Out of the total ten respondents of the in-depth interviews all were mothers of 5 boys and 5 girls with cerebral palsy. The coding and analysis were based on the socio-ecological framework. We adopted the model to analyse the various levels of factors that act as stressors for caregivers of children with developmental disabilities. We present the results here under the various dimensions of the socio-ecological framework as shown in Table 1.
Table 1: Stressors of caregivers classified based on the socio-ecological framework
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Individual stressors
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Interpersonal stressors
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Community stressors
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Environmental stressors
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Health system and policy stressors
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Physical
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Burden of work and lack of rest
Physical aches and pains
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Abusive husband, lack of physical support
Inability to give good care for other children
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No physical support from community members
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Physical accessibility barriers
Difficulty in public transport facilities
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Emotional
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Guilt, blame, worry regarding future of the child with disability
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Emotional abuse by spouse
Guilt of not being able to care for other children
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Sense of isolation in the society
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Worried about how to get around with the child
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Social
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Blame by society on the parents
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Blame by society that she is not caring for the family
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Discrimination in the society
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Non inclusive spaces
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Lack of social support groups
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Financial
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Unable to work, financial burden borne by the individual
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Lack of job options that help the care givers have flexible hours
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Disability welfare support insufficient
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Informational
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Lack of knowledge about care giving options
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Lack of support groups and information
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Individual Stressors
There are several individual level characteristics of the mothers who responded to the interviews which led to stress. These individual level characteristics are typically their knowledge, awareness, physical abilities, beliefs, emotions and feelings. We found that the caregivers had many individual characteristics and attributes which precipitated stress.
Physical stressors:
The primary care giver of a child with developmental disability is usually the mother and the major burden of household work is also usually thrust on her. Caregivers of children with developmental disabilities tend to bear a huge burden of physical work during the process of care giving. This includes moving the child, cleaning the child, feeding him/her, providing physical therapy and playing with the child etc. In addition to all this she also has the work of the household and caring for other children and family members. The women do not have adequate time to rest and recuperate. The lack of rest led to aches and pains in the body and this hampered their ability to provide quality care for the child. This further led to stress.
“I get some time for myself while my child is sleeping. And at that time also I sometimes prefer to complete all the remaining housework. Rest is not feasible in the present situation of my home” – parent of a child with cerebral palsy
Emotional stressors:
Mothers carried the emotions of guilt, blame and worry regarding the disability of their children. The feeling of guilt is strong in the mothers. They felt that it must be something that they did during their pregnancy that led to this condition in their child. They also felt that giving birth to a child with developmental disability is a failure of motherhood. The mothers also had to bear the blame that the society levelled on them.
“The society still blames the parents for the child’s condition. Blame on the parents is very common.” – parent of a child with cerebral palsy
Mothers worried about the future of their child. Their biggest concern was about the future of the child with disability after their life time.
“There is no future for my child. I am always worried about what will happen after our time.” – parent of a child with cerebral palsy
Financial stressors:
The burden of care giving prevents mothers from participating in financially gainful jobs. Even the mothers who are working find it difficult to save money for the future. Invariably having a child with developmental disabilities leads to financial burden. Many times, these financial burdens are borne by the caregiver alone. If a mother manages to save some money despite all these issues, that money gets spent for emergencies.
“Planning for future saving is itself very difficult, because we use any money saved for emergency purposes” – parent of a child with cerebral palsy
Lack of knowledge:
Though all the mothers who were interviewed expressed high level of motivation and awareness about care giving for a child with disabilities, lack of knowledge about options for care giving, support systems and other social welfare schemes was a major contributor to stress.
Interpersonal Stressors
Interpersonal relationships of the caregivers can act as buffers against stress. But sometimes they may also contribute to stress for the caregiver. Often caregivers report the lack of interpersonal support and help as the major stressors. Interpersonal relationships comprise of the immediate family including the spouse and other siblings of the child with disability, extended family including parents, in-laws and siblings of the caregivers, neighbours and friends.
Lack of spousal support:
The caregivers who were mothers of the children with disability, perceived that their husbands were non-supportive. This was a cause for major stress for the caregivers. In addition to lack of support, the mothers also felt stressed by their husband’s alcoholism. The mothers also feel emotionally stressed by the abuse at home. Often the abuse starts after the birth of the child with disability.
“He drinks, smokes and comes home. I don’t allow my children near him when he is drunk. I lock them in a room where they will sleep at night. Even if my husband yells at me and beats me I will not open the door.” – parent of a child with cerebral palsy.
Compromised care for other children:
The caregivers reported having other children who were normal. They were stressed by the fact that they were unable to provide the same kind of attention and care for other children. They also felt stressed when they found others comparing the two children.
“All say that I am wasting my time by caring for this child, and sometimes they say that I should take care of the second child properly.” – 30 year old mother of a 4 year old child with cerebral palsy
“I have two children, though I don’t compare the two children everyone else compares them and talk behind my back. This makes me feel hurt and spoils my mood.” – parent of a child with cerebral palsy
Lack of support by extended family:
Mothers who balance work, family as well as caregiving often feel stressed beyond their limits. They feel the need for support from their extended family. But they feel that extended family do not understand the troubles of caregivers and instead blame them.
“Once in a while we need to be dependent on others because, managing family and kids is very difficult. But sometimes the family doesn’t understand about the child and speaks ill about me and my husband.” – parent of a child with cerebral palsy
Community Stressors
Several characteristics of the community influence the stress in the caregiver. Community structures in urban and rural India are very different. In urban areas communities are individualistic in nature with very little day to day interactions in neighbourhoods. In rural areas communities are more open and day to day interactions are more. Based on this the extent of community stresses will vary. In this study, majority of the participants are from rural areas. Therefore, the findings are representative of rural communities.
Social discrimination against the child and the family:
Caregivers perceived a sense of discrimination and isolation from the community. They felt unable to participate in community events, celebrations or festivals. The caregivers were blamed for the condition of their child. They also felt that the community members spoke behind their backs about their child’s condition.
“I feel very low esteem by the way people around us look at us. I face a lot of problems while travelling by bus and interact with people.” – parent of a child with cerebral palsy
No physical support from community members:
Community members did not understand the special needs of children with CP. They did not adjust with such children and caregivers and openly blamed such parents for bringing their children in public.
“In this society, there are two types of people some understand the child, and some do not understand the situation of the parents with children like ours. Sometimes the child will go and touch them, their saliva will drop on them. They get offended by these and do not understand.” – 36 year old mother of a 7 years old child with cerebral palsy
Environmental Stressors
Several characteristics of the environment stress the caregivers. The environment has been identified as one of the major factors that influence the health and wellbeing of persons with disabilities. Features of the environment, especially in low- and middle-income countries like India, pose a major barrier to active engagement of persons with disability with the society. The environment comprises of the physical environment, the social environment and the attitudinal aspects of the environmental society. Some of the basic needs for a mother who cares for a child with developmental disability are inclusive spaces where she can take the child out to interact with the society, ramps and footpaths where she can take the child out, disability friendly public transport, good attitudes of the society towards children with disabilities and also work places which are understanding of the needs of a caregiver of children with special needs. When these are lacking, the caregiver is put through major stress.
Lack of accessible public transport:
The main environmental interaction for many of the mothers caring for children with developmental disabilities in poor and low resource settings is travel. The caregivers mainly complained about the public transport services which were either completely inaccessible to a mother traveling with a child with special needs or had hostile co-passengers who made it difficult to travel.
“Traveling in the public bus with my child is a problem. The buses are overcrowded. If I leave even one bus to take the next one, I will miss the physiotherapy appointment” – parent of a child with cerebral palsy
“When I travel with my child, often I do not get a seat. In case of long journeys, I cannot eat in the middle of the journey and there are no proper rest rooms for my child.” – parent of a child with cerebral palsy
Lack of flexible timings in workplace:
Mothers who balance work, family responsibilities and caregiving role, found it extremely difficult since the workplace timings are not flexible. Because of this many caregivers are unable to work and support the family financially.
Health System and Policy Stressors
Insufficient disability support by the government:
The government gives a disability pension of Rs. 1500 (USD 22) for every child with developmental disabilities. The caregivers felt that this amount is more of a token amount and is insufficient for providing good quality care for the child.
“The disability card provides 1500 rupees every month, but it’s not enough for even the health care expenses.” – parent of a child with cerebral palsy
Lack of buffers for health expenditures:
Caregivers reported heavy health related expenses, especially expenses related to traveling to a health facility for physiotherapy for the child. They felt that there were no buffers to meet these expenses. The social welfare policies of the government must cover at least some of these health care related expenses.
“I pawn my old jewellery for sudden need of money as I face many financial issues related to my child’s care. I try to manage according to the situation at home and spend money. I do not want to compromise on the care for my child, whatever the financial situation may be.” – parent of a child with cerebral palsy
Lack of support groups and information support:
The government does not organize any support groups of parents with disabilities or do not disseminate any information related to the welfare measures provided for such children. This is a major stressor as the caregivers do not know where to go and what help to seek.