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Continuing professional development Fundamentals of chronic pain in children and young people. Part 2 NCYP498 Forgeron PA, Stinson J (2014) Fundamentals of chronic pain in children and young people. Part 2. Nursing Children and Young People. 26, 9, 31-36. Date of submission: January 9 2014. Date of acceptance: June 4 2014. Correspondence Abstract [email protected] Chronic pain is common in childhood and can have severe physical and psychological consequences but, unlike acute pain, it is not always recognised by nurses and other health professionals. A holistic and multidisciplinary approach to treatment is required and nurses can play a significant role in helping children and families to cope with the negative effects of the condition. The first part of this article, published in October, looked at the prevalence, anatomy and physiology of pain, and factors associated with chronic pain and its consequences. In part 2, assessment strategies as well as pharmacological and psychological interventions, are discussed, along with self-help programmes and strategies that can be used to aid sleep and help the child at school manage their pain. Aims and intended learning outcomes This article aims to provide an evidenced-informed review of the fundamental nursing care practices when working with children and young people experiencing chronic pain and their families. After completing the article and time out activities you will be able to: ■ Outline assessment of chronic pain in children and understand the range of self-report measures. ■ Summarise the various treatment strategies that comprise a multimodal approach to managing children’s chronic pain. ■ Discuss the nursing care associated with managing a child or young person who has chronic pain. Treatment Once treatable physical causes for the child or young person with chronic pain have been eliminated, most children and parents need and are willing to accept an explanation that the recurrent or persistent pain has a physiologic basis that can be aggravated by stress and worry. This information helps prevent and/or reduce the continued search for a cause of the pain (von Baeyer 2006), and helps children and parents engage in treatment. The goal of treatment is to decrease pain and, more importantly, to reduce the pain-related disability to maximise function and improve quality of life. This approach includes specific treatments to NURSING CHILDREN AND YOUNG PEOPLE target possible underlying pain mechanisms, as well as symptom-focused management to address pain, anxiety, depressive mood and sleep disturbances. Given the goals of treatment, interdisciplinary team approaches to chronic pain management are most effective because these teams include professionals with the necessary expertise to target the multiple ways a child or young person’s life can be disrupted by chronic pain (Eccleston et al 2003, Singh et al 2004). However, this does not mean that an interdisciplinary specialist team must consult and manage all young people with chronic pain. Primary care practitioners can manage many of these young patients, collaborating with other experts and involving services such as community psychologists, physiotherapists and school nurses. One of the first things nurses can do to help a child or young person with chronic pain is to acknowledge that they are experiencing pain. Children and parents frequently have a sense of responsibility for the pain, which is exacerbated by clinicians and others who may insinuate that it is not real, especially if there is no known cause. Children and parents are told that the pain is psychogenic – originating from the mind – and frequently report that healthcare professionals tell them their pain is ‘all in your head’. This, however, is inaccurate. As described in part 1 of this article, published in October’s Nursing Children and Paula A Forgeron is assistant professor, school of nursing, University of Ottawa, Canada Jennifer Stinson is Mary Jo Haddad nursing chair in child health, Peter Lougheed CIHR new investigator scientist, Child Health Evaluative Sciences, and nurse practitioner, Chronic Pain Program, Hospital for Sick Children, and associate professor, Lawrence S Bloomberg, faculty of nursing, University of Toronto, Canada Conflict of interest None declared Keywords Adolescence, child, children’s nursing, chronic diseases, chronic pain, humans, paediatrics, pain, pain relief This article has been subject to open peer review and checked using antiplagiarism software Author guidelines rcnpublishing.com/r/ ncyp-author-guidelines November 2014 | Volume 26 | Number 9 31 Downloaded from RCNi.com by ${individualUser.displayName} on Jul 03, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved. Continuing professional development Young People, pain without an identified cause can occur due to the plasticity of the central nervous system, which results in changes in the body’s pain processing. Now do time out 1. Time out 1 Pain scales Name or compile a list of the pain scales that you use in your practice or have read about as part of an education course. Assessment Assessment is the foundation of pain management. Chronic pain assessment builds on components of acute pain assessment – location, frequency, onset, duration, variability, exacerbating and alleviating factors, and intensity – but requires additional assessment from a holistic perspective and begins with a complete medical and pain history. Validated self-report measures such as the Pieces of Hurt tool (Hester 1979), Faces Pain Scale-Revised (Hicks et al 2001), and visual analogue scales (Scott et al 1977) have been recommended for use with children to capture pain intensity (Stinson et al 2006). To understand patterns of a child’s pain and identify potential triggers, it is also important to track their pain experience over time. This can be accomplished by using prospective pain diaries that the child or parents complete to capture the number of pain-free days, lowest pain intensity, most severe pain, average pain and activities during the day. Daily pain diaries rely less on recall and provide a more accurate picture of the pattern of a child’s pain (McGrath et al 2008). Electronic diaries have also been developed that include alerts and alarms to remind children to complete the diary in real time, helping decrease recall bias (Stinson et al 2007). One such diary is the Pain Squad smartphone app for young people with persistent and recurrent pain due to cancer, developed with the Hospital for Sick Children in Toronto (Stinson et al 2013). In addition to the pain, it is necessary to assess a child and young person’s physical, emotional health, social functioning and quality of sleep. There is a range of multidimensional pain tools to capture information about these components. The Bath Adolescent Pain Questionnaire (Eccleston et al 2005) is a multidimensional self-report measure that provides an overview of the effects of chronic pain on various functional domains: social, psychological and physical. This measure is helpful because it offers an overview, and the subscales can highlight areas of function requiring more detailed assessment, such as depression and anxiety. Measures used to assess the effectiveness of pharmacological, physical and psychological strategies to manage pain have been recommended by the Pediatric Initiative on Methods, Measurement and Pain Assessment in Clinical Trials. (McGrath et al 2008). The measures reviewed and suggested for use in children’s pain research trials (see McGrath et al 2008) Table 1 Overview of interventions for treating chronic pain in children and young people Pharmacological interventions Physical interventions Psychological interventions School/social interventions ■ Non-steroidal anti-inflammatory drugs and paracetamol. ■ Opioid analgesics. ■ Anticonvulsants. ■ Antidepressants. ■ Anxiolytics. ■ Nerve blocks. ■ Exercise, including yoga. ■ Thermal stimulation: heat, cold, desensitisation. ■ Physiotherapy. ■ Occupational therapy. ■ Massage. ■ Acupuncture. ■ Education about pain experience and pain problem. ■ Sleep hygiene. ■ Relaxation. ■ Biofeedback. ■ Behaviour therapies. ■ Cognitive therapies. ■ Cognitive behaviour therapy. ■ Acceptance and commitment therapy. ■ Mindfulness therapy. ■ Family therapies. ■ Psychotherapy. ■ Decreased school workload, with a gradual increase in workload as pain management improves. ■ Extended timeline for school project(s). ■ Physical accommodation: seating, use of a lift, permission to stand and stretch. ■ Permission to participate in extracurricular activities despite absentee record. ■ Encourage to contact friends. (Adapted from Stinson and Reid 2013) 32 November 2014 | Volume 26 | Number 9 NURSING CHILDREN AND YOUNG PEOPLE Downloaded from RCNi.com by ${individualUser.displayName} on Jul 03, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved. are not only psychometrically sound, but lend themselves for use in the clinical area and have normative data for comparison. Therefore, reliable and valid measures are available to help nurses carry out holistic pain assessment with young patients. Schooling is a major aspect of social role functioning that is negatively affected by chronic pain and requires assessment. Most children with pain conditions frequently miss school and their pain will also interfere with their ability to sustain the necessary focus and concentration to study (Logan et al 2008, Dick and Pillai Riddell 2010). It is important to assess the amount of schooling that is missed, as well as the changes in school performance and perceived barriers to academic success. Nurses can use this information to advocate for schools to take these issues into account and help a child with chronic pain remain in school or return to school. Assessment strategies to capture baseline data should be used for reassessment, and the data can also provide a benchmark to determine approaches to ongoing treatments. It is helpful for all children with pain, and their parents, to know that the treatment approach is rehabilitation and that improvements in chronic pain conditions will be seen gradually over weeks and months, rather than days. Interventions Table 1 provides an overview of the pharmacological, physical, and psychosocial and school strategies that can be used to help children with chronic pain. It offers a summary of interventions based on the domain of treatment. Pharmacological interventions Seldom are interventional techniques, such as regional anaesthesia, used in managing chronic pain in children because there is no strong evidence to support their effectiveness (Perez et al 2010). Most medications for chronic pain are administered orally, so patients do not need to be in hospital. The World Health Organization’s (WHO) analgesic ladder provides a framework for administering medications to alleviate pain. The same general principles can be used for children and young people with chronic pain, although there is limited research to support their use in young patients (WHO 2012, Zernikow et al 2012). The type of analgesia administered is linked to the type of pain. Paracetamol – known as acetaminophen in Canada, the US and Japan – and/or non-steroidal anti-inflammatory drugs (NSAIDS) are recommended for mild to moderate pain, and opioids for moderate to severe pain. When adding a medication from another class, it is advisable to continue the previous medication – such as paracetamol or a NSAID, with the addition of NURSING CHILDREN AND YOUNG PEOPLE an opioid – as the medications from each class alleviate pain differently. Adjuvant medications are those whose primary classification is not analgesics, but that have a role in treating specific types of pain. Anticonvulsants and tricyclic antidepressants are effective for various types of chronic pain (such as neuropathic) and are used frequently to treat children’s chronic pain. Medications from these two classes may be given on their own or in combination, depending on the type of pain. Other medications have also been used to alleviate complex pain – for example, ketamine and lidocaine – but these must be ordered and administered cautiously by trained professionals. In children and young people, long-term opioid use is generally ineffective, but may be appropriate in some chronic pain conditions, especially during pain crisis – such as sickle cell disease – and for those who have significant improvement in function with opioids. Recent recommendations are for clinicians to develop a contract with patients who are on opioids (see British Pain Society 2010). The Canadian Centre for Effective Practice (2011) has an Opioid Manager webpage that provides guidelines for trialing a course of opioids for non-cancer chronic pain and examples of opioid contracts. Physical interventions The fear-avoidance model predicts that continued participation in activities valued by children and young people with chronic pain, despite some level of pain, should decrease disability and depression (Asmundson et al 2012). Nevertheless, chronic pain often leads children to avoid physical activities due to fear of a recurring injury or because it exacerbates the pain. Lack of muscle use can lead to loss of muscle strength, flexibility, endurance and overall deconditioning. Physical therapy, therefore, is an integral component of chronic pain management and is the cornerstone of treatment in certain types of pain conditions (for example, complex regional pain syndrome) (Engel and O’Rourke 2006). Physiotherapy is generally provided on an outpatient basis, with the goal of teaching and supporting the child to continue the activity programme at home. Graded physical exercise is an approach that provides children or young people with chronic pain with systematic and gradual exposure to the activity and helps reduce their fears. Activity pacing is another approach that can help children learn to balance periods of activity and inactivity in an attempt to keep their physical activity at optimum level. One study has outlined the benefits of yoga. Young people with irritable bowel syndrome (n=25) who participated in yoga reported less functional disability and wanted to continue practising yoga (Kuttner et al 2006). Clinical trials suggest that Iyengar yoga (yoga using props for support and November 2014 | Volume 26 | Number 9 33 Downloaded from RCNi.com by ${individualUser.displayName} on Jul 03, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved. Continuing professional development Psychological interventions Cognitive strategies (how someone thinks about their pain), behavioural strategies (how one behaves in response to their pain), and approaches that include a combination of cognitive and behavioural strategies are examples of psychological interventions. Pain education, relaxation, negative thought stopping, guided imagery and distraction are examples of psychological approaches. Evidence is mounting that psychological interventions can be self-administered without a psychologist or nurse being present by way of the internet, using specifically designed websites with online modules (text, pictures, embedded video) to learn and practice psychological strategies (Stinson et al 2009, Palermo et al 2010) or CD-ROMs (Connelly et al 2006). Now do time out 2. School and social interventions Pain intensity and duration are not the best predictors of poor school function (Logan et al 2008), so strategies that target pain-related disability and improve coping also help improve school attendance. However, some specific school-related accommodations have been shown to improve school function and will vary depending on the individual’s needs (for example, increase time to complete projects and tasks, tutoring, decreases in work load, permission to use elevators, different seating). Children and young people may need to be reassured that requesting school accommodations will not 34 November 2014 | Volume 26 | Number 9 2 Time out individualising poses to one’s medical condition) may be beneficial for patients with chronic pain (Evans et al 2012). The advantage of an activity such as yoga is that it may help change a young person’s view from needing treatment to incorporating activity as a healthy lifestyle. However, despite recognition of the importance of physical treatment for children with chronic pain, research documenting the benefits of physical approaches is limited (Campos et al 2011). When suggesting activities to the young patient, it is important that they be of interest to them and that they can maintain proper body mechanics while participating in the activity. To gain any benefit, there needs to be a minimum of two 20-minutes sessions a week on non-consecutive days. In the case of deconditioned patients, these 20-minute sessions should be split into two 10-minute sessions over the day (Wittink and Takken 2008). Re-engaging or maintaining regular exercise (20 minutes three times a week, for example) also helps with other areas of function disrupted by pain, such as sleep, mood, self-esteem and energy levels (McCarthy et al 2003, Engel and O’Rourke 2006, Stinson and Reid 2013). School-related strategies View this website to learn more school-related strategies for children and young people with chronic pain (Boston Children’s Hospital, tinyurl.com/ bch-chronic-pain). In your experience, would these school accommodations have been helpful to a child or young person whose chronic pain kept them from school? Are there other school accommodations you would recommend? negatively affect their ongoing academic aspirations. In fact, research suggests that these accommodations have been helpful in increasing self-efficacy in school, and teachers rated students with more accommodations as better adjusted to school compared with typical peers (Logan et al 2008). Teachers and school officials often request contact with clinicians when trying to accommodate the care needs of a child or young person with chronic pain in school (Logan and Curran 2005). School nurses are important in educating other school staff about chronic pain and its treatment, and they dispel myths about chronic pain and explain the rationale behind any school accommodations requested on behalf of the child. School is also a significant social context for children, and the peer relationships of pupils with chronic pain may be affected negatively. Nurses need to be mindful that no causal relationship has been shown between peer relationship or friendship difficulties and chronic pain (Forgeron et al 2010). It is possible that children who have medical conditions, such as pain, may be viewed as more vulnerable and may be the target of bullying as opposed to the pain developing as a reaction to being bullied. To counter the social interference that chronic pain can have on school attendance it is helpful to allow students to attend and participate in school-related social activities, such as dances, field trips and clubs, even when the students are not in school full time. This helps decrease social isolation and strengthens connectedness with the school. Sleep hygiene (good sleep habits) Sleep disturbances are common in children with chronic pain (Palermo and Kiska 2005), including increased insomnia and more night-time awakenings compared with healthy adolescents (Palermo et al 2007). Insufficient sleep can have negative effects in the daytime, such as irritability, being more easily upset, and decreased concentration at school. These can undermine the coping skills necessary for effective pain management. Nurses can teach NURSING CHILDREN AND YOUNG PEOPLE Downloaded from RCNi.com by ${individualUser.displayName} on Jul 03, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved. Complementary interventions There is little research on alternative treatments for children and young people with chronic pain. Therefore, these strategies must be used with caution. Research is emerging in relation to acupuncture as an alternative treatment, which may be effective for alleviating pain (Kemper et al 2000). However, not all children and young people are willing to try it, especially those with needle fears and phobias. Parents and young people need to be aware that substances marketed as natural may contain active ingredients that cause adverse reactions and may interact negatively with prescribed medications. Nurses need to create an atmosphere in which parents and young people are comfortable discussing their use, so safety issues can be addressed. Additionally, nurses need to provide young people with privacy during an assessment so they can freely discuss substances misuse, such as recreational drugs and alcohol, because this also poses safety implications. Now do time out 3. 3 Time out children, young people and parents strategies to improve sleep hygiene, that include: ■ Regular bed times and awakening times, regardless of sleep during the night. ■ Avoiding the use of electronic devices in the child’s or young person’s bedroom in general but especially at night (no mobile phones, laptops or other electronic devices), and permitting only short naps (20 minutes or less) during the day. Chronic pain services Do a quick web search of the healthcare services in your area for children and young people with chronic pain. Where are the referral centres in the UK? Do they offer a self-management programme? Do they offer continuing education resources for clinicians? Where would you send a family with a child or young person with chronic pain for help? If you had to work with a child with chronic pain what treatment strategies would you be able to provide? References Asmundson GJG et al (2012) Pediatric fear-avoidance model of chronic pain: foundation, application, and future directions. Pain Research and Management. 17, 6, 397-405. Berde CB, Solodiuk J (2003) Multidisciplinary programs for management of acute and chronic pain in children. In Schechter et al (Eds) Pain in Infants, Children and Adolescents. Lippincott Williams and Wilkins, Baltimore MD. British Pain Society (2010) Opioids for Persistent Pain: Good Practice. BPS, London. www.britishpainsociety.org/book_opioid-main. pdf (Last accessed: October 9 2014.) Campos A et al (2011) Clinical impact and evidence base for physiotherapy in treating childhood chronic pain. Physiotherapy Canada. 63, 1, 21-23. Centre for Effective Practice (2011) The Opioid Manager. tinyurl.com/cep-opioid-manager (Last accessed: October 3 2014.) Connelly M et al (2006) Headstrong: a pilot study of a CD-ROM intervention for recurrent pediatric headache. Journal of Pediatric Psychology. 31, 7, 737-747. Dick BD, Pillai Riddell R (2010) Cognitive and school functioning in children and adolescents with chronic pain: a critical review. Pain Research and Management. 15, 4, 238-244. Eccleston C et al (2003) Chronic pain in adolescents: evaluation of a programme of interdisciplinary cognitive behaviour therapy. Archives of Disease in Childhood. 88, 10, 881-885. Eccleston C et al (2005) Managing chronic pain in children: the challenge of delivering chronic care in a ‘modernising’ health care system. Archives of Disease in Childhood. 90, 4, 332-333. NURSING CHILDREN AND YOUNG PEOPLE Kemper KJ et al (2000) On pins and needles? Pediatric pain patient’s experience with acupuncture. Pediatrics. 105, 4pt2, 941-947. Engel JM, O’Rouke DA (2006) Chronic pain in children, physical medicine and rehabilitation. In Schmidt RF, Willis WD (Eds) Encyclopaedia Reference of Pain. Springer-Verlag, Heidelberg. Evans S et al (2012) Yoga for youth in pain: the UCLA pediatric pain program model. Journal of Holistic Nursing. 26, 5, 262-271. Kuttner L et al (2006) A randomized trial of yoga for adolescents with irritable bowel syndrome. Pain Research and Management. 11, 4, 217-224. Forgeron PA et al (2010) Social functioning and peer relationships in children and adolescents with chronic pain: a systematic review. Pain Research & Management. 15, 1, 27-41. Logan DE, Curran JA (2005) Adolescent pain problems in the school setting: Exploring the experiences and beliefs of selected school personnel through focus group methodology. Journal of Adolescent Health. 37, 4, 281-288. Hester NK (1979) The preoperational child’s reaction to immunization. Nursing Research. 28, 4, 250-255. Logan DE et al (2008) School impairment in adolescents with chronic pain. Journal of Pain. 9, 5, 407-416. Hicks CL et al (2001) The Faces Pain Scale – Revised: toward a common metric in pediatric pain measurement. Pain. 93, 2, 173-183. November 2014 | Volume 26 | Number 9 35 Downloaded from RCNi.com by ${individualUser.displayName} on Jul 03, 2015. For personal use only. No other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved. Continuing professional development Conclusion Evidence on the prevalence of chronic pain in children and young people has been growing in the past 15-20 years and may not yet be integrated fully in children’s nursing or other healthcare professionals’ curricula. Nurses and other healthcare clinicians need to recognise that chronic pain is a real condition requiring a range of interventions to target not only pain but also the consequences of pain-related disability. Now do time out 4. 4 Time out Self-management Although some forms of chronic pain can be cured, in many cases it requires long-term management. Chronic pain provision typically includes outpatient services, however, some centres offer inpatient, day or residential treatment programmes focusing on self-management (Berde and Solodiuk 2003, Eccleston et al 2003, Logan and Simons 2010). Self-management programmes for young people with chronic pain are designed to help them gain the knowledge and skills they need to manage the condition. The strategies involve many of those discussed here, but with a focus on the individual mastering the suggested approaches and therefore helping to improve self-efficacy. Reflective account Now that you have finished the article you might like to complete the questionnaire on page 38. You can also write a reflective account of between 750 and 1,000 words. Go to the Nursing Children and Young People website, at rcnpublishing.com/r/ncypreflective-account, to find out more. References Logan DE, Simons LE (2010) Development of a group intervention to improve school functioning in adolescents with chronic pain and depressive symptoms: a study of feasibility and preliminary efficacy. Journal of Pediatric Psychology. 35, 8, 823-836. McCarthy CF et al (2003) Physical therapy management of pain in children. In Schechter NL et al (Eds) Pain in Infants, Children and Adolescents. Second edition. Lippincott, Williams and Wilkins, Baltimore MD. McGrath PJ et al (2008) Core outcome domains and measures for pediatric acute chronic/recurrent pain clinical trials: PedIMMPACT recommendations. Journal of Pain. 9, 9, 771-783. Palermo TM, Kiska R (2005) Subjective sleep disturbances in adolescents with chronic pain: relationship to daily functioning and quality of life. Journal of Pain. 6, 3, 201-207. Palermo T et al (2007) Objective and subjective assessment of sleep in adolescents with chronic pain compared to healthy adolescents. Clinical Journal of Pain. 23, 9, 812-820. Palermo TM et al (2010) Randomized controlled trials of psychological therapies for management of chronic pain in children and adolescents: an updated meta-analytic review. Pain. 148, 3, 205-213. Perez RS et al (2010) Evidence based guidelines for complex regional pain syndrome type 1. BMC Neurology. 10, 20-33. Scott PJ et al (1977) Measurement of pain in juvenile chronic polyarthritis. Annals of the Rheumatic Diseases. 36, 2, 186-187. Singh G et al (2004) The value of interdisciplinary pain management in complex regional pain syndrome type I: a prospective outcome study. Pain Physician. 7, 2, 203-209. 36 November 2014 | Volume 26 | Number 9 Stinson JN et al (2006) Systematic review of the psychometric properties, interpretability and feasibility of self-report pain intensity measures for use in clinical trials in children and adolescents. Pain. 125, 1-2, 143-157. Stinson JN et al (2007) Construct validity of a multidimensional electronic pain diary for adolescents with arthritis. Pain. 136, 3, 281-292. Stinson J et al (2009) A systematic review of internet-based self-management interventions for youth with health conditions. Journal of Pediatric Psychology. 34, 5, 495-510. Stinson J et al (2013) Development and testing of a multidimensional iPhone pain assessment application for adolescents with cancer. Journal of Medical Internet Research. 15, 3, e51. Stinson J, Reid K (2013) Chronic pain in children. In Twycross A et al (Eds) Managing Pain in Children: A Clinical Guide. Second edition. Blackwell Science, London. von Baeyer C (2006) Understanding and managing children’s recurrent pain in primary care; A biopsychosocial perspective. Paediatrics and Child Health. 12, 2, 121-125. Wittink H, Takken T (2008) Excerise testing and training in patients with (chronic) pain. In Audette JF, Baily A (Eds) Integrative Pain Medicine. The Science and Practice of Complementary and Alternative Medicine in Pain Management (Contemporary Pain Medicine series). Humana Press, Totowa NJ. World Health Organization (2012) WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illness. tinyurl.com/who-pain-children (Last accessed: October 3 2014.) Zernikow B et al (2012) Characteristics of highly impaired children with severe chronic pain: a 5-year retrospective study on 2249 pediatric pain patients. BMC Pediatrics. 12, 1, 54-66. NURSING CHILDREN AND YOUNG PEOPLE Downloaded from RCNi.com by ${individualUser.displayName} on Jul 03, 2015. 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