Challenges of family caregivers of children with special needs of multiple, complex and continuing care at home

Abstract

Objective: To describe the challenges of family caregivers of children with special needs of multiple, complex and continuing care at home. Methods: Qualitative study based on the theoretical framework of the Patient and Family-Centerd Care (PFCC). We interviewed eleven family caregivers from 13 children enrolled in a special school in the Brazilian city of Maringá (PR). The data were subject to content analysis, thematic modality. Results: The main challenges identified are the lack of preparation for home care, the difficulty of access and follow-up in Primary Health Care services, and the difficulty of including the child in social interaction. However, caregivers react positively to these adversities. Conclusions and implications for practice: The nurses need the necessary training to transcend hospital technical care and to develop a care practice based on family-centerd care, considering this as a protagonist, including it in the process for the quality of life of these children.

O Experience of mothers in the care of children and adolescents with special health needs

“…Thus, the high demand for care that CSHCN present, in addition to usual care measures for their age, makes the family undergo an adaptation in relation to the home care process. Because of this, it is important that health professionals help the family to cope and adapt to their care, and also help them recognize their weak and strong points, including recognizing when it is needed to ask for help in the family environment and in health institutions (Dias et al, 2019).…”

“…However, in order to change this practice, it is essential to use an approach that prioritizes the family as a foundation for professional practice. In this sense, the use of the assumptions of Patient and Family Centered Care (PFCC), guiding the assistance to these children/adolescents and their families, would make it more appropriate and consistent with the needs presented (Dias et al, 2019).…”

“…The advancement of technology in recent years has benefited and favored the survival of children, who for various causes, such as traumas, congenital malformations, chronic diseases, prematurity, among others, need technologies to maintain life and care developed by a multidisciplinary team and by the family, what differentiates them from other children (Ramos, Moraes, Silva, & Goes, 2015). Thus, they constitute a group of children named in Brazil as Children and Adolescents with Special Health Care Needs (CSHCN) (Dias et al, 2019).…”

“…Due to the complexity of their health, CSHCN have limitations in their basic activities of daily living and require the management of technological devices and differentiated access to health services when compared to children without health impairment (Dias et al, 2019).…”

Educational demands of family members of children with special health care needs in the transition from hospital to home

“…Studies show that the current models for hospital discharge preparation are fragmented and place a high burden on family caregivers (4) , who claim that they were not prepared by health professionals to meet the care demands of children at home (3,5) .…”