“You never know how strong you are until being strong is the only choice you have”
– Cayla Mills
When a child is diagnosed with cancer the entire family is thrown into a crisis mode and it impacts the quality of life, mental and physical health and activities of daily living. It is observed that they experience a roller coaster of emotions during the diagnosis throughout their child’s cancer treatment.
Adjust To the identity
Through my interaction with few family caregivers, their initial response to their child’s diagnosis was shock, disbelief, denial, frustration, anger along with financial distress, marital or familial discord and prolonged or complicated mourning. Because the parental role is inherently a caregiving role, a cancer diagnosis multiplies the caregiving demands of the parents.
They still maintain all of their other caregiving responsibilities and along with that they must adjust to new and critically important responsibilities during the initial diagnosis period wherein the family must adjust to the identity and role ship. Most of the time it has been seen that the shift starts even before diagnosis when they start suspecting the illness and during the treatment process, it is noticed they sometimes become a counsellor, medical technician and guide to other caregivers.
Don’t Be A Negative Caregiver
Through my interaction, its observed that family becomes more trained to identify and respond to severe side effects of the treatment and also includes them during any invasive procedures. Most of the families have reported the most negative effect of caregiving is to be physically and emotionally stronger and sound in front of their children and other family members. Most of the family divide the role and responsibilities so that they could be involved in the treatment procedures of their ward more effectively. According to them, they are more than happy to take assistance from others as it will ease them from the responsibilities. They have reported that if timely education about the child’s health from the team, support system from family members, friends and others would reduce the burden.
Take A Whole New Dimension
But, when the child is facing the end of life period, the family members caregiving takes a whole new dimension. Where they have to balance the hope for a cure as well as the reality that their ward may not live for long. They strive to keep the child free from pain and suffering while they simultaneously try to manage their own emotions. In some case when a cure is not likely when a family has an extreme sense of fear regarding the child’s well being. It has been the child who guides and helps them in those difficult times.
Hence it is very important to provide necessary assistance by providing knowledge about the diagnosis and treatment options, coping tools and support network to help family handle the intense physical and emotional distress, feeling of isolation and loneliness and also help them with informative resources to ease the financial strain at the time of crisis.
Ms Anitha Bharathan
Consultant Clinical Psychologist