|Year : 2018 | Volume
| Issue : 2 | Page : 115-119
Impact of having a child with special needs on the psychosocial well-being of the parents: A cross-sectional study
Aditi S Jambekar1, Manasi S Padhyegurjar2, Shekhar B Padhyegurjar2, Sadhana P Joshi3, Pushpa Shahri4
1 Department of Family Counselling, Haji Ali, Mumbai, India
2 Department of Community Medicine, SMBT Institute of Medical Sciences and Research Centre, Nashik, Maharashtra, India
3 Centre for Child Development, Haji Ali, Mumbai, India
4 Department of Paediatric Rehabilitation, Navneet Hospital, Mumbai, Maharashtra, India
|Date of Web Publication||14-Nov-2019|
Manasi S Padhyegurjar
Flat No. 1 Sanskriti Park, Akashwani, Gangapur Road, Nashik - 422 007, Maharashtra
Source of Support: None, Conflict of Interest: None
Context: Parenthood is one of the most demanding and a major milestone in the life of a couple. The task becomes more complicated if the newborn is a special child with different abilities. Parents suffer from unprecedented stress in the process of child-rearing. Efforts need to be made in understanding the problems faced by the parents and measures such as counseling services need to be made available to help them cope up with the issues. Aims: The aims of this study are (1) to evaluate the impact of having a child with special needs on the psychological, emotional, and social lives of the parents and (2) to assess the perceived need of parents for counseling services. Settings and Design: The design of the study was cross sectional with purposive sampling involving parents of special children who were being treated at two different centers at a suburb of a metro city. Subjects and Methods: Personal interviews were conducted by the researcher in local language. Statistical Analysis Used: The analysis was carried out using Microsoft Excel. Proportions were calculated, and Z-test of difference between two proportions was applied. Results: Dependency (76%), poor communication (50%), behavioral problems (68%), financial constraints (74%), stress and worry (94%), and reduced social life (60%) were some of the problems faced by affected parents. Special children were well accepted by society in general. Acceptance of the affected child by siblings was significantly less than parents (Z = 6.67, P < 0.01). There was a great (96%) perceived need for counseling services though hardly any parents (4%) have ever approached a counselor. Conclusions: Parents of children with special needs face multiple difficulties in day-to-day life. There was a perceived need for counseling services which if made available will help parents to cope up. Family and friends can be more effectively used as resource persons. Support groups of parents will be of help.
Keywords: Children, counseling, parents, psychosocial well-being, special needs, stress
|How to cite this article:|
Jambekar AS, Padhyegurjar MS, Padhyegurjar SB, Joshi SP, Shahri P. Impact of having a child with special needs on the psychosocial well-being of the parents: A cross-sectional study. J Mental Health Hum Behav 2018;23:115-9
|How to cite this URL:|
Jambekar AS, Padhyegurjar MS, Padhyegurjar SB, Joshi SP, Shahri P. Impact of having a child with special needs on the psychosocial well-being of the parents: A cross-sectional study. J Mental Health Hum Behav [serial online] 2018 [cited 2019 Dec 12];23:115-9. Available from: http://www.jmhhb.org/text.asp?2018/23/2/115/270985
| Introduction|| |
Once marriage takes place, the next wishful thinking of the family is that the couple should be blessed with a healthy and normal baby. Society views parenthood positively, but it views the birth of a disabled child negatively. The term children and youth with special needs refers to those children and youth up to 19 years of age who require a significant additional educational, medical, health, and social-environmental support – beyond that required by children in general – to enhance or improve their health, development, learning, quality of life, participation, and community inclusion. As per the Census of India 2011, the percentage of disabled individuals was 2.21% of the total population. This comes to 26,810,557. Out of these, 1,505,624 (5.6%) were mentally retarded.
Troubled marital relationship, guilt and anxiety, economic stress, nonexistent social life, and rejection by their friends and relatives were just some of the problems faced by the parents. Considering the huge volume of number of affected children, it is the need of the hour to understand the issues and extend services to the parents of special children to help them to cope up with the situation. Counseling will play an important role in achieving this. It will help parents to get an insight into their emotional reactions, face the demands and challenges more positively, understand the strengths and weakness of their child better, and last but not the least accept their child.
In this study, an attempt was made to analyze and assess the overall impact of having a child with special needs on the psychological, physical, emotional, and social lives of the parents and their perceived need for counseling.
| Subjects and Methods|| |
The study design was cross sectional. Purposive sampling was done. Parents of special children being treated at two private centers run by charitable trusts (Navneet Hospital, Borivali East, and POSAT Foundation, Dahisar East), in the city of Mumbai were included. Special children covered in this study were children with cerebral palsy, hyperactive disorder, autism, specific learning disability, delayed milestones, learning disability, attention-deficit hyperactive disorder, and intellectual disability.
The questionnaire was semi-structured and was personally administered by the researcher to the participants in local language on one-to-one basis. The responses given were recorded by the researcher. The variables studied were demographic data, clinical diagnosis of the affected child, issues faced by parents in handling the child such as dependency level, communication and understanding, and behavioral problems. Psychosocial issues faced by the parents such as financial problems, relationship with the spouse, and effect of social life were studied. The questionnaire also involved questions regarding acceptance of a child's condition by parents, family members, siblings, and neighbors. Willingness to approach a counselor was also probed.
Parents whose children were diagnosed as those with special needs and who agreed to be a part of the study were included. Parents who did not wish to participate and whose children did not have special needs were excluded from the study. The total sample size was 50. Thirty participants were from Navneet Hospital and twenty from POSAT Foundation. Interviews were conducted in a cabin. Complete privacy was maintained, and there was no disturbance during the interview. Interviewees (parents) were briefed about the research study. Although they were initially reluctant, parents overcame their reservations, discussed their problems, and willingly co-operated throughout the interview. Each interview lasted for about 25–30 min. There was an emotional venting on the part of all the interviewees. The interview was nondirective in nature. The analysis was carried out using Microsoft Excel. Proportions were calculated appropriately.
| Results|| |
The total sample size of the study was 50. The average age of affected children was 5.96 ± 4.37 years. [Table 1] shows the demographic details of the parents. Majority of the fathers (48%) were in service, and 96% of the mothers were homemakers and hence did not actively contribute to the family's income. Seventy-two percent of the fathers had income <50,000 per month. Most of the participants (54%) were staying in joint families, and 74% of the samples were staying in small dwellings of 3 or <3 rooms.
Half of the affected children (50%) were having a history of major complications at birth. As shown in [Table 2], half of the samples (50%) were suffering from cerebral palsy in various forms, followed by hyperactive disorder (16%), 4% of hyperactive children were also suffering from attention-deficit hyperactive disorder, 12% from autism, 6% were diagnosed as learning disability, 2% had attention deficit, and 4% had intellectual disability among other diagnoses.
[Table 3] shows the problems faced by parents in handling of their special children. Sixty percent of the affected children were dependent on their parents for day-to-day activities, out of which 24% of the patients were completely dependent. Half of the patients could communicate well with their parents. Rest communicated poorly or nonverbally with one child not being able to communicate at all. Thirty-four parents (68%) had to deal with behavioral problems by their affected children.
A very high proportion (37, 74%) of the families had mentioned that their child's health issues negatively affected their finances. Almost all the parents (47, 94%) were worrying about their child's condition. Child's condition was not affecting the relationship with the spouse negatively (86%); however, it was affecting the social life of 30 parents adversely. Thirty-six parents were willing to make social appearances with their affected children. Forty-three (86%) parents shared their problems regarding their children with their family and friends.
[Figure 1] indicates that the acceptance of patients by parents, family members, peers, and neighbors was encouraging. However, after comparing the difference in proportion in acceptance of child's condition between parents and siblings (age: 5–10 years), statistically significant difference was observed (Z = 6.67, P < 0.01). This indicates that parents adjusted to the presence of a disabled child; however, siblings found it difficult to accept them. 96% of the parents had never approached a counselor. The parents were asked if they felt the need to share their problems with a professionally qualified person. Majority of the parents felt the need with 96% willing to approach a counselor in the future [Figure 2].
| Discussion|| |
The present study assessed the psychosocial concerns faced by parents of children with different abilities. It has been observed in this study that dependency, communication, behavioral problems, and tendency to worry about their wards were some of the common issues that the parents faced. Review of literature indicated numerous national as well as international studies indicating increased levels of stress due to various reasons among parents of children with special needs.,,,,,,,,,, Managing such problems will require more efforts and skills than parents with normal children.
Our study indicates that finances were a cause of concern for most of the families. Raising a child with mental retardation may be more expensive affecting family's economic stability then raising a typical child. These expenses can arise from medical equipment and supplies, medical caregiving expenses, private education tutoring, adaptive learning equipment, or specialized transports. Studies had also mentioned that parents brought out the point that, in order to match financial requirements for care of the child, compromises had to be made elsewhere. In a study on Impact of Disability of Mentally Retarded Persons on their Parents, it was observed that the maximum negative impact on caregivers was on finance and physical care. In spite of the financial constraints, it was observed in the current study that 96% of the mothers were homemakers with no income per se. A similar scenario has been observed in other studies.
In a study conducted in Anand district, it was observed that unemployed fathers had significantly more negatively affected relationship than the rest of the fathers. It is an interesting finding by some researchers that paid work and leisure activities were the factors that contributed most to reducing the parental stress in mothers of children and adolescents with cerebral palsy. Thus, financial independence will not only reduce their fiscal woes but would possibly lower stress levels among parents, especially mothers.
Child's condition was not having any negative effect on spousal relationship as per our findings. Similar results were observed in other studies. However, it affected the social life of the parents negatively. In a study conducted in western India, one common problem reported by almost all of the participants was that their participation in social gatherings such as marriages and other ceremonies was reduced. They preferred to avoid going out during summers as they perceived going out of station to be difficult. Interactions with relatives were limited to their own homes as they could not visit relatives' houses. Disruption in family interaction has also been reported in other studies.,
In a study conducted in Mangalore, it was observed that having mentally retarded or special child in the family was something to be ashamed. Many parents feared that the neighbors, relatives, and other known people might make cruel remarks about the child or may make them feel more miserable with their sympathies targeting the condition of the child. Contrary to this, in the current study, 72% of the parents were willing to make social appearances with their affected children.
In the current study, affected children were well accepted by parents, family members, peers, and neighbors. Review of literature indicates similar as well as contrary evidence.,,,
Parents adjusted to the presence of a disabled child; however, siblings found it difficult to accept them. Similar findings have been observed in other studies where sibling(s) of the affected child complained regarding the excess attention bestowed on the affected child. Review of literature indicates that a balance had to be achieved between caring for affected child and the siblings. At the same time, there were instances where the siblings of the affected child often took over childcare in the absence of parents.
The interview of the parents by the counselor for the study itself had a positive effect on the affected parents as 96% of the samples who had never approached a counselor showed a positive inclination to do so. Numerous studies nationally as well as internationally have emphasized a positive role of counseling in enhancing the coping capacities and mechanisms of parents of children with special needs.,,,,,
There was an interesting contrary observation in a study in the review of literature in which majority of parents of special children were not having severe negative impact of having a child with special needs. However, a systematic review of literature on the effects of caregiving on quality of life of parents of children with cerebral palsy showed that caregivers of children with CP tended to have high levels of stress and depression and lower quality of life than parents of healthy children. Child behavior and cognitive problems, low caregiver self-efficacy, and low social support were identified as factors that were consistently related to higher levels of stress and depression.
| Conclusions|| |
Counseling services by trained professionals for caretakers should be made available at therapy centers and special schools. Encouraging women to be financially independent will reduce the burden faced by the families. Parents should also be trained to handle normal siblings of affected children. Family and friends can be more effectively used as resource persons. Support groups of parents could be of help. The present study has been conducted in urban settings. Similar studies need to be conducted in rural India to plan effective measures. Furthermore, more research needs to be conducted to understand the parent's requirements in more details. Finally, primordial and primary prevention of the said disabilities needs to be implemented.
The authors would like to thank Mr. Victor Padmakar for his moral support and motivation, management and the staff of Navneet Hospital and POSAT Foundation, Dr. Maya Nanavati, Administrative Trustee, POSAT Foundation, for facilitating data collection, and the parents of special children for their cooperation.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3]