Condição crônica na infância durante a hospitalização: sofrimento do cuidador familiar

Abstract

RESUMO Com a presente pesquisa, de caráter qualitativo, objetivou-se apreender a percepção do cuidador familiar de crianças hospitalizadas acerca do sofrimento relacionado à condição crônica na infância. A pesquisa de campo foi realizada na clínica pediátrica de um hospital público de João Pessoa com sete cuidadores familiares (um pai, uma avó e cinco mães) no período de janeiro a março de 2010, por meio da entrevista semiestruturada. A análise seguiu os princípios da interpretação temática. Os resultados apontaram que os cuidadores familiares apresentam sofrimento psíquico, físico e estrutural ao lidarem com a condição crônica na infância durante a hospitalização. Apreender a percepção dos cuidadores familiares acerca da condição crônica na infância favorece a apropriação subjetiva de seus conflitos, capazes de ocasionar diversas formas de sofrimento. O processo de trabalho em pediatria precisa estar organizado para atender às reais necessidades do binômio e assisti-lo integralmente, a fim de amenizar seu sofrimento na condição de hospitalização.

Complex chronic conditions in children and adolescents: hospitalizations in Brazil, 2013

“…The main characteristics of CCC are functional limitations, specialized care needs and technological dependence 2 . CCC is irreversible and represents a high social cost for patients and their families, demanding household and community adaptations, as well as an agile health system with high complexity and multiple professional assistance [3][4][5][6][7] . The prevalence of CCC among children and teenagers is growing around the world because of the reduction in infant mortality, improvements in surgical techniques and biomedical engineering, increased immunization cover and healthcare and improvements in social indicators.…”

Strategies of Families in the Care of Children With Chronic Diseases

“…18 Thus, it was noticed that family caregivers need to allocate time to take care of themselves in order to devote themselves in the best way to care for the child. 27 Given the above, it is essential that the caregiver creates strategies that enables the practice of some physical activity. The challenge for caregivers is to balance the care demands of chronic condition of their child and their quality of life.…”

Family organization for the care of children with chronic conditions, discharged from the neonatal intensive care unit

“…16 It is then necessary that the families of these children be considered in their singularities, because each may experience the disease and the worsening of the child's condition in a different way. 8 In this sense, there has been growing interest in assessing the ability of the parents of each child in order to promote the continuity of care provided to children with chronic conditions. 9 It was found that after the initial moment of discharge, the care ended up differing from one child to another.…”

“…3,[5][6] They are also focused on the organization of health care services for this group 7 and the repercussions of care for the families. [8][9] However, as there is not a systematic model of care for these children, often what is observed is that professionals do not yet know how these families organize home care, due to the physical distance between these professionals and the child and the family.…”