Type: Research Essays
Sample donated: Charlie Watkins
Last updated: May 27, 2019
Cancer is a major life-threatening disease and has its impact on both patients and their family members. In a study conducted by Indian Council of Medical Research (ICMR) in 2016 the total number of new cancer cases is expected to be around 14.5 lakh and the figure is likely to reach nearly 17.3 lakh new cases in 2020.
Cancer is one of the most common causes of death in adults in India 1. On diagnosis of cancer, families often find themselves grappling with intense emotions and existential concerns at the same time as they are providing support to patients, taking on personal caregiving roles and responsibilities and attempting to remain afloat with other competing life events. Patients and their caregivers may be worrying about using coping strategies and adjust to potential disruptions in routines and activities. Despite efforts to manage care giving demands these may inadvertently exceed caregivers’ capabilities and result in them feeling stressed 2.
The caregivers are the close relatives/family member/individuals assisting for patients. The majorities of caregivers are first degree relatives and reported that their caregiving responsibilities are experienced as a burden. There is a lot of evidence that during advanced stages of illness, caring for chronically ill may adversely effect on family caregivers negatively on quality of life (QoL)3456. Caregiver burden is considered a “multi-dimensional biophysical reaction resulting from an imbalance of care demands relative to caregiver’s personal time, social roles, physical and emotional states, financial resources and formal care resources given the other roles they fulfil.”7 Family caregivers experience a multitude of strains, due to the many aspects of life that are affected by cancers, including communication, nursing care, financial concerns, and emotional conflicts 8. With little or no formal training, family caregivers are called upon to assume shifting roles ranging from day-to-day responsibilities for management of symptoms and side effects, medication administration, transportation to physician, treatment appointments, dealing with fear and uncertainty in diseases like cancer and watching the patient suffer 9.
Quality of Life is defined as “appraisal of and satisfaction with their current level of functioning as compared to what they perceive to be possible or ideal”. It is a multifaceted construct incorporating perceptions of positive aspects of the dimension such as social, physical, cognitive and emotional functions, as well as the negative aspects of dimensions such as somatic discomfort and other symptoms produced by a disease or its treatment (Lehto, Ojanen & Kellokumpu-Lehtinen, 2005)12. While cancer caregiving is a meaningful experience, it is also associated with deteriorating quality of life (QOL),15 greater psychiatric sequele,16 and increased risk of mortality for the caregiver.17 These effects on caregivers also ultimately affect the quality of care received by cancer patients18.The deteriorating QOL among family caregivers of cancer patients may be of significance in an Asian countries, where cultural norms of filial piety19 and societal expectations mandate that family members take on the responsibility of being main caregivers.20 It is therefore essential to identify, understand and support family caregivers and, by extension, their care recipients. This study will aim to assess the burden on caregivers of cancer patients and its impact on their quality of life.