**Abstract**

Communication vulnerable children need an alternative way to express their pain to receive appropriate pain management. In this chapter, the concept of communication vulnerability will be explained by using the social-communication model of pain as a theoretical framework. The concept of pain is difficult to describe due to its subjective nature and individuals' different experiences to pain. Clinicians and researchers find it challenging to understand the dynamic interplay between the biological, psychological and social determinants of pain. Understanding any episode of acute or chronic pain therefore necessitates considering the holistic pain picture to analyse the essentials at biological, psychological and social levels. The chapter concludes with suggestions to use augmentative and alternative strategies to support communication vulnerable children to communicate their pain.

**Keywords:** augmentative and alternative communication (AAC), disabilities, care, healthcare professional, paediatric patient, social-communication model of pain

## **1. Introduction**

Pain is intrinsically private, and the concept of pain is difficult to describe and assess due to its subjective nature and individuals' unique experiences of pain [1, 2]. Up until the mid-1980s, clinicians believed that infants, toddlers and persons with disabilities, specifically those with significant communication difficulties, either do not have pain or may have very high pain thresholds [3–5]. These myths and beliefs were reinforced by McCaffery's widely accepted definition of pain at that time that stated that "pain is what the person says it is and exists whenever he or she says it does" [6, p. 95]. By default, McCaffery's definition therefore suggested that all persons with the inability to communicate their pain verbally (including the aforementioned) may not have pain.

In addition to their limited verbal ability to express pain, communication vulnerable children's neurology may also impact on their ability to show other tell-tale signs of pain that transform the parts of the brain responsible for the expression of pain [5]. For this reason, clinicians repeatedly overlooked other signs of pain [4], such as changes in the children's behaviour (withdrawal, acting clownish, having mood changes, displaying aggressive behaviour or exhibiting extreme tantrums) or changes in positioning (refusing to use the body part where pain is). This is because children with communication challenges may not display pain in the typical ways such as by crying or through facial changes [7–10]. Clinicians often mistakenly regard these kinds of "different reactions to pain" as challenging behaviour and not as children's alternative attempts of trying to express their pain [11].

Lately, clinicians have started to acknowledge that the inability to communicate pain verbally does not negate the likelihood that a person is in pain or that they require applicable pain-relieving treatment [3, 10]. The International Association for the Study of Pain (IASP) updated the definition of pain in July 2020 [2, p. 2] to: "An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage". According to Raja et al. [2] the IASP also added six key notes as an expansion to the definition and to provide further context to the definition and the etymology of the word "pain." Additional notes to the latest pain definition for example highlight that a person's report of their pain should be acknowledged and respected and that verbal expressions of pain is only one of many behaviours to express pain [2]. Nevertheless, irrespective of patients' ability or inability to verbally self-report their pain, it remains the ethical obligation of all clinicians to acknowledge and relieve the most vulnerable patients' pain [12].

### **2. Communication vulnerability**

Children with severe physical, sensory and/or cognitive disabilities affecting their receptive and expressive communication may not be able to verbally communicate their pain and other pain-related experiences [10, 13]. Children with languages or cultures different to those of the treating clinicians or with limited proficiency in the latter's language often do not have the vocabulary to express their pain [14]. Furthermore, children who are receiving treatment in intensive care units – where medical intervention such as sedation, intubation or tracheotomy can influence their ability to verbally communicate – as well as children receiving palliative end-of-life support may also not be able to communicate verbally [13]. Authors refer to these groups of children as communication vulnerable [13–15]. Communication vulnerability is defined as a reduced ability in respect of expressive and/or receptive communication and can involve permanent vulnerability (such as children with severe communication disabilities) or temporary vulnerability (such as patients in critical care units receiving medical interventions that may influence their ability to speak) [16, 17].

The inability to express pain verbally may result in communication breakdowns between the child and the clinician, which could result in risks such as nontreatment, adverse medical outcomes and increased anxiety for both patients and clinicians [18]. Clinicians often find it demanding to assess pain in communication vulnerable children [7, 19], as they have to attempt to interpret the children's bodily movements, facial expressions and physiological signs [7]. As mentioned earlier, children with communication disabilities may express their pain in atypical ways that could influence clinicians' interpretation of the children's pain [10, 11, 19]. In the latest recommendations for clinicians to follow during pain assessment of those unable to self-report, Herr et al. proposed that as a first step, clinicians should become aware of potential causes of pain [20]. The second step in pain assessment is to try to obtain self-report from all patients [20]. Therefore, it is vital that alternative means of communication should be investigated to enable children with severe communication difficulties to self-report their pain.

Hay et al. [21] promoted the use of self-reporting as the primary method for measuring the intensity and other features of pain. Thus, it was recommended that

**141**

their pain [32].

*Supporting Communication Vulnerable Children to Communicate Their Pain*

parents' proxy reports of their children's pain should only be used once the children's reports were in doubt [21, 22]. Research has confirmed that speaking children themselves can give a clear self-report of their pain experience by verbally expressing their pain or using various pain assessment tools such as the Coloured Analogue Scale or the Faces Pain Scale-Revised [23]. However, Schiavenato and Craig [24] are of the opinion that pain assessment tools do not do justice to a patient's pain experience as they oversimplify the demands for rating pain intensity without taking the type of pain into consideration. For this reason, a possible solution should be found for how communication vulnerable children can self-report their pain in ways other

Clinicians' expertise to support communication vulnerable children in pain depends on the availability of reliable and valid information about the existence and precise nature of the child's distress [25]. Self-report and observational measures of pain can be reviewed from the perspective of a model of human communication [26]. Therefore, to gain a better understanding of this complex pain communication process, clinicians and researchers need to grasp the challenges that children with disabilities – and particularly those who are communication vulnerable – may encounter when trying to express their pain. The social communication model of pain [26, 27] offers an inclusive theoretical framework to be used in this chapter, because it explains the dynamic interaction between the biological, psychological and social determinants of pain [28]. An adapted social communication model of pain for communication vulnerable children based on the model proposed by Craig

Communication plays an important part in any action that aims to improve health [29]. Communication is a social, dynamic and interchanging reciprocal process that involves persons (acting as a sender or receiver) [30]. Communication comprises verbal (speech) as well as non-verbal modes (gestures, a shared glance, facial expression) [31]. Symbols (abstract or concrete) are used to convey information from the sender to the receiver in order to achieve a shared meaning in a specific context or environment [30]. In other words, communication involves sender(s) and receiver(s) conveying information through a communication channel. Effective communication occurs when the intent and meaning of one person (e.g. the sender) is understood by another person (e.g. the receiver) [31]. For communication vulnerable children, this communication process poses a serious challenge, due to their inability to communicate verbally (i.e. the communication intent is lost if the receiver does not understand the communication channel used by the sender). Although these children may have the desire to communicate their pain, research indicates that communication vulnerable children often opt not to communicate their pain because their previous communication attempts were ignored, or simply because it takes too much physical effort trying to communicate

The social communication model of pain was developed as a framework to explain how pain is experienced and to describe the multifaceted communication process required to adequately express and interpret pain and to have pain understood by others [26, 27]. The social communication model of pain underlines both the role of the sender who is the person in pain (e.g. the communication vulnerable child) and the ability of the receiver as the observer of the pain (e.g. clinicians) in understanding the experience of pain. Biomedical models, in contrast, focus on the sensory characteristics of pain, with no emphasis on the social factors of pain

*DOI: http://dx.doi.org/10.5772/intechopen.93588*

[27, 28] warrants further discussion in this chapter.

**3. Social communication model of pain**

than by verbal accounts.

#### *Supporting Communication Vulnerable Children to Communicate Their Pain DOI: http://dx.doi.org/10.5772/intechopen.93588*

*Pain Management - Practices, Novel Therapies and Bioactives*

patients' pain [12].

**2. Communication vulnerability**

that may influence their ability to speak) [16, 17].

communication difficulties to self-report their pain.

children with communication challenges may not display pain in the typical ways such as by crying or through facial changes [7–10]. Clinicians often mistakenly regard these kinds of "different reactions to pain" as challenging behaviour and not

pain verbally does not negate the likelihood that a person is in pain or that they require applicable pain-relieving treatment [3, 10]. The International Association for the Study of Pain (IASP) updated the definition of pain in July 2020 [2, p. 2] to: "An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage". According to Raja et al. [2] the IASP also added six key notes as an expansion to the definition and to provide further context to the definition and the etymology of the word "pain." Additional notes to the latest pain definition for example highlight that a person's report of their pain should be acknowledged and respected and that verbal expressions of pain is only one of many behaviours to express pain [2]. Nevertheless, irrespective of patients' ability or inability to verbally self-report their pain, it remains the ethical obligation of all clinicians to acknowledge and relieve the most vulnerable

Lately, clinicians have started to acknowledge that the inability to communicate

Children with severe physical, sensory and/or cognitive disabilities affecting their receptive and expressive communication may not be able to verbally communicate their pain and other pain-related experiences [10, 13]. Children with languages or cultures different to those of the treating clinicians or with limited proficiency in the latter's language often do not have the vocabulary to express their pain [14]. Furthermore, children who are receiving treatment in intensive care units – where medical intervention such as sedation, intubation or tracheotomy can influence their ability to verbally communicate – as well as children receiving palliative end-of-life support may also not be able to communicate verbally [13]. Authors refer to these groups of children as communication vulnerable [13–15]. Communication vulnerability is defined as a reduced ability in respect of expressive and/or receptive communication and can involve permanent vulnerability (such as children with severe communication disabilities) or temporary vulnerability (such as patients in critical care units receiving medical interventions

The inability to express pain verbally may result in communication breakdowns

Hay et al. [21] promoted the use of self-reporting as the primary method for measuring the intensity and other features of pain. Thus, it was recommended that

between the child and the clinician, which could result in risks such as nontreatment, adverse medical outcomes and increased anxiety for both patients and clinicians [18]. Clinicians often find it demanding to assess pain in communication vulnerable children [7, 19], as they have to attempt to interpret the children's bodily movements, facial expressions and physiological signs [7]. As mentioned earlier, children with communication disabilities may express their pain in atypical ways that could influence clinicians' interpretation of the children's pain [10, 11, 19]. In the latest recommendations for clinicians to follow during pain assessment of those unable to self-report, Herr et al. proposed that as a first step, clinicians should become aware of potential causes of pain [20]. The second step in pain assessment is to try to obtain self-report from all patients [20]. Therefore, it is vital that alternative means of communication should be investigated to enable children with severe

as children's alternative attempts of trying to express their pain [11].

**140**

parents' proxy reports of their children's pain should only be used once the children's reports were in doubt [21, 22]. Research has confirmed that speaking children themselves can give a clear self-report of their pain experience by verbally expressing their pain or using various pain assessment tools such as the Coloured Analogue Scale or the Faces Pain Scale-Revised [23]. However, Schiavenato and Craig [24] are of the opinion that pain assessment tools do not do justice to a patient's pain experience as they oversimplify the demands for rating pain intensity without taking the type of pain into consideration. For this reason, a possible solution should be found for how communication vulnerable children can self-report their pain in ways other than by verbal accounts.

Clinicians' expertise to support communication vulnerable children in pain depends on the availability of reliable and valid information about the existence and precise nature of the child's distress [25]. Self-report and observational measures of pain can be reviewed from the perspective of a model of human communication [26]. Therefore, to gain a better understanding of this complex pain communication process, clinicians and researchers need to grasp the challenges that children with disabilities – and particularly those who are communication vulnerable – may encounter when trying to express their pain. The social communication model of pain [26, 27] offers an inclusive theoretical framework to be used in this chapter, because it explains the dynamic interaction between the biological, psychological and social determinants of pain [28]. An adapted social communication model of pain for communication vulnerable children based on the model proposed by Craig [27, 28] warrants further discussion in this chapter.
