A caregiver is also called as the informal caregiver i.e. people who are not paid, like family members, spouses, friends and neighbours. Caregivers experience high levels of stress and burden when compared to non-caregivers. Home care results in increasing level of physical, financial, and emotional responses. Paid care providers provide care in one’s home or in a care setting like residential facility, long-term care facility, day care, are called as the formal caregivers. There is a dramatically increased number of individuals with autism as well as ADHD over the decade, males are more diagnosed with autism and ADHD than females. (National Collaborating Centre for Mental Health, 2013; Lutz, Patterson & Klein, 2012).
The aim of the study is to examine the caregiver’s burden on comparing Autism and Attention-deficit/ hyperactivity disorder (ADHD).
Prevalence of Autism:
The surveillance study identified overall estimated ASD prevalence was 14.7% 1 in 68 children as having autism spectrum disorder (ASD). With gender differences of 1 in 42 boys and 1 in 189 girls (2014, the Centres for Disease Control and Prevention CDC).
Prevalence of ADHD:
The worldwide ADHD prevalence is between 5.29% and 7.1% in children and adolescents, and at 3.4% and the gender differences in high prevalence among males than females.
An Independent variable is a variable that is the cause of change in the experiment. In this study, we are comparing the caregiver burden of autism and ADHD, so here the cause of caregiver burden is autism and ADHD so that can be considered as the independent variable.
A Dependent variable is a variable that is affected during the experiment. In this study, our dependent variable is caregiver burden which is affected by the independent variable of autism and ADHD.
So it is always the dependent variable that depends on the independent variable. The independent variable doesn’t depend on any variables or in other words, it is independent of all the other variables.
Need for the Study:
· Only a few review of literature related to caregiver’s burdens of comparing ADHD and Autism indicates that this study is limited to a boundary.
· Usually, the field of clinical psychology focuses on the person with the disorder and not much importance is given to the people who are taking care of them i.e. caregiver.
· There have been studies done on the caregivers of Autism separately and ADHD caregiver’s burden separately but only one study focused on comparing both the caregiver’s and the results showed that Autism caregiver’s burden is high on comparing ADHD caregiver’s burden.
· There is high level of burden faced by the informal caregiver’s when compared to the formal caregiver’s because the informal caregiver’s are the parents, friends and the neighbours who are not paid. On the other hand, the formal caregiver’s who are paid and who is not related to the individual with problem. So this study focus on the informal caregiver burden and also focuses on the factors affecting them such as Anxiety, Depression and Stress.
Operational Definition of Caregiver:
Caregiver burden is defined as the extent to which the caregiver’s are affected emotional, social, financial, physical, and spiritual functioning.
Due to the home care situation the stress which is perceived by caregivers is called as the caregiver burden. This subjective burden is one of the most important predictors for negative outcomes of the care situation, for the one who requires care and also for the caregivers. Caregivers are people who support and help a person who is in need of care regularly because of personal and not professional reasons. This indicates every kind of help and support. It doesn’t need to be only the health care and daycare centres in narrow sense. It also includes the relations, friends, acquaintances, neighbours who provide help and support.
Operational Definition of Autism:
Autism is defined as delays in communication and socialization. Symptoms are listed as lack of eye contact, repetitive behaviours. The diagnosing tool may be useful in measuring adaptive behaviour can provide information about children’s communication, socialization, and other behaviour relative to their age.
Autism spectrum disorder (ASD), describes a range of conditions classified as neurodevelopmental disorders in the DSM-5, Individuals diagnosed with autism spectrum disorder must present two types of symptoms:
Deficits in social interaction and communication.
Restricted, interests or activities, Repetitive patterns of behaviour.
Some of the features of these disorders include:
Communication difficulties, social deficits, sensory issues, repetitive behaviours, sensory issues, and in some cases, cognitive delays. These deficits lead to clinically significant functional impairment that are noticed in early childhood. There is a unique form of autism called autistic savantism, where a child can display outstanding skills in music, art, and numbers with no practice.
Types of Autism:
There are three types of Autism Spectrum Disorder:
1. Autistic Disorder also called as classic autism:
Individuals with autistic disorder usually have significant delays in language, Communication challenges and social challenges, and uncommon behaviours and interests. Intellectual disabilities are found in many individuals with autistic disorder.
2. Asperger Syndrome:
Milder symptoms of autistic disorder are seen in Asperger syndrome. These symptoms might be social challenges and unusual behaviours and interests. However, these individuals typically do not have problems with language or intellectual disability.
3. Pervasive Developmental Disorder also called atypical autism:
Individuals who meet some of the criteria for Asperger syndrome or autistic disorder, but not all, these type of individuals may be diagnosed with PDD-NOS. Individuals with PDD-NOS usually have milder and very few symptoms than those with autistic disorder. The symptoms may affect only communication challenges and social challenges.
Operational Definition of ADHD:
ADHD is defined as maladaptively high levels of hyperactivity, inattention and impulsivity. It is based on observation of children’s behaviours: Hyperactivity a restless and shifting excess of movement. Inattention is a preventing sustained effort resulting in disorganised style. Impulsivity signifies premature and thoughtless actions. All these behaviours are shown by the individual children to different extents.
Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental type of mental disorder. Characteristics of this disorder are excessive activity, a problem in paying attention, and difficulty in controlling once behaviour which is not appropriate for a person’s age.
These symptoms seem to appear before the age of twelve years old, the symptoms are present for more than six months, and these symptoms tend to cause problems in at least two settings such as school, home, and recreational activities. Children’s with problem of paying attention may result in poor school and academic performance. Although these symptoms causes impairment, in the modern society, many children with Attention deficit hyperactivity disorder (ADHD) have a good attention span for tasks they find interesting. Hyperactivity restlessness in adults, Attention problems, impulsivity and disruptive behaviour are common in ADHD. Academic difficulties are common and frequent problems with relationships.
Types of ADHD:
There are 3 types of Attention deficit hyperactivity disorder (ADHD):
1. Predominantly hyperactive-impulsive:
The inability to control once behaviour or stay in a particular place or still. Symptoms of this type may include:
Being impatient or uneasy, being not able to sit in a place for a long time, talking continuously, Speaking and saying in appropriate things without thinking, being rude and impatient, interrupting others conversation and having difficulty in waiting for your turn.
2. predominantly inattentive:
Individuals having the inattentive type are usually less active and disruptive when compared to predominantly hyperactive-impulsive type. Symptoms of this type may include:
Becoming easily distracted and missing details, problem in focusing on a particular task at hand, getting bored quickly, difficulty in organizing information and learning them, trouble in completing homework, gets easily confused or frequently daydreaming, not listening when spoken directly, difficulty in following instructions, information processing is slow and mistakes when compared with their peers of same age.
3. Combined type:
Individuals with combined type don’t exclusively fall within the inattention or hyperactive-impulsive behaviour symptoms. Instead, they exhibit the combination of symptoms from both of the categories. Most of the individuals, with or without ADHD, experience less degree of inattentive or impulsive behaviour, but it’s more severe in an individual with ADHD. The behaviour interferes with function at home, work, school, and in social situations and also the behaviour occurs frequently.
The caregiving experience of Autism and ADHD:
The literature on Autism found Parents of autistic kids often experienced problems with combining their daily activities and as well as caring and also many reported with financial problems or some suffered from depressive symptoms.
On the other hand, the literature on ADHD found parents of ADHD kids reported problems such as income, number of siblings, and severity/subtypes of ADHD played significant roles.
The literature on comparing caregiver burden of Autism and ADHD shown that the caregiver burden of parents with Autism is more when compared to the ADHD caregiver burden, and also caregivers of Autism parents suffered from more symptoms of depression and stress compared to ADHD caregivers.
A Relationship between ADHD and Autism:
Autism and Attention deficit hyperactivity disorder (ADHD) can coexist, i.e. the individual can be diagnosed with both conditions. These two conditions may be caused because of a rare gene. This clearly tells that there may also a genetic connection between Autism and Attention deficit hyperactivity disorder (ADHD). Treatment for Attention deficit hyperactivity disorder symptoms may also help treat symptoms of autism. Children’s with Autism and ADHD have the common problem of trouble with paying attention. Children’s with Autism and ADHD have the common problem of trouble with social interactions. This may also include getting into other people’s personal space and avoiding eye contact. These overlapping symptoms can also cause a child to be diagnosed incorrectly with one condition rather than other i.e. Autism rather than ADHD or vice versa.
Caregiver’s Burden of Autism and ADHD:
Common things of stress in caregivers of Autism and ADHD include difficulty in diagnosing because of overlapping symptoms and finding appropriate medical treatment. Attempt to find additional information on available medical treatments and becoming a fit caregiver. Searching and finding a right specialized education and services; financing the care and education of their child; difficulty finding and managing time resources, and maintaining a proper schedule. Requirements for special needs and considerations; and the future of their child. Stress relief can be typically solved through therapy services and social support, but the knowledge about these services and awareness of these resources among caregivers is very limited.
Mental and Emotional Effects of Caregiving:
40% to 70% of family caregivers have clinically significant symptoms of depression. Among them, about a quarter to half of the caregivers meet the diagnostic criteria for major depression. (Zarit, S. (2006). Family Caregivers Assessment).
Approximately 4 in 10 38% of family caregivers find their situation highly stressful (score 4 or 5), 25% of family caregivers report moderate stress (score of 3), and 36% of family caregiver report little to no stress (rating of 1 or 2 based on a 5-point scale). (National Alliance for Caregiving (2015)).
The objectives of the study are:
To measure the level of caregiver burden on children’s with Autism.
To measure the level of caregiver burden on children’s with ADHD.
To compare the level of caregiver burden of Autism and ADHD.
To find the factors affecting caregivers: Anxiety, Depression, and Stress.
The aim of the study was:
To study the caregiver’s burden on comparing Autism and Attention-deficit/ hyperactivity disorder (ADHD).