Caring for Children With Hypoplastic Left Heart Syndrome
Based on a review of classic pediatric chronic illness literature, uncertainty, protectiveness, support, and mastery of complex care were identified as key concepts that may influence parental response to complex care requirements for their child with HLHS (see Figure 1).
(Enlarge Image)
Figure 1.
Parental Response to Caring for a Child with Complex Care Needs
Mishel (1988) described uncertainty as a state where a person is unable to categorize an event or to predict an outcome. She noted that parents used vigilance to cope with uncertainty, but this created a negative impact on family function due to the constant need to watch the child. The diagnosis of HLHS is profoundly distressing, and parents experience feelings of marked uncertainty (Claxon-McKinney, 2001). In the short term, the child is at risk for inter-stage mortality (Dobrolet et al., 2011; Ghanayem et al., 2003) and long-term outcomes any more specific than "survival" are uncertain (Atallah et al., 2008; Brosig Soto et al., 2011). Children with HLHS were found to have lower IQ scores and some attention and behavioral problems (Brosig, Mussatto, Kuhn, & Tweddell, 2007a. Maternal worry contributed to the risk of negative neuropsychological and behavioural outcomes in survivors of CHD (McCusker et al., 2007).
Several studies found that parents of children with CHD, including HLHS, engaged in high levels of vigilant parental action (Brosig et al., 2007b; Uzark & Jones, 2003). In a classic study, Green and Solnit (1964) argued that life-threatening incidents continue to affect mothers because fears of death persist and lead to the parental perception of the child as vulnerable. Protectiveness was reported as the excessive regulation of the child's activity and socialization by the parents in another classic study (Linde, Rasof, Dunn, & Rabb, 1966). A more recent study suggested that parental protection may hinder the child's motor development because children need to have physical activity and social interaction in order to limit potential motor deficits (Bjarnason-Wehrens et al., 2007). Parental assessment of their child's condition has been related to parenting practices, such as protectiveness, over-indulgence, or setting mismatched limits, because parents eith er over-estimated or under-estimated the fragility of the child's condition (Uzark & Jones, 2003).
Social support is the interaction between people that protects and enables people in crisis, and arises from family, peers, and the community (Cobb, 1976). Many parents of children with chronic illness found dealing with health care professionals difficult, and they believed that they alone bore the responsibility of advocating for their children (Thorne et al., 1997). Other parents with chronically ill children frequently reported that while there is a mix of supportive and non-supportive health professionals, the broader institutional processes in the health care system did not support them (Ray, 2002). There is evidence that dealing with the health care system is a source of difficulty for parents with HLHS, and that support is minimal once families return home from hospital (Rempel & Harrison, 2007).
Support from extended family and friends tended to vary, either due to geographical location, or as the parents put it, the inability of those outside the nuclear family to understand what they were dealing with, such that they were viewed as paranoid or overly vigilant (Ray, 2002; Whyte, Baggaley, & Rutter, 1997). Parents of children with HLHS became experts of their child's care but acknowledged that they could not manage the care and monitoring on their own and turned to their own parents first for assistance (Rempel & Harrison, 2007; Rempel, Rogers, Ravindran, & Magill-Evans, 2012). Parents need to feel confident that resources are available to them, especially as there can be a significant financial burden for these parents (Claxon-McKinney, 2001; Rempel, 2004). Some parents reported positive support that led to resiliency, and that effectively managing their child's care through the support of others gave them confidence (Brosig et al., 2007b).
Mastery of complex care is evident in patients and families who develop high degrees of trust in their own competence and are then able to identify their own requirements of the health care system (Thorne & Robinson, 1989). The technical aspects of the child's care can be daunting, but parents master complex care and become experts in their child's care (Ray, 2002; Rempel & Harrison, 2007). To cope, parents need to be creative and adaptive, but sometimes, this is in conflict with health care provider plans for treatment. Parents of children with HLHS report their ambivalence at having to relinquish care of their child to health care professionals when their child undergoes repeated surgeries (Rempel et al., 2012). Ironically, when parents are on their own at home providing "surveillance" of their child's health status, health care providers are less accessible (Rempel et al., 2012).
The implications for parenting children with HLHS given its lifethreatening nature and uncertain trajectory warranted further exploration. The focus was on vigilant parental action in relation to parental health and well being, overall family developmental health, and parent-professional relations.
Background
Based on a review of classic pediatric chronic illness literature, uncertainty, protectiveness, support, and mastery of complex care were identified as key concepts that may influence parental response to complex care requirements for their child with HLHS (see Figure 1).
(Enlarge Image)
Figure 1.
Parental Response to Caring for a Child with Complex Care Needs
Uncertainty
Mishel (1988) described uncertainty as a state where a person is unable to categorize an event or to predict an outcome. She noted that parents used vigilance to cope with uncertainty, but this created a negative impact on family function due to the constant need to watch the child. The diagnosis of HLHS is profoundly distressing, and parents experience feelings of marked uncertainty (Claxon-McKinney, 2001). In the short term, the child is at risk for inter-stage mortality (Dobrolet et al., 2011; Ghanayem et al., 2003) and long-term outcomes any more specific than "survival" are uncertain (Atallah et al., 2008; Brosig Soto et al., 2011). Children with HLHS were found to have lower IQ scores and some attention and behavioral problems (Brosig, Mussatto, Kuhn, & Tweddell, 2007a. Maternal worry contributed to the risk of negative neuropsychological and behavioural outcomes in survivors of CHD (McCusker et al., 2007).
Protectiveness
Several studies found that parents of children with CHD, including HLHS, engaged in high levels of vigilant parental action (Brosig et al., 2007b; Uzark & Jones, 2003). In a classic study, Green and Solnit (1964) argued that life-threatening incidents continue to affect mothers because fears of death persist and lead to the parental perception of the child as vulnerable. Protectiveness was reported as the excessive regulation of the child's activity and socialization by the parents in another classic study (Linde, Rasof, Dunn, & Rabb, 1966). A more recent study suggested that parental protection may hinder the child's motor development because children need to have physical activity and social interaction in order to limit potential motor deficits (Bjarnason-Wehrens et al., 2007). Parental assessment of their child's condition has been related to parenting practices, such as protectiveness, over-indulgence, or setting mismatched limits, because parents eith er over-estimated or under-estimated the fragility of the child's condition (Uzark & Jones, 2003).
Support
Social support is the interaction between people that protects and enables people in crisis, and arises from family, peers, and the community (Cobb, 1976). Many parents of children with chronic illness found dealing with health care professionals difficult, and they believed that they alone bore the responsibility of advocating for their children (Thorne et al., 1997). Other parents with chronically ill children frequently reported that while there is a mix of supportive and non-supportive health professionals, the broader institutional processes in the health care system did not support them (Ray, 2002). There is evidence that dealing with the health care system is a source of difficulty for parents with HLHS, and that support is minimal once families return home from hospital (Rempel & Harrison, 2007).
Support from extended family and friends tended to vary, either due to geographical location, or as the parents put it, the inability of those outside the nuclear family to understand what they were dealing with, such that they were viewed as paranoid or overly vigilant (Ray, 2002; Whyte, Baggaley, & Rutter, 1997). Parents of children with HLHS became experts of their child's care but acknowledged that they could not manage the care and monitoring on their own and turned to their own parents first for assistance (Rempel & Harrison, 2007; Rempel, Rogers, Ravindran, & Magill-Evans, 2012). Parents need to feel confident that resources are available to them, especially as there can be a significant financial burden for these parents (Claxon-McKinney, 2001; Rempel, 2004). Some parents reported positive support that led to resiliency, and that effectively managing their child's care through the support of others gave them confidence (Brosig et al., 2007b).
Mastery of Complex Care
Mastery of complex care is evident in patients and families who develop high degrees of trust in their own competence and are then able to identify their own requirements of the health care system (Thorne & Robinson, 1989). The technical aspects of the child's care can be daunting, but parents master complex care and become experts in their child's care (Ray, 2002; Rempel & Harrison, 2007). To cope, parents need to be creative and adaptive, but sometimes, this is in conflict with health care provider plans for treatment. Parents of children with HLHS report their ambivalence at having to relinquish care of their child to health care professionals when their child undergoes repeated surgeries (Rempel et al., 2012). Ironically, when parents are on their own at home providing "surveillance" of their child's health status, health care providers are less accessible (Rempel et al., 2012).
The implications for parenting children with HLHS given its lifethreatening nature and uncertain trajectory warranted further exploration. The focus was on vigilant parental action in relation to parental health and well being, overall family developmental health, and parent-professional relations.
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