| | Pain in Children with Down Syndrome: Assessment and Intervention by ParentsReceived 15 June 2008; received in revised form 18 September 2009; accepted 25 September 2009. published online 02 June 2010.
Corrected Proof Abstract The aims of this study were: 1) to describe how parents assess pain in their child with Down syndrome; and 2) to examine the relationship between pain assessment and decisions by parents to intervene to relieve pain in the child. Twelve parents of school-age children with Down syndrome (ages 6-12 years) were interviewed. Data analysis followed Spradley's Developmental Research Sequence (1979). This included domain analysis, taxonomic analysis, componential analysis, and theme development. Four themes emerged from the data analysis. Theme 1: Being sensitive to verbal and behavioral attributes of pain in the child. Parents reported that they assessed pain in their child with Down syndrome through the child's use of words to express pain, pointing or showing pain location, crying, changes in usual activities, and seeking closeness to the parent. Theme 2: Recognizing emotional and social responses to pain. Parents reported that emotional responses (e.g., anger, fear, frustration, acting out) were part of the pain expressions of their child with Down syndrome. Theme 3: Identifying differences in pain expressions between child and siblings. Parents used strategies to assess pain based on their beliefs that the child was less verbal, slower to complain, and less bothered by pain than siblings. Strategies included questioning the child to elicit self-reporting of pain and observing the child's behaviors. Theme 4: Making decisions to intervene. Parents reported that actions to relieve pain in their child with Down syndrome included more psychologic measures than physical measures, but otherwise no differences were noted in the actions taken for the child and the child's siblings. Children with Down syndrome have genetic, physical, and cognitive differences, but research is limited about how these differences may affect the child's ability to express pain. Down syndrome is a genetic alteration resulting from an abnormality in chromosome 21 that is most commonly the presence of an extra chromosome. The extra normal genetic material results in the overexpression of specific genes that are thought to disturb the biologic pathways that then cause the various features of Down syndrome. Multiple medical problems are associated with Down syndrome, including increased risk for heart and gastrointestinal defects, hematologic disorders, and endocrine problems. Down syndrome is the leading congenital cause of cognitive impairment worldwide (Hennequin, Faulks, & Allison, 2003). The intelligence quotient of persons with Down syndrome ranges between 20 and 80 (Dierssen, Ortiz-Abalia, Arqué, Martinez de Langrán, & Fillat, 2006). Individuals with Down syndrome exhibit delayed linguistic abilities with more extensive use of gestures and utterances rather than verbal production (Vicari, 2006). Impairments in short-term and working memory have also been documented as well as impairment in executive function that directs problem solving and decision making (Vicari, 2006). According to Oberlander and Craig (2003), assessment of pain in children with cognitive impairment is more ambiguous for health care providers, and decision making regarding treatment is more subjective. Assistance with assessment can be obtained from the child's parent. The American Academy of Pediatrics and the American Pain Society (2001) stated that reliable pain assessment could be obtained from the parent or another person who knows the child when a child cannot self-report pain. A position statement by the American Society for Pain Management Nursing (Herr et al., 2006) also recommended the use of surrogate reporting of pain as a credible source for pain assessment in children who lack the skills to verbally report pain. Because parents are familiar and knowledgeable about usual and past pain behaviors in their child, they would be able to recognize even subtle changes in behavior indicative of pain. The purpose of the present study was to investigate pain assessment and intervention by parents of school-age children with Down syndrome. Pain assessment and management are critical to the health and quality of life of children. Exploring how parents assess and intervene to relieve pain in their child provides insight for research and action by health care providers in clinical practice. Specific aims  Aim #1: To describe how parents assess pain in their child with Down syndrome. Aim #2: To examine the relationship between pain assessment and decisions by parents to intervene to relieve pain in the child with Down syndrome. Research specific to Down syndrome supported that children with Down syndrome have different pain responses from other children in relation to reaction time, frequency, and precision. Hennequin, Morin, and Feine (2000) reported that persons with Down syndrome took a longer time to report pain when an ice cube was applied to the wrist and had larger errors in identifying the location of a cold stimulus than control subjects. Defrin, Pick, Peretz, and Carmeli (2004) also found longer reaction time to painful heat stimuli in adults with Down syndrome. In a study by Benini et al. (2004), children with Down syndrome were less inclined to express their pain verbally than the other subjects and less apt to have a motor reaction. Although not specific to Down syndrome, extensive research can be found on pain in children with cognitive impairment. In the studies of caregivers of children with cognitive impairment, caregivers were able to identify pain behaviors in their child (Hunt et al., 2003, McGrath et al., 1998, Voepel-Lewis et al., 2005). Caregivers used different indicators of pain depending on the child's severity of cognitive impairment (Fanurik, Koh, Schmitz, Harrison, & Conrad, 1999). In children with mild to moderate impairment, caregivers used the child's communication or localization of pain as an indicator. As the child's impairment became more severe, caregivers relied on observation of indirect behaviors of pain. Some pain indicators included: 1) crying; 2) whimpering or moaning; 3) becoming quiet, less active, or tense; 4) having tears or changes in the eyes; 5) becoming cranky, irritable, or refusing to cooperate; and 6) eating less (Breau, Camfield, McGrath, Rosmus, & Finley, 2001; Fanurik,, Koh, Schmitz, Harrison, & Conrad, 1999; McGrath, Rosmus, Camfield, Campbell, & Hennigar, 1998). The reliability of parent reports of pain in their child has been studied. In a study by Zisk, Grey, Medoff-Cooper, and Kain (2007), parents were asked to use a global impression of their child's pain (i.e., “Do you think your child is in pain?”) during home care of children (ages 5-10 years) after a limb fracture. When compared with the child's self-report of pain, the parental global impression demonstrated moderate sensitivity to pain on the first day but high sensitivity on the second. Voepel-Lewis et al. (2005), in a study of parents of children with mild to severe cognitive impairment, showed agreement between parents' scoring of pain using a modified Faces, Legs, Activity, Cry, and Consolability (FLACC) Behavioral Pain Assessment Scale and the child's self-rating of pain. In a further study using the FLACC scale, Malviya, Voepel-Lewis, Burke, Merkel, and Tait (2006) also found significant correlation between parent FLACC scores and child self-reporting of pain. The Noncommunicating Children's Pain Checklist (NCCPC) was developed from interviews of caregivers of persons with mental retardation (Breau, McGrath, Camfield, Rosmus, & Finley, 2000). Further study found that other caregivers could correctly classify children in pain using the NCCPC compared with ratings on a visual analog or numeric rating scale (Breau et al., 2001, Breau et al., 2002). There appears to be sufficient evidence that parent assessment of their child's pain coincides with self-reports or other observational tools. Methods Data Collection Sampling Parents who were primary caretakers of a child with Down syndrome (ages 6-14 years) were selected for the study. Only English-speaking parents were recruited. The study was approved by the Institutional Review Board at the University of Texas Health Science Center at San Antonio. Participants were sought from community organizations that provided services to children with Down syndrome and their parents, special education programs within school districts, and health care clinics. Recruitment of participants occurred through information flyers at recruitment sites. Parents who were interested in participating in the study contacted the researcher by phone or email. An information sheet was provided to the parent before the interview, and permission to audiotape individual parent interviews was obtained. Interviews were conducted in participants' homes, at their workplace, or by telephone. Data saturation was used as a measure of the number of participants needed. Although data saturation was evident at the tenth interview, two additional interviews were conducted to confirm that data saturation had been achieved. With these last two interviews, no new information was identified. Although parents were the study participants for data collection, characteristics of the child with Down syndrome were also considered to compare and analyze participant responses. Parents who cared for school-age children were selected for several reasons. First, by school age, parents would be more familiar with their child's behaviors and should be able to more clearly describe them. Second, major surgical and medical interventions for children with Down syndrome occur more commonly between birth and 5 years and might result in more severe pain experiences that would influence parent assessments and interventions. Focusing on the school-age period, which is usually a healthy period for most children, would provide an opportunity to explore everyday pain events that occur typically throughout childhood. Third, most school-age children with Down syndrome have the ability to verbalize. Using a group of children who have potential communication skills provided an opportunity to analyze how caregivers responded to the child's verbalization or self-reporting of pain. Interviewing The study used a qualitative method that applied ethnographic interview techniques and data analysis procedures. Ethnography has historically been used to study other cultures; in particular, it has been used to study a culture through the language of the culture. Open-ended semistructured questions were used to explore how parents assessed that their child was experiencing pain, what alternative causes other than pain were considered, and how decisions to intervene were made. Three types of questions were used: descriptive, structural, and contrast questions. Descriptive questions asked participants to talk about particular experiences, such as events and activities related to pain assessment and intervention for their child with Down syndrome (e.g., “Can you describe a time when your child was in pain?” “Can you describe what you usually do to relieve your child's pain?”). These questions were followed by more specific detailed questions that clarified and probed how participants used terms and phrases to describe their experiences (e.g., “How do you decide when to take action?). Hypothetic interaction questions were also used to help participants recall experiences (e.g., “If you wanted to tell your child's doctor that your child was in pain, what would you say?”). Structural questions elicited how participants organized their knowledge or sorted information (e.g., “What words, gestures, or signs does your child use to express pain?” “What comfort measures do you use to relieve your child's pain?” “If a written record were kept of behaviors that indicate pain in your child, which behaviors would be most important to record?”). By repeating structural questions in various ways throughout the interview, an exhaustive list of terms was obtained (e.g., “Which pain behaviors are most common for your child?” “Which pain behaviors are most serious?”). Contrast questions were used to explore the meaning of terms within those relationships (e.g., “How do you determine if your child is experiencing pain or experiencing distress from some other cause?”). Contrast questions explored if different terms/phrases were used to mean the same thing, or if the same term or phrase was used differently depending on the context of a response (e.g., “What is the difference between administering acetaminophen and making your child comfortable?”). Questions that asked respondents to rank their responses were also used to identify differences (e.g., “Which actions work best to relieve your child's pain?”) Data Analysis Data analysis followed Spradley's (1979) Developmental Research Sequence. This included domain analysis, taxonomic analysis, componential analysis, and theme discovery. The data analysis also included use of member checking and consultation with experts in the field of pain. The purpose of domain analysis was to identify broad categories of thought related to pain assessment and intervention as presented by participants (e.g., use of nonverbal pain expressions by the child). Domain analysis was conducted at the completion of each interview. A search for common domains across interviews occurred as each subsequent interview was analyzed. Taxonomic analysis began with a selection of a domain (e.g., nonverbal pain expressions) and identification of relationships between terms/phrases within the domain (e.g., pointing and crying are kinds of nonverbal expressions that may indicate pain). Once all the relationships were identified, a taxonomic outline was constructed (Table I). The goal of componential analysis was to explore the multiple relationships among terms, with a focus on their dimensions of contrast (e.g., What are the attributes of crying as a pain behavior? How are these attributes different from the attributes of changes in activity as a pain behavior? How does crying in the child compare with crying in the child's siblings?). Worksheets were created to show the terms and attributes in table format, and the presence or absence of each attribute was noted on the table for each participant (Table II). This componential analysis identified if there was agreement among parents about the attributes to describe a domain or if a domain was described differently by each parent. Finally, theme discovery was the discovering of general common features of the entire data set. Some cultural themes were explicitly expressed, such as parents stating that their child with Down syndrome expressed pain in a different way than the child's siblings. Other themes remained at the tacit level of knowledge and were inferred from the interview content. For example, parents in this study frequently described how children with Down syndrome had learned how to respond to pain even though they did not specifically state learning as a response topic.  | I.Child factors (aim #1: to describe how parents assess pain in their child with Down syndrome)A.Use of words B.Nonverbal expressions1.Pointing or showing 2.Crying 3.Change in motor activity 4.Emotional responses 5.Need for parent C.Differences from siblings D.Learning how to respond to pain II.Parent factors (aim #2: to examine the relationship between pain assessment and decisions by parents to intervene to relieve pain in the child with Down syndrome.A.Strategies1.Use of judgment 2.Differentiation from child's other emotional responses 3.Questioning of child 4.Identification of pain relief behaviors 5.Use of others to confirm problem B.Interventions1.Physical and pharmacologic 2.Psychologic and emotional | | | | |
| ∗ To assess cognitive ability, a deviation intelligence quotient (DIQ) was calculated for each child by dividing mental age by chronologic age and multiplying by 100. The DIQ is comparable to the intelligence quotient obtained from formal assessment testing (Fanurik et al., 1999). |
Member Checking Member checking was used to ensure that the data analysis reflected the meaning of the participants. Interview summaries were composed from the data analysis. Nine of the participants who had been interviewed were contacted through phone calls, e-mail, or personal visit and asked to confirm the accuracy of the interview summaries. All of the parents contacted for member checking agreed that the summaries reflected the intent of their interview responses. Because agreement was consistently found in nine participants, it was decided not to contact the remaining three participants. Findings Participant Characteristics Parents ranged in ages from 27 to 49 years. All of the parents reported that they and their spouses were primary caretakers for the child except when the child was at school. Ten mothers and two fathers participated. Ethnicity was as follows: African American 1; European American 4; and Hispanic 7. All of the parents had other children, with most being younger siblings to the child with Down syndrome. Three of the children with Down syndrome were twins, with the other twin not having Down syndrome. Child Characteristics The children's chronologic ages ranged from 6-12 years. Mental ages ranged from 3-9 years. Mental ages were not obtained for two of the children. When calculating a deviation intelligence quotient (DIQ), two children fell into the low normal range (72 and 75), five children had mild mental retardation (56-64), one child had moderate retardation (52), and two fell into the severe category (27 and 33). Over half of the children were reported to have had a major surgical event when they were younger. There did not appear to be any association between previous surgeries and frequency of the children's current pain as described by the parents, who reported anywhere from occasional pain to daily pain. None of the participants described that their children were experiencing any debilitating health alterations at the time of the study. Three of the children were experiencing regular acute pain episodes (leg pains, chest pain, and menstrual pain). Several of the children had experienced infections that would cause pain (e.g., pneumonia, strep throat). The remaining pain events included outpatient surgeries (e.g., ear and eye surgery) and everyday childhood injuries (e.g., falls, cuts). Common Themes Two major domains emerged: child factors and parent factors. Child factors as reported by parents included verbal and nonverbal pain expressions by the child, differences between the child with Down syndrome and the child's siblings regarding pain expression, and learning by the child how to communicate pain. Parent factors included parent strategies for pain assessment and interventions for pain relief. The following common themes emerged across domains. Theme 1: Being sensitive to verbal and behavioral attributes of pain in the child Parents of children with Down syndrome reported verbalizations and behaviors by the child that indicated pain. Most of the children in this study were reported to be able to verbally communicate pain through the use of location-specific words (“my tummy hurts”) or nonlocation specific words (“owie,” “it hurts”). Self-reporting also included pointing or showing an injury. Nonverbal pain indicators that were reported by parents included crying and changes in usual activities. All but one parent reported crying as a pain indicator with some reporting loud crying and others describing the cry more in terms of “whimpering.” Most parents reported a decrease in their child's usual activity with illnesses. Additional pain indicators that parents reported included refusing or being slower to do usual activities and becoming “more needy” of parents. Theme 2: Recognizing emotional and social responses to pain According to parent reports, their child with Down syndrome displayed emotional reactions to pain. Parents reported that anger, fear, or anxiety were seen as distress responses related to a pain event. Other emotional responses that were described included frustration, irritability, and acting out. Parents also reported the need to differentiate emotions related to pain and emotions for other reasons. Parents described having to differentiate if the emotions were related to fear, for seeking attention, or because the child's feelings were hurt. Theme 3: Identifying differences in pain expressions between child and siblings Parents expressed beliefs that the child with Down syndrome was less verbal, slower to complain, and less bothered by injuries than the child's normally developing siblings. They required more directed questioning (“Do you hurt?”) and more direct instruction (“Show me”). The use of questioning appeared to be an important component for pain, assessment because parents reported that their child with Down syndrome might not spontaneously report pain, especially pain related to an illness (e.g., ear infection). Learning appropriate responses to pain by the child was also an underlying and recurring idea in interviews. Parents recognized that their children learned in a different way from other children. They tended to learn responses based on what they had seen used by others or what had worked in the past. For example, one parent reported that the child would request hot soup because the child had experienced relief after eating hot soup in the past. Parents expressed uncertainty in assessing pain in their child with Down syndrome. This uncertainty was not evident when they discussed their normally developing children. Theme 4: Making decisions to intervene based on physical and emotional responses of the child Once a potential pain event was recognized, the usual order for intervention involved: 1) “checking out” the severity of the injury or illness; 2) providing instructions to the child; 3) comforting the child; 4) attending to the illness or injury through physical and psychologic care; and 5) contacting the child's physician if the pain did not resolve. Most parents in this study reported that the same strategies were also used for the child's siblings. Parents judged the pain event by the correlation with other signs of injury or illness, by experiences with the same pain in the child in the past, or by seeing the injury happen. Parents responded based on their knowledge of the pain experience and their familiarity with the child's usual state. Parents reported not making a “big to-do” about minor injuries and encouraging the child to continue with activities. When judging the seriousness of pain, parents reported that they used the length of time the child complained rather than how intense the pain appeared to be for the child. Comfort measures were the most commonly used interventions. These measures included acknowledging that the injury had occurred, providing verbal reassurance, being with the child, and providing physical contact such as holding, rocking, or kissing. Other interventions that were used included physical interventions such as “cleaning up” injuries and external measures such as heat/cold or massage. In addition to these comfort measures, other psychologic or emotional interventions included use of comfort foods, use of distraction through reading or cartoons, and use of external measures such as band-aids. Most parents reported the use of various over-the-counter medicines, particularly acetaminophen and ibuprofen. Parents stated that they used these drugs sparingly, and there was a general hesitancy to use prescription medications for pain. Most parents stated that this hesitancy was based on personal beliefs about use of drugs in general, and no differences were noted in the use of pain medication between the child with Down syndrome and the child's siblings. However, parents readily acknowledged that if their child were having severe pain, stronger pain medication would be used. Discussion The pain indicators that parents in this study identified were similar to pain indicators in the literature. It would appear that the behaviors that parents of children with Down syndrome use to assess for pain include the same behaviors seen in other children, although as described in theme 1, some variations in verbal and behavioral attributes existed. In theme 2, the study findings demonstrated a relationship between pain and emotions in the child with Down syndrome. The developmental attributes of Down syndrome are likely explanations of the child's emotional experiences with pain. Typically, as a child develops the ability to see a stressor from different angles, the child moves from primarily responding to distress with emotions to engaging in other behaviors that resolve the problem. It can be inferred that children with Down syndrome who have limitations in problem-solving abilities may continue to function at an emotional level. Although the child's sibling might also have been described as “dramatic,” the sibling's emotional behaviors were described more in relation to verbalization that communicated what had happened and what was needed of the parent. Little was found in the review of the literature specific to pain and emotional expressions in children with cognitive delays. Benini et al. (2004) reported that children with Down syndrome who expressed more fear also indicated higher pain ratings. Gilbert-MacLeod, Craig, Rocha, and Mathias (2000) found that older children with mental delays engaged in more anger responses related to pain. Zabalia and Duchaux (2007) investigated pain coping strategies of school-age children with intellectual disabilities and found that these children were more likely to seek social support but less likely to use problem solving during personal painful situations. Cognitive functioning may explain the differences in the ability to comprehend the nature of the pain experience and why emotions may predominate over thoughts in the pain experience and the resulting pain expression of the child. Compared with pain responses in siblings, most of the parents reported that the child with Down syndrome was less verbal, less expressive, slower to complain, and less bothered by injuries (theme 3). The parents defined this as having a high pain threshold or high pain tolerance. This description of high pain threshold may come from earlier beliefs that persons with mental delays were more likely to be pain insensitive (Biersdorff, 1994, Breau et al., 2003, Fanurik et al., 1999). Earlier research indicates that persons with Down syndrome express pain more slowly and less precisely, and the present study supports these findings. Whether or not there is a difference in pain threshold or tolerance was not within the scope of this study. In theme 3, parents expressed uncertainty in assessing pain in their child with Down syndrome. This uncertainty was not evident when they discussed their normally developing children. Some parents reported that they had missed an illness or injury when the child was younger, because the child did not complain or demonstrate pain in the way that the parent would have expected. Most parents had developed some systematic way of assessing the child that involved comparison with the child's usual behaviors and the ruling out of other causes, as reflected in theme 4. Parents reported they felt less uncertainty once the child became verbal. The concept of uncertainty was found in the literature review (Carter et al., 2002, Hennequin et al., 2003). Although a sense of uncertainty about pain is probably experienced by all parents of young, preverbal children, the continued uncertainty with an older child places the experience in a different context and may alter the assessment and pain management decisions. Normally, maturation and life experiences change pain expression as the child gets older. Because maturation in the child with cognitive impairment differs from normally developing children, interpretation of life experiences may result in different pain expressions by the child. This difference from what is usually expected may explain the uncertainty with assessment. Learning appropriate responses for pain was an underlying and recurring idea in interviews (theme 3). Parents recognized that their children learned in a different way from typical children. They tended to learn responses based on what they had seen in others (e.g., wanting the same as a sibling had received) or what had worked in the past for other pain events. Research has shown that children with Down syndrome do not perform as well on tasks that require executive cognitive functions (Pennington, Moon, Edgin, Stedron, & Nadel, 2003). The child may have learned how to respond but not how to interpret the appropriateness of the response. For example, when seeking the parent's presence after a pain event, the child may come to the parent but may not be able to recognize the need to tell or show the parent the reason for coming. In contrast, the child's siblings were reported as spontaneously seeking out the parent and explaining what was occurring. The primary limitation of the present study is its transferability. Because participants reflected their personal, social, and health care situation, these were reflected in their pain assessment and intervention practices as well. Although from diverse ethnic backgrounds, all of the parents were English speakers, were educated at the college level, and had spouses that were available and active in the child's care. Because Down syndrome occurs worldwide, the ability of the study findings to transfer to parents who live in other locations and from other backgrounds cannot be stated. Another limitation is in the ability to correlate if earlier pain experiences (e.g., surgeries or serious illness when younger) by the children affected their current pain behaviors. The study findings did not show any correlation, but the sample was small. A third limitation is the use of a recall method. The possibility exists that parents might not have recalled and reported past events accurately or may have recalled only those unusual or more severe pain experiences. This last limitation was minimized in two ways. The parents who volunteered for this study were aware of the topic in advance and had time to think about their child's pain experiences before the interview. In addition, the in-depth interview process asked about usual pain experiences and allowed for discrepancies or conflicting statements to be clarified during the interviews. Summary The study findings have implications for current practice and further research. In the health care setting, the clinician should seek out information from parents about the child's language capabilities, behaviors that indicate pain in the child, and strategies and interventions that the parent has found to comfort the child. Self-reporting from the child should be tried if the child is verbal. Clinicians must recognize that the parent may play an even more important role in interpreting pain behaviors and in identifying strategies for comforting the child in the health care setting than might be needed for other children. Clinicians should also involve parents in decision making about pharmacologic interventions to ensure that parents are comfortable with the medications used. Additional research on pain expression is needed regarding the child's learning of help-seeking behaviors. A study investigating the ability to teach help-seeking behaviors in children with Down syndrome may lead to strategies for clearer communication of pain between child and caregivers. Another potential area for study is pain intensity. The parents in this study did not differentiate the child's pain expression in relation to pain intensity except when describing crying. For most pain, parents used judgment about the pain event to determine intensity (e.g., falling produces mild pain, infections may produce more pain) or duration of the pain expression to gauge seriousness. Parent vigilance in monitoring their child for illnesses and injuries is an area for research. Further study to determine when parents bring their child to the health care provider is needed to determine how any delays in the child's reporting of pain may affect their health care contact. The literature about children with Down syndrome that focuses on the child's medical issues and cognitive delays creates a picture of the child that reflects differences from normally developing children. While these differences exist, the findings of the present study support that children with Down syndrome are similar to normally developing children in many ways. The parents in this study acknowledged their child's differences and integrated the child's special needs into the day-to-day functioning of a normal family. The goal of the present research was to present the pain dimensions of children with Down syndrome as described by the person who knows the child best, i.e., the child's caregiver. This study, in exploring how parents assess and intervene to relieve pain in their child with Down syndrome, contributes to the knowledge about pain expression in this population of children. The qualitative method for data collection and analysis provided a richness of data where all of the dimensions of pain expression emerged as well as the social and interactive nature of pain assessment and management. References American Academy of Pediatrics & American Pain Society, 2001. 1.American Academy of Pediatrics & American Pain Society. The assessment and management of acute pain in infants, children and adolescents. Pediatrics. 2001;108(3):793–797. Benini et al., 2004. 2.Benini F, Trapanotto M, Gobber D, Agosto C, Carli G, Drigo P, et al. Evaluating pain induced by venipuncture in pediatric patients with developmental delay. Clinical Journal of Pain. 2004;20(3):163. Biersdorff, 1994. 3.Biersdorff KK. Incidence of significantly altered pain experience among individuals with developmental disabilities. American Journal of Mental Retardation. 1994;98(5):619–631. MEDLINE Breau et al., 2001. 4.Breau LM, Camfield C, McGrath PJ, Rosmus C, Finley GA. Measuring pain accurately in children with cognitive impairments: Refinement of a caregiver scale. The Journal of Pediatrics. 2001;138(5):721–727. Abstract | Full Text |
Full-Text PDF (78 KB)
|
CrossRef
Breau et al., 2003. 5.Breau LM, MacLaren J, McGrath PJ, Camfield CS, Finley A. Caregivers' beliefs regarding pain in children with cognitive impairment: Relation between pain sensation and reaction increases with severity of impairment. The Clinical Journal of Pain. 2003;19:335–344. MEDLINE |
CrossRef
Breau et al., 2002. 6.Breau LM, McGrath PJ, Camfield CS, Finley GA. Psychometric properties of the Noncommunicating Children's Pain Checklist–Revised. Pain. 2002;99:349–357. Abstract | Full Text |
Full-Text PDF (117 KB)
|
CrossRef
Breau et al., 2000. 7.Breau LM, McGrath PJ, Camfield C, Rosmus C, Finley GA. Preliminary validation of an observational pain checklist for persons with cognitive impairments and inability to communicate verbally. Developmental Medicine & Child Neurology. 2000;42:609–616. MEDLINE |
CrossRef
Carter et al., 2002. 8.Carter B, McArthur E, Cunliff M. Dealing with uncertainty: Parental assessment of pain in their children with profound special needs. Journal of Advance Nursing Science. 2002;38(5):449–457. Defrin et al., 2004. 9.Defrin R, Pick CG, Peretz C, Carmeli E. A quantitative somatosensory testing of pain threshold in individuals with mental retardation. Pain. 2004;108:58–66. Abstract | Full Text |
Full-Text PDF (179 KB)
|
CrossRef
Dierssen et al., 2006. 10.Dierssen M, Ortiz-Abalia J, Arqué G, Martinez de Lagrán M, Fillat C. Pitfalls and hopes in Down syndrome therapeutic approaches: In search for evidence-based treatments. Behavior Genetics. 2006;36(3):454–468. MEDLINE |
CrossRef
Fanurik et al., 1999. 11.Fanurik D, Koh JL, Schmitz ML, Harrison RD, Conrad TM. Children with cognitive impairment: Parent report of pain and coping. Developmental and Behavioral Pediatrics. 1999;20(4):228–234. Gilbert-MacLeod et al., 2000. 12.Gilbert-MacLeod CA, Craig KD, Rocha EM, Mathias MD. Everyday pain responses in children with and without developmental delays. Journal of Pediatric Psychology. 2000;25(5):301–308. MEDLINE |
CrossRef
Hennequin et al., 2003. 13.Hennequin M, Faulks D, Allison PJ. Parents' ability to perceive pain experienced by their child with Down syndrome. Journal of Orofacial Pain. 2003;17(4):347–353. MEDLINE Hennequin et al., 2000. 14.Hennequin M, Morin C, Feine JS. Pain expression and stimulus localization in individuals with Down's syndrome. The Lancet. 2000;356:1882–1887. Herr et al., 2006. 15.Herr K, Coyne PJ, Key T, Manworren R, McCaffery M, Merkel S, et al. Pain assessment in the nonverbal patient: Position statement with clinical practice recommendations. Pain Management Nursing. 2006;7(2):44–52. Abstract | Full Text |
Full-Text PDF (125 KB)
|
CrossRef
Hunt et al., 2003. 16.Hunt A, Mastroyannopoulou K, Goldman A, Seers K. Not knowing—The problem of pain in children with severe neurological impairment. International Journal of Nursing Studies. 2003;40:171–183. Abstract | Full Text |
Full-Text PDF (146 KB)
|
CrossRef
Malviya et al., 2006. 17.Malviya S, Voepel-Lewis T, Burke C, Merkel S, Tait A. The revised FLACC observational tool: Improved reliability and validity for pain assessment in children with cognitive impairment. Pediatric Anesthesia. 2006;16:258–265. MEDLINE |
CrossRef
McGrath et al., 1998. 18.McGrath PJ, Rosmus C, Camfield C, Campbell MA, Hennigar A. Behaviors caregivers use to determine pain in nonverbal, cognitively impaired individuals. Developmental Medicine & Child Neurology. 1998;40:340–343. MEDLINE |
CrossRef
Oberlander and Craig, 2003. 19.Oberlander TF, Craig KD. Pain and children with developmental disabilities. In: Schechter NL, Berde CB, Yaster M editor. Pain in infants, children, and adolescents. 2nd ed.. Philadelphia, PA: Lippincott Williams & Wilkins; 2003;p. 599–619. Pennington et al., 2003. 20.Pennington BF, Moon J, Edgin J, Stedron J, Nadel L. The neuropsychology of Down syndrome: Evidence for hippocampal dysfunction. Child Development. 2003;24(1):75–93. Spradley, 1979. 21.Spradley JP. The ethnographic interview. Belmont, CA: Wadsworth Group/Thomson Learning; 1979;. Vicari, 2006. 22.Vicari S. Motor development and neuropsychological patterns in persons with Down syndrome. Behavior Genetics. 2006;36(3):355–364. MEDLINE |
CrossRef
Voepel-Lewis et al., 2005. 23.Voepel-Lewis T, Malviya S, Tait AR. Validity of parent ratings as proxy measures of pain in children with cognitive impairment. Pain Management Nursing. 2005;6(4):168–174. Abstract | Full Text |
Full-Text PDF (229 KB)
|
CrossRef
Zabalia and Duchaux, 2007. 24.Zabalia M, Duchaux C. Stratégies de faire-face à la douleur chez des enfants porteur de déficience intellectuelle. [Pain coping strategies of children with intellectual disabilities]. Revue Franchophone de la Déficience Intellectuelle [Francophone Intellectual Disability Review]. 2007;17:53–64. Zisk et al., 2007. 25.Zisk RY, Grey G, Medoff-Cooper B, Kain ZN. Accuracy of parental-global-impression of children's acute pain. Pain Management Nursing. 2007;8(2):72–76. Abstract | Full Text |
Full-Text PDF (105 KB)
|
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University of Texas Health Science Center, San Antonio, Texas  Address correspondence to Roswitha B. Davies, Assistant Professor, Department of Nursing Education, San Antonio College, San Antonio, TX 78212.
Conducted to fulfill the dissertation requirements for a PhD in Nursing at the University of Texas Health Science Center at San Antonio. Supported by a research grant from the American Society for Pain Management Nursing. PII: S1524-9042(09)00105-2 doi:10.1016/j.pmn.2009.09.003 © 2009 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved. | |
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