In Focus: Depression in the Caregivers of Disabled Children
According to (Euro.who.int, 2015) “ Depression is a common mental disorder, characterized by sadness, loss of interest or pleasure, feelings of guilt or low self-worth, disturbed sleep or appetite, feelings of tiredness and poor concentration.” While (Adata.org, 2015) defines “a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity”. Similarly according to (Ocakci, 2002) as cited by (Sen &Yurtsever, 2007) “The World Health Organization has defined disability as an inability or handicap that interferes with an individual’s ability to have a lifestyle that is considered normal for their age, gender, and social and cultural state”. Although disabilities are of many types; physical disabilities having defect in bodily parts and mental disabilities like mental retardation, autism etc. But here I will discuss disabilities as a whole in relation to children and caregiver’s mental health.
In a study about depression in care givers of intellectual disabled children in rural settings of Kenya, it is said that “Seventy-nine percent (79%) of the caregivers were at risk of clinical depression” (Mbugua, Kuria &Ndetei, 2011). Mostly it is thought that the individual having any kind of disability is affected in terms of mental health but it is very important to discuss the families who pay their share in bearing the pain of their child’s disability, managing financial burden of their treatment, coming in terms with their own social life and making adjustments in their jobs are actually prone to be depressed. I think this discussion will be a step through which the caregivers will take initiative to care for themselves to stay mentally healthy to support their disabled children in gaining a better life.
We encounter many things in our day to day life but analyzing those experiences is very important to discuss such topics for public awareness. A few months ago I was in hospital for my follow up and I was waiting for my turn to come. A lady of around 30 years of age was sitting next to me seeming very worried and sad.
I was concerned as I saw a young boy of around my age wandering here and there who suddenly sat next to her, asking questions like a child then I came to know the reason of her worry. The lady was finding it difficult to handle him because he was behaving like a child and everyone was watching him. Being there I realized that the caregivers actually suffer a lot dealing and caring for their disabled children.
Disabled children having severe problems are dependent on their families for lifelong care especially when they reach adulthood. Including their care families have to raise their other children and to take care of their aging parents makes life very challenging for them. The long term care of disabled includes health care which is very costly for caregivers because their children need specialized care along with primary care according to the severity of their disability and it is often provided by a healthcare team in collaboration. Likewise the financial burden is also piled up when the case is difficult to identify.
Then the family approaches a higher level facility far away from their locality which demands extra transportation especially with those disabilities in which patient has compromised movement and bounded to some technical support like wheel chairs. All the above mentioned needs are related to health concerns of the child which the family has to tackle but along with these they need special education and schooling for their learning. Moreover their social and extracurricular activities are also very different and structured as compared to other children.
In addition, they need special interventions for their physical and emotional growth in early age but later in adulthood require special programs and training to help them to become independent (Reichman, Corman& Noonan, 2007). Now it’s very obvious that for all such arrangements, families require to do necessary preparations in form of money, time and commitment for their disabled children. As a matter of fact having a disabled child in a family is a different and new experience for every member and it affects family function because financial problems and emotional issues run along with the situation but it also has some positive meaning attached to it, like it broadens family views and gives awareness of their strengths, improves family harmony and make them connected to support groups and religious places (Reichman, Corman& Noonan, 2007).
If we mention the impacts on mental health of parents then it’s noticeably compromised due to stress of having a disabled child which hinders arranging child care, affects their job, and the continuing of education and completing family. The parents may suffer from guiltiness, shame and reduced self-esteem. Similarly parents would not be able to perform other family duties well, unable to give time to spouse which impacts their relationship and significant changes in standards of living and family organization occur. Due to presence of disabled child, parents face problems to balance the facilities for their healthy children and their way of parenting also changes significantly.
Their expectations with healthy siblings increases like they want healthy ones to share responsibility of parents, take part in household and play role in other siblings health and progress (Reichman, Corman& Noonan, 2007). “Studies in the psychology literature indicate that a number of specific child health conditions are associated with poor mental health outcomes of parents and siblings” (Reichman, Corman& Noonan, 2007). Furthermore “the relationship between care giving and health is described generally in terms of stress. Stressors in the context of care giving are the difficult circumstances and problems.
Such demands and obstacles exceed or push to the limit the caregivers’ capacity to adapt” (Mbugua, Kuria &Ndetei, 2011). In addition different factors play their role to make caregivers prone to depression, one of those is financial problems, if the caregiver has no source of income to deal with the cost of treatment of disabled child they can trigger the symptoms of depression, other than that being socially isolated, separation from close friends and stigmatization by society for taking care of child with disability (mental) can play a major role to put caregivers at risk of depression. Moreover the gender is also related to risk of depression. As mothers are responsible to give emotional care to disabled child which results in low self-esteem and loss of their individual life that’s why they become depressed.
Here when the discussion comes to the relationship status then the married care givers are more at risk of depression as compared to single, separated or divorced ones (Mbugua, Kuria &Ndetei, 2011). According to (Russell, 1986) as cited by (Dogar et al. 2013), in Pakistani cultural context it’s the mother’s duty to provide most care to their children therefore they become more stressful during caring for a child with disabilities. In the case of having disabled child we suffer similarly when a dear one is separated from us, we feel so sad that the disabled child will be unable to spend a normal life as others and we go to a denial phase when we can’t accept the child’s disability. Therefore the parents become depressive considering themselves unable to deal with the responsibilities of their child. Such families give up their social lives due to depression (Sen &Yurtsever, 2007).
In the discussion above we have seen the harmful effects on mental health of caregivers caring for a disabled child so it’s vitally important for caregivers to identify ways to deal with this overwhelming situation. According to my opinion, first of all accepting the fact can help, that you have a disabled child and you have to make adaptations to take this responsibility. Secondly taking time for yourself and spending time with family can boost your confidence in yourself that you can do it. Next taking care of yourself, sharing your emotions with a close friends, socializing, continuing the same family routine, celebrating little moments of joy and success with family, being close to your spouse and focusing on others children’s good life and achievements can play a positive role in your lives.
I think everybody will agree that religiosity is a very important aspect of our lives which comforts us from our life stressors that’s why praying and other religious activities can also help in such situations. I agree that a child’s disability is very difficult to deal but it is not impossible to bring yourself back to the optimum level of functioning with such circumstances.
On the other hand, government should also play their role to help caregivers to lessen their burden by providing special education free of cost to these children to enhance their learning abilities and vocational training. It should be provided by government to those who do not have severe disability which can build their confidence and increase their self-esteem. If we talk about severely disabled children either physical having mobility problems or mentally disabled, government should pay their expenses for their rehabilitation purpose and to treat other medical conditions if present. In addition the organizations should also participate actively to improve the well-being of caregivers and their children by arranging counselling sessions for parents who have disabled children and making support groups to increase optimism in such children.
Finally can be concluded that depression in caregivers and child disability is linked together and it is a very serious issue for family. Family as a whole suffers from emotional pain and other issues like financial burden due to expensive treatments, compromised social life due to unavailability of time, affects family bonding due to stress, compromised education, health and parenting to other children but few of positive effects are also seen in these cases like it help families to know what strengths they have which helps them to cope with situation and approach collectively. In the coming years it is needed to do research on identifying alternatives for families to deal with this issue in adaptive ways and their effectiveness to limit the extreme effects on mental health of caregivers; such as depression.
Adata.org,. (2015). What is the definition of disability under the ADA?. Retrieved 29 April 2015, from https://adata.org/faq/what-definition-disability-under-ada
Dogar, I.A. et al. ‘2942 – Anxiety And Depression Among Parents Of Children With Mental Retardation’. European Psychiatry 28 (2013): 1. Web.
Euro.who.int,. (2015). WHO/Europe | Depression: definition. Retrieved 29 April 2015, from http://www.euro.who.int/en/health-topics/noncommunicable-diseases/pages/news/news/2012/10/depression-in-europe/depression-definition
Mbugua, M., Kuria, M., &Ndetei, D. (2011). The Prevalence of Depression among Family Caregivers of Children with Intellectual Disability in a Rural Setting in Kenya. International Journal Of Family Medicine, 2011, 1-5. doi:10.1155/2011/534513
Reichman, N., Corman, H., & Noonan, K. (2007). Impact of Child Disability on the Family. Matern Child Health J, 12(6), 679-683. doi:10.1007/s10995-007-0307-z
Sen, E., &Yurtsever, S. (2007). Difficulties Experienced by Families With Disabled Children. J Specialists Pediatric Nursing, 12(4), 238-252. doi:10.1111/j.1744-6155.2007.00119.x
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