This literature review aims to observe the current finding regarding the topic of caregiving for children with disabilities. The key findings of the research include the identification of the factors that influence the children’s well-being, such as parental mental health and resilience. Depending on the caregivers’ ability to deal with the challenges and respond to them, maintaining a positive outlook contributes to the psychological state not only of the caregiver but also of the whole family. Since the children are already struggling all their lives because of the disability and the many limitations that it brings, it is crucial to protect them from additional worries. In order to achieve this, parents have the possibility to attend support groups where they can have additional help and assistance. The feeling of unity and understanding allows parents to avoid the sense of isolation and effectively cope with the tension and stress that caregiving might cause.
Caregiving for Children with Disabilities
Caring for children is a responsibility that each parent should carry until they are adults who can provide themselves with all the necessary goods and conditions for a living. However, there are some cases when younger family members may stay under the parents’ care much longer than the regular children. Some people are born with certain physical or mental limitations, which usually deprive them of the opportunity to lead life simultaneously apart from the caregivers’ assistance. From a very young age and in some situations until the adult age, those children depend on their parents because, without additional help, it is hard for them to survive. Family members who are supposed to play the role of caregivers also experience many struggles connected with the mental, financial and social spheres.
Usually, parents’ emotional state directly affects the children, and both sides may continue unintentionally harming each other. That is why psychological help for parents and caregivers of children with disabilities is crucial for maintaining a healthy atmosphere and relationships in the family. Thus, this paper aims to review the position of children with disabilities, the importance of psychological support for caregivers, and analyze parental resilience and how it affects children’s well-being.
Children with Disabilities
While some children have the possibility to lead a regular life, play, study, and socialize, some have to put extra effort into completing even the easiest duties. According to Jackson et al. (2018), “disability severity (assessed as mild, moderate, severe or profound) is determined by the number of domains of functioning that are affected” (p. 4207). Having one disability is already a severe struggle for the child and their family, especially those who are their primary caregivers. Limitations and inconveniences that children experience throughout their lives on a daily basis vary depending on the degree to which they are capable or incapable of performing general tasks and exist autonomously. Some of them may have low mobility difficulties with studying or managing their overall lives since, because of some disabilities, children may not be able to do self-care. When they reach the age to transition from kindergarten to school, they face many complexities during the process due to the change in the surrounding environment, causing a lot of stress (Waters et al., 2019). However, it is only one of the numerous milestones that children with disabilities have to overcome constantly.
Thus, young people with special needs experience significantly more struggles and challenges than other children with a regular health state. In the first place, their constant dependence on caregivers and need for assistance with even the simplest task limits their opportunity to live a wholesome life. Children with disabilities are more likely to experience difficulties with communication with their peers and be included in the local communities and groups. When they reach preschool age, they face more obstacles entering the new phase of life, leaving the familiar environment, and making attempts to be integrated into society. Parents as well feel pressure and anxiety, which can negatively affect the children if family members do not control their emotions.
Correlation Between Parents’ Mental State and Children’s Well-Being
Childcare is always a demanding process that requires full-time assistance from the parents, and their constant attention to the child might be intense sometimes. However, if the children have disabilities, the process is much more complicated than when a child has stable health. Especially in the cases with autism, it becomes even harder for parents, and their face an additional number of worries connected with psychological well-being compared to other disabilities (Bradshaw et al., 2021). The mental outcomes of the parents and the whole family, in general, depend on the interconnection between the members, mutual support, and the quality of relationships (Migerode et al., 2012). As Montirosso et al. (2021) state, “the high caregiving burden and the increased parental stress can further exacerbate the children’s emotional and behavioral problems, starting a vicious circle (p. 429). Children who feel the pressure and tension coming from their parents towards them may stimulate a worsening in their behavior and even health. When caregivers can deal with the responsibilities, maintain a positive attitude, and avoid excessive negativity, the child feels secure and more relaxed.
Thus, parents’ psychological state directly affects their children, especially the ones with different kinds of disabilities, since they depend on their caregivers much more than their regular peers. When family members are unable to deal with struggles and anxiety and have a low level of resilience, then children start feeling nervous and stressed as well because they rely entirely on the adults. Although parents do not necessarily create a negative atmosphere on purpose, the challenges of caregiving are hard to avoid, and eventually, they have an impact on the whole family. Having the strength and the ability to demonstrate to the children as little disturbance as possible helps protect them from unwanted impact.
One of the crucial factors that allow parents to deal with the obstacles caused by the caregiving of a child with a disability is a high level of resilience. It serves to prevent the usual overwhelming concerns and keep the balance between the positive and negative aspects of life as a caregiver (Montirosso et al., 2021). Resilience works as an adaptive mechanism that allows parents to calmly perceive the appearing issues and solve them staying functional and avoiding the depressive condition (Migerode et al., 2012). Although caregiving is tough, and sometimes family members can be on the edge of burnout, resilience helps to maintain an optimistic outlook on the situation.
Moreover, attending support groups and communications with individuals familiar with the struggles significantly strengthen the ability to resist demonstrations of stress and anxiety. Higher resilience, in general, creates a favorable atmosphere in the family and dispose to the quality of relationships between parents and children and better psychological and physiological states. In turn, the inability to take measures toward the problem’s solutions and is easily affected by the negative moments is destructive for the caregiver, and almost to the same degree, it affects the child.
Psychological Support for Parents and Caregivers of Children with Disabilities
Whether parents of children with disabilities are able to manage the care easily or with some difficulties, the constant pressure of the responsibilities might be exhausting. In order to dedicate their time and efforts to care for children, caregivers often sacrifice their careers and jobs so they would have more time for assisting and helping the younger family members. Consequently, it leads to a financial deficit and low income or even the lack of it. Such changes increase the level of anxiety and impact the mental health of the adults because of the fear and stress about the medication and special treatment that the family may no longer afford. In addition to numerous struggles, many parents tend to feel depressed and lack emotional and physical strength.
In that case, support groups aim to provide the caregivers the resources to help with dealing with daily responsibilities regarding concerns about children with disabilities. Being surrounded by people with similar problems may, in some way, loosen the burden, give an opportunity to ask for help, and stop experiencing feelings of isolation (Gilson et al., 2018). Community positively affects the psychological state of the parent, which in turn translates to the other family members and particularly the children.
Therefore, access to psychological help is an integral part of the parents’ routine in case id they strive to maintain stable mental health and avoid burnout and depression. In such an irregular situation, it is necessary to have a community where the caregivers may find support and relief from the understanding that there are people with the same problems. The suppression of emotions and feelings of isolation can seriously damage the mental state of the parents and reduce their ability to deal with their responsibilities and duties. It is critically important for parents and caregivers to access regular psychological help and support. Even if the caregivers have family members they can trust, partners, or close friends, it is more effective sometimes to spend time and talk with someone outside of the circle.
In conclusion, children with disabilities have to experience many challenges throughout their lives compared to the majority of those who do not have any physical and mental limitations. They require constant care and attention from their parents, which may also often be stressful for adults. Family members can face such challenges as anxiety, isolation from social life, financial issues, and many different outcomes of this responsibility. However, parents should learn how to deal with their feelings because suppressed emotions directly affect the mental well-being of the children. Thus, if the family members have a high level of resilience, they will more easily overcome the obstacles without negative consequences for their loved ones. In that case, support groups can successfully assist parents with disabled children supporting them in their struggles and providing all the necessary resources to keep performing their duties and staying mentally stable.
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Gilson, K. M., Davis, E., Corr, L., Stevenson, S., Williams, K., Reddihough, D., Herrman, H., Fisher, J., & Waters, E. (2018). Enhancing support for the mental well-being of parents of children with a disability: developing a resource based on the perspectives of parents and professionals. Journal of Intellectual & Developmental Disability, 43(4), 463-472. Web.
Jackson, J. B., Steward, S. R., Roper, S. O., & Muruthi, B. A. (2018). Support group value and design for parents of children with severe or profound intellectual and developmental disabilities. Journal of Autism and Developmental Disorders, 48(12), 4207-4221. Web.
Migerode, F., Maes, B., Buysse, A., & Brondeel, R. (2012). Quality of life in adolescents with a disability and their parents: The mediating role of social support and resilience. Journal of Developmental and Physical Disabilities, 24(5), 487-503. Web.
Montirosso, R., Mascheroni, E., Guida, E., Piazza, C., Sali, M. E., Molteni, M., & Reni, G. (2021). Stress symptoms and resilience factors in children with neurodevelopmental disabilities and their parents during the COVID-19 pandemic. Health Psychology, 40(7), 428. Web.
Waters, C. L., & Friesen, A. (2019). Parent experiences of raising a young child with multiple disabilities: The transition to preschool. Research and Practice for Persons with Severe Disabilities, 44(1), 20-36. Web.