Caring for technology-dependent children at home: Problems and solutions identified by mothers
Introduction
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 survive (Toly et al., 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 et al., 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).
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.
Section snippets
Design
This research was one component of a larger, mixed method, institutional review board (IRB) approved study that examined the relationship between the technology-dependent children's severity of illness, the mothers' normalization efforts and depressive symptoms with family functioning in mothers caring for technology-dependent children at home (Toly et al., 2012a). In this report, a qualitative, descriptive design was employed to analyze the open-ended question regarding normalization.
Sample
A
Mothers
A total of 101 mothers met inclusion criteria (Table 1). The mothers ranged in age from 21 to 66 years old (M = 37.87, SD = 9.42) with duration of caregiving for the child at home following the child's initiation of lifesaving medical technology between 2 and 161 months (M = 56.447, SD = 45). A majority of the mothers were White, Non-Hispanic, the biological mother, married or partnered, with at least some college or a baccalaureate degree. About half had a yearly family income of ≤$60,000.
Children
The
Discussion
The problems identified by mothers of technology-dependent children in this study tended to be quite challenging for a parent caregiver to address, extremely cumbersome at times, co-existent, and costly. The six problem themes could be grouped as stressful situations and characterized as all requiring special skills, special knowledge, and a positive attitude to deal with effectively and efficiently. For example, keeping the technology-dependent child's appointment schedule is a major feat and
Limitations
A major limitation of this study was that participants were solely mothers from one geographic region of the United States, which limits generalizability. Additionally, a couple of mothers identified no problems and no solutions to the open-ended question. The investigators would have liked to follow up with these mothers to see if things were going so smoothly, that no problems existed or whether they had potentially addressed all of the problems they encountered successfully and then forgot
Conclusion
Mothers of technology-dependent children and their children are highly resilient at dealing with life events in complex situations. These parent caregivers are experts at problem solving and adapting in challenging situations and need to be respected for these sophisticated capabilities. Health caregivers would be wise to listen carefully to what parents of technology-dependent children report about their activities of daily living to best recommend useful strategies verbalized by these
Funding
This work was supported by the Alpha Mu Chapter of Sigma Theta Tau International, Frances Payne Bolton School of Nursing Alumni Association, Case Western Reserve University Research ShowCASE, and the Society of Pediatric Nurses. This study was supported by grant UL 1RR024989, the Clinical and Translational Collaborative at Case Western Reserve University, Dahms Clinical Research Unit. The funding sponsors had no role in study design; in collection, analysis and interpretation of data, in
Declaration of competing interest
None.
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