Caring for technology-dependent children at home: Problems and solutions identified by mothers

Abstract

The population of children who are dependent on life-sustaining medical technology in the United States is over 600,000 and continues to grow (U.S. Department of Health and Human Services, 2013). Technology-dependent children have complex, chronic conditions and are dependent on technology such as mechanical ventilation, intravenous nutrition or medication, respiratory support or nutritional support to live (Toly, Musil & Carl, 2012a; Spratling, 2015). Advances in medical technology allow technology-dependent children to live longer. Yet, the care associated with technology significantly impacts individual family members and family life on a daily basis over an indefinite period (Toly et al., 2012a; Caicedo, 2014; Caicedo, 2015). Following the technology-dependent child’s discharge to home, families begin to adjust to the change imposed by caring for a child with these complex care needs by creating a new “normal.” This new normal requires that the parent respond to the situation and adapt their lifestyle to accommodate the healthcare needs of the child (Toly et al., 2012a; Knafl & Deatrick, 2003). This process, referred to as normalization in the literature, begins with accepting the reality of the child’s condition and the potential lifestyle and family changes needed to manage the child’s condition (Deatrick, Knafl, & Murphy-Moore, 1999; Knafl et al., 2013). When normalization is present, parents feel competent in caring for the complex healthcare needs of their children and incorporating the medical management into their family lifestyle and routines (Deatrick et al., 1999; Knafl et al., 2013; Rehm, 2005). These families adopt unique solutions for solving the problems they experience and adjust the environment to provide their children with as many everyday childhood experiences as a typical, normally developing child (Leyenaar, O’Brien, Leslie, Lindenauer, & Mangione-Smith, 2017). Families caring for a technology-dependent child at home must learn to restructure goals based on balancing daily family life with their children’s required medical technology to keep the child stable and healthy while concomitantly maintaining a functioning family (Toly et al., 2012a; Toly, Musil & Carl, 2012b). When parents feel like they fully understand their children’s medical condition, they perceive the condition management as less burdensome and have greater confidence in their parenting skills (Deatrick et al., 1999; Sav et al., 2015; Smith, Cheater, & Bekker, 2015). Other families struggle in their normalization efforts and experience unresolved problems in the day-to-day medical management of their children’s condition (Gonzalez et al., 2017; Knafl & Deatrick, 2003). Parents face challenges in balancing normalcy, family life, household needs, and medical care or treatment needs of their technology-dependent child. The constant change in the care needs of the technology-dependent child and unpredictability of the child’s health status can lead parents to focus on the child’s health schedule and routine to the detriment of other family roles and responsibilities (Leyenaar et al., 2017; Smith et al., 2015). 1.1. Study Purpose The purpose of this study was to identify the day-to-day management problems and solutions employed by mothers of technology-dependent children. At this time, there is little information to assist parent caregivers with the day-to-day management problems they might experience while caring for their technology-dependent children at home (Dybwik, Tollali, Nielsen, & Brinchmann, 2011). Thus, exploring management problems and solutions to these problems is warranted.