The term Neuro Developmental Disorder (NDD) is an umbrella term for any condition that is caused by a dysfunction in part of the brain or nervous system, resulting in physical and/or psychological symptoms as a child develops. A huge range of conditions fall under this heading. Some of the most common are Autistic Spectrum Disorders (ASDs), Attention Deficit Hyperactivity Disorder (ADHD), traumatic brain injury, brain tumour, communication disorders and cerebral palsy, as well as a vast range of genetic conditions such as Fragile X syndrome and Down syndrome.
The World Health Organization estimates that about 10% of the world’s population has some form of disability. Statistics from different sources indicate that in India, 3.8% of the population has some form of disability [1]. Thus, the problem of disability should be looked into seriously in India.
Despite the well documented needs of children with disabilities and their families, gaps in essential services and supports remain. These needs are even more extreme in low-income families [2]. Parents consistently report an urgent, unmet need for respite care, care giving support, household assistance and accessible child care. Approximately 50% of children with a disability require some form of assistive technology (i.e., lifts, hand or arm brace, hearing aids or wheelchairs) and just over half of these children do not have all the specialized aids they need. One in four school-aged children with a disability has an unmet need for special education services or educational aids, and at least 16% have unmet needs for health care services. In 2001, nearly two in five school-aged children with disabilities were unable to participate in social or recreational activities in their community [2]. Focus on creating positive outcomes for all children, which, from a determinant of health perspective means health gains are only possible if a child and family’s basic needs for well-living are met first.
A report recently issued by United Nations International Children’s Emergency Fund (UNICEF), finds that while all children are at risk of being victims of violence, disabled children have significantly increased risk because of stigma, negative traditional beliefs and ignorance. Lack of social support, limited opportunities for education, employment or participation in the community further isolates disabled children and their families, leading to increased levels of stress and hardship [3]. This study summarizes the needs of children and youth with disabilities and their families, including specific factors contributing to available program and policy successes or failure.
Materials and Methods
This cross-sectional observation study was carried out at Sant Dnyaneshwar Medical Education and Research Centre Pune from Pune and nearby villages (aale phata, ambegaon, kothrud, akurdi and kamshet) and was approved by the institutional ethics committee. Written consent was taken from all the parents participating in the study. There were no selection criteria all patients coming to Neurodevelopmental OPD were enrolled after consent irrespective of field of origin. Parents who did not give consent and parents of Children with disabilities other than NDDs were excluded from the study. We had enrolled consecutive children with NDD regularly coming for follow-up at the neurodevelopmental OPD during study period of June 2012 to Dec 2012. Such cases were 30 during this time period so our sample size was 30.
Participants were assessed using a questionnaire with the following information as follows (Appendix I):
Section A: Preliminary information about parents and child with NDDs
Section B: Socio-demographic profile of the family.
Section C: Parental perceptions on health and social needs of their child having NDDs.
Parents were explained about the study and given the questionnaires to fill (assistance was provided in case of language problem, inability to write or inability to read/understand questions). Incomplete data was completed on follow-up visit in few cases.
Data analysis
Answers given by all 30 parents were compiled and parental perceptions were tabulated; proportions and percentages were calculated among the groups [4–13].
Results
Thirty parents of children with Neurodevelopmental disabilities participated in the study over a period of 6 months. Parents of children with NDDs were recruited from follow-up cases coming to Neurodevelopmental OPD. Parents were explained and given the questionnaires to fill and data collected was analysed and results were prepared. There were total 30 patients, out of which 17 were males and 13 were females. Amongst all 30 patients 9 were below one year of age, 19 were between 1 to 5 year and 2 were above 5 years of age. The youngest child with NDD was eight-month-old and the oldest child was seven-year-old [Table/Fig-1]. Maximum number of patients suffered from Cerebral Palsy and minimum with Autism in our study. There were 2 cases of multiple disabilities one was case of Tuberous sclerosis with Hydrocephalus with spastic Cerebral Palsy and second was case of Developmental Delay with CTEV [Table/Fig-2] [5]. According to modified Kuppuswamy’s socioeconomic scale, the population was divided as in [Table/Fig-3]. The results of the interview are tabulated in [Table/Fig-4].
Distribution of patients with NDDs with respect to age (years).
| Age (years) | Number of patients (Percentage) |
|---|
| <1 | 9 (30%) |
| 1 to 5 | 19 (63.33%) |
| >5 | 2 (6.67%) |
| Total | 30 (100%) |
Distribution of patients with respect to type of NDDs [5].
| Type of NDDs | Number of patients(Percentage) |
|---|
| Cerebral Palsy | 13 (43.33%) |
| Global Developmental delay | 7 (23.33%) |
| Hearing impairment | 2 (6.67%) |
| ADHD | 2 (6.67%) |
| Autism | 1 (3.33%) |
| Multiple disabilities | 2 (6.67%) |
| Total | 30 (100%) |
Distribution of patients with respect to socio economic class.
| Socioeconomic class | Number of patients (Percentage) |
|---|
| Lower | 11 (36.67%) |
| Upper lower | 8 (27.78%) |
| Lower middle | 9 (30%) |
| Upper middle | 2 (6.67%) |
| Upper | 0 (0.0) |
| Total | 30 (100%) |
Information on Parental perceptions collected during interview is described above.
| Sr. No | Questions | Answers/Perceptions |
|---|
| | In most of the cases | Others |
|---|
| 1 | Age of diagnosis of NDD | 12-18 Months (21 cases) | Before 1 year (9cases) |
| 2 | Person diagnosing NDD | General Practitioner (22 cases) | Developmental Neurologist/ paediatrician (8cases) |
| 3 | Most common disability parents are worried for | Inability to walk | a) Inability to attend schools with other children.b) Inability to play with other children.c) Inability to express their needs due to either speech problem or other disability. |
| 4 | Patients requiring assistance for daily care (bathing, feeding, combing hair, dressing etc.,) | Yes(18 cases) | Able to manage with minimal assistance(i.e., they were able to feed themselves with spilling when food was served, could assist in dressing, could go to toilet without help) |
| 5 | Common difficulties countered in daily care | Feeding and bathing (10 cases) | Dressing and undressing was difficult in few cases due to spasticity. |
| 6 | Special needsa. Care at home | i) Preparing and giving foodii) Doing exercises taught by physiotherapist. |
| b. Medical | i) Administering medications to the child (anti-convulsants, multivitamins and calcium)ii) Regular follow-up for physiotherapy |
| c. Education | Yes, all parents said education is important but none of the needy children were going to special school. (due to unavailability of such services in nearby area, unaffordability or due to recurrent illness of the child in few cases). Only 2 children were given assistance with tuition & Psychologist. (cases of ADHD) |
| 7 | Special schoola. Knowledge | Yes (20 cases). But half of them were aware that such schools are there but didn’t know which place such facilities are available. | Didn’t have any idea about such facilities available anywhere.(10 cases) |
| b. Attending special schools | None |
| 8 | Educational plans | No, 22 parents said they have no plans for the future studies but wish that at least child learns to read & write. | Some parents (8 cases) wanted their children to study at least 10th standard with help of some tuitions, So that child becomes self dependent. |
| 9 | Is Integration in society possible?? | Yes. (23cases) | No. (7cases) (due to stigma & discrimination) |
| 10 | Behaviour of neighbours & relatives | Supportive & encouraging(20 cases) | Discrimination (4cases)(Few neighbours did not allow their child to mix and play with child with NDD considering it will affect the health of their child) |
| 11 | Attending social gatherings and family functions | Was possible in half cases.(15 cases) | i) 7 parents avoided attending social gatherings or left child alone at home with fear of social stigma and discrimination.ii) 8 parents avoided attending family functions as care of child becomes more difficult at such places. |
| 12 | Did parents face discrimination in the society? | Yes. (Most of the parents had faced with discrimination at sometime or other in the society though neighbour & close relatives were supportive in many cases) |
| 13 | How did they overcome the discrimination? | With help of spiritual power (doing prayers and pooja) many parents (25 cases) got courage to face the difficulties and to overcome discrimination. | Counselling sessions were useful in few cases. (5cases)Two parents required antidepressants. |
| 14 | Impact on the familya. Mother | i. Over worked with child care, as have to do maximum household work too.ii. Increase physical and mental stress. |
| b. Father | i. Increase burden and stress as expenditure for child care and treatment increased due to NDD.ii. Two fathers needed antidepressants.iii. In five cases counseling sessions were found useful. |
| c. Sibling | i. Parents concentrated more for affected child so in few families other siblings were neglected (9 cases). *ii. Due to increase parental stress and expenditure for treatment of affected child other siblings had less freedom and financial support for education and other things (5 cases). |
| 15 | Special changes in the family lifestyle to meet the various needs of child with NDD | a. Mother had to quit her job so as to concentrate and give more time to child. (6 cases)b. Fathers had increase burden of work as expenses increased (12 cases)c. Many parents got strength & courage with pooja and prayers (25 cases)d. Family outings and visits to other relatives decreased. (10 cases)e. Use of wheelchair for travelling with child. (3cases)f. Taking child to garden on weekends so child feels better. (5cases) |
| 16 | Source of information regarding neurodevelopmental clinics, special school and NGOs working for children with NDD | a. Media (Television) 14 casesb. Internet(for educated parents) 4cases | General practitioners/ paediatricians12 cases |
| 17 | Availability of services in nearby area (physiotherapy, special schools, educators & psychologist) | No (22 cases) | Yes (8 cases)(Had physiotherapy facility in nearby areas - 5 cases were attending) |
| 18 | Frequency of follow-up | Two weekly(20 cases) | Every week (7cases)Every month (3cases) |
| 19 | Services foundMost useful | Physiotherapy (11 cases)And counselling sessions (5 cases) | Play therapy. (4 cases) |
| 20 | Experience with services provided | Satisfactory(17 cases) | Problem of arranging money, adjusting time for long travelling and regular follow-up (13 cases) |
| 21 | Rating of facilities in the centre at SDMER for children with NDD (out of 5) | a. Availability- Mean score= 4, N=30b. Affordability- Mean score= 4, N=30c. Acceptability- Mean score= 5, N=30 |
| 22 | Parental suggestions to improve present status of facilities for children with NDD | a. There should be special health care centers for children with NDD in government hospitals (13 cases).b. There should be provision of facility for special education of such children in government schools (4 cases).c. Families of children with NDD should get financial assistance from government. (9 cases).d. Like other health camps, government should organize health and awareness camps for children with NDD in remote areas and villages to remove stigma and discrimination from society (5 cases).e. The cost of health care facilities for such children should be subsidized in private hospitals for poor patients (9 cases). |
* Total 16 families had more than one child. Nine parents felt that they had ignored the health and social need of the normal child at some time or other. Five fathers said that due to increased expenditure on treatment & care of affected child they could not give that much financial support for the other child’s education, but none of them discontinued schooling or education of child for such reasons. We could talk to 5 of unaffected children of all 16 cases, 3 children felt that they were neglected as parents were busy caring for the other child & they felt bad about it.
Discussion
This study was regarding parental perceptions on health & social needs of children with NDD and its impact on the family. The WHO World Report on Disability recommended that increased research is required on the type & quality of rehabilitation services available as well as unmet needs and barriers faced, incorporating user and health care provider view [4]. With this study parental experiences and perceptions have been explored.
In our study 56.67% patients were male, maximum number of patients (63.3%) were in the age group between 1 to 5 years of age & Cerebral Palsy (43.33%) was the most common NDD followed by Global Developmental Delay (23.33%).
In study done by Joneja M et al., who studied profile of children from child development clinic in north India they found 66% of patients were male, their mean age of referral being 54.06±44.4 months & 68.64% patients had GDD 26.2% cases had CP [7].
In our study maximum parents came to know about NDD in their child between 12 months to 18 months. In study done by Joneja M et al., who studied on time of referral of children with Neurodisability and they found 62.8% of children were referred before three years of age and remaining presented at or after 3 years of age [8].
In maximum number of patients (22 cases) diagnosis was suspected by General Practitioners and parents were told to consult higher centres for further management of child. Remaining 8 cases were diagnosed by Developmental neurologists & Pediatricians while following in High risk newborn OPD.
In a study done by Shimpi A et al., about awareness of role of physiotherapy in patients with disability and handicap in the ‘E’ Ward of BMC (Brinhanmumbai Municipal Corporation). There was a significant awareness of Physiotherapy and its various functions (150 out of 196) with a the high number of written informed references (172 out of 196) amongst the referring doctors. However, this study included adults also [9].
Presence of child with NDD affects all the family members. We found that the mother’s health and life was most affected. Most of the mothers had to complete all household work and also to assist child with activities of daily living. She was over worked. Six mothers had to quit their job. Active participation of father and other siblings was less in the child care, as fathers were working and could spend less time with child.
In study done by Yeung et al., they observed that in the population of families with typically developing children fathers remain less involved than mothers and that relative difference remains same across the development [10].
There was even impairment of quality of life of older siblings in one third cases. This was in accordance with study conducted by Rana P et al., who found quality of life of unaffected siblings of neurologically affected siblings of children with chronic neurological disorder was significantly impaired [11].
In the studies conducted by Faculty of Health Sciences, Institute for Applied Health Sciences, McMaster University, Hamilton, it was found that parents’ well-being is significantly impaired compared with that of matched adults. However, this study only dealt with parents of children with Cerebral Palsy [12].
Most of the parents had faced social stigma and discrimination at sometime or other. Coping with discrimination and stigma was one issue where in maximum number of cases it was spiritual power and beliefs which helped parents to overcome the stress. Two parents were on antidepressants and needed psychiatry consultation.
In the study done by Khana A et al., regarding social, psychological and financial burden on care givers of children with chronic illness, 37% parents reported mild depressive symptoms, 38% reported moderate depressive symptoms. Also, mild anxiety symptoms were reported in 50% cases while 17% had severe anxiety symptoms. Disruption of routine life as well as significant higher social and financial burden was seen in care givers of Cerebral Palsy patients. These findings are consistent with our study [13].
In the study done by Baker BL et al., it was found that relative to comparison group of parents of typically developing preschool-age children, parents of children with IDD were more detached, more negative and less positive [14].
In our experience with services provided was satisfactory in 17 cases, while 13 parents reported problem of arranging money, adjusting time for long travelling and regular follow-up.
When compared with the study by Joneja M et al., on parental experience from referral centre in developing country 29.8% had difficulty in bringing the child to CDC due to travelling long distances, they faced hardship in carrying the child and lose their day’s earning apart from spending time and money for their child’s therapy [4].
Limitation
The duration since the diagnosis of NDD might affect the parental perceptions but it was not considered for the enrollment of the subjects in our study.
Conclusion
NDD in child has significant influence on the family in terms of emotional, financial, educational and social issues. It also affects the care of other siblings in the family. General Practitioners (GPs) are first point of contact in maximum number of cases. Therefore, training GPs with counselling and referral as per need of child will help in better management of child. Diagnosis gets delayed in most of the cases. Awareness within the society and training of health care professionals in the management of such children will decrease burden of disease and help in improving their outcome by means of early and timely interventions. More awareness should be created in the society to remove the stigma and discrimination from society. Effective counselling and emphasizing on the involvement of other family members in Child care so burden on mother decreases and care of child improves.
There should be financial support provided to families with disabled child, so parents can concentrate on care of child. Though services are available, but they are not utilized as they should be. Hence, making services more accessible and affordable will improve the utility of services and will be helpful in improving outcome of children with NDDs.
* Total 16 families had more than one child. Nine parents felt that they had ignored the health and social need of the normal child at some time or other. Five fathers said that due to increased expenditure on treatment & care of affected child they could not give that much financial support for the other child’s education, but none of them discontinued schooling or education of child for such reasons. We could talk to 5 of unaffected children of all 16 cases, 3 children felt that they were neglected as parents were busy caring for the other child & they felt bad about it.