**5. Psychosocial factors affecting caregiver distress**

Being diagnosed with cancer is a life-altering event in a patient's life. Nature of his/her response to diagnosis, treatment etc. will impact mood of the patient and quality of the social support. Managing strong emotional responses will affect patient's family and vocational exchanges. Similar points could be envisioned for

the caregiver. In a country like India, the caregiver, usually a close family member is the first to receive the news of diagnosis of cancer; even before the patient. During this early period of breaking bad news and details of disease related prognosis, the caregiver goes through psychological problems like- acute stress disorder. Usually, the person may go through phases of disbelief, fear, anxiety, in-ability to sleep, blame, anger and intrusive thinking etc. Now, their lifestyle may never remain the same. They go from the routine activities to a whirlwind of hospital appointments, tests, investigations and consultation with multiple doctors. Consolidating all the information shared with them regarding the disease and treatment during these consultations and then, the mammoth responsibility of taking the right decisions can be quite daunting. The caregivers could quickly move from acute stress to more chronic post-traumatic stress disorder [6–8]. During the stage of active treatment of cancer the caregiver may experience exhaustion, helplessness and disruption of social roles. As the treatment ends and follow up period starts, there may be fears of disease recurrence, long-term treatment side effects, higher vulnerability and sudden isolation. In India, another important factor to consider is feeling of *taboo*. Generally, people fear that if the society comes to know that their family member has cancer, the family will be socially isolated, to the extent that they may be considered bad luck to be around. The constant effort to keep the secret of cancer in the family is a cause of distress. *Collusion* is another important consideration in context of India. The primary caregiver keeps the knowledge of diagnosis or the knowledge of disease prognosis to themselves. They hardly allow the medical team to disclose cancer diagnosis to the patient in order to protect their loved one from mental trauma and resulting distress. But this *conspiracy of silence* between the caregiver and the medical team is a source of constant psychological distress in the patient, as well as the caregiver. The psychodynamics of the family is any way disturbed by the diagnosis of cancer in a family member. Adding on that, the pressure of hiding diagnosis from the patient, all while struggling through diagnostic tests and treatment of cancer will generate stress and tension for the caregivers. Collusion also blocks honest discussions among the family members and preparation for parting. Caregivers may have mixed states and degrees of depression, anxiety, psychological distress; they may find it difficulty in falling asleep or staying asleep. All these affect their quality of life. Collusion, if not resolved is a source of immense distress to family members during bereavement period too.
