Effect of cancer patients' activity level and psychosocial factors on caregivers' quality of life

Abstract

Cancer as a disease affects the lives of millions across the globe. It is now clear that the cause of cancer is not due to one single event or factors but is multifactorial. In India, breast cancer is the most common cancer among women and is also the leading cause of death. Among men in India, lip, oral cavity cancer is the most common cancer. Head and neck cancer accounted for 30% of all cancers among males. The outcome of a cancer diagnosis can be atrocious. For patients diagnosed with breast cancer (BC) and head and neck cancer (HNC), the physical disfigurement as a result of the cancer treatment can be enormous. It can have a negative impact on the patients' psychological, physical, and social functioning. Cancer patients require assistance and caregiving at some point during their illness trajectory. The persons who assumes the role of caregiving are often family members who are underprepared for the task they need to carry out as caregivers. Hence, these family caregivers as a result of the physical and emotional assistance that they provide to their loved ones often experience negative psychological states (distress, depression, anxiety, and somatization). The upheavals may result in poor quality of life. During the cancer illness trajectory, interpersonal relationship which is open and supportive between patients and their caregivers plays an important role in reducing the negative psychological states and thus resulting in a good quality of life. The present study has the following objectives: 1) To assess the level of psychological states and perception of the interpersonal relationship among cancer patients (BC & HNC) and their family caregivers and assess the quality of life of family caregivers 2) To find out the differences in the levels of psychological states, interpersonal relationship, and quality of life among caregivers, categorized on the basis of patients’ activity levels 3) To find out the agreement or disagreement in perception of the interpersonal relationshipbetween cancer patients (BC & HNC) and their family caregivers 4) To find out indicators of family caregivers’ quality of life 5) To categorize family caregivers of cancer patients (BC & HNC) based on their levels of quality of life and to examine the differences in indicators of their quality of life. The study used between-groups design and included 248 pairs of cancer patients (breast cancer and head and neck cancer) and their family caregivers. Eastern Cooperative Oncology Group Performance Status was administered to the patients. Cancer-Specific Interpersonal Relationship- Form A and Form B and The Four-dimensional Symptoms Questionnaire were administered to both patients and their caregivers. Caregivers' quality of life was assessed using Caregivers Quality of Life- Cancer. Data were analysed using IBM SPSS and MATLAB programming. The results of the present study showed that patients had a higher mean score in psychological states such as distress, depression, anxiety, somatization than their caregivers. However, patients perceived a higher overall interpersonal relationship between them and their caregivers. The result of one-way ANOVA showed significant differences in distress and mutual communication among the three groups of caregivers based on the patients' activity level. The result of feature analysis showed disagreement between patients and their caregivers in their perception of their interpersonal relationship. The result of the hierarchical regression analysis showed that demographic details, specific dimensions of psychological states, and the interpersonal relationship were the predictors of caregivers' quality of life. Based on their quality of life caregivers were categorized into three groups and significant differences were found on dimensions of interpersonal relationship and psychological states. The present study proposed a SMILE model to address the psychological needs, improvement in interpersonalrelationship and thus enhance the quality of life of both patients and their caregivers.Limitations of the study and future directions were also discussed in the study