In her article on families' efforts to construct a normal life in the context of a member's chronic condition, Robinson (1993)
concluded that “normalization is a carefully constructed story that gives meaning and guides behavior” (p. 26). The current analysis contributes to a more specific delineation of the meanings parents attribute to a family life that is characterized by the presence or absence of normalization. In undertaking this analysis, it was anticipated that the process, meaning, and outcome aspects of normalization would be differentiated more precisely. However, we found how closely these three are intertwined. Parents' descriptions of management strategies were interwoven with their comments on what these strategies signified (e.g., evidence of competent parenting, successful adaptation). Two distinct patterns of meaning were identified that parents attributed to their ability or inability to normalize family life.
For parents in the NP group, normalization was seen as a notable accomplishment and evidence of successful adaptation. They identified normalization as a family strength, one that contributed to the overall functioning of the family and individual family members. For these parents, normalization signified that their family was doing a good job of adapting to the child's chronic condition. The theme of doing a good job was reflected in parents' statements about how the family incorporated condition management into ongoing family life and their descriptions of themselves as parents. These parents also linked normalization to positive individual and family outcomes. Normalization was a source of pride in the present and motivation for the future.
On the other hand, for parents in the NA group, the absence of normalization signified that their lives were different from and more difficult than those of other families. Because of the effort required to carry out the treatment regimen and other challenges associated with the child's condition, these parents believed they had no choice but to focus family life on condition management. As a result, family life was viewed as more difficult than that of other families. Moreover, they described how the added work and disruptive nature of managing the condition made family life and the lives of individual family members less satisfying. For these parents, the absence of normalization also signified their inadequacies as parents. They did not identify positive outcomes resulting from having a child with a chronic condition.
Past research on normalization has identified how families come to define life in the context of childhood chronic illness as normal and the behavioral strategies they use for managing the condition without making it the focus of family life. This emphasis is reflected in the most recent concept analysis by Deatrick et al. (1999)
, who identified the defining attributes of normalization, but also pointed to the need for more research on its antecedents and consequences. Robinson (1993)
revealed the process by which families initiate and enact a story of “life as normal.” Although less emphasized in her work, she also described hope as an outcome of normalization that “enables persons and families to carry forward through adversity” (p. 23). The current analysis points to the interplay of strategies parents use to manage childhood chronic conditions, the meanings they attribute to those efforts, and their overall assessment of the consequences of the presence or absence of normalization for family life.
For the most part, the literature on normalization is predicated on the assumption that it is a positive family response to having a child with a chronic condition (Deatrick et al., 1999
; Dochterman, & Bulechek, 2004
; McDougal, 2002
). The meanings parents attributed to normalization in our study further specify the positive elements of this response and clarify the ways in which it is a family strength. Normalization may be an important mediator of illness-related stressors (e.g., treatment demands, uncertainty) on family outcomes, and this is a promising direction for future research. In addition, parents' reflections on the link between normalization and parental competence points to the importance of looking at the relationship between normalization and child outcomes, something not possible in this secondary analysis, because data on child functioning were not collected in the larger study.
Also of interest is the reference group parents use to assess the quality of their management efforts. In the current analysis, parents spontaneously compared their family life to that of families without children with chronic conditions. For parents in the NP group, the comparison was positive and provided evidence of successful condition management and parenting. In contrast, for parents in the NA group, comparing themselves to families without an ill child served to highlight the unusually difficult aspects of their family life and contributed to their sense of inadequacy as parents. As such, parents in the NA group stood in sharp contrast to those in Rehm and Bradley's (2005)
studies of families with a technology-dependent, medically fragile, and developmentally delayed child. They found that these families viewed their family circumstances as very different from those of most families and relinquished the goal of normalization. These parents focused their efforts on creating a good life for their family despite their unique situation. Unlike the parents in the NA group who attributed negative outcomes to their inability to normalize, parents in Rehm and Bradley's sample saw their ability to create a good, though not normal, life.
The current results were different also from those of Morse et al. (2000)
, who studied mothers of children who were technology-dependent. Parents in the Morse et al. study talked about moving between the world of the normal and the world of the disabled; whereas parents in the current sample spontaneously compared their family life to that of families without children with chronic conditions. It is likely that the differences in the current findings and those from previous research are a function of very different samples in terms of the severity of the child's impairment. None of the children in this study were technology-dependent or developmentally delayed and, although some had life-shortening conditions, most parents viewed their child's health as good at the time of the interview. More research is needed on the relationship between the identified reference group and parents' normalization efforts. Although Robinson (1993)
found that parents deliberately adopted a normalcy lens for guiding their response to their child's condition, little is known about the consequences of relinquishing a normalcy lens for child and family functioning, and this is another promising area for future research.
Although acknowledging how closely linked the process, meaning, and outcome dimensions of normalization are, it also is important for investigators to clarify their particular area of interest and tailor data collection strategies to elicit appropriate information. For example, studies of the links between management strategies and the consequences for family life would be strengthened by the addition of interview questions and probes that go beyond management behaviors to include parents' perceptions of the consequences of their management strategies for family life. Currently, there is no structured measure of normalization, and the recognition of process, meaning, and outcome as distinct aspects of this concept as well as the insights this analysis provides on the meanings parents attribute to normalization should inform future instrumentation studies.
Although it is difficult to know why some families achieve normalization and others do not, there was evidence from this analysis that parents' ability to adapt the treatment regimen to the family's usual routine and to redefine normalcy as inclusive of condition management were pivotal components of normalization. Future researchers should focus on developing and testing interventions to help parents master the treatment regimen and fit it into their everyday life. Another likely direction for future studies would be to examine how normalization changes and may need to be supported differently over time as the child matures and the family's situation changes.
Useful insights were provided into how health care providers can support families' normalization efforts and the importance of doing so. Recognizing the importance and positive outcomes that parents attributed to successful normalization efforts, health care providers can work with them to incorporate effective condition management into ongoing family life, including adapting treatment regimens to the family's particular circumstances. The Nursing Intervention Classification System (Dochterman & Bulechek, 2004
) includes normalization promotion as an intervention and lists a number of specific strategies to help families reach this goal, including “provide opportunities for child to have normal childhood experiences” and “assist family in altering prescribed therapeutic regimen to fit normal schedule when appropriate” (p. 517). To set the stage for discussing strategies to support normalization, it also would be important to assess parents' perceptions of what normalization would entail for their family and the extent to which it is viewed as a desirable, achievable goal. Providers also could use their assessment of the family's situation and goals to determine whether the proposed treatment regimen may need to be modified to support family goals. Health care providers can play an important role helping parents determine when condition management is the appropriate focus of family life and reassure them that a temporary need to focus on condition management is normal and does not signify that normalization will never be possible again.
Providers can play an especially pivotal role in working with parents who believe that adherence to the treatment regimen means that family life and parenting, of necessity, revolve around condition management. Although some parents in our study identified negative consequences of their singular focus on condition management, they perceived this as their only alternative. Parents in the NA group discussed failed normalization efforts related to such things as last-minute cancellations of family outings and time-consuming treatment regimens that left little time for other activities. These parents' intermittent, unsuccessful normalization efforts had convinced them that normalization was impossible for their family, and they would have benefited from guidance and support from health care professionals. Parents in the NA group rarely spoke of efforts to adapt the treatment regimen to the family routine, nor did they recognize that normalization of family life will invariably wax and wane over the course of the child's illness. Having not achieved normalization, they gave up. For parents such as these, health care providers could acknowledge the difficulty of their situation and work with the family to identify strategies and resources that would make condition management less difficult. In particular, parents such as those in the NA group may benefit from being put in contact with parents who have been able to create a normalized family life. Other parents are in an especially good position to acknowledge the effort that goes into normalization as well as the benefits. They also can share tricks of the trade for managing the condition and provide encouragement and perspective when setbacks occur (Gallo & Knafl, 1998