REHABILITATION AND COPING WITH DISABILITIES IN INFANTS AND CHILDREN

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1 disability assessments Unit No. 5 REHABILITATION AND COPING WITH DISABILITIES IN INFANTS AND CHILDREN Dr Ng Zhi Min ABSTRACT Rehabilitation of infants and children with disabilities focuses on enhancing their abilities to erform tasks and articiate meaningfully in everyday activities. The International Classification of Functioning, Disability and Health (ICF) rovides a rehabilitative model which characterises the child s ing and health in the context of relevant ersonal and environmental factors that can facilitate or hinder erformance. Using the ICF framework, the general rinciles of rehabilitating infants and children with disabilities are: 1. Family-centred care with effective communication and collaboration of members within the multi-discilinary team; 2. Address fundamental needs of a growing infant and child; 3. Intervention to imrove body s and structures; 4. Encourage articiation in atient and family meaningful activities. The rimary health care rovider lays an integral role in managing infants and children with disabilities. Keywords: Rehabilitation, Disability in infants and children THE ICF AS A FRAMEWORK IN PAEDIATRIC REHABILITATION The World Health Organisation s International Classification of Functioning, Disability and Health (ICF) offers a framework for a holistic, multi-discilinary and goal-oriented team aroach in aediatric rehabilitation. 3 It includes the three domains of Body Functions and Structures, Activities and Particiation, comlemented by the contextual elements of Environment and (refer Figure 1). This revised ICF model views disability more than just a medical henomenon but also emhasises the imact of disability on an individual s ing and life exerience. The goal of management, in this framework, is articiation, acknowledging that otimal involvement in life situations is what truly matters. The ICF is articularly useful in concetualising ways in which children can achieve their goals and do what they find meaningful. Refer Figures 2-4 for examles of how this model can be alied in rehabilitation of a child with cerebral alsy, Duchenne muscular dystrohy and sina bifida resectively. SFP2014; 40(4): INTRODUCTION Paediatric rehabilitation involves caring for children from birth through 21 years of age with both congenital and acuired disabilities and heling them achieve their greatest ing otential. Strictly seaking, by definition, rehabilitation is the rocess of restoring a erson with a disability to the fullest hysical, mental, social, vocational, and economic usefulness that the erson is caable of. It tyically refers to the effort to restore former caacity. 1 This contrasts with the term habilitation which is the rocess of develoing a skill to be able to in an environment. It imlies develoment of abilities not reviously mastered 2 and therefore, would be the aroriate term to use in managing children with congenital disorder who have yet to achieve most milestones. However, regardless of the origin of disability, using the term rehabilitation to refer to both rehabilitative and habilitative services is common ractice, given that both rocesses have the same ultimate goal of otimising the ing of the child with a disability. This article aims to outline the general rinciles of rehabilitation of infants and children with disabilities and the role of a rimary health care rovider in the management. GENERAL PRINCIPLES OF PAEDIATRIC REHABILITATION With the ICF model in mind, the general rinciles of rehabilitation of infants and children with disabilities are: 1) Family-centred care in a multi-discilinary team 2) Address fundamental needs of a growing infant and child 3) Intervention to imrove body s and structures 4) Encourage articiation in atient and family meaningful activities. FIGURE 1. THE INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH (ICF). Body Functions & Structure Health condition (disorder or disease) Activity Particiation NG ZHI MIN, Associate Consultant, KK Women s and Children s Hosital Environmental Factors Personal Factors T h e S i n g a o r e F a m i l y P h y s i c i a n V o l 4 0 N o 4 O c t - D e c : 4 5

2 FIGURE 2. APPLICATION OF THE ICF TO A CHILD WITH CEREBRAL PALSY. FIGURE 4. APPLICATION OF THE ICF TO A CHILD WITH SPINA BIFIDA - Motor - Hearing - Vision - Seizure - Behavioural - Cognitive - Medical exertise - Motor: o Proximal myoathy o Scollosis o Fractures - Cardioulmonary - Dyshagia Celebral Palsy - Self-care: skin, hygiene - Hand and arm use - Ambulation: his, orthotics - Feeding & Nutrition: need for tube feeding - Articulation & Communication Particiation - Emloyment/ Duchenne Muscular Dystrohy - Ambulation - Seating - Self-care - Slee - Feeding and Nutrition - Safety awareness FIGURE 3. APPLICATION OF THE ICF TO A CHILD WITH DUCHENNE MUSCULAR DYSTROPHY Particiation - Emloyment/ - Medical exertise Family-centred care in a multi-discilinary team Family-centred care is a fundamental aroach to management of children with disabilities. Family-centred care refers to how health care rofessionals interact, rovide services and involve atients and their family in their care. 4 The key elements of family-centred ractice include an emhasis on strengths of the child and the family, facilitating informed choice by family and creating a theraeutic environment that otimises the develoment of a collaborative family-health care rovider relationshi. 5 Familycentred care is about roviding aroriate information and suort, and enabling family emowerment and engagement. - Motor - Sensory: Bowel and bladder - Neurological: Hydrocehalus, Chiari malformation - Orthoaedic: Kyhoscoliosis, Foot deformities, Osteoorosis - Cognitive - Medical exertise Sina Bifida - Ambulation - Self-care: catheterisation - Growth and Nutrition Particiation - Emloyment/ - Safety awareness With this aroach, it makes care coordination and collaboration within the multi-discilinary team even more vital. The team comrises of the rimary health care rovider as well as secialists in Neurology, Orthoaedics and Neurosurgery, working in conjunction with theraists, nurses, dieticians, harmacists, sychologists, social care roviders and school teachers. After heling the family to rioritise and identify meaningful key outcomes, there must be effective communication between the different services and discilines within the team so that all team members can focus in heling the atient and the family towards a common goal (refer Figure 5). Address fundamental needs of a growing infant and child Rehabilitation of infants and children with disabilities involves addressing all develomental asects of the child and lanning timely interventions with regards to the most urgent needs of the child and the family. The members of the multi-discilinary team, including the rimary health care rovider, should have a good knowledge of childhood develomental milestones and an adeuate understanding of the basic needs of a child including growth, nutrition, vaccinations and education. Due to inter-current illness, some children may sli through the cracks of the well child system and fall behind in immunisations. Due to their articular suscetibility to infection, the rimary health care rovider should make sure that neumococcal and influenza vaccinations are given routinely to this grou of children. T h e S i n g a o r e F a m i l y P h y s i c i a n V o l 4 0 N o 4 O c t - D e c : 4 6

3 FIGURE 5. THE CORE MEMBERS OF THE MULTI-DISCIPLINARY TEAM OF REHABILITATION OF INFANTS AND CHILDREN WITH DISABILITIES. Rehabilitation hysician / Neurologist Primary health care rovider Orthoaedic surgeon/ Neurosurgeon Pharmacist Physiotheraist Nurse Orthodist Dietitian Patient Family Occuational theraist Seech and language theraist Medical Social Worker Psychologist Music /Art / Play Theraist While vocational rehabilitation is an imortant consideration for the adult with a disability, secial education is imortant to the child with a disability. Before the age of seven, children with hysical disability, sensory imairment or other disabilities are referred to secial education centres for early intervention uon diagnosis. There are 17 Early Intervention Programme for Infants and Children (EIPIC) centres run by 10 voluntary welfare organisations (VWOs) in Singaore. Together with KK Women s and Children s Hosital (KKH) and National University Hosital (NUH), these centres cater to infants and children who reuire secialised hel such as seech, occuational and hysical theray (refer Figure 6). After the age of seven, deending on the degree of the disability, some children may be able to coe with arts of the mainstream school curriculum with additional suort, while others may benefit more from secial curricula taught by suitably- ualified teachers in Secial Education (SPED) schools that are oerated by VWOs, with the suort of the Ministry of Education and the National Council of Social Service. The aim of all SPED schools is to develo each child s caacity to his fullest otential, with the long-term objective of enhancing his rosects of integration into mainstream society. 6 The education curriculum is sulemented with rehabilitative services which enhance the child s well-being and all-round develoment. Intervention to imrove body s and structures Secific areas of concern should be looked into, deending on the secific medical condition. These may include management of motor, sensory, neurological, cognitive and sychosocial comlications. A. Motor In neuromuscular diseases, issues of sasticity and orthoedic conditions of contractures, scoliosis and hi dyslasias have to be monitored and managed accordingly. If motor limitation exists, adative devices may be used. When the skills of eye-hand coordination and safety awareness are acuired, the child may be able to control a wheelchair with a joystick. For the child with ambulation otential, lower extremity orthotics rovide suort and imrove gait efficiency, while walking aids may rovide added stability and revent falls. T h e S i n g a o r e F a m i l y P h y s i c i a n V o l 4 0 N o 1 S u l e m e n t J a n - M a r : 4 7

4 FIGURE 6. EIPIC CENTRES IN SINGAPORE VWO Centre/Programme Location(s) Disability Asian s Women Welfare Association (AWWA) Early Years Centre Hougang All Autism Association (Singaore) Eden Children s Centre Clementi, Simei Autism Autism Resource Centre (ARC) WeCAN Early Intervention Programme Ang Mo kio Autism Canossian School EIPIC Circuit Road Hearing Imairment Celebral Palsy Alliance Singaore (CPAS) EIPIC Pasir Ris Autism, Physical, Intellectual, Multile, GDD Fei Yue Community Services Fei Yue EIPIC centre Jurong East All Metta Welfare Association Metta Simei, Punggol Autism, Intellectual, GDD Rainbow Centre Rainbow Centre Early Yishun Park, Margaret Drive All excet sensory Intervention Programme SPD Building bridges EIPIC centre Tiong Bahru, Jurong East All Thye Hwa Kuan (THK) THK EIPIC centre Woodlands, Choa Chu Kang, All Moral Charities Ang Mo Kio, Tamines GDD: Global develomental delay Adated from SG Enable EIPIC service matrix. Proer seating with aroriate relief for deformities allows the child to sit uright and view the environment. General goals include normalisation of tone, symmetric ositioning, and imroved trunk alignment. Car seating that is safe from both a ostural and a crash safety ersective gives secure travel caacity to the child and family. Oromotor dys may lead to sialorrhoea, silent asiration and oor intake of nutrition, resulting in oor growth and imact on the social health and general well-being of the child. Thus, most of these children need a full swallowing assessment. Some may only be allowed limited oral feeding or even reuire gastrostomy tube feeding. They will also benefit from regular review by a dietician for otimisation of nutrition. B. Sensory Early-onset sensory imairment such as hearing and visual loss can have a rofound imact on a child s develoment. Secialised skills and adative aids enable a child to comensate for such deficiency. A child with a disability needs to communicate in order to interact with his environment. Communication need not be vocal in nature to be effective. A shared understanding between two individuals may be ossible with gestures, sign language or even a simle movement of eye gaze. Augmentative and alternative communication (AAC) may be emloyed to further enhance understanding and exression. If the child is unable to exress himself, esecially if he is non-ambulant, caregivers and health care roviders should ay attention to ain that may be caused by various reasons such as muscle sasm, mal-aligned joints, undetected dental caries, skin breakdown, constiation and gastric reflux. C. Neurological In cases like cerebral alsy, seizures and movement disorder need to be controlled. In cases of sina bifida with hydrocehalus, ventriculoeritoneal shunt-related comlications are not uncommon. For advanced cases of rogressive neuromuscular disease such as sinal muscular atrohy and Duchenne muscular dystrohy, there may be a need for home mechanical ventilatory suort. D. Cognitive In cases of learning and attention disability, coing strategies are rovided to the child as well as the family. Referral to THE neurosychologist should be made for formal assessment and secific intervention. E. Psychosocial Different sychosocial issues may arise at different stages in life in a child with a disability. At the time of diagnosis, the arents are often emotionally devastated and cycle through hases of denial, anger, sadness and active coing. As the disease rogresses, levels of and demands on the family may change. Thus, aroriate sychosocial assistance such as suort grou and resite care should be made available to the child and family at all times. As the child transitions into adolescence and adulthood, attention should be given to the child s emotional growth and sychological well-being. Oortunities should also be given to discuss about end of life care with both the child and the family. Encourage articiation in atient and family meaningful activities Like education, nutrition and motor ing, articiation in meaningful activities is an imortant asect of develoment and health of the child. It allows children to exress themselves, and develo confidence and cometence through exerimentation and exloration. It also rovides the oortunity to understand and assimilate societal rules, develo social skills and form meaningful relationshis. 7,8,9,10 The first ste to encouraging articiation is to always ask about the child s and the family s T h e S i n g a o r e F a m i l y P h y s i c i a n V o l 4 0 N o 4 O c t - D e c : 4 8

5 references. These references can be influenced by the child s motivation, the family s exectations as well as family cohesion and coing. The may be as simle as having meals together as a family. If this is identified to be meaningful and imortant to the child and the family, then it is essential to make sure that the child has roer seating to make this ossible. Beyond the family factors, other factors that imact on articiation include the school setting, the beliefs and actions of eers, the attitudes of the ublic, the availability of social suort rogrammes and the accessibility of transortation and built environments. 11 For instance, a child with Duchenne muscular dystrohy will be able to go to school indeendently if he has a motorised wheelchair with accessibility in the school environment such as rams and elevators. CONCLUSION In looking after a child with a disability, the rimary health care rovider should view the child as an imortant and valued member of a family. He should have effective communication with the family as well as other members of the health care team. Routine well child care should not be overlooked, with careful attention aid to monitoring of growth arameters, screening of hearing and vision, and maintenance of aroriate immunisations. Feeding issues should also be looked into in order to minimise risk of asiration and faltering growth. The rimary health care rovider should also make sure that every child is given an oortunity to early intervention and education. Consideration should also be given to the management of co-existing conditions such as ain secondary to an ill-fitting orthotic, unnoticed dental caries or severe constiation that may interfere with their daily lives and engagement in meaningful activities. Acknowledgement I would like to exress my areciation to Dr Winnie Goh Hwee Suat and Dr Chan Wei Shih Derrick for their invaluable advice in the rocess of the manuscrit writing. r e f e r e n c e s 1. Keith D. Allen, Susan M. Wilczynski, Joseh H. Evans. Pediatric rehabilitation: Defining a field, a focus, and a future. International Journal of Rehabilitation and Health 1997;3(1): Pasuale J Accardo, Barbara Y Whitman, Jennifer A Accardo:Dictionary of Develomental Disabilities Terminology, 3rd Edition. Brookes Pub. Feb 1, ICF. International Classification of Functioning, Disability and Health. Geneva: World Health Organization; Dunst CJ, Trivette CM. Meta-analytic structural euation modeling of the influences of family-centered care on arent and child sychological health. Int J Pediatr. 2009;2009: Ese-Sherwindt M. Family-centred ractice: collaboration, cometency and evidence. Su Learn. 2008;23: htt://www.moe.gov.sg/education/secial-education 7. Cassidy T. All work and no lay: a focus on leisure times as a means for romoting health. Couns Psychol Q. 1996;1: Ginsburg KR. The imortance of lay in romoting healthy child develoment and maintaining strong arent-child bonds. Pediatrics. 2007;119: Harrison PA, Narayan G. Differences in behavior, sychological factors, and environmental factors associated with articiation in school sorts and other activities in adolescence. J Sch Health. 2003;73: Secht J, King G, Brown E et al. The imortance of leisure in the lives of ersons with congenital hysical disabilities. Am J Occu Ther. 2002;56: Shikako-Thomas K, Kolehmainen N, Ketelaar M et al. Promoting Leisure Particiation as Part of Health and Well-Being in Children and Youth With Cerebral Palsy. J Child Neurol Jun 5;29(8): LEARNING POINTS The International Classification of Functioning, Disability and Health (ICF) offers a framework for a holistic, multi-discilinary and goal-oriented team aroach in rehabilitation of infants and children with disabilities. Family centred care is the fundamental key in the management of infants and children with disabilities. The rimary health care rovider should ay careful attention to monitoring of growth arameters, nutrition and immunisations of infants and children with disabilities. T h e S i n g a o r e F a m i l y P h y s i c i a n V o l 4 0 N o 4 O c t - D e c : 4 9