CAREGIVERS BURNOUT RAISING
A CHILD WITH DISABILITIES
Parenting can be described as stressful and exhausting, but caregivers of children with disabilities often have to deal with strain on a different scale. Caring for a child with special needs can become a full time job, as some diagnoses are life-long chronic conditions that may require constant parental support. Some children with special needs may get diagnosed with one or more significant medical problems that require intensive and lifelong care. This could get overwhelming for parents, if they don't have appropriate. support. Without appropriate help parents may lead towards caregiver's burnout, which negatively affects their and their child's wellbeing.
The burnout could emerge from multiple issues, depending on the parents' well being, coping skills and the child's condition. Some of the sources for the burnout could include:
• Feeling isolated from parents and friends. • Feeling overwhelmed by the number of hospital visits and follow ups with different. specialists.
• Having guilt and blaming oneself for the child's condition.
• Having to worry about the child's health and further quality of life.
Coping with financial issues that can result from hospital admissions, follow ups, medications and having to take leave from work because of the child's health conditions.
• Feeling overwhelmed with managing the medication doses and the timings. Fatigue that can occur from their job, duties towards home, and also taking care of their child with disability. Having to manage behavioral challenges such as screaming, temper tantrums, aggression or self-harm.
Dealing with stigma from relatives and the community
Studies have shown that parents of children with disabilities are far more likely than others to experience Anxiety, Depression, Insomnia, and Fatigue.
Caregiver's burnout could present itself as: Constant emotional, and physical fatigue Sleep disturbances and changes in appetite
• Reduced motivation and drop in energy levels
• Low mood, feeling hopeless and helpless
• Increased irritability and resentment towards the child
• Withdrawal from the community
Seeking help and managing the workload Many parents of children with special needs are submerged with the number of tasks and some of the ways to prevent and manage expectations held towards them. From the burnout could be: Prioritizing Self-Care
Parents often put their needs last, sacrificing their well-being. Hence, they are most likely to feel burnout. Self- care is the most important key to all the primary caregivers especially those working with children with disabilities. Simply giving oneself permission to cry, take a nap or take some time out can be recognised as self-care. Social media often portrays carrying for oneself as visiting spas, going for a movie, dining at expensive restaurants, travelling to places. But in reality it involves meeting basic needs such as eating healthy, getting enough sleep, validating one's emotions, seeking help,
taking breaks when needed, and spending time away from children. These activities help the caregivers to provide support and care to their children without feeling overwhelmed and getting fatigue.
Understanding one's limitations Some studies have shown that one of the ways to reduce burnout is to accept that parents aren't superheroes and there is a limit to what they can do. In many cases it's seen that parents will reach a breaking point because they are constantly being taught to give their 100% to the child and get shamed if they take time out for themselves. These parents don't prioritize their sleep and health, hence constantly feeling helpless and anxious.
Identifying and accepting Grief and Guilt Parents feeling guilt and grief are completely normal. But they tend to avoid feeling them as a maladaptive coping strategy. It is very important for them to recognise, accept, validate and manage these emotions in a rightful manner or else they will keep on resurfacing.
carrying the child to hospital, going to multiple departments, purchasing their medications, understanding their diagnosis. and prognosis, empathizing with the child's pain, managing financial difficulties, fighting against social stigma while carrying for the child and fulfilling their responsibilities towards the house.
Seeking help to manage these demands, delegating and dividing responsibilities, creating routine and following it could organize the workload leading to reduced burnout.
These parents often feel disconnected from society. Parents shouldn't feel ashamed of their child's condition and start processing and accepting them. Instead of focusing on what they can't do they should find the positive aspects of living with their children. Parents should seek support from organizations dealing with children with special needs, join support groups that meet in person.
Undoubtedly parenting children with special needs can be stressful, but it can also be a fruitful experience. Small victories can be very exciting for the parents. The children are often aware of these victories, and that can be fulfilling for the family. When parents see beyond the demands, and learn to practice self care, they often are able to see the contentment that special parenting can bring.
Roma Prabhudesal Psychologist - Novi Burval, Goa