|Year : 2022 | Volume
| Issue : 2 | Page : 68-72
Home-based early intervention for children with neurodevelopmental disorders by community therapy providers supported by a specialized mobile application in Purulia, West Bengal
Department of Pediatrics, MGM Medical College, Kishanganj, Bihar; Udbhaas Child Development Centre, Kolkata, West Bengal, India
|Date of Submission||08-Mar-2022|
|Date of Decision||19-Apr-2022|
|Date of Acceptance||27-Apr-2022|
|Date of Web Publication||30-May-2022|
Dr. Nandita Chattopadhyay
22M, Srinath Mukherjee Lane, Kolkata - 700 030, West Bengal
Source of Support: None, Conflict of Interest: None
Background: Neurodevelopmental disorders (NDD) are a major global public health problem, particularly affecting children from the lower- and middle-income countries (LMICs). In India, nearly 2.3 million children below 6 years of age have some developmental disability, of whom many live in rural and semi-urban areas with minimum access to early intervention services. We attempted to reach out to such a population at their doorstep with affordable care and management through home-based early intervention (HBEI) programs provided by local field level workers (hitherto referred as community therapy providers [CTP]). A group of local youth, with a short training on NDD and EI methods, have been providing regular, weekly therapy sessions to the afflicted children at the latter's residence, under constant virtual guidance and monitoring by specialists, with the help of a mobile application. The children were initially screened and assessed by our specialist team, who assigned the therapy program and demonstrated the techniques to the CTPs. Clinical Description: We are sharing a series of 8 cases, ranging from cerebral palsy to Global Developmental Delay and speech delay, who have received HBEI for 3–5 months, to demonstrate the impact of the program. Management and Outcome: The children have shown improvement in all domains with the intensive and regular services. Moreover, empathy, concern, and inclusion of parents in therapy sessions rejuvenated the families. Conclusion: Provision of HBEI through field workers may be a cost-effective solution to the formidable problem of childhood disability among the under-privileged rural community. The electronic tracking system has proved very useful in remote monitoring.
Keywords: Childhood disability, home-based early intervention, mobile application
|How to cite this article:|
Chattopadhyay N. Home-based early intervention for children with neurodevelopmental disorders by community therapy providers supported by a specialized mobile application in Purulia, West Bengal. Indian Pediatr Case Rep 2022;2:68-72
|How to cite this URL:|
Chattopadhyay N. Home-based early intervention for children with neurodevelopmental disorders by community therapy providers supported by a specialized mobile application in Purulia, West Bengal. Indian Pediatr Case Rep [serial online] 2022 [cited 2022 Jul 2];2:68-72. Available from: http://www.ipcares.org/text.asp?2022/2/2/68/346262
Neurodevelopmental disorders (NDD) and childhood disability are major public health problems globally, particularly in lower- and middle-income countries (LMICs). Both are closely associated with malnutrition and poverty, one aggravating the other, thereby leading to a vicious cycle, with increasing magnitude of burden. A recent community-based multi-centric study conducted in India in 2018 revealed an average prevalence of 12% of neurodevelopmental disabilities among 2–9-year-old children. It is estimated that nearly 2.3 million children in India below 6 years of age have some form of developmental disability. Proper management of NDD calls for a sustained multi-disciplinary approach involving various trained professionals. Many children with special needs live in rural and semi-urban areas and have restricted access to early intervention services. They are therefore largely undetected, identified late and/or poorly reported. These marginalized families face multiple barriers, which commonly include dearth of rehabilitation centers within easy travelling distance, long and difficult commutes to the available ones, loss of daily wages for each visit that affect adherence to follow-up, and high costs associated with availing specialized services in the private sector. All these factors hinder early detection and timely intervention. Despite the launch of the Rashtriya Bal Swasthya Karyakram, District Early Intervention Centers (DEIC) are still not operational in many districts across the country. Thus, many children with neglected developmental delay culminate into irreversible, disabling conditions.
Our organization provides services to under-privileged children with NDD through a home-based early intervention (HBEI) program in a rural block in Purulia, West Bengal. The terrain is difficult for travel, and the nearest district hospital is 30 km away. Our team of specialists (developmental pediatrician and experienced therapists) recruited graduates residing in the area and provided them with 7-day training in child development. This included knowledge and practical skills pertaining to developmental milestones, identification of red flags, administration of the modified Trivandrum Development Screening Chart, and common successful home-based strategies that we were using in early intervention. Following this, they were given the nomenclature of “Community Therapy Providers” (CTP). A team comprising of the experts and trained CTP conducted a developmental screening camp for children under 6 years of age in designated blocks in Purulia. This resulted in the identification of 122 children who were screen positive, out of which 76 families consented to being enrolled in the HBEI program. They underwent detailed assessment by the developmental pediatrician that involved clinical evaluation and the use of the following tools: The Gross Motor Function Classification Scale, a five-level classification system for children with cerebral palsy (based on the current gross motor abilities and limitations in gross motor function), and Functional Assessment Checklist for Programming, which is an activity-based checklist that identifies a child's strengths and weaknesses and is used for deciding individualized education program placement for children with cognitive impairment. Based on these, individualized intervention plans were formulated for 3 months. All details (demographic, assessment scores, goals, and the HBEI plan) were entered into a specialized mobile phone application, namely, Mobile Village-Based Rehabilitation–Early Intervention (mVBR-EI). This tool devised by the Amar Seva Sangam (ASSA) also has built-in facilities for scheduling and monitoring follow-up visits. The application is used by all team members and enables the CTP to remain connected with the team leader and various specialists. Thus, this helps in maintaining high standards of intervention.
Each CTP was allotted 20–25 children with a clinical diagnosis and structured HBEI program, the details of which were demonstrated hands-on. The CTP adhered to the plan by carrying out weekly sessions of 30–90 min each at home with active parental participation, taking their concerns and limitations into account. The rendered services and performance of the CTP were remotely monitored by the experts through the mVBR-EI mobile application. The children were re-evaluated by the specialists every 3 months, and the next set of goals and intervention planned according to the progress made, thus maintaining continuum of the management [Chart 1].
The aim of this case series is to sensitize pediatricians to the benefits, challenges, and impact of “family centered home-based care” for families of children with special needs in difficult circumstances. Evidence-based intervention based on a comprehensive assessment is provided by CTP, supported by mobile technology and remote direction by specialists. Although this strategy cannot replace intervention delivered by qualified multi-disciplinary professionals, it serves to bridge a major gap in the provision of regular, structured management for vulnerable populations, when no other options are available.
| Clinical Description|| |
We present the brief clinical information, diagnosis, and management of five children with special needs who were identified from the aforementioned camp. The details of assessment, goals, and intervention plans assigned by the experts before the onset of HBEI are given in [Table 1].
|Table 1: Case summaries of individual cases with goals and therapy plans|
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SRM, an 18-month-old girl, had a history of delayed acquisition of developmental milestones since early infancy. She was unable to hold her head and could not sit without support. She had been born at home, and there was a history of delayed cry at birth. The nutritional status was normal. The clinical phenotype was predominantly motor delay with spasticity and no visual or hearing impairment and the diagnosis was evolving cerebral palsy. The child was enrolled in our program when the parents expressed inability to go to the DEIC for further management. After HBEI was provided across 12 home visits [Table 1] and active parental participation, the child has progressed to standing with support and playing with toys [Figure 1].
|Figure 1: SRM before and after HBEI. HBEI: Home-based early intervention|
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SM, a 5-year-old boy, presented with inability to walk, lack of interest in surroundings, difficulty in following commands, and performing activities of daily living (ADL). There was a history of hospitalization for severe postnatal hyperbilirubinemia. The child had not received any treatment, primarily because the family hailed from a very remote area. Salient examination findings were truncal ataxia and increased adductor tone. His vision was normal. A hearing could not be assessed, but he was responsive to sounds made at a normal conversation level. A clinical diagnosis of ataxic cerebral palsy with cognitive impairment was made. After 15 weekly sessions of HBEI [Table 1], the child has started walking with minimal support and can even walk a few steps without support. He has started responding to stimulation and engaging in interactive play. On our instruction, the parents have procured orthotic shoes and constructed indigenous walking bars, which have been beneficial.
AB, a 5.5-year-old boy, was identified with decreased movement of limbs, drooling, and generalized tonic–clonic seizures that occurred once or twice a month. The child had partial head control; was unable to reach for objects; was nonverbal with poor use of gestures; and displayed interest in others. However, it was noted that he was always kept in bed, and family members hardly interacted with him while taking care of his basic needs. The perinatal history was significant; prolonged hospitalization for prematurity, low birth weight, and birth asphyxia. Despite having multiple medical problems, the child had never received any treatment due to financial and logistic constraints. Hypertonicity was marked in the lower limbs. No visual or hearing impairment was noted. A diagnosis of spastic diplegic cerebral palsy with cognitive impairment and seizure disorder was made. The child was started on antiepileptic drugs. The CTP initiated customized therapy [Table 1]. After 17 weekly home-based sessions, the child has shown marked improvement. He can sit up independently, stand with one handheld, and has developed good hand grasp. He has become more interactive and tries to play with toys. However, despite repeated counseling, family involvement remains suboptimal.
A 6-year-old girl, HB, presented with age-inappropriate understanding, play, and behavior; parallel to that of a 3-year-old. The child was nonverbal and displayed profuse drooling. Parents had noted the problems from the 2nd year of life, for which they had consulted local practitioners, but had eventually given up when there was no improvement. Hearing and vision were apparently normal. Post assessment, our clinical impression was Intellectual disability [Figure 2]. The parents were unable to go to the DEIC due to 3 younger children at home with no one else to supervise them. The weekly therapy plan [Table 1] was provided by the CTP who involved the parents in play, ADL, and speech training while laying emphasis that all family members should interact with the child at every possible opportunity. After 3 months, the drooling had decreased, her speech had evolved to 2–3 meaningful words, and she can recognize two colors.
RP, a 6.5-year-old boy, was identified with a developmental delay since infancy. As he grew older, it became apparent that there was no locomotor impairment, but his slow understanding caused difficulties in following instructions and his performance in ADL. Although he liked toys (albeit his interest had appeared late), he lacked age-appropriate play and had a short attention span. The child was shy and withdrawn, but there were no stereotypic behavior or overt sensory issues. The parents had never sought medical advice for his problems. A diagnosis of intellectual disability with autistic traits was made, pending a hearing assessment and formal assessment for autism spectrum disorder. His parents were taught how to play with the child and involve him in ADL [Table 1]. Following 18 sessions, the child has become more interactive, is engaging in group play and has been enrolled in the local school.
| Discussion|| |
We started running a weekend development clinic in Purulia in 2011, where our team offered free, voluntary service. It was observed that though initially there were many patients, almost two-thirds of them dropped out after a few visits due to the various aforementioned reasons. It was felt by all concerned that providing home-based therapy by people residing in the community would probably be a more viable solution. That is how the present program was conceived and came into existence. The main challenge was provision of high-quality therapy by the grass-root workers that required diligent monitoring by specialists. This was achieved by partnering with a community-based rehabilitation program in South India launched by a nongovernment organization, ASSA, and adopting mVBR-EI by all members of our team.
HBEI programs for children with NDD have been implemented in various LMICs in several ways. Community-based rehabilitation with parent-based interventions is practiced in more than 90 countries.,, A few HBEI programs by community workers are being implemented in India, Bangladesh, and Vietnam.,, The majority of these programs target cognitive delays, communication, and psychosocial disorders rather than motor disabilities such as cerebral palsy. The probable reason for that is because the latter requires more specific training, and unsupervised parental intervention programs alone may not be beneficial.
The uniqueness of our program is that: (i) trained CTPs deliver structured therapy programs at the beneficiary's home and involve family members in the process; (ii) impairments in multiple developmental domains are addressed, and (iii) a mobile application is used for quality control, thereby assuring standardized service delivery, but at a much lower cost.
The CTP has created a positive impact on the lives of the beneficiaries. These children had been living with their challenges unattended to, due to a lack of awareness about available services and logistic issues. Their families were burdened with poverty, illiteracy, and the fear of social taboos associated with disability. In these circumstances, the CTP offers a beacon of hope by listening to their unique problems, offering continuous customized need-based care, and involving them in the process and decision-making. For example, for a busy village mother promoting self-feeding skills in a child with hemiplegic CP is more important than learning how to hold a pencil. The empathy and concern shown by the CTP who belonged to their community created a major socio-emotional connect which had a positive impact on the families. Although improvement has been documented in all these children (and many others), we have observed that the post intervention improvement has been most marked in younger children, which reiterates the importance of early detection and timely intervention.
Our approach focuses on increasing parental awareness and their hands-on involvement in activities directed at skill development. This has resulted in a positive behavioral change among family members. We choose to focus our interventions around Dr. Rosenbaum's famous 'F-words (Function, fitness, family, friends, fun and future): Attention is paid to enhancing “functionality” of the child; increasing ability to socialize with “friends” and “family;” promoting physical and mental “fitness;” enhancing the scope for enjoyment and having “fun” (for the entire family); and allowing parents to look forward to a brighter “future.” Nonetheless, the most apparent limitation of our program is that despite the use of technology and meticulous monitoring by experts, the services provided by the CTPs cannot be expected to be absolutely on par with services offered by professionals. Research aimed at evaluating the long-term impact of our program is required to determine the utility of our program.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form, the patients have given their consent for their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
The author would like to acknowledges, with gratitude the contribution of the therapist team and field staff of UDBHAAS Child Development Centre, NANRITAM for execution of all the field work.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]