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Study of Parental Perceptions on Health & Social Needs of Children with Neuro-Developmental Disability and It's
Nusrat Jahan Rafique Ansari1, Ramchandra Keshav Dhongade2, Preeti Sagar Lad3
1Assistant Professor, Department of Pediatrics, HBTMC & DR R N Cooper Hospital , Mumbai, Maharashtra, India .
Insights
Families of children with Neuro Developmental Disorders (NDD) face significant challenges. This study highlights their unmet needs and the importance of support systems for caregivers.
Area of Science:
- Pediatric Neurology
- Developmental Pediatrics
- Family Medicine
Background:
- Neuro Developmental Disorders (NDD) impact children's development, presenting physical and psychological symptoms.
- Families of children with NDD encounter numerous challenges, necessitating increased awareness and improved service accessibility.
Purpose of the Study:
- To explore parental perceptions of health and social needs for children with NDD.
- To understand the impact of disability on families with affected children.
- To assess parental views on the availability and utilization of services for children with NDD.
Main Methods:
- Interviews were conducted with parents of 30 children diagnosed with NDD.
- A questionnaire gathered data on child and family demographics and parental perceptions of needs.
- Analysis focused on health, social needs, and service availability from the parental perspective.
Main Results:
- Cerebral Palsy was the most common diagnosis (13 cases); most were diagnosed by General Practitioners (22 cases).
- Inability to walk was the primary parental concern (17 cases); feeding and bathing posed daily care challenges (10 cases).
- Few children received specialized support; most parents desired basic literacy skills, with spiritual practices aiding coping; caregivers experienced significant stress, with some mothers quitting jobs.
Conclusions:
- Findings can inform the development of supportive activities and stigma reduction strategies for families with disabled children.
- Caregivers of children with NDD experience substantial physical and mental stress, underscoring the need for their health to be prioritized.
- Establishing caregiver support groups and providing comprehensive rehabilitation resources are crucial for enhancing caregiving and family well-being.
Introduction:
The term Neuro Developmental Disorder (NDD) is used for conditions caused by a dysfunction in any part of the brain or nervous system, resulting in physical and/or psychological symptoms as a child develops. Family of children with NDD face many problems. It is very important to find them and create awareness so that gaps in essential services and supports can be decreased.
Aim:
To explore parental perceptions on health & social needs of children with NDD, to understand the impact of disability on the families having children with disability, and to find out the parental perceptions on availability of services for children with NDD and its utilization by families.
Materials And Methods:
The parents of 30 children with NDD were interviewed using a questionnaire and data elicited in these interviews were analysed. The questionnaire had preliminary information about parents and child with NDDs, socio-demographic profile of the family and the parental perceptions on health and social needs of their child having NDDs.
Results:
There were total 30 patients 17 were males and 13 were females. Most of the patients suffered from Cerebral Palsy (13 cases) and were diagnosed by General Practitioner (22 cases) while Developmental Neurologist/paediatrician had diagnosed remaining cases of NDD (8 cases). Most common disability for which parents were worried was inability to walk (17 cases). Common difficulties countered in daily care by parents were feeding and bathing (10 cases). Only 2 children were given assistance with tuition & psychologist (cases of ADHD). Most of the parents knew about special schools but didn't know which place such facilities were available and none of the children were attending special schools. Twenty two parents said they have no plans for the future studies but wish that at least child learns to read & write. With help of spiritual power (doing prayers and pooja) 25 parents got courage to face the difficulties and discrimination. Two parents required antidepressants. Six Mothers had to quit their jobs so as to concentrate and give more time to their children. 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.
Conclusion:
The findings can be utilized in developing supportive activities for families with disabled children. It addresses the need for new prospective of stigma reduction in our society. The study has found that the care givers of child with NDDs suffer from significant physical and mental stress, and their health should be taken into consideration. The study has found need of "care givers' support group". The professionals can help parents in establishing positive thinking towards care giving. There is need of provision of comprehensive and latest rehabilitation/ support resources & information.
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