Founder Director Sarcoma Cancer Care Foundation Faridabad, Haryana, India
Objective: When there is an ocean of unmet needs of Sarcoma patient already and giving that extra fight to overcome Cancer there are more elements that need attention in the Patient Lifecycle management. When a family member is diagnosed with Sarcoma the entire family divides their responsibilities to strengthen the patient and restore life back as healthy as possible. In this endeavor one becomes a caregiver, another as provider, another as meditator and so on. A Care Giver is the one actually managing the treatment as well as the patient. Living every moment of the patient attending to every requirement of the patient. Patient needs become the focus of the care givers, ignoring their own needs. This takes a toll on the care givers where their life comes to a halt and the patient becomes a priority. Some data available for a country shows 33% of care takers giving 85% of their time to patient care. That leaves the Care Givers with no life of their own. Neglecting themselves to prioritize patient care. We discuss the burdens of the care givers and how to reduce them in our study here. We strongly believe attending to the needs of the Care giver will certainly improve the care extended to the patient making sarcoma treatment journey a little easier and less challenging.
Methods: Step 1: A questionnaire-based survey will be done to list the burdens of the Care Givers to understand the areas the care givers most want to be supported both by the hospitals as well as patient advocate groups individually. Also understanding how better they expect to be supported by the hospitals. While most parameters are well taken care of by the hospitals but excellence is always a step ahead. Step 2: Having identified the parameters care givers feel the weakest or needing support a counselling team will be set up in the hospital agreeing for the survey where a counsellor will have an in-person chat with the care givers trying to address the issue if possible. Step 3: In case counselling would not help, the counsellor will try giving volunteer support provided by the patient advocate group. The volunteer will not interfere in the operations of the hospital how so ever. Also, the volunteer would focus on care giver burdens and not on patient care, else the study would lose its focus. Step 4: 3 months activities and progress will be noted and observations derived as to the effect of the support extended to the care giver and its impact. Step 5: Results will be presented with our learnings in the process as well as feedback from the care givers and also what more needs to be done to strengthenen the Care Givers so they can take better care of the patient without neglecting themselves.
Results: N/A This study will certainly address a number of unmet needs not only of the Patient but also the Care Giver. Addressing the Burdens of the care giver will not only support the care giver but the entire family along with the patient. The results submitted in the poster will highlight the impact of the efforts of the advocacy group and the impact it made in improving the life cycle management of the patient by attending to the needs of the Care Giver.
Conclusion: N/A In the treatment of Sarcoma, of course, the patient is the focal point for all and there is a plethora of unmet needs already. This study shifts the focus to the Care Giver with an understanding that the Care Giver has taken a monumental task of taking care of the patient which not only limits to Physical but extends to mental as well as emotional needs while depleting the Care Giver of their own. This study tries to strengthen the role of a care giver by providing extra support and encouraging better care extended to the patient. This Study will certainly highlight the Heterogeneity in Sarcoma care as each care giver will face their unique journey and have unique experiences and requirements.
