Understanding the Psychosocial Impact of Oral Cancer on the Family Caregivers and Their Coping up Mechanism: A Qualitative Study in Rural Wardha, Central India

Abstract

Background: A family caregiver is the one who provides care to their near and dear one who is suffering from some debilitating disease like oral cancer. Apart from providing physical care, they also provide emotional and financial support to their close relatives. They can be the patient's spouse, children, and siblings. This study was, hence, designed to understand the psychosocial impact of caregivers of oral cancer patients.

Methodology: This was a qualitative study using in-depth interviews of 24 purposively chosen family caregivers irrespective of age, sex, and relationship with patients, who provided deep insight into the psychosocial impact of the disease on themselves during caregiving of their loved ones and how they coped with it. Interviews were taken in Hindi, in the houses of caregivers. Care was taken to maintain utmost privacy while taking the interviews, which were either audio recorded or noted down. Informed written consent was obtained from participants before the start of the study. Themes were evolved from the interviews and content analysis was performed using ATLAS.ti.

Results: Six themes emerged after data analysis. Those were the impact on physical health and lifestyle, emotional impact, impact on family and social relationship, impact on financial and work status, improvement of hospital services, spiritual concern, and acceptance of the disease. A concept map was made to provide a vivid explanation of how oral cancer caused these impacts on caregivers and their interrelationship.

Conclusion: Caregiving is not an easy job. This study recommends extra care to be taken in preparing them for caregiving to the oral cancer patients with adequate knowledge of the disease process and its consequences along with counseling facilities in the hospital to address the different psychosocial needs of the patients.

Keywords: Caregiver; coping up; oral cancer; psychosocial impact; quality of life.

Figure 1

Concept map showing psychosocial impact of oral cancer on caregivers. Color code - Red (box and arrow): Negative theme, Green (box and arrow): Positive theme, bold arrow: Direct association, broken arrow: Indirect association