Parental vigilance in caring for their children with hypoplastic left heart syndrome.
Until recently, death between the first two surgeries, referred to as interstage mortality, was as high as 15% (Furck et al., 2010; Ghanayem et al., 2003). The institution of home surveillance programs has significantly decreased this mortality (Dobrolet et al., 2011; Furck et al., 2010). "Parenting monitoring" rather than home surveillance is a more accurate descriptor of this intervention because the parents, both mothers and fathers, administer the home surveillance program through daily weighing of the baby, measuring the baby's oxygen saturations, and monitoring nutritional progress (Hehir, Cooper, Walters, & Ghanayem, 2011). More importantly, parents must learn how to evaluate this information and seek the appropriate level of help at the appropriate time that includes calling an ambulance to provide emergency care for the baby (Hawkins, 2006; Rempel & Harrison, 2007; Rempel, Ravindran, Rogers, & Magill-Evans, 2013).
The need for intensive monitoring and caregiving at home for children with HLHS means that parents face many challenges, and this often leads to parenting stress, uncertainty, protectiveness, as well as attempts at normalcy (Rempel & Harrison, 2007; Rempel, Harrison, & Williamson, 2009; Sarajuur, Lonnqvist, Schmitt, Almqvist, & Jokinen, 2012; Spijkerboer et al., 2007). Even in a cohort of mothers whose children with CHD were not affected by HLHS, there was evidence of exaggerated levels of vigilance in response to their child's health status, which included actions, such as never leaving the child at night (Carey, Nicholson, & Fox, 2002). Parental anxiety, uncertainty, and vigilance are not unique to parents of children with HLHS. Research with parents of chronically ill children over almost two decades provides evidence of similar parental responses (Hayes, 1997; Iversen, Graue, & Clare, 2009; Ray, 2002; Thorne, Radford, & Armstrong, 1997). The long-term implications of parental vigilance are not well understood.
The purpose of this exploratory study was to address the following research question: Is the parenting process among parents of children with HLHS characterized by exaggerated vigilant parental action, and if so, how does this influence parental response? The intent was to differentiate the varying intensities of vigilant parental action. In this study, vigilance was defined as the parental actions taken to assess and skillfully care for their child that included close monitoring and was distinct from hypervigilance. Although hypervigilance is a diagnostic term and one of a cluster of symptoms (e.g., difficulty sleeping, irritability, difficulty concentrating) related to stress disorders (American Psychiatric Association [APA], 2013), vigilance has been described as a coping mechanism that parents use to decrease uncertainty (Mishel, 1988). If, however, vigilant parental action is exaggerated, that is, actions that are beyond what is considered normal (Merriam-Webster, 2011), this can affect parental function and potentially the interaction between parents and health care providers (Carey et al, 2002).
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).
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 either 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
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 life-threatening 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.
This secondary data analysis project was undertaken within a program of pediatric cardiology research focused on explicating a theory of parenting children with life-threatening CHD. Data were used from two original grounded theory studies conducted to determine the processes involved in parenting young children with HLHS (Rempel & Harrison, 2007; Rempel et al., 2013). In these two studies, parental vigilance emerged though inductive data analysis. In this secondary analysis project, directed secondary thematic content analysis was used to delve further into the original theme of parent vigilance (Hsieh & Shannon, 2005). This secondary analysis explored whether the processes of parenting a child with HLHS were characterized by exaggerated vigilant parental action, and if so, how did this influence parental responses? Deductive analysis was employed to refine existing concepts and explore new concepts that may have been under-explored in the original grounded theory analysis (Gilgun, 2005).
The data source included 55 interviews from 41 parents from two previously conducted grounded theory studies with parents of children with HLHS treated with the Norwood surgical approach (Rempel & Harrison, 2007) or the Sano surgical approach (Rempel et al., 2013). The sample included English-speaking mothers and fathers who gave informed consent to participate in the studies. Parents of children with both antenatal and postnatal HLHS diagnoses were included, and parent participants were from both rural and urban areas of Western Canada. The children's ages ranged from 2 to 60 months at the time of the parent interview (see Table 1). A semi-structured interview guide was used to invite participants to speak of their individual experiences of parenting a child with HLHS. Each interview started with the interviewer asking the parents to think back to when they first found out that there might be a problem with their baby's heart and to describe what that time was like for them. The interviewer invited parents to recount the events surrounding the diagnosis and immediate and ongoing treatment of their child and to reflect on their parenting experiences. The concluding question invited them to reflect on the most rewarding and the most challenging aspects of parenting their child with HLHS. The telephone or in-person interviews lasted from one to two hours, were digitally recorded, and transcribed verbatim. Both original studies were approved through the Health Research Ethics Board (HREB). Parents had given consent for secondary analysis of the data they provided and ethics approval for the secondary analysis was also obtained from HREB.
The original grounded theory studies involved simultaneous data collection and analysis, and constant comparative analysis to delineate processes of parenting young children with HLHS. All interview data and data analysis were entered into NVivo 7 (QSR International Pty Ltd., 2007), and the interviews in their entirety as well as nodes of coded data were available for this secondary analysis. For this secondary analysis, each interview was read in its entirety to gain an overall impression of the data. Interviews of parents whose children underwent different initial surgical approaches were compared to gain an understanding of any similarities or differences in parents' responses to the complex care requirements of their child.
Based on the literature review and clinical experiences of the first two authors, data were then selectively coded based on the sensitizing concepts of uncertainty, protectiveness, formal support, informal support, mastery of complex care, exaggerated vigilance, hyper-vigilance, and traumatic events described by the parents (Charmaz, 2006; Glaser, 1978, 1992). These new categories included codes and their data from the original studies (see Table 2). Overlapping of categories was inevitable because the sensitizing concepts were not mutually exclusive. Starting with these interrelated concepts, an in-depth analysis was conducted to discover how parents interpreted their experiences, how their experiences influenced their parenting roles and behaviors, whether there was evidence of exaggerated vigilant parental action, and if so, what were the consequences.
Rigor. The similarity of the research questions between the original studies and this secondary analysis related to parenting processes contributed to the rigor of this study (Thorne, 1998). The original studies were aimed at explicating parenting processes for those affected by HLHS, and this secondary analysis project further expanded on sub-categories of the original studies, with a focus on parental vigilance. The secondary analysis enabled in-depth exploration of selected themes from the original grounded theory studies. The triangulation of data using both an inductive and deductive process increased trustworthiness (Knafl & Breitmayer, 1986). Although the a priori review of the literature did not drive the findings, the sensitizing concepts were used to focus the deductive analysis, and the data themselves drove the findings (Thorne, 1998). The first and last author conducted the secondary data analysis. Active involvement of the last author, who was familiar with the original data sets, in data analysis, contributed to the credibility of the study (Thome, 1994, 1998). Maintaining the perspective of the author who had conducted the original grounded theory studies was important to ensure that the analysis did not extend beyond the scope of the original research (Thorne, 1994). The other authors brought extensive family and mental health research experience with other populations, thus helping to monitor potential bias from those more familiar with the data and clinical population.
The study data were from two surgically distinct groups of parents: those whose children underwent the Norwood and those whose children underwent the Sano (Atallah et al., 2008). Whether parents' perspectives varied between the two cohorts based on different survival rates was unknown. Analysis of the data, however, did not indicate notable differences in the parental responses between the two groups; thus, the two groups were considered one cohort.
Through the analysis of the 55 interviews, it was clear that the pa rental response to caring for a child with HLHS was characterized by both vigilant and exaggerated vigilant parental actions. Health professionals taught parents to vigilantly attend to their baby's complex care requirements, which involved skills, such as feeding, weighing, administering medications and oxygen; monitoring all aspects of the baby's health; and taking action based on subtle changes. There was evidence that vigilant parental actions were exaggerated at times, with parents focusing on the child's care and monitoring at the expense of other aspects of their life.
Analysis of the data using the four sensitizing concepts of uncertainty, support (formal and informal), protectiveness, and mastery of complex care effectively illuminated key aspects of vigilant and exaggerated vigilant parental actions that characterized the context of and parental response to caring for a child with HLHS. A key dichotomy was evident in parents' accounts - the notion of events and circumstances either being "out of our hands" or "in our hands" (see Figure 2). This self-understanding influenced how parents set priorities as they cared for their child with complex needs.
Context: Out of Our Hands
By way of context, parents perceived the uncertainty related to their child's HLHS and support as out of their hands or beyond their control.
Uncertainty. A context of pervasive uncertainty was specifically mentioned by 46 of the 55 parents. Parents were uncertain about their child's survival throughout the course of surgical treatments. When recounting her experience of choosing the surgical palliation route, one mother noted that "the outcome is very uncertain." Uncertainty seemed unavoidable in the parents' lives, and eight of the 41 parents reported constant worry and uncertainty. The most common source of uncertainty had to do with the risk of death, particularly related to surgery. Parents made comments like "she could pass away" or "die at any time," and this uncertainty did not decrease with subsequent surgeries. As parents anticipated the surgery at two to four years of age, they experienced additional uncertainty about how their child would handle the surgery emotionally. Persistent uncertainty seemed to contribute to parents being exceedingly attentive to their child's complex care requirements and exaggerated vigilant parental actions, which at times were appropriate. As the child's condition stabilized, however, especially between the second and third surgery, exaggerated vigilant parental action was less appropriate.
Formal and informal support. The events and circumstances of the parents in this study were further contextualized by inadequate or inconsistent support that waned over time. Access to consistent support from formal sources, such as hospitals, clinics, and home care, was out of the parents' hands because the availability and skill level of professionals varied widely. Families who found accessible qualified formal support in professional caregivers were the minority. Parents felt they could not go to any clinic, regardless of how minor the medical concern. In particular, seven parents had difficulty with their local emergency room personnel who had no experience with the diagnosis of HLHS. The varying formal support from province to province was also a source of difficulty, and this seemed to be associated with exaggerated vigilant parental actions as the parents did not easily trust their child to professional caregivers when they changed care providers across provinces. Sixteen parents found that formal institutional policies were a source of difficulty. For example, one mother described not being able to arrange dental procedures for her child outside of the surgical center because the practitioners were not comfortable with her child. Another mother felt that she was at the "mercy of the system," and more than one parent looked into out-of-country surgical options when their surgical dates were postponed. Lack of consistency between caregiver practices and hospital policies contributed to parents feeling that they could not leave their child when they were in the hospital.
Parents said it was beneficial to receive support from professionals and peers, but the source and consistency of formal support was out of their hands. One father mentioned being introduced to other families and seeing other children with HLHS who had survived; this helped him decide to proceed with surgery. Support from informal sources, such as extended family and friends, was extremely helpful to the parents when it was available, but the nature and consistency of this support was also out of the parents' hands. Some found that family support waned as time went on, and friends did not understand what the family was dealing with and even avoided them. Others found that friends stopped coming around as frequently as the child got older.
Response: In Our Hands
As parents perceived that their child's ongoing survival and the nature and consistency of support were out of their hands, they focused on what was in their hands - aspects of their experience over which they perceived having some control and to which they responded. These included protecting their child from external harm, such as infection, and being vigilant in their actions to master complex care and monitor their child's health status.
Protect child. Protective behavior was most evident when parents described vigilant actions to protect their child from exposure to infection. Nine parents talked about not going anywhere with the child during the first year of life. One father said he spent the "first six months (of his child's life) in a cocoon." One mother said that she probably went to extremes by not taking the child out during the child's first year of life and by not allowing friends who were ill to come to the house: "We didn't take her anywhere...because of germs, and I never took her out like to a big crowd or to a mall - and probably to the extreme." One family cancelled Christmas in preparation for a surgery in the New Year. A mother whose child had undergone the third of three surgeries said she was "vigilant about who she plays with because of the germs."
Master complex care. The ability to master complex care was in the hands of parents and prompted vigilant parental actions. Twenty-eight parents described actions related to medication administration and feeding that were coded as vigilant parental action (14 from each group). Sixteen parents noted complexity of medication administration. One mother explained:
There [are] about three or four of them [medications] that are three times a day, and other ones that are twice a day, and then other ones that can't be given an hour after the other ones. So it was seeming like every couple of hours you're giving her a dose of some sort of medication, and so keeping track of it was just a little book.
Another mother found the medication routine difficult to establish and told the doctors it was "Too bad!" and she was not giving medications at night:
I just told the doctors I am not doing them at night. When she's sleeping, I'm not waking her up to do them, you know, sorry. They can wait till she wakes up. If you don't like that, too bad because I'm not gonna disrupt her sleeping patterns just because she needs a med at a certain time.
Feeding was the most frequently reported issue by the parents. Most of the children had a naso-gastric tube for the time between the first two to three surgeries and some had a gastric tube surgically inserted. One mother reflected on the period between the first two surgeries:
The tube feeds were the bane of my existence, well both of us. We hated them ... When he became more active, he was always pulling it out. So at six weeks, we talked to [the pediatric cardiologist] and we said, "Can we bottlefeed him every 20 minutes if we have to? Can we just stop the tube feeds during the day?" Cause he was pulling it out, and I don't want to be inserting it into this kid six times a day.
As parents gained mastery, they took more control of managing the feeding decisions. For example, one mother whose child took the tube out, told her daughter she would eat:
I said to her, "By Christmas, you're going to eat solid food." I told the tube, and I told her. I said, "We're not putting this tube down anymore." So sometime in December, I pulled the tube out for the last and said, "You're gonna eat food." And she started doing it.
Monitor child. To move through the three surgical stages, parents not only protected their child and mastered complex care, they also vigilantly monitored their child. Fifteen parents reported they were monitoring their child 24 hours around the clock. This monitoring was directly related to uncertainty.
I kept thinking, "Oh my God. He's going to puke, and he's going to swallow it, and then he's going to be sick. And I'm not going to hear him, and then going to wake up in the morning, and he's going to be dead." So we started sleeping on the couch with him.
Some parents would check on their child every few hours to see if they were still breathing. One mother said that every time she heard a noise, she ran to her child's room. A mother described teaching others to be "more vigilant when caring for her (daughter with HLHS)." No parents used the term exaggerated vigilance or hypervigilance when describing their experiences; however, some felt they were perhaps excessive in their monitoring.
Monitoring was essential when it came to medication administration in particular. A mother described the precision with which she administered the medications and would not give them a minute after they were due. "I was a fanatic about the medications, you know, that had to be at--the drops at this time and not a minute after." One father said they could not leave their child for more than eight hours if no one else could give medications. One father described how, based on his and his wife's assessment of their child, they made decisions to administer additional doses of diuretics when warranted.
Growth monitoring and weight gain were essential for all children, which increased parental concern related to feeding issues. This constant struggle to get enough volume and calories into their babies was clearly the most anxiety-provoking aspect of care for parents and led to vigilant parental actions. A mother talked about being "vigilant about measurements of intake" to ensure that her child received adequate volume.
Although it was important for parents to be skilled in the complex care of their child, these vigilant parental actions often led to excluding other caregivers because the parents did not trust just anyone to care for their child. Twelve parents felt that others did not know how to look after their child like they would. They entrusted few people with their child's care. A father explained that "the vigilance thing has to go on the whole time."
Even when the child returned to the hospital for the second and third surgery, some parents felt they had to monitor the nurses to make sure everything they had been doing at home for their child was being done in the hospital. Eleven parents described conflicts with health care providers during hospitalizations. Parents often felt like they were the experts and that nurses sometimes did not know as much as they did about their child. Eight parents said they did not trust the bedside nurses. Most said they never left the child alone during hospitalizations. As one father noted:
So now you're frustrated with that, and you want to take her home because they don't have the time to look after her like she should be. So you live with that, and you're there as much as you can, and you're there for all the feedings, and all that kind of regulates your life that way.
One mother talked about a nurse not monitoring the oxygen saturation correctly post-surgery, so she would not leave the child after that: "We come in, and she's on oxygen? I was horrified, and so there [the probe] was on the wrong toe ... So it was like okay, we won't be leaving her again." Some parents said they never relaxed, while others felt they had to be a nuisance to get things done for their child. A father said he had "a reputation for being too hyper about all of her care."
At times, it seemed parents were focused on certain aspects of their child's care to the exclusion of other things around them. Exaggerated vigilant parental action was facilitative of impressive mastery of complex care when it was contextually appropriate. Sometimes, however, it was not contextually appropriate, especially when the child's care requirements lessened. Some parents noted that in retrospect, their vigilant parental actions were likely excessive, but at the time, they felt they were doing what was best for their child. Over time, the need for the heightened level of monitoring lessened, but after periods of exaggerated vigilant parental action, it was difficult for parents to ease up. Many admitted to having periods of time when their vigilant actions and/or monitoring was more than what the situation required. A mother described her family's desire to maintain ongoing vigilance:
So every day, we wrote down his weight and his [oxygen] sats, his saturations [between first and second surgery]. Now [after second surgery], we were not told we had to do it every day, but we did it anyway, just for peace of mind for ourselves.
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).
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.
As with all secondary analysis studies, consideration must be given to methodogical limitations that may affect the credibility of findings (Heaton, 2000; Hinds, Vogel, & Clarke-Steffen, 1997; Thome, 1998). The main limitation of this study was that the new concepts and findings were not explored with participants through conducting further parent interviews with either the same or additional participants. This was due to both the limited scope of the study and respect for participant burden in these families (Heaton, 1998). However, given that this study was part of a larger evolving program of research, there is opportunity to further explore these concepts in current and ongoing research interviews with this population. Because there were no additional interviews, theoretical sampling could also not be conducted to address new concepts with additional participants (Charmaz, 2006). However, the concept of theoretical sampling was applied to this secondary analysis by using two sample cohorts (the Norwood and Sano surgical groups) (Szabo & Strang, 1997).
Another consideration is the transparency about the original study, and compatibility of the research questions in the original studies and in the secondary analysis (Heaton, 1998, 2000; Thorne, 1998). The original studies were aimed at defining processes of parenting children with complex CHD, while the secondary analysis involved a more detailed analysis of the concepts involved with parental vigilance; thus, the questions were compatible (Heaton, 2000). The first author who conducted the secondary analysis had access to all original data, transcripts, and field notes, and spoke with the last author, who conducted the original studies and provided important contextual information affecting the interpretation of the data for the secondary analysis (Heaton, 1998; Hinds et al, 1997; Szabo & Strang, 1997). In addition, the ethical review process was extensive, ensuring participant consent for secondary analysis and assurance that the original data could address the new research questions (Hinds et al., 1997; Szabo & Strang, 1997). Finally, data that were used were evident in many interviews, and thus, did not reflect incidental findings (Hinds et al., 1997).
One is always concerned about the possibility of author bias in the findings. The findings of this secondary analysis, as with the original grounded theory studies, reflect the constructivist paradigm, whereby the researcher perspective is integral to the study findings (Charmaz, 2006). Having three authors with extensive experience in conducting qualitative research, including secondary analysis of qualitative data, contributed to the rigor of the findings (Hinds et al., 1997).
Implications for Practice
Out of Our Hands
Uncertainty was a common experience for the parents in this study, and acknowledging and addressing this persistent uncertainty is a key clinical practice implication. Despite the uncertainty concerning prognosis, all of the parents involved in the study chose to proceed with surgical palliation. Although many uncertainties cannot be alleviated for parents, acknowledging their ongoing experience of uncertainty could constitute a valuable clinical intervention. Exploring parents' main sources of uncertainty may uncover questions that could be addressed through more information and/or support. Uncertainty about upcoming surgeries is inevitable, and more information and support during the pre-operative period from key care providers (e.g., nurse practitioner, child life specialist) at the surgical centre could alleviate some of their uncertainties. As research findings on immediate and long-term outcomes for children with HLHS are synthesized, parents can be realistically apprised of potential complications both in the short and long term.
With children surviving beyond historical illness trajectories, there needs to be further research identifying specific strategies to build and sustain parental confidence over time (Noyes, 2007). As directed by the home surveillance programs for children with HLHS (Rudd et al, 2014), there are critical periods when it is appropriate for parents to respond to threats to their child's survival with vigilant or exaggerated vigilant parental actions. However, most children stabilize over time, and parents may benefit from a coaching intervention to help them slowly decrease the amount of vigilant parental action over time.
The frequently occurring vigilant and exaggerated vigilant parental actions described by the parents in response to lack of trust in health providers, who are meant to be key sources of support, also need to be addressed. Educating nurses and other members of the care team both in acute care settings and home health settings about parent perspectives of managing their child's complex health condition can translate into positive changes for parents. As professional care providers become more informed of the needs of parents in relation to their child's HLHS, parents may become more confident and trusting of their professional care. Clinical practice guidelines that ensure health care providers who are meant to provide community-based care and monitoring of these children are essential (Dobrolet et al., 2011). Barriers to peer support also need to be addressed as many families are aware of sources of parental support but do not access them (Wray & Maynard, 2006).
In Our Hands
Some parents acknowledged that they were likely excessive in the extent to which they "cocooned" themselves. Feeding was the most common area that generated exaggerated vigilant parental actions, often manifested by measuring every millilitre that the child drank. The functional aspect of this behavior was that it provided parents with a focus that was within their control. Other forms of exaggerated vigilant parental action were associated with potential untoward consequences, such as when parents gave extra doses of medications when they felt their child was ill. It is critical not to dismiss parental skill because parents are obvious experts with respect to their child, and safe and effective care requires collaboration not only to avoid potential conflicts but to allow continued engagement over multiple hospital admissions. Some parents acknowledged that they were focused and occasionally "paranoid," but most felt that their behavior was warranted. There must also be collaboration with health care professionals and parents to determine when vigilant parental action is exaggerated because health care professionals cannot be the only ones determining this based on specific interactions during subsequent surgeries. The collaboration and mutual assessment must be ongoing. For example, a nurse practitioner-led clinic for follow up could provide this type of assessment and collaboration as is in place in some centers (Dobrolet et al., 2011).
Clearly, vigilant and exaggerated parental actions are present for parents of children with HLHS. The parents were caring for their children to the best of their ability with what was available to them at the time. What seemed to contribute to the exaggerated vigilant parental action was the child's complex care requirements, especially during the child's first year of life. Parents had to master skills that they did not feel anyone else could do. If formal support was more widely available, less would be required of the parents, and they would not feel solely responsible for their child's care. Further research needs to focus on the long-term consequences of exaggerated vigilance for parents, family dynamics, and the child's successful achievement of their developmental tasks and how to proactively develop strategies to limit any negative consequences.
Issues with the health care system itself contributed to exaggerated vigilant parental action but did not necessarily assist in decreasing it. Exaggerated vigilant parental action was present in the parental response, and there needs to be long-term involvement with these families from health care providers in order to prevent what could potentially be long-term consequences from enduring exaggerated vigilant parental actions.
Acknowledgement: Thanks to the University Hospital Foundation and Heart and Stroke Foundation of Canada for providing funding for the original studies. Thanks to Sandra MacPhail, project coordinator for the Sano Study; and Vinitha Ravindran, and Bonnie Wademan, Research Assistants for the Sano study.
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Leanne Meakins, MN, RN, is a Pediatric Nurse Practitioner, Stollery Children's Hospital, Edmonton, Alberta, Canada.
Lynne Ray, PhD, RN, is an Associate Professor, University of Alberta, Faculty of Nursing, Edmonton, Alberta, Canada.
Kathleen Hegadoren, PhD, RN, is a Professor, University of Alberta, Faculty of Nursing, Edmonton, Alberta, Canada.
Laura G. Rogers, MScRS, OT(C), is a Research Associate, University of Athabasca, Faculty of Health Discipline, Athabasca, Alberta, Canada.
Gwen R. Rempel, PhD, RN, is an Associate Professor, University of Athabasca, Faculty of Health Discipline, Athabasca, Alberta, Canada
Table 1. Summary Demographic Data Parent Parents Total Fathers Total Mothers Total Demographics (Norwood :Sano) (Norwood :Sano) (Norwood :Sano) n = 41 (16:25) 17 (7:10) 24 (9:15) Mean age 33.2 33.7 (36.1:32.0) 32.8 (34.4:31.9) (years) (35.2:32.0) Age range 22-50 27-50 22-48 (years) (22-50:27-38) (30-50:27-37) (22-48:27-38) Education University/ 22 (9:13) 9 (4:5) 13 (5:8) college graduate Some college/ 12 (6:6) 4 (3:1) 8 (3:5) university High school 5 (0:5) 3 (0:3) 2 (0:2) graduate Some high 2 (1:1) 1 (0:1) 1 (1:0) school Employment Working full 23 (8:15) 17 (7:10) 6 (1:5) time Working part 5 (2:3) 0 (0:0) 5 (2:3) time Full time 7 (4:3) 0 (0:0) 7 (4:3) homemaker Maternity leave 6 (2:4) 0 (0:0) 6 (2:4) Ethno-cultural All parents were born in Canada. One parent was Metis. background Family Families Total Demographics (Norwood :Sano) Family income (CAD) Less than 2 (1:1) $25,000 $26,000 to 4 (1:3) 45,000 $46,000 to 3 (1:2) 65,000 $66,000 to 7 (2:5) 85,000 Greater than 8 (4:4) $85,000 Geographical location Urban 11 (5:6) Rural 13 (4:9) Time of diagnosis Antenatally 14 (4:10) Postnatally 10 (5:5) Child Children Total Boys Total Girls Total Demographics (Norwood :Sano) (Norwood :Sano) (Norwood :Sano) n = 24 (9:15) 12 (3:9) 12 (6:6) Mean age 27.9 (35.0:23.6) 23.2 (28.0:21.6) 32.8 (39.0:26.5) (months) Age range 2-60 (2-60:6-58) 6-54 (10-54:6-42) 2-60 (2-60:6-58) (months) Surgeries completed Norwood/Sano 1 (1:0) 0 (0:0) 1 (1:0) only Norwood/Sano 15 (4:11) 9 (2:7) 6 (2:4) and Glenn Norwood/Sano, 8 (4:4) 5 (3:2) 3 (1:2) Glenn, and Fontan Table 2. Coding Structure A Uncertainty A1: Ongoing prognosis A2: Preparation for next surgery A3: Hospitalizations between surgeries A4: Anxiety, worry, fear A5: Unpredictability, ambiguity A6: Parenting role and capacity B Protectiveness: B1: Regulation of child's activity B2: Inhibition of child's socialization B3: Attempts at normalization C Formal Support: C1: Surgical centre health care providers C2: Home care providers and respite caregivers C3: Local hospital health care providers C4: Support groups (i.e., with other parents of children with CHD) C5: Policies and practices of health care institutions D Informal D1: Immediate family (spouse/partner, child's Support siblings) D2: Extended family D3: Friends D4: Community/neighbourhood/church E Mastery of E1: Feeding Complex Care: E2: Medication including anticoagulation E3: Physical assessment E4: Equipment E5: Conflict with others over care abilities F Exaggerated F1: Unable to leave child Vigilance F2: Over focused on child's care F3: Unable to break routines F4: Sleeping in same bed as child F5: Frequent physical monitoring of child G Hypervigilance G1: Symptom of increased arousal G2: Beyond exaggerated vigilance H Traumatic H1: Events that might contribute to vigilance Events becoming heightened
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|Title Annotation:||Continuing Nursing Education|
|Author:||Meakins, Leanne; Ray, Lynne; Hegadoren, Kathleen; Rogers, Laura G.; Rempel, Gwen R.|
|Date:||Jan 1, 2015|
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