Objective: Pediatric inpatients may be at risk for inadequate pain management if they are unable to communicate effectively because of age, physical or cognitive impairment, or medical procedures. We conducted a point prevalence study to estimate the proportion of inpatients at a children’s hospital who have difficulty communicating to hospital staff.
Methods: We obtained nurse reports of ability to communicate for all inpatients aged ≥12 months in a pediatric hospital. Demographic information was obtained from the medical record.
Results: Questionnaires were completed for 254 inpatients. Forty percent of inpatients had some difficulty communicating, and 69% had experienced pain during the hospitalization. Patient ability to communicate was not related to experiencing pain (χ2 test, P = .30) or effectiveness of pain management (χ2 test, P = .80) but was associated with difficulty communicating about pain and nurses needing help from the caretaker to communicate with the patient (χ2 tests, Ps < .001).
Conclusions: A substantial proportion of inpatients aged ≥12 months at a large children’s hospital had difficulties communicating effectively and experienced pain during hospitalization. These communication difficulties were not associated with nurse reports of the effectiveness of pain management. However, patients who had difficulties communicating in general were also more likely to have difficulty communicating about pain specifically, and nurses were more likely to need help from the caregiver to understand these patients. Future directions include identifying which conditions, procedures, and medications are associated with inability to communicate.
- communication disorders
- nonverbal communication
- communication barriers
- intellectual disability
- pain management
- hospitalized child
- pediatric hospitals
Hospitalized children often experience pain that is not adequately assessed or treated.1,2 Because there are no objective tests to measure pain,3 the gold standard method of pain assessment is patient self-report.4 Although there are alternative methods for assessing pain for children who are unable to self-report,5 pediatric patients who are unable to communicate effectively for a variety of reasons pose unique challenges.3,6
Children with physical or cognitive impairments may be at risk for inadequate pain management because they may be too young to effectively communicate about pain3,7; have communication impairment disabilities3,6,8; need ventilatory support and tracheotomies, which can interfere with speech and normal speech development9; or be on medications that interfere with their ability to communicate.3 Providers may have difficulty accurately determining when cognitively impaired children are in pain, and these children may receive less pain medication than non–cognitively impaired children.10–12 Children who cannot speak English or whose parents do not speak English may also be at risk for inadequate pain management, even if interpreting services are available.13
The proportion of hospitalized children likely to be unable to communicate effectively about their pain is unknown. We therefore conducted a point prevalence study to estimate the proportion of patients at a children’s hospital who have difficulty communicating about pain to hospital staff.
The Children’s Hospital of Philadelphia (CHOP) Committee for the Protection of Human Research Subjects approved the protocol for this study. Between July 17 and July 30 2013, we obtained information for each inpatient at CHOP aged ≥12 months in each of the 20 inpatient units or patient care areas. CHOP is a large children’s hospital that serves the greater Philadelphia region and patients from across the nation and abroad. Units or areas within CHOP were numbered 1 through 20 based on their location in the hospital, and the web site random.org was used to generate a random sampling order for the numbers 1 through 20. On a given day, bedside nurses in randomly selected areas or units were asked to complete a brief questionnaire about the communication abilities and pain for each inpatient aged ≥12 months in the unit. Patient age, gender, ethnicity, and spoken language were obtained from the medical record. Major Diagnostic Categories were based on discharge data regarding the patient’s assigned All Patient Refined Diagnosis-Related Groups data.
Nurses were asked to choose 1 statement that best described the patient that day from the following statements: “The patient can communicate clearly, using words in full sentences”; “The patient can say some simple ideas using words, but does not speak in full sentences”; “The patient cannot use words, but can effectively communicate other ways (sounds, gestures, facial expressions, in writing or using facilitative technology)”; “The patient is not able to communicate effectively (using words, sounds, gestures, facial expressions, or facilitative technology)”; and “Other.” In most cases, nurses who chose “Other” noted that the patient spoke a different language, such as Arabic.
Nurses were also asked to report whether the patient had experienced pain during the hospitalization and how much they agreed with the following statement, with 1 being strongly agree and 5 being strongly disagree: “I (and other CHOP staff) needed help from the parent or other caregiver to understand the patient’s communication about pain or pain behavior.”
For patients who had experienced pain, nurses were asked to report how much they agreed with the following statements, with 1 being strongly agree and 5 being strongly disagree: “This patient is able to communicate effectively about her/his pain to me and other health care providers”; “This patient’s pain has been well managed during this admission (e.g., the patient gets medicine for pain when needed).”
We audited all cases where nurses disagreed or strongly disagreed that pain was well managed. Review of these medical records confirmed that pain scores on either the Revised Face, Legs, Activity, Cry, Consolability scale (the scale that the audit revealed was consistently used for patients who the nurses indicated had difficulty communicating about pain) or the numeric 1 to 10 scale or Wong–Baker FACES scale (consistently used for patients who were reported to have no difficulty communicating about pain) were >4 in the 24 hours before the date the survey was completed. We audited an equal number of cases where nurses agreed that pain was well managed and confirmed that in most cases pain scores were 0, with occasional spikes of higher pain scores diminished after administration of pain management medications.
Questionnaires were completed for 266 inpatients aged ≥12 months. Demographic and communication characteristics are reported in Table 1. Seven questionnaires were excluded because a patient was assessed twice due to transfer within the hospital; 4 were excluded because the medical record number was recorded incorrectly, making it impossible to collect demographic data for these patients; and 1 was excluded because the patient was <12 months old.
Nurses reported that 40% (101/254) of inpatients had some difficulty communicating (ie, they could not communicate clearly using words in full sentences or spoke another language). Of the 233 patients with data for major diagnostic categories, the 5 most common major diagnostic categories in the sample were digestive system (15%, 34/233); lymphatic, hematopoietic, and other malignancies (12%, 29/233); respiratory system (10%, 24/233); nervous system (10%, 23/233); and musculoskeletal system and connective tissue (9%, 21/233). Difficulty communicating varied within these diagnostic categories (digestive system 35%, 12/34; lymphatic, hematopoietic, and other malignancies 28%, 8/29; respiratory system 67%, 16/24; nervous system 61%, 14/23; and musculoskeletal system and connective tissue 14%, 3/21).
Nurses reported that 69% (174/254) experienced pain during the hospitalization (Table 2) and that of the 174 patients who experienced pain, 36% (62/174) had some difficulty communicating (Table 2). Nurse reports of patient ability to communicate were not significantly related to ethnicity or race (Table 1, χ2 test, P = .62 and .19, respectively). Nurse reports of patient ability to communicate were also not significantly related to reports of whether the patient experienced pain (Table 2, χ2 test, P = .30).
Patient ability to communicate was significantly associated with nurses needing help from the caretaker (χ2 test, P < .001). Nurses agreed or strongly agreed that they and other health care providers needed help from parents or caretakers to communicate with 37% (95/254) of the patients. Only 24% (36/153) of nurses reported needing help from caretakers for patients who were able to communicate clearly, but 69% (24/35 and 22/32, respectively) reported needing help from caretakers for patients who could communicate simple ideas or in other ways. For patients who were unable to communicate at all, nurses were evenly split between agreeing that they needed help (37%, 11/30), neither agreeing or disagreeing (20%, 6/30), and disagreeing (40%, 12/30). In some cases nurses described patients as being able to communicate clearly but shy or unwilling to talk to health care staff.
Among the 174 patients who experienced pain, 20% (34/174) of the nurse assessments disagreed or strongly disagreed that the patients were able to communicate effectively about pain (Table 3). Overall, patient ability to communicate was significantly associated with patient ability to communicate about pain (χ2 test, P < .001). Nurses were more likely to report that patients who could communicate clearly in general were also able to communicate about pain, and that patients who were not able to communicate clearly in general were not able to communicate about pain. There was a potentially important subgroup, however: 4% (5/112) of patients deemed by nurses to be able to communicate clearly in general were described as unable to communicate effectively about pain.
Nurses reported that pain was well managed for 89% (154/174) of patients who experienced pain and well managed for 84% (52/62) of patients with difficulty communicating who experienced pain (Table 4). Of the patients who experienced pain, ability to communicate was not associated with reports of whether pain was managed effectively (χ2 test, P = .80).
In this point prevalence study that relies on nurse assessments, a substantial proportion of inpatients aged ≥12 months at a large children’s hospital had difficulties communicating effectively and experienced pain during hospitalization. These communication difficulties were not associated with nurse reports of patients experiencing pain or the effectiveness of pain management for these patients. However, patients who had difficulties communicating in general were also more likely to have difficulty communicating about pain specifically, and nurses were more likely to need help from the caregiver to understand these patients. A small number of children appeared to have difficulty communicating about pain even though they were able to communicate effectively otherwise. Nurses reported that a higher percentage of nonwhite and Hispanic patients were unable to communicate at all, but these differences were not statistically significant.
To our knowledge, this is the first point prevalence study to estimate the proportion of pediatric inpatients who are unable to communicate effectively and are experiencing pain and the first to explore whether these communication problems are associated with pain management. The results of this study should be interpreted with 3 caveats in mind. First, the assessments of communication abilities were performed entirely by the bedside nurse who was caring for the patient at the time the point prevalence survey was performed. Assessments of ability to communicate performed by other people, such as the patients themselves, their parents, or an independent assessor, may have differed. Even so, the patient’s ability to communicate effectively to the care team generally and to the bedside nurse specifically is of key importance to the timely and effective assessment and management of pain, such that the nurse’s perception of the patient’s communication effectiveness is relevant. Second, although the ability to communicate was not associated with nurse reports of difficulty managing pain, we assessed the effectiveness of pain management by asking nurses to complete a single item regarding this issue. Although an audit of the medical records of a subsample of patients found that nurse reports of effectiveness were consistent with objective measures of pain, results may have differed had we used a more objective measure of pain or an independent pain assessment conducted by someone not providing care to the patient. Third, the data in this study come from a single pediatric hospital with few non–English speakers and may not generalize to other hospitals or other patient populations.
Even after we account for these limitations, this study underscores the fact that a significant percentage of patients in children’s hospitals are not able to communicate effectively, including young adult patients. To provide care to these patients, including not only patients with the greatest difficulty communicating but also patients who can communicate clearly, bedside nurses report relying on the patients’ parents and other caregivers who know the patient well. Although this study focused on the potential relationship between communication effectiveness, pain, and pain management, difficulties communicating would also have implications for the identification, assessment, and management of a wide range of nonpain symptoms. Future research should identify which medical conditions, procedures, or medications are most likely to be associated with inability to communicate effectively among pediatric inpatients; determine whether pain management for patients who have difficulty communicating is as effective as these results suggest; assess the best ways to engage parents and other care providers when assessing and managing pain (and other symptoms); and determine the consequences, if any, of the inability to communicate effectively for pain treatments and pain control and for overall symptom assessment and management.
We thank the nursing staff at CHOP for their help in completing this study. We also thank Allison Parker, MA, for her help in designing the questionnaire and reviewing medical records, Jennifer A. Faerber, PhD, for conducting a power analysis, and Pamela G. Nathanson, MBE, for her comments on this manuscript.
Dr Hill participated in study conception and design and in data acquisition, analysis, and interpretation, and he drafted the manuscript, performed the statistical analysis, and supervised the study; Ms Carroll and Ms Vega participated in data acquisition, provided administrative, technical, or material support, and critically revised the manuscript for important intellectual content; Dr Dougherty participated in study conception and design and critically revised the manuscript for important intellectual content; Dr Feudtner participated in study conception and design and in data analysis and interpretation, obtained funding, and critically revised the manuscript for important intellectual content; and all authors approved the final manuscript as submitted.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial disclosures relevant to this article to disclose.
FUNDING: This study was funded by the Mayday Fund and the Milbank Foundation. The Mayday Fund and the Milbank Foundation had no role in the drafting, editing, review, or approval of this manuscript.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
- The Children’s Hospital of Philadelphia
- Stevens BJ,
- Abbott LK,
- Yamada J,
- et al
- Jimenez N,
- Jackson DL,
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- Ebel BE
- Copyright © 2014 by the American Academy of Pediatrics