Abstract

Pediatric palliative care is active and total care for children and adolescents, as it considers body, mind and soul and also provides support to the family. The purpose of this care is to improve the quality of life of the individuals who receive it. The objective of the study was to understand the experiences of the family caregiver in relation to the assistance provided by health professionals to hospitalized children and adolescents and in palliative care. The study had a descriptive-exploratory approach, qualitative, transversal and analytical. It was developed in the pediatric and oncopediatric wards of the Alcides Carneiro University Hospital of the Federal University of Campina Grande-HUAC/UFCG. Based on the saturation criterion, 11 family caregivers participated. Inclusion criteria were being a family caregiver of a hospitalized child or adolescent and in palliative care for at least 3 months, being over 18 years of age. Companions who were not relatives of the patient or who accompanied the minor hospitalized in the ICU or in outpatient care were excluded. The selection of participants was made through the analysis of the patients' charts, with subsequent active search. A sociodemographic questionnaire and a structured interview were used as guiding instruments. Data collection took place in May and June 2022. The interviews were carried out in a reserved place, preserving the participant's privacy and were recorded, with an average duration of one hour. The data obtained through the sociodemographic questionnaire were analyzed using descriptive statistics, just to characterize the participants. The data from the interviews were understood by the content analysis, proposed by Laurence Bardin, and demonstrated in trees of association of meanings by Spink and Lima. The study complied with the requirements of Resolution nº466/12 and 510/16 of the CNS/MS and was approved by the CEP of HUAC–UFCG, under CAAE: 49471421.0.3001.5182. The results showed that most of the minors undergoing treatment were in early childhood and undergoing cancer treatment, with repeated hospitalizations. The family caregiver of all patients was female, with a mean age of 36 years, most were Catholic and had a low level of education. The results of the interviews showed ambiguities regarding the caregivers' experiences, with the following predominating: the quality of care provided was adequate, highlighting the agility of care; dialogue with the team was considered precarious regarding the exchange of information; the assistance provided by most health professionals was considered humanized, through attentive and welcoming care; all companions mentioned some difficulty faced during treatment and the importance of a support network to feel strengthened; faith appeared as an essential factor to endure the treatment; and most of the caregivers showed a basic and non-technical knowledge about palliative care. With the development of this theme based on humanized care during life, illness and death, it is expected to contribute to broaden the discussion on the subject in the clinical, academic-scientific space and to strengthen the practice of palliative care.