Pediatric acute gastroenteritis: understanding caregivers’ experiences and information needs

Abstract

Objectives

Pediatric acute gastroenteritis (AGE) is a common condition with high health care utilization, persistent practice variation, and substantial family burden. An initial approach to resolve these issues is to understand the patient/caregiver experience of this illness. The objective of this study was to describe caregivers’ experiences of pediatric AGE and identify their information needs, preferences, and priorities.

Methods

A qualitative, descriptive study was conducted. Caregivers of a child with AGE were recruited for this study in the pediatric emergency department (ED) at a tertiary hospital in a major urban centre. Individual interviews were conducted (n=15), and a thematic analysis of interview transcripts was completed using a hybrid inductive/deductive approach.

Results

Five major themes were identified and described: 1) caregiver management strategies; 2) reasons for going to the ED; 3) treatment and management of AGE in the ED; 4) caregivers’ information needs; and 5) additional factors influencing caregivers’ experiences and decision-making. A number of subthemes within each major theme were identified and described.

Conclusions

This qualitative descriptive study has identified caregiver information needs, preferences, and priorities regarding pediatric AGE. This study also identified inconsistencies in the treatment and management of pediatric AGE at home and in the ED that influence health care utilization and patient outcomes related to pediatric AGE.

INTRODUCTION

Pediatric acute gastroenteritis (AGE) is an acute illness characterized by vomiting and diarrhea. Pediatric AGE is a common presentation in emergency departments (EDs) and remains a leading cause of global pediatric morbidity. ^{1 – 4} In Canada, there are 5 million cases of pediatric AGE every year with an annual health care costs of 3.7 billion dollars. ⁵ It is estimated that 1 in 25 children will be hospitalized for AGE by 5 years of age. ¹ Exacerbating the substantial health system impacts is persistent practice variation in the treatment and management of pediatric AGE. ^{1 , 6 , 7} Additionally, pediatric AGE affects families in a multitude of ways, including negative impacts on physical and emotional well-being of children and parents ⁸ and frequent parental work loss. ⁹

One proposed solution towards resolving these multifaceted issues linked to current approaches to care for pediatric AGE is to explore caregivers’ perspectives of this common, acute, childhood illness. Understanding the patient/caregiver perspective may highlight misconceptions, knowledge gaps, or systemic issues contributing to the high burden of this common, acute illness. The purpose of this qualitative study was to describe caregivers’ experiences of a child with pediatric AGE and to identify their information needs, preferences, and priorities.

METHODS

Research ethics approval for this study was obtained from the University of Alberta Health Research Ethics Board. Participants were recruited at the Stollery Children’s Hospital ED, a specialized pediatric ED in a major Canadian urban centre (Edmonton, Alberta). The inclusion criteria for study participation were 1) caregiver of a child 16 years old or younger; 2) child presenting to the Stollery Children’s Hospital ED with vomiting and diarrhea; 3) caregiver fluent in English; and 4) caregiver willing to be contacted for follow-up data collection. Study exclusion criteria included 1) child with significant chronic gastrointestinal problem or inflammatory bowel disease; 2) child taking immunosuppressive therapy or known history of immunodeficiency; 3) oral or gastrointestinal surgery within the preceding 7 days; and 4) child with prior visit to ED for vomiting and diarrhea during the illness episode. Consecutive caregivers meeting the selection criteria from December 1, 2014 to January 17, 2015 during recruitment team hours (i.e., 1500–2300, 7 days a week) were approached about the study in the ED waiting room, and the project coordinator (LA) followed up with interested caregivers by telephone to schedule an interview.

Data were collected through semi-structured, qualitative interviews (Appendix A). Interviews were conducted in-person or by telephone, digitally recorded, and transcribed verbatim. This data collection strategy was used to obtain all information required, to probe participants’ responses, and to give participants’ freedom to respond and illustrate concepts in an open-ended fashion. ¹⁰ Qualitative methods do not allow prospective determination of a sample size; however, 12–15 interviews with participants were anticipated to see patterns in experiences. ¹⁰ Interview questions moved from the general to the specific with interviews later in the data collection period becoming increasingly more focused. ¹¹

Analysis was completed in NVivo 10 ¹² and was reviewed by the research team throughout the analytic process. Thematic analysis was guided by the hybrid approach of inductive and deductive coding and theme development described by Fereday & Muir-Cochrane (2006). ¹³ Data saturation is not a proxy for sample adequacy or rigour in this analytic approach; the hybrid thematic analytic approached used is underpinned by Schutz’s social phenomenology in which people are able to ascribe meaning to an experience or situation and then make judgments. ¹⁴ To ensue rigour, this hybrid thematic analysis determined logical consistency through the initial process of deductive coding of interview transcripts using the semi-structured interview guide as a framework. This step ensured transparency in the method of formulating overarching themes. ^{13 , 14} Then, smaller units of data emerged inductively and were coded for increased granularity and specificity. This step demonstrated subjective interpretation as participants’ words were used to demonstrate interpretations through quotations. ^{13 , 14}

RESULTS

Demographics

Fifteen interviews were completed. Interviews took place ranging from 3–25 days post-ED visit with the average interview occurring 12 days post-ED visit. Interviews ranged in length from 10–23 minutes with an average interview length of 15 minutes. Demographic variables for the 15 participants are presented in Table 1. Thematic analysis of the interviews revealed five major themes: 1) caregiver management strategies; 2) reason for going to the ED; 3) treatment and management of AGE in the ED; 4) caregiver information needs; and 5) additional factors influencing caregivers’ experiences and decision-making. Each of these broad themes contained a number of subthemes described below. Participant quotations supporting each theme are displayed in Table 2.

Table 1 Participant demographics

Table 2 Participant quotes to support thematic analysis

Theme 1: Caregiver management strategies

As AGE signs and symptoms emerged, caregivers reported feeling scared and worried about their child with AGE and uncertain or confused about how to proceed to help their child to be well again (see Table 2). In spite of this, they engaged in a number of management strategies prior to taking the child to the ED. These strategies included putting the child to bed, giving the child a bath, changing the child’s routine or environment (i.e., not going to school, sleeping on the couch), and spending time together while providing reassurance through words and touch. Caregivers also provided particular fluids, such as Pedialyte, milk, breast milk, juice, and water; some also provided specific foods, including ice cream and potatoes. Additionally, caregivers administered medication, including Gravol, Tylenol, and Advil (see Table 2).

Prior to going into the ED, caregivers contacted health providers with questions and for advice. These providers included provincial telephone health advice service, family physicians, pediatricians, a walk-in clinic physician, and a pharmacist (see Table 2). In some cases, caregivers contacted more than one health professional. A few caregivers also sought additional advice from health providers after the ED visit, which included following up with their regular physician and in two instances, returning to the ED.

Theme 2: Reason for going to the ED

Caregivers decided to bring their child into the ED for differing reasons. Most commonly, the caregiver felt that the child’s symptoms were not improving fast enough (see Table 2). Other reasons included worsening symptoms, previous experience with a similar illness requiring emergency care, regular physician (i.e., family doctor or pediatrician) unavailable for consult, recommendation from another health provider (i.e., telephone health advice service, walk-in clinic doctor). Additionally, one caregiver was concerned that the child’s behaviour had changed and another wanted to use the latest technology in the ED for the best diagnosis, management, and treatment.

Theme 3: Treatment and management of pediatric acute gastroenteritis in the ED

Generally, ill children in this study were treated with oral rehydration once in the ED (see Table 2). Additionally, antiemetics (i.e., ondansetron) and/or analgesics were administered to the majority of children. A few were given extra tests, including stool samples, blood tests, and urine tests. One child was administered IV rehydration. It is important to note that one child was provided with antibiotics for AGE on a follow-up visit with his or her regular physician post-ED discharge. During the ED visit, approximately half of caregivers indicated that they did not receive education about AGE, and of the participants who did receive education, two received verbal education only, and four received written information sheets that they could refer to after leaving the ED.

Theme 4: Caregiver information needs

Caregivers identified and described the following information needs about pediatric AGE: 1) how to alleviate AGE symptoms; 2) what to expect from a normal course of AGE; 3) how AGE is caused; 4) signs and symptoms of dehydration; 5) where to purchase helpful items (i.e., vomit bags, Pedialyte popsicles); and 4) what to tell their child about AGE. Caregivers expressed many questions as they reflected on and came to understand their information needs for this illness (see Table 2).

Caregivers also shared what they learned by experiencing pediatric AGE and by seeking care in the ED. They described learning about effective treatments, including over-the-counter options (i.e., Pedialyte, Pediasure, Gravol) and prescription medication (i.e., antiemetic such as ondansetron) (see Table 2). They also highlighted a better understanding of the symptoms of AGE, as well as how to recognize and deal with dehydration symptoms. There was some conflicting information learned about providing water; one caregiver learned that this was an appropriate fluid to give their child, and another reported learning that water should not be provided to children with AGE (see Table 2). One caregiver indicated that he or she had more knowledge about viruses and the seasonal nature of AGE, and another had a better understanding of non-ED health providers available to consult about AGE.

Caregivers also described how new knowledge gained from this experience would impact their future actions and decisions. This largely focused on taking action sooner (i.e., go to ED earlier, provide fluids sooner, take medication earlier); however, a few noted that they would wait longer to bring their child to the ED because they felt more able to handle less severe symptoms because of this experience (see Table 2). Two caregivers stated that they would take the same course of action in the future, and another two caregivers would review the written information sheet provided by the ED to determine future actions. One caregiver indicated he or she would rather go to the ED than see the family physician because of the severity of the child’s AGE in this instance, and another stated that he or she would rather see their pediatrician than visit the ED because of the wait time and lack of treatment for AGE during this experience. When asked what advice they had for other caregivers, recommendations included checking with a health provider if there was concern or doubt about the child’s health and to “trust your instincts” as a parent (see Table 2) when it comes to your child’s health and well-being.

Theme 5: Additional factors influencing caregivers’ experiences and decision-making

In addition, caregivers described a number of factors that influenced their experience of pediatric AGE, decision-making, and actions. This included relevant past experiences, such as previously having a child with AGE, dissatisfaction with prior visits to the ED, and dissatisfaction with prior experiences of using the provincial telephone health advice service (see Table 2). Additional stressors at the time that their child was sick included multiple sick family members in the home at the same time; repeated illnesses with the same child; and the regular physician (i.e., family doctor, pediatrician) being unavailable for appointments (see Table 2). Other caregiver burdens included being the primary caregiver for the sick child and for multiple children.

DISCUSSION

The findings of this study show that caregivers employ a number of management strategies at home before seeking emergency care for pediatric AGE; however, these may be informed by popular cultural misconceptions that are not supported by best research evidence. Similarly, this study highlights inconsistencies in ED care, adding further evidence to previous research on practice variation in pediatric AGE. ^{6 , 7} This study demonstrates that caregivers want to know basic information about pediatric AGE (e.g., What does AGE normally look like? What can I do to help my child get better? What causes AGE? What should I tell my child?). However, it is clear that reasons for bringing a child to the ED and other health decisions are heavily influenced by factors reflecting “real-life” complexity, making it impossible to use one single approach to meet the needs of all caregivers and families dealing with pediatric AGE.

In this study, caregiver at home management of pediatric AGE was underpinned by common misconceptions. Caregivers reported providing their children with juice (i.e., orange juice, lemonade), milk, and ice cream, typically because it was a favourite food and they were trying to encourage their child to eat or drink. However, previous research has demonstrated that high sugar foods and fluids (e.g., juice, ice cream) may exacerbate AGE symptoms and should be avoided. ¹⁵ There was also some misunderstanding regarding the role of water to combat dehydration. Oral rehydration solutions containing water and electrolytes are preferable to water alone and high sugar fluids that were provided by some caregivers in this study; however, the main consideration in determining appropriate foods and fluids to administer at home or whether to seek medical attention is the extent of dehydration. In cases of minimal or no dehydration, a regular diet and adequate fluids are sufficient, but these recommendations change as the severity of dehydration increases. ¹⁶ Lack of understanding of appropriate fluids aligns with AGE research dating back up to 20 years. ^{17 , 18} This complexity supports the need to provide specific information about what to do at home and when to seek health care to reduce non-urgent ED visits, improve patient outcomes, and reduce caregiver burden.

Inconsistencies in approaches to care were also present in ED treatment and management of pediatric AGE in this study. Approximately half of the participants (n=7) indicated they did not receive education from a health care provider while in the ED. At present, it is standard practice to provide health education to parents seeking care for their children in EDs ¹⁹ ; relevant information should be provided to all patients/caregivers, even in cases of common, short-duration illnesses like AGE. Previous research has established that spoken medical advice is accurately remembered only 14% of the time ^{20 – 22} ; whereas, written information is better remembered and leads to improved treatment adherence. ^{20 , 23} With no formal, written information provided to the majority of participants in this study (n=11), the burden is put upon caregivers to accurately remember discharge/care instructions and effectively manage their child’s present and future AGE episodes.

Additionally, one health provider provided antibiotics to a child with AGE during a follow-up visit after the ED visit. Evidence has demonstrated that antibiotics are largely ineffective for AGE, because 75% to 90% of cases are viral²⁴; however, in another study, 24% of pediatric emergency care and urgent care visits for AGE resulted in antibiotic prescriptions.²⁵ This research-practice gap is consistent with qualitative evidence highlighting pressure felt by physicians to provide antibiotics for pediatric acute infections (i.e., sore throat), even when it is known that this treatment is ineffective and inconsistent with best research evidence²⁶ due to fear of endangering the doctor-patient relationship and a lack of understanding of patient expectations of care.²⁶

Based on the findings of this study, it is clear that past experiences and current life circumstances affect caregiver health decision-making. For example, if caregivers are unable to consult with their regular physician, they may feel compelled to go to the ED even if they could manage their child’s AGE at home. Alternately, parents with previous negative experiences with a health service (i.e., telephone health advice service or previous ED visit) may wait longer to seek care. These nuances make it difficult to determine a “one-size-fits-all” solution for patient/caregiver information provision. Understanding patients’/caregivers’ experiences and connecting families to research evidence have the power to alleviate feelings of fear and uncertainty, ⁹ ensure consistent management of child health over time and across settings, ¹⁹ increase effective health decision-making,²⁷ and reduce health system costs.²⁷ Future research should examine the best opportunities (i.e., timing, location, mode of delivery) to provide caregivers with evidence-based information on AGE.

Caution should be used when generalizing the results of this study to other regions, populations, and child health conditions. Study participants were recruited in the ED of a tertiary care facility in an urban area in a developed country; thus findings cannot be extrapolated to caregivers that manage AGE at home without seeking emergency care, or caregivers in other types of care centres or geographic regions. Additionally, this study does not reflect the health provider perspective on the illness trajectory, the treatment and management of AGE in the ED, and patient information provision.

CONCLUSIONS

This study provides important information around caregivers’ experiences of pediatric AGE. Qualitative approaches illuminated five major themes, including 1) caregiver management strategies; 2) reason for going to the ED; 3) treatment and management of AGE in the ED; 4) caregiver information needs; and 5) additional factors influencing caregivers’ experiences and decision-making. Providing timely, appropriate, and engaging research-based information to caregivers about AGE may enhance their ability to communicate with health providers about their questions, concerns, and expectations for care and may also create the necessary conditions for health providers to align treatment and management with best research evidence. The challenge is to provide consistent information to caregivers that accounts for variation in the clinical presentation of AGE, potential complications of AGE and dehydration, and the experiences and needs of a diverse population of caregivers of children with AGE.