Caregiver stress and burnout
The environment in which children grow is so important for their healthy development.
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For children with special needs, this environment largely consists of the adults who care for them.
The role of such caregivers in fostering good physical and mental health is so crucial.
By supporting such persons and helping to resolve the systemic inequities that these families face, we are helping to ensure that the environment the children are growing in is health-promoting.
The demands of caregiving can be exhausting and overwhelming for parents and families living with a child with a special need.
Special need
A child with a special need is one who requires extra care because of a physical challenge, mental impairment, speech and language impairment, emotional disability or learning disability.
These special children are different from children without impairments in that; they are 25 per cent more likely to be wasted, 34 per cent more likely to be stunted, 24 per cent less likely to receive early stimulation and responsive care and 49 per cent more likely to have never attended school.
The sadness and difficulty that parents and families experience when they get to know about their child’s disability can be traumatic.
The dreams they had for these children seem shattered and most parents are consumed by grief.
Overtime, the demands of the caregiving can even make some parents antisocial as they give all their time to the child.
Suspicion
Some parents live with a guilty suspicion that it might be their fault for having such a child, and live with a constant fear of what might happen next.
They are stressed by unending visits to hospitals and therapies (where available).
They may miss out on various social events because their child’s disability prevents them from participating successfully.
In the event where they make it to social functions (barring all accessibility odds), they may encounter persons who even criticise and judge them for their kind of parenting without even knowing or understanding the child’s disability.
Challenge
One major challenge is the strain on family finances.
In most families in Ghana, at least one parent ends up giving up on their job in order to give maximum attention to their child.
They are compelled to take such decisions in situations where there are no schools or specific places of care they can leave their child, whilst they go to work.
All these challenges and more (including disrupted spousal relationships), can take a toll on the health and state of mind of caregivers eventually leading to burnout.
At this point, both the child and the caregiver suffer a lot.
A burnout is a state of emotional, mental and physical exhaustion.
This is the reason such parents and families must be supported and encouraged to pay attention to self-care.
The first hurdle is to deal with the issue of acceptance.
It is normal for parents and families to go through the processes of grieving with the aim of attaining resolution of diagnosis.
This is the term used to describe the process of acceptance and coming to terms with the diagnosis of one’s child, and pertains to parents’ reaction and coping strategies of dealing with this new situation.
Parents and families must be supported through the initial period of denial.
This may be followed by anger directed at anyone perceived to be worthy of blame.
A period of bargaining then follows.
There’s a mix of depression as parents settle down and they may occasionally feel a sense of acceptance.
At every point in time, certain experiences may trigger any of these feelings.
It is always best to have a psychologist at hand to support such families.
This makes coping easier and bearable.
The writer is a Child Development Expert/Fellow, Zero-To-Three Academy.
E-mail: [email protected]