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Protective Care: Mothering a Child Dependent on HPN
Lorie H. Judson, PhD, RN; California State University, Los Angeles
Higher survival rates of critically ill infants and children, and the need to contain health care cost have resulted in a greater number of children dependent on high-tech home care therapies like home parenteral nutrition (HPN). Although the child usually goes home to a family, it is the mother who often feels the impact of care. She is expected to become knowledgeable about the child’s condition, familiar with the intricacies of machinery necessary for life, effectively manage complex care, and provide an environment for this child to grow and develop. The ICU has moved to her living room, and her physical, psychological and emotional cost of caring has largely been ignored or undervalued by health care policy makers and clinicians.
The purpose of the study was to examine the process of mothering a child dependent on HPN. Nineteen mothers ranging in age from 19 to 54 years (average age was 45 years), with high school or better levels of education, from all regions of the US, participated in the study. Fifteen of the 19 mothers were married. The children dependent on HPN ages ranged from 2 to 19 years (average 10 years); they had been on HPN from 2 months to 16.5 years. Data was collected from these mothers by the use of in depth interviews that were audio-taped and later transcribed, coded and analyzed.
The overriding basic social process identified in this study, "protective care,” broadly describes the mothering experience for children dependent on HPN (See diagram). The protective care pervades all of her actions with the child, the health care system and the community at large. Although the resulting theory is categorized, the actual process is highly integrated and interdependent.
In order to provide protective care, these mothers felt the need to have control over the situation. Three phases came to the forefront upon analyzing the data; gaining control, taking control and maintaining control. Corresponding sub-categories that were most representative of all interviews were also presented in protective care diagram.
The mothers were anxious to exercise control over the life of their child. To do so, they wanted to wrest them away from the hospital, get them home and begin to make sense of the situation. The commitment to care became an expected outcome of the child’s condition and was an implicit understanding of the mothering role for the natural mothers and a conscious decision for the adoptive mothers.
There were some mothers, despite their eagerness to go home with the child, in retrospect felt shortchanged when it came to preparation and teaching before discharge. Once they arrived home their emotions ranged from being overwhelmed and fearful, to experiencing denial and feeling isolated when they actually began the care themselves. The amount and intensity of care was overwhelming. Fear, particularly of the central intravenous line providing the nutrition, was uppermost in their minds. The mothers are conscious of the fact that they are carrying out activities each day, which if performed improperly, could quickly result in their child’s demise or death.
For most mothers organization was necessary to control the chaos and begin to gain control of the situation. Perhaps not immediately, but fairly quickly they established a routine to make the care more expedient and less overwhelming.
Once the initial shock had subsided, these mothers took control of the situation. "Watching over” encompasses the intense care these children need to survive, and includes monitoring fluid balance, looking for signs of sepsis, and meticulous care of the line and its insertion site. The vigilant, sometimes hypervigilant, watching over contributed to the mother’s growing knowledge/experience base. As the mother gained experience and knowledge of the intricacies and patterns of her child’s condition and care, she might move to a more relaxed vigilance, although some of the mothers never seemed to relax their vigilant stance.
Mastering the complicated care of this child might be accomplished in a short period of time if no complications arose, the child was not progressing through developmental stages or the care stayed the same. However, typically it took a year before the mother considered herself an expert. Most often in that first year of parenteral nutrition, the central line became infected numerous times, or the child developed other complications, which required frequent long-term hospitalizations.
The knowledge base was not only accumulated from experience, but from people the mother sought out for advice through formal and informal means, such as the health care team who managed their child’s care, support groups, or the internet. Often the knowledge and/or advice was conflicting, forcing these mothers to make their own decisions regarding the care of the child.
For some of these mothers, because of the intense care they give, a conflict arose between what they would describe as the mothering vs. nursing role they play in this child’s life. Some chose to try to separate the roles while other mothers felt the roles were integrated and could be performed simultaneously.
Challenging the system refers to the techniques these mothers use when they feel it is necessary to advocate for their child. In order to provide what they envision as the best possible care for their child, mothers battle health care providers, including physicians, pharmacists and other clinicians, as well as school administrators, insurance companies and the reimbursement system in general.
The mother’s need to challenge nursing and medical care that did not meet their expectations for technique, safety or sensitivity to their child’s needs, became evident during hospitalizations over the course of the child’s care. These mothers had intervened too many times (to avert incorrect orders, medications/dosages, or careless technique) to not be wary during hospitalizations; it left them feeling that no one on staff could be trusted to care for their child unless closely supervised.
This wariness carried over to nursing care performed in their home by outside providers. The mothers describe great difficulty in finding someone who was knowledgeable and who cared about their child. Finding the right nurse who could blend in by sharing some of the same belief systems of the parents, and who could be flexible in their care, was important to them.
Similarly, in a role of "mother knows best,” mothers may be reluctant to let anyone else perform the complicated routine care they have learned and perfected over time. This included their husband and the child themselves — even when he/she became old enough to learn.
As a result of this advocacy and challenging, these mothers risked alienating medical personnel and felt, or had even been threatened with, the removal of the child from their care.
Promoting normalcy is another way these mothers cared for their children, as they desired acceptance of their children in the world at large. These efforts at normalization usually began once the mother calculated the risks of allowing some flexibility in the child’s life and accepted the uncertainty that the condition carried with it. Three key components were identified by the mothers to ensure social acceptance of these children. Behavior was the first key to acceptance, and one way they could control behavior was through discipline. The second was appearance, and the third was the ability to participate in age-related social activities. The mothers also sought to normalize feeding and eating behaviors.
The capability of eating was present in most of the children, but many of the children who were allowed and encouraged to eat, despite their dependence on HPN, at least initially, were not interested. Many of the children had developed food aversions or had unusual habits once they began to eat. Other children wanted to eat, but weren’t allowed. All of these variations presented great consternation to and required a lot of adaptation by mothers who depend on their child eating for much of their gratification in the mothering role. Mothers expressed frustration, helplessness, sadness and gratification.
For the child who didn’t eat and had no desire to eat, most mothers insisted the child come to the table and made an attempt to normalize mealtimes. The child might leave after a prayer, stay and socialize, play with the food, or taste or lick the food. For the child who wanted to eat, but was forced to abstain from eating, mealtime became very unpleasant. Food was such a temptation to that child that it seemed cruel to eat in front of them and so disrupted the whole household. To make up for food intake, some mothers had devised alternatives to food such as toys, ice or snow cones, a special outing, or extra affection.
The third phase, maintaining control, embodied the reflections, feelings and actions these mothers employed to continue the intensity of care required for these children indefinitely.
To put their life in perspective the mothers acknowledged their feelings of anger and guilt, lost opportunities (careers, time with siblings, etc.) and being tied down, and developed ways to look at the world differently. An obvious consequence of the intense watching over and the care that became never-ending, was anger and possible subsequent guilt. Anger was most often directed at the situation, rather than the child or a specific person, and took the form of crying or yelling at "anyone who happened to be standing around at the time.” Sometimes the guilty feeling was a result of what the mother may perceive as inattentive care resulting in an unfavorable event for the child, a poor decision on her part, or an inability to spend time with her other children.
Realizing these strong emotions were the result of this long-term intensive care, these mothers found a way to remove themselves from the situation at regular intervals or when feeling overwhelmed. For most it was a simple activity that only removed them from the situation for a short time, but renewed their ability to face the tasks again.
These women were proactive in building their support systems. They emphasized repeatedly the importance of support for all mothers in this situation. The church and their faith were a source of support for many of these women. Other sources of support were spouses, neighbors, co-workers, nurses and friends. In general, extended families were not perceived as being very supportive. The most common reason for this lack of support was fear that family members had regarding the child’s fragility and possible demise.
As is the case for all mothers, as their children became older, these mothers were faced with the issue of separating from a child to whom they had become strongly attached. In addition, they recognized the mortality of their child. Most of these mothers knew only too well how tenuous the lives of their children were. If they had not experienced near death encounters with their own child, they had certainly been exposed to other children dying in the hospital. Uppermost in their minds when this happened was the question, ‘Is my child next?’ Most of the mothers had the ability to move beyond the uncertainty and accept it as a way of life, using the information seeking style of questioning and vigilance to successfully manage those feelings.
Celebrating the positive was another coping mechanisms employed by these mothers. They had ‘discovered the silver lining’ or ‘blessings’ despite "all the extra care, the extra cost, the extra stress.” Many of the comments centered on the compassion the child had created among family members for other people, how the child had brought the parents closer together, or to the fact that this child had helped them determine what was most important in their lives.
Additionally they derived pride and satisfaction from the mothering experience of protecting this child from harm and keeping this child alive. These mothers derived tremendous satisfaction from keeping their child free from sepsis or line infections. Most could relate exactly how many years or months they had gone without an infection, or the exact number of lines which had been placed during their care.
In this age of increasing reliance on technology, it is important to continually reassess the impact of the means we have devised to prolong life. Policy makers need to recognize the implications of employing technology with chronically ill children as emotionally and financially costly to families who must provide the care. Case management may be needed to help individual mothers coordinate and manage the myriad of health care providers, pharmaceutical supplies, equipment vendors and home health agencies.
Clinicians need to address the common problem of inadequate training for the mothers to care for their child and inadequate preparation for the emotional strain the mothers will experience. Many of these mothers, at least initially, were unaware of other situations similar to their own and had to discover support systems independently. Specific recommendations would be to teach another family member the care of each child discharged on parenteral nutrition, not expecting the mother to be the sole source of knowledge regarding care. Another recommendation is for clinicians to provide mothers with information regarding the Oley Foundation and its networking and educational services.
Despite studies showing that most parents of chronically ill children want a partnership with health professionals, this partnership is rarely achieved. The results of the current study bear no exception. Very few of these mothers appeared to have a smooth alliance with medical professionals. (Editor’s note: The potentially serious deterioration of the parent/clinician relationship and subsequent negative repercussions to the child’s physical and emotional well being, indicate a real need for further research and better education for parents and clinicians on this topic.) The health care team needs to listen to, and when possible, incorporate into the child’s care, the mother’s experienced-based knowledge.
Finally, further research on mothering a child who is experiencing feeding problems, particularly from a wider sample of mothers that includes those who were unable to care for this technology-dependent child at home, would be helpful in determining the needs of these special mothers and how to best meet them.
Many thanks to the mothers who participated in this study and to all mothers who provide care to children dependent on HPN. Thank you also to Lorie Judson for drawing attention to this topic which deserves wider study and recognition. A copy of the full research paper is being considered for publication in the Journal of Family Nursing. Lorie can be contacted at LJudson397@aol.com.
Oley Regional Conference
5/22/2017 » 5/25/2017
Oley exhibit at National Home Infusion Association Conference, Orlando, FL