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Pain assessment in children with special needs: a review of the literature.

During the 2009-2010 school year, almost seven million students in the United States received special education services (Institute of Education Statistics, 2012). These students had a myriad of diagnoses, such as intellectual disability, speech and language disorders, emotional disturbances, specific learning disabilities, and autism (Data Accountability Center, 2011). The prevalence of many of these diagnoses is increasing: Autism spectrum disorder diagnoses now exceed those of juvenile diabetes, pediatric cancer, and pediatric AIDS combined, and Down syndrome is the leading cause of cognitive impairment worldwide (Hennequin, Faulks, & Allison, 2003; Mieres, Smallwood, & Nicholson, 2011). At over 7 hr per day, 5 days per week, 10 to 12 months per year, a large percentage of time for students with special needs is spent at school in the care of school staff. When children are in school, nurses are responsible for ensuring that health issues such as pain do not interfere with learning. Teaching staff are often the eyes and ears of these nurses when it comes to identifying changes in health status or the presence of new symptoms.

Occurrence, Experience, and Display of Pain

Some students with disabilities have a higher risk of experiencing pain as a result of medical conditions and procedures than do neurotypical children, and some children with intellectual or developmental disabilities commonly experience daily pain (Dowling, 2004; Solodiuk & Curley, 2003; Stallard, Williams, Lenton, & Velleman, 2001). Evidence obtained from pain diaries indicates that almost 75% of children who are cognitively impaired experience pain at least 1 day per week for about 10 hr per day, with 88% of these children experiencing pain more than 1 consecutive day (Breau, Camfield, McGrath, & Finley, 2003; Stallard et al., 2001). Children with special needs do not always experience or display pain in the same ways that neurotypical children do (Breau et al., 2003). Parents have reported that their children with special needs have decreased pain sensitivity and greater pain tolerance than do their neurotypical siblings (Fanurik, Koh, Schmitz, Harrison, & Conrad, 1999). Differences in pain experience and expression have been noted for children with certain diagnoses, specifically Down syndrome (Trisomy 21) and autism spectrum disorder. Children with Down syndrome may not spontaneously report pain or have a motor reaction to painful stimuli, whereas children with autism spectrum disorder display more intense facial reactions in response to pain than do neurotypical children (Davies, 2010; Nader, Oberlander, Chambers, & Craig, 2004). In fact, facial reactions may be the most consistent signs of pain displayed by children with special needs (Breau, Finley, McGrath, & Camfield, 2002). Because of an impaired ability to report pain, some children with special needs often experience pain that is undertreated (de Knegt et al., 2013)

Challenges of In-School Pain Assessments

Obtaining accurate assessments is necessary to be able to effectively investigate and manage or treat painful experiences in children. School nurses are responsible for assessing and managing the pain experienced by their students. Assessing pain in children is complex, and can be especially challenging when the children have special needs (Hauer, 2010; McGrath, Rosmus, Canfield, Campbell, & Hennigar, 1998; Mieres et al., 2011). Neurotypical children generally can verbalize that they are experiencing hurt, discomfort, or pain. For decades, it has been thought that the ability to verbalize pain presence is important, given that self-report is considered the gold standard of pain assessment (McCaffrey, 1968). School nurses use pain assessment data, such as quantifications of pain intensity, to select and implement pain management interventions. Examples of pain management interventions include administering provider-ordered narcotics or nonsteroidal anti-inflammatory drugs, facilitating rest in a quiet space, or providing music therapy and distraction techniques. Without assessment data that accurately chronicle a patient's pain, nurses cannot select and implement efficacious relief interventions. The nursing management process for pain in students with special needs relies on the ability of school nurses to obtain accurate assessments using observational methods, given that self-report is often not reliable or able to be obtained. Relying on objective methods to assess and subsequently plan to manage a subjective experience creates opportunities for providing suboptimal pain management. In the absence of subjective self-report, the identification of pain intensity and the decision of how to manage it resides in the hands of the care provider, not the child who is experiencing it. It is essential for nurses and educators of schoolchildren with special needs to understand that pain does occur and that assessments can be performed in the absence of self-report. Managing pain by implementing efficacious relief interventions is essential in facilitating an environment in which students can thrive educationally.

Often, assessment instruments are used to help patients deliver a self-reported quantification of their pain intensity. Tools that obtain quantified self-reports of pain intensity usually allow children to state a number or point to a face that correlates with a number, such as the Wong-Baker Faces Pain Rating Scale (Whaley & Wong, 1987). Use of these popular scales requires that children understand how the numbers are being used to represent pain intensity, and the ability to understand concepts necessary for tool use is often overestimated by care providers (Fanurik, Koh, Harrison, Conrad, & Tomerun, 1998). Children with special needs are disadvantaged by these self-report approaches to pain assessment (Howard, 2003). Results of one study indicated that 64% (71 of 111) of neurotypical children could demonstrate understanding of the ordinal position and magnitude of numbers, whereas 21% (9 of 47) of children with only mild cognitive impairments could understand these concepts (Fanurik et al., 1998). Further, children with moderate to severe cognitive impairments were unable to quantify their pain severity and could not follow instructions for self-report (Fanurik et al., 1998).

Purpose of Review

Science has advanced rapidly for pain assessment in the neurotypical population but slowly in the population of individuals with special needs, as evidenced by the availability of literature for each population. In addition, pain assessment data for students with special needs obtained from the school setting have not been disseminated via scientific literature. Guidelines for best practices for nurses to utilize in schools do not exist. The absence of evidence obtained from the school setting and the subsequent lack of practice guidelines based on evidence complicate the pain assessment process for nurses. Without a practice guideline or solid evidence base, pain care for children with special needs is inconsistent and results in children braving pain unnecessarily (Twycross, Mayfield, & Savory, 1999). Pain assessments must be made more consistent and reliable to provide efficacious pain management interventions.

This article is a review of the current body of knowledge pertaining to methods of pain assessment for students with special needs. For the purposes of this review, special needs were defined as developmental or intellectual disabilities that affect a child's ability to provide a self-report of pain presence and intensity. The aim of this review is to inform school personnel of how pain can be assessed in schoolchildren with special needs by school nurses, to suggest changes in nursing and educational practices, and to propose priorities for future research. Originally, the research question guiding this literature search was "How is pain assessed in schoolchildren with special needs?" but our focus changed, as described in the Results section.

Method

Our literature review followed PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines (Moher, Liberad, Tetzlaff, Altman, & the PRISMA Group, 2009). PRISMA guidelines serve to help researchers report systematic review processes--specifically, through a 27-item checklist and a four-phase flow diagram, the templates of which have been published online for use by the PRISMA Group (http://www.prisma-statement.org/). Databases searched as part of this review included Cumulative Index to Nursing and Allied Health Literature, Google Scholar, ProQuest Nursing, ScienceDirect, PubMed, and Education Resources Information Center. Search terms used were pain assessment, developmental delay, cognitive impairment, special needs, school, and school health. One author (B.L.Q.), in consultation with a pediatric pain specialist and researcher from Boston Children's Hospital, selected these terms. Inclusion criteria were English-language research articles relevant to pain assessment tool and scale use in children and adolescents with special needs. We first wished to limit the review to only school-based literature on assessments, but none were discovered; therefore, we did not impose a limit on study setting. We also did not limit database searches by publication year not only to capture pioneering works, but also because the field of relevant literature was so limited. Hand searches were also performed of reference lists of articles found in the database search and in journals such as PAIN and Pain Management Nursing.

Results

The database search yielded 182 articles. Hand search of reference lists and journals provided 12 additional articles. Ten duplicates were found, leaving 184 publications to be screened by title and abstract. A review of the list of titles, followed by a review of each remaining abstract, was completed to eliminate publications not relevant to the selected topic. Title and abstract review excluded 153 articles. Thirty-one full-text articles were assessed for eligibility. Sixteen publications were excluded on the basis of the full-text review because they did not contain information useful beyond the purpose of establishing a background of the problem or information specific to pain assessment methods. The final sample for review included 15 publications (see Figure 1), which were evaluated for information regarding the article type, sample, significant findings, and tool psychometrics (if applicable; see Appendix). One registered nurse completing studies at the doctoral level served as the reviewer. Of note, no publications were found concerning pain assessment practices by school nurses or pain in the school setting as experienced by students with special needs. The research question was thus changed to "How is pain currently assessed in children with special needs?" to accommodate the absence of school-specific assessment literature.

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Summary of Evidence

The major theme of "methods of pain assessment" guided the search for evidence. Evidence was reviewed, and content analysis was employed to identify subthemes. The role of parents or guardians and the use of tools were identified as two subthemes. Findings from the literature pertinent to pain assessment in children with special needs are summarized in this section. Table 1 displays findings organized by theme.

Methods of Pain Assessment

In practice, nurses often employ validated pain assessment tools or request assistance from parents, teachers, or other caregivers to assist in pain assessment. Many pain assessment tools have been developed and are used in practice, but most seek a self-reported pain intensity rating. Utilizing these existing pain assessment tools in the population of schoolchildren with special needs can be challenging, given that substantial difficulties exist in obtaining a self-reported pain intensity rating in this population.

Role of Parents/Guardians

Parents are aware that health care providers have difficulty assessing pain in their children with special needs. In a study involving 145 parents of children with borderline to profound special needs, only 50% of parents reported that health care providers complete accurate assessments because knowing the child in a pain-free state is vital to pain identification and precise assessment (Carter, McArthur, & Cunliffe, 2002; Fanurik et al., 1999).

Given that parents and primary guardians know their own children better than others do, they are typically skilled and competent in identifying pain and assessing its intensity (Carter et al., 2002). In the absence of reliable self-report when assessing for pain in children with special needs, parents can serve as proxy reporters and provide equitable measures of pain intensity for their children (Voepel-Lewis, Malviya, & Tait, 2005). Parents have an active role in assessing their children's pain, and assessment activities include guessing about the pain, making an internalized mental checklist, or instinctively knowing when their children are in pain (Carter et al., 2002). With internalized and individualized mental checklists, parents perform several activities, such as holding the child or talking to the child in an attempt to notice discrete cues that indicate the presence of pain (Carter et ah, 2002). Internalized checklists for pain assessment are informal tools used by parents. Parents of children with special needs believe that any formal pain assessment tool created for health care providers' use would have to be designed according to parental advice and include parents' participation in assessment (Carter et ah, 2002).

Tools

If health care providers use a formal pain assessment scale to measure pain in children with special needs, it is necessary to use a tool designed specifically for use in this population (McKay & Clarke, 2012). Tools studied in the articles selected for review included the Non-Communicating Children's Pain Checklist (NCCPC), NCCPC-Postoperative Version (NCCPC-PV), Faces Legs Activity Cry Consolability (FLACC), Revised FLACC (rFLACC), Pediatric Pain Profile (PPP), and Individualized Numeric Rating Scale (INRS).

NCCPC and NCCPC-PV. The NCCPC and NCCPC-PV list 30 and 27 cues, respectively, for providers attempting to identify pain in children with special needs who have limited verbal capabilities. Researchers discovered that 12 of these items were more likely to be selected when pain was assessed in nonverbal children with special needs: not cooperating, irritable, unhappy, difficult to distract, not able to satisfy or pacify, change in eyes, not moving, less active, quiet, gestures to/touches body part that hurts, tears, and sharp intake of brcatli/gasping (Breau, Camfield, McGrath, Rosmus, & Finley, 2001). When compared with an inventory of words and gestures representative of pain, the NCCPC and NCCPC-PV were both determined to be reliable for measuring pain in children with special needs (Cronbach's alpha = .79; Breau, McGrath, Camfield, Rosmus, & Finley, 2000). Researchers have also found that the NCCPC-PV could be used to differentiate between pain and distress (Cronbach's alpha = .05; Breau et al., 2000; Breau et al., 2002).

Familiarity with the child may not be necessary to effectively use the NCCPC-PV for rating pain, because care providers unfamiliar with individual children have been able to detect signs of pain when using the tool (differences in pain scores not statistically significant at .05 level; Breau et al., 2002). Despite its verified ability to identify pain in nonverbal children with special needs, the NCCPCPV may not be useful in practice. The longer length of the NCCPC-PV limits its usefulness for routine pain assessment in the clinical setting (Ghai, Makkar, & Wig, 2008).

rFLACC. When the FLACC is used to assess pain in nonverbal children, the child's face, legs, activity, crying, and consolability are used to estimate a pain intensity rating. The original FLACC was revised to allow for increased individualization and so was coined the rFLACC (Ely et al., 2012; Malviya, Voepel-Lewis, Burke, Merkel, & Tait, 2005). The rFLACC has been used to measure pain reliably and validly in children with special needs (intraclass correlation = .90, confidence interval = 0.87-0.92, p < .001; Malviya et al., 2005).

The rFLACC has several advantages over other scales. Due to consistency and clinical utility, the rFLACC was found to have better qualities for adoption into practice when compared to the NCCPC-PV (Voepel-Lewis et al., 2008). Nurses prefer the rFLACC over the PPP because they believe it to be more accurate, clinically practical, and individualizable (Chen-Lim et al., 2012; Ely et al., 2012). Nurses could complete the rFLACC in less than 1 min, whereas the PPP took 2 to 3 min to complete (Chen-Lim et al., 2012; K. A. Flunt & Franck, 2011). For home use, parents preferred the rFLACC to the PPP (Chen-Lim et al., 2012; Ely et al., 2012). The rFLACC is not without disadvantages. Underlying motor impairments in a child's legs (e.g., spasticity) may influence assessments made with the rFLACC Observational Scale (Ghai et al., 2008).

PPP. The PPP is a comprehensive pain assessment tool with which health care providers obtain pain histories, conduct baseline and ongoing assessments, and track outcomes of management interventions. In a study involving children with neurodisabilities, the PPP was found to be reliable (intraclass correlation = .90, 95% confidence interval = 0.80-0.95) and valid through having excellent correlation (Pearson's r = .91) with the Numeric Rating Scale (NRS) for pain assessment in children with special needs (A. Hunt et al., 2007). The NRS is administered by a nurse asking a patient to provide a pain intensity rating between 0, representing the absence of pain, and 10, representing the worst pain possible. The PPP has been noted as an invaluable guide to help parents of children with special needs identify pain and its intensity (McKay & Clarke, 2012).

Parents and nurses noted positive experiences of collaboration with one another when using the PPP for pain assessment (K. A. Hunt & Franck, 2011). Parents found nurses' assessments of pain to be more accurate from the PPP than the rFLACC (Chen-Lim et al., 2012; Ely et al., 2012). Although considered accurate, the PPP was noted to be time-consuming by parents of children with special needs (K. A. Hunt & Franck, 2011).

INRS. The INRS was found to be valid (Pearson's r = .73) and reliable (intraclass correlations = 0.74-0.87, significant at p < .001 level) for assessing pain in nonverbal children with special needs (Solodiuk et al., 2010). The INRS is an adaptation of the 0-to-10 NRS (McKay & Clarke, 2012; Solodiuk & Curley, 2003). The INRS involves parent participation in pain assessment by requesting that parents correlate pain behaviors displayed by their children with each 0-to-10 pain intensity rating (Solodiuk & Curley, 2003). In addition to parent participation, collaboration with health care providers is fostered. Nurses can add observed pain behavior descriptions to the scale over the course of care (Solodiuk & Curley, 2003). Given that the scale is assembled according to parents' and nurses' input, the accuracy of pain ratings obtained from the INRS is dependent on their ability to observe a child's response to pain (Ghai et al., 2008).

Discussion

Many children with disabilities, such as autism spectrum disorder, Down syndrome (Trisomy 21), and other diagnoses, experience pain daily (Breau et al., 2001; Dowling, 2004; Stallard et al., 2001). Although evidence presented in the review was not specific to children in the school setting, certainly children may experience daily pain that is underassessed or completely unassessed in school. Despite issues of assessing pain in students with special needs and conflicting reports of certain students' ability to self-report, pain still must be assessed and managed while children are in school.

Care providers overestimate the ability of children with special needs to accurately report their pain (Fanurik et al., 1998). Children with moderate to severe intellectual or developmental disabilities often cannot follow instructions for self-reporting their pain, and more than 75% of children with mild cognitive impairments do not understand concepts necessary to providing an accurate self-report of pain intensity (Fanurik et al., 1998). Still, school nurses and other care providers present self-report scales to children with special needs in practice. A switch to observational scales should be made. Parents of children with special needs believe that health care providers do not know their children well enough to assess their pain accurately (Carter et al., 2002; Fanurik et al., 1999). This belief by parents speaks to the inaccurate assessments obtained by scales and methods most commonly used by providers in practice.

Absent from the existing literature is the role that educators hold in helping nurses assess and quantify pain intensity. Teachers spend more time in classrooms than do most school nurses. It would behoove the school nurse to ask teachers how much pain they consider a student to be experiencing and why. Similar to Carter and colleagues' (2002) finding that tools fostering parent input should be developed and utilized, teacher input should also be regarded in practice.

Observational tools can be helpful to obtain pain intensity ratings for children with special needs when a reliable self-report cannot be obtained. Observations from the our own practical experience suggest that these tools are often not used in the school setting due to school nurse knowledge deficits on assessing pain in this population or the existence of these observational tools. If a provider employs an observational tool in practice, it must be one intended for use in the population of children with special needs (McKay & Clarke, 2012). The NCCPC, NCCPC-PV, rFLACC, PPP, and INRS have all been deemed reliable for use in the population of children with special needs (Breau et ah, 2000; Breau et ah, 2002; K. A. Hunt & Franck, 2011; Malviya et ah, 2005; Solodiuk et ah, 2010). The INRS fosters the sought-after parent-nurse connection through collaboration on scale personalization (Solodiuk & Curley, 2003). Parents and nurses create the scale, so the accuracy of assessment ratings obtained from the INRS are dependent on the assessor's ability to observe and record pain responses in children with special needs (Ghai et ah, 2008; Solodiuk & Curley, 2003). The INRS can also facilitate teacher input. Nurses can seek input from educators when determining intensity ratings or categorizations for student-specific pain behaviors to add to a student's IRNS.

Recommendations for Practice

Utilizing the help and knowledge of parents appears to be essential in identifying pain presence and estimating accurate intensities for children with special needs (Carter et ah, 2002). If school nurses are not already consulting parents or guardians for assistance in pain identification and assessment, they should enlist the help of primary caretakers and take advantage of their familiarity with individual student presentations of pain. Rather than contact parents or guardians at each pain-related office visit, school nurses should be proactive in collaborating with parents or guardians to obtain individualized pain indicators at the beginning of the academic year and follow up with them as necessary. Although literature regarding assistance in assessment from teaching staff was nonexistent, school nurses should consider consulting educators when assessing the pain of a child with intellectual or developmental disabilities. Similar to parents, educators spend a great deal of time with students, usually more time than the school nurse. Members of the teaching team can inform nurses of changes in student activity, mental status, affect, feeding tolerance, or other behavior that may be indicative of pain. If a teacher thinks that a student is displaying a pain behavior, they should share the observations with the school nurse. The school nurse may not be aware of changes from baseline caused by pain, given that they do not always have the opportunity to observe or interact with students when they are well and pain-free.

School nurses should consider meeting with special educators to discuss common pain behaviors and the pain identification process. Sharing knowledge would better equip teachers to recognize pain and then help students who are in pain to seek assessment and management from the school nurse. Training for teaching staff regarding pain identification or signs to watch for indicating the need for a health office visit is not common practice. If educators are not receiving training regarding pain identification and processes for reporting suspected pain to the school nurse, educators should request that nurses share knowledge on recognizing potential pain in children with special needs.

The INRS represents the best option for school nurses to use with students with special needs. The INRS facilitates collaboration with parents for pain identification and intensity quantification (Solodiuk & Curley, 2003; Solodiuk et al., 2010). Ideally, school nurses will contact parents to educate them about the assessment tool and ask for collaboration in completing it. Unlike other reviewed scales, the INRS allows for pain intensity scoring on the 0-to-10 metric and may become an increasingly personalized tool over the course of care (Solodiuk & Curley, 2003; Solodiuk et al., 2010). Instead of seeking input from only parents or guardians of those students who have chronic pain, nurses should provide all caretakers with an opportunity to complete a preliminary INRS at the start of each academic year. If parent participation is not available, school nurses can still employ the INRS. School nurses can collect and record observational data on student pain, ask educators about possible pain behaviors, and continue to update the INRS each time that a student presents with suspected pain. Although the INRS is developed collaboratively, assessment falls under the scope of a nurse's practice. School nurses should consult with teachers on pain behaviors to add to the INRS; however, teachers will likely not perform pain assessments aided by the INRS.

Future Research Priorities

No body of evidence currently exists that school nurses can reliably use to inform and shape pain assessment practices for students with special needs. Many issues central to pain assessment in this population remain unexplored, given that concerns regarding pain assessment in the school setting have not been formally identified or investigated in the published literature. This lack of evidence makes pain assessment practices--and, subsequently, management--inadequate for schoolchildren with special needs (Twycross et al., 1999). Although we have offered recommendations for practice, more research must be completed to advance knowledge and practice for assessing the pain of students with special needs. Research focused on any aspect of this area is essential and requisite to the development of reliable and valid pain assessment practices for children with special needs. Based on this systematic review, selected research topics emerge as priorities.

Preliminary research activities should involve school nurses. Specifically, investigators working with school nurses as participants should aim to identify how school nurses currently assess pain in students with special needs and to establish which method of assessment school nurses find optimal for use when assessing pain in students with special needs. Before attempting to improve assessment practices, researchers must first establish how pain is currently being assessed and what the real challenges are for school nurses.

Due to their pivotal role in assisting students to seek care from the school nurse, special educators should also be involved in research aiming to discover issues in pain assessment practices. Topics that should be studied include how educators determine that a student may be in pain and how they decide when to present a student to the health office for a nursing assessment. Teachers' perspectives should be obtained regarding the effect that pain has on student learning, the influence of pain in the classroom, and issues such as inattention, classroom difficulties, interruptions, and maladaptive behavior perceived to stem from pain.

Researchers should include not only school nurses and teachers in their investigations but parents as well. Priority areas to explore with parents overlap some of areas that should be explored with teachers and nurses. Researchers should survey parents regarding the occurrence of pain in their school-attending children, and they should explore thoughts on how assessment would best be completed in school settings. Investigators must inquire about concerns surrounding inadequate assessments of pain while the child is in school. Parents' willingness to collaborate with school nurses for pain assessment should be explored, whether episodically or by proactively preparing scales such as the INRS. Because parents feel that their involvement in assessment is imperative to its adequacy, they should also be involved in the creation of new assessment instruments (Carter et al., 2002). Researchers developing new tools should recruit parents for assistance.

Much of the research summarized in this literature review utilized children with severe or profound special needs in study samples. Fanurik and colleagues' (1998) study revealed that most children with mild special needs could not understand the concepts necessary for reporting a quantified pain intensity rating by use of a self-report assessment tool. Researchers should include a more diverse sample of children in studies--those with mild, moderate, severe, and profound special needs diagnoses. This would allow for an understanding of challenges that schoolchildren may have in reporting pain or having their pain assessed. Some clinicians and educators may think that learning disabilities in otherwise neurotypical children do not influence pain assessment or self-report of the presence and intensity of pain. Although seemingly benign to the process, learning disabilities could interfere with pain assessment. Given that an understanding of the ordinal position and magnitude of numbers is required for proper use of many popular pain assessment tools, even children with learning disabilities such as dyslexia and dyscalculia should be involved in future research.

Conclusion

It is essential to obtain adequate assessments of pain if it is to be adequately managed. Although several observational methods of assessment can be employed for schoolchildren with special needs, the INRS appears to be most helpful for school use. In practice, nurses should collaborate with teachers and parents to develop an IRNS for each student. Pain care for schoolchildren with special needs is a severely neglected research area. For too long, pain experienced by schoolchildren with special needs has been overlooked. Future research must specifically involve children with special needs enrolled in school, given that many children with special needs spend the majority of their day in the care of school staff. With a reliable evidence base, assessments of pain by school nurses will be more adequate in aiding the selection of efficacious pain management interventions. Students receiving effective pain management interventions stemming from more accurate assessments will be able to learn, socialize with peers, and partake in the wide variety of activities occurring in the special-needs school environment.

Limitations

It is important to note that researchers testing tools in the studies included for review did so against other tools and scales, such as the NRS and visual analog scale. The scales used in testing to determine psychometric properties may or may not be reliable and valid themselves in the population of children with special needs. With pain assessment, the true possibility of tools being reliable and valid is always in question, because pain is a highly subjective experience that varies among individuals.

Equally important is the fact that several references used in this article are over 10 years old. Although dated, they still contain important information on assessing pain in children. Research on the occurrence of pain or underlying challenges in assessment have not been the foci of recent research in pain assessment for children. The focus of more recent pain assessment research has been on other topics in assessment, such as validating new or old scales in very specific populations.

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Manuscript received April 2014; accepted December 2014.

Appendix
Articles Included In the Review.

Article: Type      Sample                   Key Findings

Breau et al.       Part 1: 32 caregivers    NCCPC is useful in
2000: Pilot        of individuals with      measuring pain in
study              cognitive impairments    children with special
                   aged 3-44 years; part    needs when compared
                   2: 33 caregivers         with an inventory of
                                            words and gestures
                                            indicative of pain.
                                            (a)

Breau et al.       Part 1: 33 caregivers    Some items on the
2001: Original     of children with         NCCPC scales more
research           cognitive impairment     likely to be selected
                   and no ability to        when assessing for
                   communicate verbally;    pain in children with
                   part 2: 63 caregivers    special needs.
                   and children with
                   cognitive impairment
                   and severe verbal
                   deficits

Breau et al.       Caregivers of 254        The NCCPC-PV can be
2002: Original     children aged 3-19       used to differentiate
research           years with severe        between pain and
                   intellectual             distress in children
                   disabilities             with special needs.
                                            Familiarity with
                                            individual children
                                            not necessary to
                                            effectively use the
                                            NCCPC-PV. (b)

Carter et al.      15 carers, parents,      Parents are skilled
2002:00:00         nurses, and              and competent in
Qualitative        researchers              identifying pain and
case study                                  assessing its
                                            intensity; parents
                                            utilize many informal
                                            assessment activities
                                            to assess pain in
                                            their children;
                                            parents believe that
                                            formal pain assessment
                                            tools for special-
                                            needs children should
                                            be created with input
                                            from parents and
                                            should utilize parent
                                            input in assessment.

Chen-Lim et al.    30 children with         The undertreatment of
2012: Quality      cognitive impairment,    pain in children who
improvement        133 nurses, 20 parents   cannot self-report is
study              of children with         well documented;
                   cognitive impairment     children with special
                                            needs may not be able
                                            to communicate pain in
                                            a meaningful way.

Ely et al. 2012:                            Individualization on
Literature                                  rFLACC helpful to
review                                      nurses and parents.
                                            Parents prefer PPP and
                                            report that it is more
                                            accurate than rFLACC;
                                            however, they found
                                            rFLACC more useful and
                                            would use it in the
                                            home setting over the
                                            PPP. Nurses prefer the
                                            rFLACC over the PPP
                                            because it is
                                            accurate, helpful,
                                            useful, and quick to
                                            read.

Ghai et al.                                 The long length of the
2008:00:00                                  NCCPC-PV limits
Discussion                                  clinical utility.
paper                                       Underlying motor
                                            impairments in a
                                            child's legs influence
                                            assessments on the
                                            rFLACC. The accuracy
                                            of pain assessments
                                            obtained form the INRS
                                            is dependent on
                                            parents' and nurses'
                                            ability to observe
                                            child pain.

A. Hunt et al.     19 children with         The PPP is reliable
2007: Original     severe neurological      and valid through
research           disability reported by   testing against the
                   parents to have pain     NRS. (c)
                   each day; 10 children
                   with severe
                   neurological
                   disability reported to
                   have no pain or mild
                   pain some time each
                   month

K. A. Hunt &       5 families of children   Positive experiences
Franck 2011:       aged 5-16 years with     of collaboration noted
Pilot study        profound neurological    by parents and nurses
                   impairment; 19 nurses    when using the PPP.
                                            Completing the PPP is
                                            time- consuming.

Malviya et al.     52 children in           Parents can serve as
2005: Original     postoperative state      proxy reporters for
research           aged 4-21 years with     children who cannot
                   cognitive impairment     self-report.
                                            Interrater reliability
                                            demonstrates that the
                                            rFLACC measures pain
                                            reliably and validly
                                            in children with
                                            special needs. (d)

McKay & Clarke     Children with            Tools used to assess
2012:00:00         developmental            pain in children with
Literature         disabilities             special needs must
review                                      have been designed
                                            specifically for the
                                            population. The PPP is
                                            an invaluable guide to
                                            help parents of
                                            children with special
                                            needs identify pain.

Solodiuk &                                  The INRS involves
Curley 2003:                                parents and nurses in
Discussion                                  scale creation.
paper

Solodiuk et al.    50 children aged 6-18    The INRS is reliable
2010: Original     years with documented    and valid for
research           intellectual             assessing pain in
                   disability and           children with special
                   inability to             needs through testing
                   communicate undergoing   nurses' and parents'
                   elective surgery;        rating agreement. (e)
                   primary caregivers
                   living with child for
                   at least 5 months and
                   planned to be present
                   during surgical
                   admission

Voepel-Lewis et    52 children aged 4-19    Parents can provide
al. 2005:          years with cognitive     proxy measures for
Original           impairment (cerebral     their children's pain
research           palsy, congenital        when self-report
                   syndromes. autism,       cannot be obtained.
                   etc.) and parents

Vopel-Lewis et     15 children in           The rFLACC has better
al. 2008:          postoperative state      qualities to adoption
Original           with mild to moderate    into clinical practice
research           cognitive impairment;    than the NCCPC-PV.
                   20 clinicians

Note. FLACC = Faces Legs Activity Cry Consolability; INRS =
Individualized Numeric Rating Scale; NCCPC = Non- Communicating
Children's Pain Checklist; NCCPC-PV = NCCPC-Postoperative Version;
NRS = Numeric Rating Scale; PPP = Pediatric Pain Profile; rFLACC =
Revised FLACC.

(a) Cronbach's alpha = .79.

(b) Cronbach's alpha = .05.

(c) Intraclass correlation = .90, confidence interval = 0.80-0.95,
Pearson's r = .91.

(d) Intraclass correlation = .90, confidence interval = 0.87-0.92,
p < .001.

(e) Intraclass correlation = .74-.87, p < .001, Pearson's r = .73.


DOI: 10.1177/0014402915585480

Brenna L. Quinn (1,2), Esther Seibold (3), and Laura Hayman (1)

(1) University of Massachusetts-Boston

(2) LABBB Educational Collaborative

(3) Dartmouth Hitchcock Medical Center

Corresponding Author:

Brenna L. Quinn, PhD(c), RN, NCSN, Nurse Leader, LABBB Educational Collaborative, 36 Middlesex Turnpike, Bedford, MA 01730, USA.

E-mail: bquinn@labbb.net
Table 1. Research Findings for Methods of Pain Assessment.

Role of parents/    Parents know their children and can provide
guardians (proxy)     equitable proxy measures. (a,b)
                    Parents have active roles in pain assessment
                      and believe that any tool made for their
                      children with special needs would have to
                      involve parental contributions. (a)
Tools               If a tool is used to assess pain in a child
                      with special needs, it must have been
  NCCPC/NCCPC-PV      designed for use in this population. (c)
    Benefits        Valid for pain measurement in children with
                      special needs; differentiates pain and
                      distress. (d,e)
                    Familiarity with the child may not be necessary
                      for effective tool use. (e)
                    Some checklist items more likely than others
                      to be selected when pain is assessed in
                      children with special needs. (f)
  Disadvantages     Length of time to implement tool limits clinical
rFLACC                utility. (g)
  Benefits          Reliable and valid for measuring pain in children
                      with special needs. (h)
                    Nurses prefer it over the PPP and rFLACC because
                      they believe scale to be quick, accurate, and
                      clinically practical and find that the
                      individualization options are helpful.
                      (i,j,k,l)
                    Parents prefer over the PPP and rFLACC for
                      home use. (i,k)
  Disadvantages     Underlying motor impairments in legs may
PPP                   influence pain scores. (g)
  Benefits          Valid for pain assessment in children with
                      special needs. (j)
                    Parents and nurses note positive experiences
                      of collaboration when employing scale. (j)
                    Parents consider scale more accurate and for
                      use by nurses. (i,k)
  Disadvantages     Noted to be time-consuming to complete. (i)
INRS
  Benefits          Valid and reliable for pain assessment in
                      children with special needs. (l,m)
                    Scored on 0-10 metric. (n,o)
                    Involves parent-nurse collaboration. (o)
  Disadvantages     Accuracy of ratings dependent on parents' and
                      nurses' ability to observe children's response
                      to pain. (g)

Note. NCCPC = Non-Communicating Children's Pain Checklist;
NCCPC-PV = NCCPC-Postoperative Version; PPP = Pediatric Pain
Profile; rFLACC = Revised Faces Legs Activity Cry Consolability.

(a) Carter et al. (2002). (b) Voepel-Lewis et al. (2005). (c)
McKay and Clarke (2012). (d) Breau et al. (2000). (e) Breau et
al. (2002). (f) Breau et al. (2001). (g) Ghai et al. (2008).
hMalviya et al. (2005). Chen-Lim et al. (2012). (h) K. A. Hunt &
Franck (2011). (k) Ely et al. (2012). (l) Voepel-Lewis et al.
(2008). (m) Soldiuk et al. (2010). (n) A. Hunt et al. (2007). (o)
Solodiuk & Curley (2003).
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