Abstract
This study aims to understand the experiences of families of children with special healthcare needs in rural areas in Thailand. Grounded theory (GT) was employed to understand families' experiences when caring for children with special healthcare needs (CSHCN) in rural areas. Forty-three family members from thirty-four families with CSHCN participated in in-depth interviews. Interviews were recorded and transcribed. The constant comparative method was used for data analysis and coding analysis. Adjusting family's life was the emergent theory which included experiencing negative effects, managing in home environment, integrating care into a community health system, and maintaining family normalization. This study describes the process that families undergo in trying to care for CSHCN while managing their lives to maintain a sense of normalcy. This theory provides some intervention opportunities for health care professionals when dealing with the complexities in their homes, communities and other ambulatory settings throughout the disease trajectory, and also indicates the importance of taking into consideration the family's cultural background.
Highlights
Advanced medical technology has increased the survival rate of children from traditional killers such as infectious disease and has improved the survival of a greater number of children with special health care needs (CSHCN) [1, 2] who require more complex care for their physical, developmental, behavioral, or emotional differences than their typically developing peers [3,4,5]
A recent publication showed that residents of these areas have significantly lower formal education and incomes compared to residents of urban areas due to the geographical isolation, poverty, and lack of education
These themes and subthemes illustrate the experiences and processes of families who care for CSHCN in rural areas in Thailand, and comprises four major processes
Summary
Advanced medical technology has increased the survival rate of children from traditional killers such as infectious disease and has improved the survival of a greater number of children with special health care needs (CSHCN) [1, 2] who require more complex care for their physical, developmental, behavioral, or emotional differences than their typically developing peers [3,4,5]. In Thailand, there are approximately 3.9–11.6/1000 live births annually in which the baby is recognized as having serious health conditions [13,14,15]. These children consume more healthcare resources, incur higher healthcare costs, have the potential to face more health complications and have a considerably higher mortality rate than other populations [14, 16]
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