The urgency of mitigating the psychological impacts of COVID-19 lockdowns on parents of mentally disabled children

Dear Editor,

Raising a child with a mental disability puts a significant amount of social, financial, and psychological strain on the entire family. Parents are especially susceptible as they are the primary and only constant caregivers. The difficulty of the task demands that aspects of caretaking be delegated to external agencies to reach an optimal compensation between personal well-being of the parents and nurturement of the child. Amid the haste policies created for country-wide lockdowns, many governments have ignored this vulnerable subset of the population. This is already beginning to manifest as outcries of burnout and could have ruinous long-term psychological impacts. However, this can be mitigated if addressed urgently.

The additional workload of raising such children has led to many parents complaining about feelings of loneliness and a sense of helplessness with their child’s disease. As compared to mothers of normal children, mothers of mentally disabled children often report an increased number of psychological complaints including somatic complaints, depression, and anxiety disorders (Ergün and Ertem, 2012). Additionally, a lack of social support from family and medical professionals such as doctors exacerbate the amount of stress that these parents often experience as there is improper physical follow-up of these patients. To this effect, there are catered systems in place for parents of mentally disabled children that help alleviate some of the burden with the aid of special resources. For example, public schools, and some private institutes, hire teachers that are trained to work with mentally disabled children to help them with basic activities of daily living and provide them with an education. Respite care, as well as other government-funded programs, may be an option for some parents who may need additional assistance. Not only do these options decrease some of the strenuous workload for the parents, but they have also shown a significant reduction in stress compared to parents not receiving these services (Rimmerman, 1989).

Abrupt lockdown restrictions due to COVID-19 in many countries have caused local governing agencies to be ill-prepared in providing services for many subsets of the population but largely affected by this are the parents with mentally disabled children. With the closure of schools in most countries and the limited amount of respite care available, most of these parents are having to care for their children full-time. This deviation from their daily routine and constant caretaking has resulted in disturbed sleeping and eating patterns, limited social interactions, and a constant state of alertness. All these factors could culminate to cause dire psychological impacts on the parents if not addressed immediately. Although some schools will begin to reopen soon, ongoing restrictions and distance learning may not be well-suited for the educational environment that mentally disabled children require. For this reason, local governments should issue Educational, Health, and Care (EHC) plans which can help prioritize the mentally disabled children that would benefit the most from in-person care as lockdown restrictions begin to lift. This way, schools can meet their COVID-19 requirements and provide care for some children at the same time. Additionally, schools that cannot care for all mentally disabled children can distribute information about available local services to parents and provide activities that can increase their social support network. Not only would this help parents with care during these difficult times, there is potential to reduce the long-term stress that they feel from a lack of social support.

When it comes to the mental health of these parents, there is a wider scope of context that must also be considered. For example, there are additional difficulties faced by certain sub-groups such as immigrants who are already struggling with post migration challenges such as acculturation, unemployment, and discrimination (Beiser, 2009). Minorities, who have children with disabilities, face the double minority challenge. A study suggests that such double minority parents struggled in the healthcare system to access the help and services they needed. Another hurdle was also present if healthcare professionals did not possess sufficient intercultural communication skills. The parents felt treated differently from the majority, and this struggle affected their own health as well (Arfa et al., 2020).

The economic devastation caused by COVID-19 can also not be ignored, with large scores of the population facing unemployment as a consequence of this pandemic. A direct effect of this is that unemployment leads to impaired mental health of the working age population. Greater mental health impairment occurs in individuals who have prior work experience, as compared to those who did not have it (Batic-Mujanovic et al., 2017). Households where the fiscal demand is met through the employment of both parents have also been jeopardized. Normally, these parents would outsource care during working hours to special nurseries which have now been shut-down. This forces the parents to reduce working hours or give up their jobs thus leaving them unable to handle the needs of their mentally disabled children such as affording sessions with psychologists, therapists, and educators. Without this crucial support network, their own mental health could suffer. It is important to create awareness regarding this gap present in the ideal healthcare services and the actual conditions faced by such subsets of the population. This situation can be handled by the government intervening and recognizing the need for special summer programs for these children, and making sure that demographic needs of populations such as immigrants and unemployed parents of mentally disabled children are attended to with proper medical assistance and care. Financial assistance may also be provided to parents of mentally disabled children so that they can more easily take care of their children.

It is imperative for policy-makers and healthcare providers to realize and address the struggles of this unique group of people and to mitigate some of the additional stressors caused by lockdowns as they were disproportionately affected. Given the nature of mental health, the consequences of such stressors will unfold over time and thus necessitates a continuous and careful monitoring of those affected (Tandon, 2020). Through a cohesive set of policies, the networks needed for the psychological well-being of these parents should categorically be reconstructed in light of the new COVID-19 era.

CRediT authorship contribution statement

Annas Ghafoor: Conceptualization, Supervision, Writing - review & editing. Khurram Altaf Hussain: Writing - original draft, Data curation. Imaduddin Sawal: Writing - original draft.

Declaration of Competing Interest

The authors report no declarations of interest.