Informação/formação necessária aos pais no cuidar da criança com necessidades especiais de saúde no domícilio

Abstract

Current paradigms suggest that children must be treated within family environment, whether with the parents’ presence in the hospital or for the care provided at home. Caring for a child with special health care needs (SHCN) at home requires parents to gain skills and specific knowledge in the health field. For this reason, the objective of this study is to understand the needs that the parents consider important in both training and information in order to give the child continuity in care after clinical discharge. The investigation has a qualitative, descriptive and exploratory nature. The population sample corresponded to parents of children with SHCN, who were admitted to a pediatric rehabilitation department of a hospital in the district of Lisbon. This sample, non-probabilistic and suitable, consisted of three mothers of children with SHCN. Data collection included sociodemographic characterization, the elaboration of the family genogram and the eco-map and the interview. The results reveal that the mothers feel greater difficulty in procedures related to hygiene care, nutrition and mobility. Equally, difficulty in managing their emotions related to the implied health changes in the children and financial difficulties emerged. To address these difficulties the mothers developed their technical abilities to care for the child and both relational and behavioral skills to deal with the situation they were experiencing in a more healthy manner. This was through maintaining the formal support of the nursing team, the emotional support of family and friends and some material resources all needed for the continuity of the care given to the child. From the results, we can infer, and in conclusion of this investigation, that it is essential that the nursing team need to understand both the parents’ needs and the information and training required in order to plan the care needed. So, the challenge of developing a personalized strategy with the parents which will enable them to continue care at home in order to promote the health of the child and so contribute more human and higher quality care, is up to the nurse.

Date of Award	15 Mar 2016
Original language	Portuguese
Awarding Institution	Universidade Católica Portuguesa
Supervisor	Zaida Charepe (Supervisor) & Margarida Lourenço (Co-Supervisor)