Mental health problems in children with neuromotor disabilities
Posted: Mar 7 2016
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Benjamin Klein; Canadian Paediatric Society, Mental Health and Developmental Disabilities Committee
Paediatr Child Health 2016;21(2):93-96.
Mental health in children with neuromotor disorders is part of a dynamic system, including medical and developmental domains, family, school and community. Presentations are often complex and multifactorial, requiring a broad, individualized approach. A narrative overview of mental health symptoms in children with neuromotor disabilities is provided, along with recommendations for their assessment and management using the WHO’s International Classification of Functioning framework.
Key Words: CP; Disability; HRQOL; ICF; Mental health; Spina bifida
Neuromotor disabilities are conditions of the nervous system, with motor deficits being their defining feature. Mental health problems in children with neuromotor disabilities are common, incompletely understood- and “likely determined by the interacting influences of multiple biological, neuropsychological, and social factors”. Their clinical presentations often reflect a dynamic or transactional relationship between the child living with a disability and the environment (eg, the effect of caregiving needs on caregiver fatigue). The purely medical model must give way to “diagnosing the child-world interaction”.
The present statement offers a narrative overview of mental health symptoms in children with various neuromotor disabilities, followed by recommendations for their assessment and management that utilize the WHO’s International Classification of Functioning (ICF) framework. The ICF system has provided a new context for thought and practice in the field of childhood disability by encouraging an approach to care that puts more emphasis on a child’s function (“activity”) and social engagement (“participation”) than on their impairment.
Common disorders that affect movement, posture and manual abilities include cerebral palsy (CP), muscular dystrophy and spina bifida. Neurological impairment is attributed to lesions that are static (as in CP) or progressive (as in muscular dystrophy). Children may present with combinations of weakness, hypotonia, spasticity, dystonia, contractures, sensory disorders, cognitive deficits and other medical comorbidities. There is great variability of function within the many diagnostic categories and among different classification approaches.
Mental health problems associated with neuromotor disorders
Children and adolescents with neuromotor disorders have more mental health symptoms than the general population, including difficulties with social skills, self-esteem, behaviour, anxiety, mood and attention. Assessment may be complicated by communication problems (eg, difficulty speaking), atypical presentations of motor disability and neurodevelopmental disorders (eg, attention-deficit hyperactivity disorder or its symptoms), and challenges to obtaining clinical history. Physicians often resort to describing ‘features’ without diagnosing specific categorical disorders.
Body Structures and Functions
Pain is associated with reduced participation in social or other activities, a lower quality of life and mental health problems. Children with CP experience physical pain in direct relation to the severity of their functional disability. Possible sources of chronic pain include medical procedures, neuromuscular disturbances, such as dystonia, and musculoskeletal causes such as a hip dislocation. Pain in children with neuromotor disabilities has been found to be associated with feelings of isolation, frustration and sadness, as well as with caregiver observations of anxiety, increased crying (with or without movement), difficulty concentrating, irritability and lower activity levels. Cognitive behavioural therapy may help to mitigate the effects of pain on mental health.
Children with neuromotor disorders often have medical comorbidities. Seizures and the medications used to control them may affect cognition, motor and emotional-behavioural functioning. Dysphagia includes feeding difficulties caused by abnormal oral, pharyngeal and esophageal phases of deglutition, which also increase the risk for aspiration and recurrent pneumonia. Gastroesophageal reflux and frequent or chronic constipation can lead to pain and nutritional problems. Sleep disorders are often multifactorial and may relate to pain caused by skin ulcers, neuromuscular and musculoskeletal problems, gastroesophageal reflux disease or constipation, or to obstructive sleep apnea, the inability to change sleep position, as well as to difficulties with parent-child interaction (eg, with limit-setting).
Levels of motor impairment that are not severe have been associated with both worse and better health-related quality of life (HRQOL). As these findings imply, HRQOL, mental health and motor disability have a complex interrelationship. Many children with CP have more positive perceptions about their situation than what may be expected by others, including their parents. While internalizing problems may lead to less engaged or irregular physical and social activity, which in turn is associated with lower child-reported HRQOL, externalizing behaviours (ie, being disruptive or aggressive) correlate negatively with lower parent-reported HRQOL but positively with child-reported HRQOL. These findings highlight that behaviour problems, being subjective and perspective-dependent, are difficult to define in this population.
Communication, cognition and learning
Cognitive disability is strongly associated with mental health disorders. Neuromotor disorders often involve social-emotional, executive and cognition dysfunction, mild to profound intellectual disability and learning disabilities. For example, spina bifida is associated with nonverbal learning disorder, attention-deficit hyperactivity disorder, executive dysfunction and hydrocephalus (with possible complications from ventriculoperitoneal shunting such as increased intracranial pressure from shunt failure and central nervous system infections).
Motor impairments can impede cognitive tests that are based on verbal or pencil-and-paper responses and appropriate assessment of level of function. Individuals with a severe motor impairment (eg, dyskinetic CP) can also have trouble understanding spoken language, expressing themselves or achieving typical cognitive milestones. The importance of accurately determining a child’s levels of function and ability cannot be overstated in regard to shaping expectations for emotional-behavioural maturity, academic demands and peer interactions. When abilities and expectations are mismatched in the child-environment interaction, symptoms of emotional stress can result, such as internalizing or externalizing symptoms of stress.
The biopsychosocial relationship of children living with neuromotor disability and their environment is especially complex because it includes family, school and community. The parents of children with a physical disability can bear a tremendous long-term burden of providing care. Unsurprisingly, such parents are statistically less healthy, both physically and psychologically, compared with parents of children without disabilities. A child’s behavioural difficulties can undermine a parent’s sense of competence, reinforce problems with attachment, and compound parental stress, spousal relationship difficulties and caregiver depression. Such stressors are associated, in turn, with difficult child behaviours. Parental mental health problems increase the risk for mental health problems for any child, particularly in the developmentally critical early years. However, the strategic use of respite care may help to decrease caregiver stress and enhance family environments.
Positive academic and social involvement at school is a protective factor for health in the longer term. However, many children with neuromotor disabilities form fewer friendships, have fewer social skills and experience social isolation and victimization more often than their typical peers. Motor disorders can increase risk for neglect in the classroom, such as when insufficient time is alloted to children to use their speaking devices. On the other hand, higher cognitive functioning is predictive of fewer social difficulties, and personalized classroom supports have been strongly associated with increased participation.
Research is ongoing into the social effects of environment, specifically of better access to recreational activities and opportunities for interaction, on the lives of individuals with neuromotor disabilities. It is already well known that participation in physical activities is negatively impacted by limited financial resources, by environmental factors such as a lack of open space, rough terrain or inadequate transport, and by lack of inclusiveness. One study found that exposure to other individuals with disabilities supported more favourable attitudes in children concerning their own disabilities.
Review of systems using the WHO’s International Classification of Functioning framework
|Participation and individual factors|
Participation has been defined by the WHO’s ICF framework as “involvement in life situations” and is a key determinant of mental health. In children with a neuromotor disability, participation is a “multi-determined phenomenon” associated with motor and cognitive function, family factors, accessibility within the home and community, favourable attitudes of people sharing the child’s household and neighbourhood, the child’s own ability to access and develop specific personal interests, and a more positive perception by parents concerning the extent of their child’s constraints.
Every child has a unique temperament that affects their interaction with the world, including traits of adaptability, intensity, persistence, activity level, attention, predominant mood and sensory sensitivity. As with any child, the ability to express and act on preferences, feeling capable and experiencing companionship will affect levels of participation.
Children with neuromotor disabilities often experience mental health symptoms, which can involve multiple body systems and environmental factors which, in turn, can directly impact personal functioning and social participation. For the health care provider, family factors and quality of life are integral components of assessment and intervention. A careful systemic review examining body structures, functional abilities, home and school environments, participation levels and personal factors should be conducted (Table 1). Appropriate physical and psychosocial examinations usually require multiple visits, at least initially.
The following recommendations may help health care providers to assess and promote mental health in the child or adolescent living with a neuromotor disability:
- Mental health should be considered contextually, in the child-environment system, necessitating a broad assessment of ICF domains.
- Addressing mismatches in a child’s multiple environments (home, school, recreation) compared with functional abilities (motor, communication, social-emotional skills) can improve participation levels. Physicians should consider providing a medical letter to caregivers with specific information about a child’s functional abilities, medical diagnoses and recommended supports, such as assistive technologies and strategies.
- A consistent coordinating physician is best able to identify and manage the many possible sources of physical discomfort that may be affecting a child’s mental health symptoms.
- A coordinating physician can also be a source of information, compassionate care and referrals for parents who have difficulty meeting their child’s complex needs.
- The child’s history should be compiled directly from multiple sources, including from the child and his/her family members, educators and therapists, through face-to-face meetings, written reports and telephone conversations.
This position statement has been reviewed by the Adolescent Health and Community Paediatrics Committees of the Canadian Paediatric Society.
CPS MENTAL HEALTH AND DEVELOPMENTAL DISABILITIES COMMITTEE
Members: Debra Andrews MD, Stacey A Bélanger MD (Chair), Alice Charach MD, Brenda Clark MD, Johanne Harvey MD (Board Representative), Daphne J Korczak MD
Liaisons: Clare Gray MD, Canadian Academy of Child and Adolescent Psychiatry; Benjamin Klein MD, CPS Developmental Paediatrics Section; Judy van Stralen MD, CPS Mental Health Section
Principal author: Benjamin Klein MD
- Ramstad K, Jahnsen R, Skjeldal OH, Diseth TH. Mental health, health related quality of life and recurrent musculoskeletal pain in children with cerebral palsy 8-18 years old. Disabil Rehabil 2012;34(19):1589-95.
- Brossard-Racine M, Hall N, Majnemer A, et al. Behavioural problems in school age children with cerebral palsy. Eur J Paediatr Neurol 2012;16(1):35-41.
- Sipal RF, Schuengel C, Voorman JM, Van Eck M, Becher JG. Course of behaviour problems of children with cerebral palsy: The role of parental stress and support. Child Care Health Dev 2010;36(1):74-84.
- Brossard-Racine M, Waknin J, Shikako-Thomas K, et al. Behavioral difficulties in adolescents with cerebral palsy. J Child Neurol 2013;28(1):27-33.
- Holmbeck GN, Greenley RN, Coakley RM, Greco J, Hagstrom J. Family functioning in children and adolescents with spina bifida: An evidence-based review of research and interventions. J Dev Behav Pediatr 2006;27(3):249-77.
- Rosenbaum P, Gorter JW. The ‘F-words’ in childhood disability: I swear this is how we should think! Child Care Health Dev 2012;38(4):457-63.
- Sameroff A. The Transactional Model of Development: How Children and Contexts Shape Each Other. Washington: American Psychological Association, 2009.
- Waber DP. Rethinking Learning Disabilities: Understanding Children Who Struggle in School. New York: Guilford Press, 2011.
- Pruitt DW, Tsai T. Common medical comorbidities associated with cerebral palsy. Phys Med Rehabil Clin N Am 2009;20(3):453-67.
- Gorter JW, Rosenbaum PL, Hanna SE, et al. Limb distribution, motor impairment, and functional classification of cerebral palsy. Dev Med Child Neurol 2004;46(7):461-67.
- Goodman R. The longitudinal stability of psychiatric problems in children with hemiplegia. J Child Psychol Psychiatry 1998;39(3):347-54.
- Sigurdardottir S, Indredavik MS, Eiriksdottir A, Einarsdottir K, Gudmundsson HS, Vik T. Behavioural and emotional symptoms of preschool children with cerebral palsy: A population-based study. Dev Med Child Neurol 2010;52(11):1056-61.
- Steele M, Taylor E, Young C, McGrath P, Lyttle BD, Davidson B. Mental health of children and adolescents with Duchenne muscular dystrophy. Dev Med Child Neurol 2008;50(8):638-39.
- Di Marco M, Iocono T. Mental health assessment and intervention for people with complex communication needs associated with developmental disabilities. J Policy Pract Intellect Disabil 2007;4(1):40-59.
- Ramstad K, Jahnsen R, Skjeldal OH, Diseth TH. Parent-reported participation in children with cerebral palsy: The contribution of recurrent musculoskeletal pain and child mental health problems. Dev Med Child Neurol 2012;54(9):829-35.
- Penner M, Xie WY, Binepal N, Switzer L, Fehlings D. Characteristics of pain in children and youth with cerebral palsy. Pediatrics 2013;132(2):e407-13.
- Houlihan CM, Hanson A, Quinlan N, Puryear C, Stevenson RD. Intensity, perception, and descriptive characteristics of chronic pain in children with cerebral palsy. J Pediatr Rehabil Med 2008;1(2):145-53.
- Yamaguchi R, Nicholson Perry K, Hines M. Pain, pain anxiety and emotional and behavioural problems in children with cerebral palsy. Disabil Rehabil 2014;36(2):125-30.
- Castle K, Imms C, Howie L. Being in pain: A phenomenological study of young people with cerebral palsy. Dev Med Child Neurol 2007;49(6):445-9.
- Hadden KL, von Baeyer CL. Global and specific behavioral measures of pain in children with cerebral palsy. Clinical J Pain 2005;21(2):140-6.
- Lynch-Jordan AM, Sil S, Peugh J, Cunningham N, Kashikar-Zuck S, Goldschneider KR. Differential changes in functional disability and pain intensity over the course of psychological treatment for children with chronic pain. Pain 2014;155(10):1955-61.
- Hadden KL, von Baeyer CL. Pain in children with cerebral palsy: Common triggers and expressive behaviors. Pain 2002;99(1-2):281-8.
- Arnaud C, White-Koning M, Michelsen SI, et al. Parent-reported quality of life of children with cerebral palsy in Europe. Pediatrics 2008;121(1):54-64.
- Janssen CG, Voorman JM, Becher JG, Dallmeijer AJ, Schuengel C. Course of health-related quality of life in 9-16-year-old children with cerebral palsy: Associations with gross motor abilities and mental health. Disabil Rehabil 2010;32(4):344-51.
- Ageranioti-Bélanger S, Brunet S, D’Anjou G, Tellier G, Boivin J, Gauthier M. Behaviour disorders in children with an intellectual disability. Paediatr Child Health 2012;17(2):84-8.
- Bottcher L, Flachs EM, Uldall P. Attentional and executive impairments in children with spastic cerebral palsy. Dev Med Child Neurol 2010;52(2):e42-7.
- Liptak GS, Dosa NP. Myelomeningocele. Pediatr Rev 2010;31(11):443-50.
- Geytenbeek JJ, Vermeulen RJ, Becher JG, Oostrom KJ. Comprehension of spoken language in non-speaking children with severe cerebral palsy: An explorative study on associations with motor type and disabilities. Dev Med Child Neurol 2015;57(3):294-300.
- Murphy NA, Christian B, Caplin DA, Young PC. The health of caregivers for children with disabilities: Caregiver perspectives. Child Care Health Dev 2007;33(2):180-87.
- Ketelaar M, Volman MJ, Gorter JW, Vermeer A. Stress in parents of children with cerebral palsy: What sources of stress are we talking about? Child Care Health Dev 2008;34(6):825-9.
- Raina P, O'Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005;115(6):e626-36.
- Shonkoff JP, Garner AS; Committee on Psychosocial Aspects of Child and Family Health; Committee on Early Childhood, Adoption, and Dependent Care; Section on Developmental and Behavioral Pediatrics.The lifelong effects of early childhood adversity and toxic stress. Pediatrics 2012;129(1):e232-46.
- Damiani G, Rosenbaum P, Swinton M, Russell D. Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario. Child Care Health Dev 2004;30(1):77-86.
- Nadeau L, Tessier R. Social adjustment of children with cerebral palsy in mainstream classes: Peer perception. Dev Med Child Neurol 2006;48(5):331-6.
- Schenker R, Coster W, Parush S. Participation and activity performance of students with cerebral palsy within the school environment. Disabil Rehabil 2005;27(10):539-52.
- Mihaylov SI, Jarvis SN, Colver AF, Beresford B. Identification and description of environmental factors that influence participation of children with cerebral palsy. Dev Med Child Neurol 2004;46(5):299-304.
- MacMillan M, Tarrant M, Abraham C, Morris C. The association between children’s contact with people with disabilities and their attitudes towards disability: A systematic review. Dev Med Child Neurol 2014;56(6):529-46.
- King G, Imms C, Palisano R, et al. Geographical patterns in the recreation and leisure participation of children and youth with cerebral palsy: A CAPE international collaborative network study. Dev Neurorehabil 2013;16(3):196-206.
- Michelsen SI, Flachs EM, Damsgaard MT, et al. European study of frequency of participation of adolescents with and without cerebral palsy. Eur J Paediatr Neurol 2014;18(3):282-94.
- Bult MK, Verschuren O, Lindeman E, et al. Predicting leisure participation of school-aged children with cerebral palsy: Longitudinal evidence of child, family and environmental factors. Child Care Health Dev 2013;39(3):374-80.
- Colver A, Thyen U, Arnaud C, et al. Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: A cross-sectional multicenter European study. Arch Phys Med Rehabil 2012;93(12):2154-64.
Disclaimer: The recommendations in this position statement do not indicate an exclusive course of treatment or procedure to be followed. Variations, taking into account individual circumstances, may be appropriate. Internet addresses are current at time of publication.