O cuidado prestado pela família à criança portadora de encefalopatia hipóxico-isquêmica no contexto domiciliar: contribuições para a enfermagem

• Autor(a) principal: Coutinho, Katia Aparecida Andrade
• Data de Publicação: 2015
• Tipo de documento: Dissertação
• Idioma: por
• Título da fonte: Biblioteca Digital de Teses e Dissertações da UERJ
• Texto Completo: http://www.bdtd.uerj.br/handle/1/11373
• topic: Children with Disabilities; Child Care; Caregiver; Family; Nursing; Criança com Deficiência; Cuidado da Criança; Cuidador; Família; Enfermagem; CNPQ::CIENCIAS DA SAUDE::ENFERMAGEM

The technological advancements in the last three decades in health care have ensured the survival of extremely premature infants or with asphyxia, which has led to what is called children with special health care needs, among them, the carriers of hypoxic-ischemic encephalopathy. Encephalopathy affects children in varying degrees requiring specific care, which implies the inclusion of their families in child-care actions when at home. Object of study: the care given by the family to children with hypoxic-ischemic in the home context. Objectives: to describe the demands of care to child carrier of encephalopathy at home; to identify the care practices developed by family caregivers with these children and to discuss the challenges determined by such care for family caregivers of children with encephalopathy at home. Methodology: qualitative research, developed from the sensitive creative method, using the dynamic body-know in the household of five groups of family caregivers, amounting to twelve family members. The period of data generation occurred from February to April 2014. Data were analyzed from the speech analysis, in its French chain, and interpreted in the light of Freire's conception, especially the concepts of reflexive criticism, awareness process and dialogical education and family-centered care. Results: family care practices showed changes in usual care of feeding, hygiene, development and medical care. In the practice of feeding, family members expressed their behavior in face of oral or gastrostomy feeding and their beliefs and attitudes about these eating habits. As for hygiene, they revealed the need for adjustments in the bath usual practice. With regard to care aimed at the development, they pointed leisure and play as adjuvant elements to favor the child development. Medical care has emerged as part of the universe of the families, pointing to the need for health professionals, in particular nursing professionals, to include this issue in their agendas guidelines. On the challenges faced by families, these were related to fear and inexperience in caring for the child, to coping and acceptance of special health need, the need for a solidarity network cooperating in economic difficulties and in health care by different professionals and specialties. Conclusion: the multiple dimensions of care presented by children with special health care needs point to nursing professionals the need to develop their educational role with relatives ruled in dialog and horizontality, thus facilitating the relationship with them, for the benefit of the child and promoting professional/family approximation. This study points out the need for health professionals, especially nurses, to realize the family as a key element in the care process to child with special health care needs when at home.