Psychological and Physiological wellbeing of Parents of Intellectually Disabled Children!

Intellectual disability (ID)! Yes, you read it right!! A rare topic in India!!!

As per Merriam-Webster's dictionary it is defined as the mild to severe impairment in intellectual ability (Intelligence quotient (IQ) below 70 – 75 (average intelligence IQ: 90-110)) with significant limitations in social, practical, and conceptual skills necessary for independent daily functioning.

Simply, the intellectual disability involves with general mental abilities that affects the functioning of the person. Specifically, it affects intellectual functioning (e.g., learning, judgement etc.,) and adaptive functioning (e.g., communication, independent living) in people and approximately around 1% of the population affected usually more males than females.

“Nearly 1% of population affected with intellectual disability and usually more males than females”

Objective:

The objective of this article is to find out the knowledge/research gaps pertaining to the wellbeing of parents of children with intellectual disabilities and developmental disabilities (DD).?

Psychological impacts vs. Physiological impacts:

There is a great amount of work available in the published literature in the field of intellectual disability pertaining to the psychological impacts in the parents of children affected with ID and DD. As there are many easy mental mapping and computer models exists to capture the agony of psychological stress/trauma a parent goes through while they visit patient care, the data has been captured and computed relatively much easier than physiological impacts. Further, introduction of many electronic monitoring devices for easy data acquisition also hindered the progress of research studies in understanding the physiological impacts in parents of children with ID/DD.?generally, and mothers specifically. Despite huge data base on psychological impacts on mothers of children with ID, DD exists in the literature, majority of these studies’ severely suffered with various qualitative and quantitative issues.

“There is a severe lack of research on qualitative and quantitative understanding of impacts on mothers”

Note: The scientific studies in this domain usually take long time (few years decade) in consolidating the impacts! Despite all great work done by many researchers, we cite very few with pure intention to understand the cumulative gaps in the domain!!

As mentioned above to cite few works, the study by Armstrong (Armstrong and Dagnan, 2011), focused on understanding the influencing factors on attributions of children had smaller sample size with only 18.7% response rate and with 82.1% of children from two parent families, hence it failed to represent the impact on children with single parent.?

The study by Miodrag et al (Miodrag et al., 2015) explored the parenting stress index (PSI) health problems in parents with children with disabilities and chronic health conditions. In this study, the parents were chosen based on their availability for study apart from parents who represents children with disability, that means the outcome of the study suffered with ecological validity.?

Team of Zechella et al (Zechella and Raval, 2016) who explored the challenges faced by parents of these children had relatively smaller sample with no-heterogeneity. Which not only limits the applicability of results to wider groups but also biases the decision making. In this case, study only included the parents from southern part of the India with similar geographic and culture, which seriously limits the validity to other ethnic populations in different geographies.

“Smaller sample size, lack of heterogeneity, ecological validity, ethnic and geographical location of the populations plays critical role in research studies”

Hypothesis generating vs. confirmatory studies:

In this domain there were also many studies based on hypothesis generating rather than confirmatory. Just to cite one example many, the study by Silverstain et al (Silverstein et al., 2011) focused on understanding the depression and post-traumatic stress in low-income mothers with children having DD. In that study, the results interpreted from combination of two distinct pilot studies, hence, validity for single large study and wider applicability of the results is questionable and it lacks the generality.

Despite of all the limitations in various studied focused on understanding the psychological impacts on parents/mothers of children with ID and DD, all of them addressed several important aspects of influencing factors on parenting and demonstrated that the parental stress is extremely high while raising the children with ID/DD.

“Parental stress is extremely high while raising the children with Intellectual disabilities”

What is found so far!

One significant finding from majority of the works in this domain is that the “Parental psychological well-being” shown as important factor in raising these children. However, their physiological health was undervalued or not taken into consideration as an impacting factor in their overall wellbeing.

What is needed further!

The idea of this article is to highlight the need for extensive research to understand the physiological problems of the parents in general and mothers in specific of these children over and above their psychological wellbeing.

"Combined approach to study psychological and physiological challenges of parents of intellectual disability and developmental disability children needed the most"

It is believed that the holistic approach to study and understand both the psychological and physiological challenges faced by the parents of these children would need more attention and proper documentation. The results of these holistic approaches help in making appropriate interventions from home settings to policy level for providing better care to the children and to parents equally."

"Research studies helps in making home level and policy level positive interventions for betterment of parents and children"

>>Hope you enjoyed reading! Happy to hear about your inputs!!<<

Disclaimer: A great amount of prior art literature survey was performed before summarizing points, views, and findings here. And any of these views or findings does not reflect that of any organization where author associated now or in the past.

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