Caring for Children With Hypoplastic Left Heart Syndrome
Caring for Children With Hypoplastic Left Heart Syndrome
The key finding of this study was that appropriate parental response to their child's complex care requirements, especially during the first year of the child's life, necessitated vigilant parental action or even exaggerated vigilant parental action as they mastered necessary skills. Uncertainty about their child's immediate and long-term survival and inconsistent, and at times, inadequate support, both formal and informal, was out of the parents' control and reinforced the parents' need to be vigilant in parental actions of monitoring and caring for their child with HLHS. Monitoring through situation-appropriate vigilance and exaggerated vigilance was a fitting response to managing what was within their control, and the feeding and infection control challenges alone provided parents with ample opportunity to become experts and confident care providers and advocates for their children with HLHS. Further exploration of exaggerated parental vigilance is required to determine if these actions persist as the child grows and whether there are long-term implications for the child, parent, and/or family (Farley et al., 2007; Helfricht, Latal, Fischer, Tomaske, & Landolt, 2008; Lawoko & Soares, 2006; Norberg & Boman, 2008).
The appropriateness of different intensities of vigilant action is situation-dependent because there are times when vigilance or even exaggerated vigilance is necessary for parents, for example, when children are at risk for mortality at home (Dobrolet et al., 2011; Ghanayem et al., 2003). However, there are situations, especially as the child survives each surgery and becomes more stable, when exaggerated vigilance in parental action is not necessary and could negatively influence parents' affect and function (Carey et al., 2002). Unmerited overprotective parenting may have unwanted consequences for the psychosocial development of children (Ungar, 2009), while the influence of parental perception of child vulnerability and over protective parenting on health care utilization requires further investigation (Thomasgard & Metz, 1996).
Our study findings have also prompted us to consider the relationship between typical parental actions or typical parenting and vigilant or exaggerated vigilant parenting. We propose that vigilant parenting is a culmination of influences related to parenting typical children and influences related to parenting children with a serious health condition. Further, exaggerated vigilant parenting is a culmination of influences related to parenting typical children and children with serious health conditions, and the influences related to parenting children with illness trajectories that are protracted and/or complicated by persistent uncertainty (see Figure 3).
(Enlarge Image)
Figure 3.
Collective Influences that Culminate in Vigilant and Exaggerated Vigilant Parenting
The influences on typical parenting of family beliefs, parenting practices, parenting style, child temperament, and health provide the foundation for vigilant and exaggerated vigilant parenting. Shared family beliefs about health, illness, and spirituality can help parents make sense of challenging situations and facilitate a positive, hopeful outlook of their child and their own parenting abilities (Walsh, 2003, 2006). Parents' perceptions and enactment of parenting practices also influence typical parenting. Walker and Kirby (2010) reviewed the literature to identify and explore the theoretical context or research on early parenting. Through their analysis of 25 articles, they confirmed four domains of parenting practices: safety, feeding and oral health, development promotion, and discipline. Safety in typical parenting relates to protecting the child from morbidities or mortality, for example, having a smoke alarm, using a car seat for the child, and using safety latches on cupboards (Walker & Kirby, 2010). Added to these safety concerns are the risks related to child fragility and vulnerability when a child has a serious health condition. Similarly, the collective influences of parenting style as a mediator of parenting practices (Darling & Steinberg, 1993) and parenting skills as an important factor in child vulnerability (Willms, 2002) culminate in exaggerated vigilant parenting, the appropriate response to persistent illness-related uncertainty, prolonged caregiving demands for parents, and resultant isolation of the parents. The process of parents moving between typical, vigilant, and hypervigilant parenting requires further research and delineation.
Discussion
The key finding of this study was that appropriate parental response to their child's complex care requirements, especially during the first year of the child's life, necessitated vigilant parental action or even exaggerated vigilant parental action as they mastered necessary skills. Uncertainty about their child's immediate and long-term survival and inconsistent, and at times, inadequate support, both formal and informal, was out of the parents' control and reinforced the parents' need to be vigilant in parental actions of monitoring and caring for their child with HLHS. Monitoring through situation-appropriate vigilance and exaggerated vigilance was a fitting response to managing what was within their control, and the feeding and infection control challenges alone provided parents with ample opportunity to become experts and confident care providers and advocates for their children with HLHS. Further exploration of exaggerated parental vigilance is required to determine if these actions persist as the child grows and whether there are long-term implications for the child, parent, and/or family (Farley et al., 2007; Helfricht, Latal, Fischer, Tomaske, & Landolt, 2008; Lawoko & Soares, 2006; Norberg & Boman, 2008).
The appropriateness of different intensities of vigilant action is situation-dependent because there are times when vigilance or even exaggerated vigilance is necessary for parents, for example, when children are at risk for mortality at home (Dobrolet et al., 2011; Ghanayem et al., 2003). However, there are situations, especially as the child survives each surgery and becomes more stable, when exaggerated vigilance in parental action is not necessary and could negatively influence parents' affect and function (Carey et al., 2002). Unmerited overprotective parenting may have unwanted consequences for the psychosocial development of children (Ungar, 2009), while the influence of parental perception of child vulnerability and over protective parenting on health care utilization requires further investigation (Thomasgard & Metz, 1996).
Our study findings have also prompted us to consider the relationship between typical parental actions or typical parenting and vigilant or exaggerated vigilant parenting. We propose that vigilant parenting is a culmination of influences related to parenting typical children and influences related to parenting children with a serious health condition. Further, exaggerated vigilant parenting is a culmination of influences related to parenting typical children and children with serious health conditions, and the influences related to parenting children with illness trajectories that are protracted and/or complicated by persistent uncertainty (see Figure 3).
(Enlarge Image)
Figure 3.
Collective Influences that Culminate in Vigilant and Exaggerated Vigilant Parenting
The influences on typical parenting of family beliefs, parenting practices, parenting style, child temperament, and health provide the foundation for vigilant and exaggerated vigilant parenting. Shared family beliefs about health, illness, and spirituality can help parents make sense of challenging situations and facilitate a positive, hopeful outlook of their child and their own parenting abilities (Walsh, 2003, 2006). Parents' perceptions and enactment of parenting practices also influence typical parenting. Walker and Kirby (2010) reviewed the literature to identify and explore the theoretical context or research on early parenting. Through their analysis of 25 articles, they confirmed four domains of parenting practices: safety, feeding and oral health, development promotion, and discipline. Safety in typical parenting relates to protecting the child from morbidities or mortality, for example, having a smoke alarm, using a car seat for the child, and using safety latches on cupboards (Walker & Kirby, 2010). Added to these safety concerns are the risks related to child fragility and vulnerability when a child has a serious health condition. Similarly, the collective influences of parenting style as a mediator of parenting practices (Darling & Steinberg, 1993) and parenting skills as an important factor in child vulnerability (Willms, 2002) culminate in exaggerated vigilant parenting, the appropriate response to persistent illness-related uncertainty, prolonged caregiving demands for parents, and resultant isolation of the parents. The process of parents moving between typical, vigilant, and hypervigilant parenting requires further research and delineation.
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