This is one of the first published studies to assess the family impact of rotavirus gastroenteritis. The research adds to the literature by demonstrating that children affected by rotavirus gastroenteritis are part of families that can be substantially impacted by the illness of a child. The illness results in subsequent disruption to family routine, parental work schedule, and the parents' sense of control. The qualitative research technique of using focus group or individual interviews was intended to provide richer context to the often cited clinical and population level impact of this disease. By design, qualitative health studies are often much smaller than quantitative studies, since they seek in-depth narratives from subjects using their own words to describe disease related factors of importance to them.
Our data suggest that rotavirus gastroenteritis has significant impact on the physical and emotional well-being of the child but also the parent. Many parents expressed fear over the possibility the child might suffer medically significant dehydration, distress regarding the child's discomfort and their inability to rapidly relieve the child, and frustration over problems with administering ORS as well as the disruptive effects of this illness on parental sleep, work, and household routines.
An opinion expressed by some parents that the risk of rotavirus infection is relatively low and has only slight economic impact stands in contrast to the literature and points to the need for better education about this disease. In fact, the cumulative risk of rotavirus infection is nearly 100% by the time children reach 5 years of age [3
], and children treated in the ER, who were given IV fluids and blood tests to check electrolytes, and perhaps other procedures, certainly incurred substantial medical costs. However, the qualitative interviews in this study assessed only parental perceptions of relatively minor out of pocket expenditures (e.g., the cost of purchasing extra diapers or ORS) and did not consider other documented costs from the payer perspective.
Although the study was designed primarily to elicit qualitative data, the observation that 63% of stool samples collected in our study during the winter/spring of 2004 were rotavirus-positive complements other quantitative studies showing that this viral infection is an important reason for visits by young children in the U.S. to outpatient clinics or admission to hospitals [13
]. Our results also accord well with a large hospital-based study showing that rotavirus gastroenteritis is more severe than gastroenteritis caused by other enteric pathogens [15
The study was also useful as a preliminary test of a questionnaire probing parents' perspectives regarding the importance of various factors involved in caring for a child with rotavirus gastroenteritis. The rank order and numeric scores parents assigned to items on that questionnaire closely reflected the concerns expressed in the focus group and individual interviews, with factors of major importance including parental feelings of fear regarding the severity of the child's illness, concern for the child's suffering and behavioral changes, sleep disruptions and the extra work involved in attending to and trying to keep the child effectively hydrated. This preliminary assessment will be useful in refining the questionnaire for application in future rotavirus burden of illness studies involving larger samples of parents and primary caregivers.
As in every study, there were limitations to our findings. Although 62 subjects were enrolled in the health care setting, stool samples for rotavirus testing could not be obtained for 19 (31%) of the children, and only 17 parents of the 27 rotavirus-positive children ultimately participated in the focus group or in-depth interviews. We attribute the latter difficulty to the problem of scheduling multiple parents to meet at a mutually convenient location, and the likelihood that once a child recovers the parent may be less inclined to continue discussion of the illness. Nevertheless, we obtained a rich qualitative dataset that provides a previously unavailable perspective on rotavirus gastroenteritis. Those parents who participated in the interviews spanned a broad socioeconomic spectrum and so provided a good range of the perspectives of parents who may have to deal with this common childhood illness.
Although this study enrolled a diverse patient population (Table ), our study was conducted only in the United States. Given the substantial international burden of rotavirus disease in other developed and lesser developed countries [4
], further research would be helpful to understand the global impact of rotavirus disease on families. In particular, there are substantially different types of medical care systems and patient access to medical care in international settings that could result in family impact from rotavirus disease that differs from the results reported here. Given the lack of other available data, the research methods utilized in this study could be used to provide additional family impact data from other geographic and cultural settings.
Two rotavirus vaccines are now licensed for pediatric use in the US. The first of these was the pentavalent reassortant rotavirus vaccine, RotaTeq™ [16
], from Merck & Co., Inc. and was licensed in February 2006. The public health impact of the introduction of RotaTeq™ in the US was recently documented by a substantially delayed onset and diminished magnitude of rotavirus activity in the 2007–08 season compared with previous years [17
]. The second licensed vaccine is the monovalent vaccine licensed in April 2008 (Rotarix™, GlaxoSmithKline Biologicals, Inc.).
Despite the availability of rotavirus vaccines that can effectively prevent severe rotavirus disease, this study highlights that more education about rotavirus disease and vaccination is needed for parents and their health care providers. A study conducted in the US by the US Centers for Disease Control suggested that a general lack of parental familiarity with rotavirus disease, its potentially serious consequences, and the need for preventative vaccination may be a barrier to the acceptance of the new vaccines [18
]. Similar results were found in a study conducted among providers in several international settings [19
]. Both studies highlighted the need for better dissemination of information about rotavirus disease in order to prioritize the disease and to highlight the benefits of vaccination.
Since parents or providers may not know the etiology of the severe diarrhea that is being caused by rotavirus, further education on the management of children with rotavirus infection is important. The management of diarrhea has typically focused on the use of oral rehydration therapy (ORT), which is recommended for all age groups and for diarrhea of any etiology [6
]. All families should be encouraged to have a supply of ORS in the home at all times and to start therapy with a commercially available ORS product as soon as diarrhea begins. However, the severe vomiting that is characteristic of rotavirus disease often makes the successful administration of ORT difficult [19
]. Therefore it is important that providers educate parents how to recognize signs of illness or treatment failure that necessitate medical intervention [6