SUMMARY

Introduction:

Chronic illness like GD carries the potential to impact on the life of the family. Lifelong treatment and complications of GD could affect emotional functioning, daily activities, family experiences and occupational capabilities of patients and their caregivers. Though treatment (enzyme replacement therapy or substrate reduction therapy) ameliorates several debilitating symptoms of GD and improves lifespan, psychosocial and financial impact of a chronic disease on children and family is a continuous lifelong possibility. The caregivers are directly involved in long-term treatments, coordination of health services delivery, and management of the social, financial, and emotional challenges that accompany chronic diseases and these activities have physical, psychological, and economic repercussions for family caregivers . There are no studies on impact of GD on emotional health of caregivers. The present study is therefore conceptualized to explore the psychological impact (Depression, Anxiety and Stress) of a lifelong genetic disease on caregivers of persons with GD.

Objectives:

Our aim is to determine whether there is an adverse psychological impact (stress, anxiety or depression) in caregivers of patients with childhood onset Gaucher disease and to study factors contributing to this burden.

Methodology:

It will be a Single Centric, prospective, observational study to be conducted in the Pediatrics wards/Genetic clinic of K.E.M.H. over 18 months (May 2021-October 2022), after approval by IEC. It will be a convenience sampling and sample size of 60 is expected. The participants will be enrolled according to inclusion criteria. They shall be explained about the study and written, informed consent shall be obtained. An interview shall be conducted with the help of a questionnaire and the case record form shall be filled accordingly.

·  Section 1- Child’s demographic data as well as data about disease and treatment related parameters.

·  Section 2- Parents’ demographic data including socioeconomic Status of the Family.

·  Section 3- Data about Psychological assessment in the form of two sets of questionnaire .This section will be given to the participants to choose the most appropriate responses from the given choices.

ANALYSIS:

This is a observational type of study. Demographic data will be analysed using descriptive tests like mean, median and mode.The data obtained from questionnaire will be assessed in the form of a scoring system.

Correlation studies between demographic / non demographic variables with DASS and CSI-SF scores. Pearson’s product-moment correlation coefficient (r) will be used to investigate the associations between anxiety and the psychosocial, sociodemographic, and clinical variables (potential predictors).