A Study of Stress Levels Among Hemophilia Patients’ Relatives

Abstract

In ‘Inherited Genetic Blood Clotting Disorder’ - ‘Haemophilia’, the child victim is saddled with uncontrolled bleeding even for minor cuts and bruises throughout life, hence the close family members and relatives are constantly under a lot of stress to avoid injury episodes in their child who is hitherto basking in a playful childhood age. Mind you this disease invariable affects almost entirely the male child only in particular.  The main reasons of stress for relatives include the chronic joint pains of the child, the mentally draining never ending procedures of repeated blood transfusions, the lack of easy availability of these treatment facilities, the drain on funding resources, and the progression of this disease with little or no relief for an unknown period of time. In cases of hemophilic children, their parents seemingly carry the feel and burden of guilt always due to the ‘Inherited Genetic’ nature of this disease. The levels of stress faced by these unfortunate family members have not been addressed with adequate supportive measures and attention specifically in the Indian context.  The present study focuses on various dimensions and extent of stress experienced by relatives/family members of Hemophilia patients.

The study used financial stress, relationship stress, commute stress, and fear of progression stress to be independent variables, and psychological stress to be dependent variables. The study's focus was on the 300 active members who are affiliated with the 'Hemophilia Federation of (India)'. The questionnaire was circulated to 100 samples using a stratified random sampling method and adhering to inclusion and exclusion criteria. However, only 64 responses were used for further analysis. Psychometrically tested measuring instrument developed by Zimmermann et al (2022) used for psychological stress, relationship stress and fear of progression stress. For financial stress and commute stress the scale developed by Heo, Cho & Lee (2020) and Kluger (1998) used respectively. All the scales were modified in accordance with DeVellis’s (1991) guidelines. The Cronbach's alpha values of all measures were greater than 0.80.

The monthly income of all of these respondents was below Rs. 50000 and belonging to the maturity onset group. The initial descriptive analysis showed that all stress variables were at a moderate level. There is a strong, significant and positive correlation among ‘Psychological Stress’ (DV) and ‘Fear of Progression’, ‘Financial Stress’, & ‘Commute Stress’. However, there is a moderate, significant and positive correlation between ‘Psychological Stress’ and ‘Relationship Stress’. By using Multiple Regression, the study attempted to find out the best predictor of Psychological Stress experienced by the relatives of hemophilia patients.

The reasons behind the findings were discussed using the literature that was available. Identifying the best predictor and other contributing predictors can draw attention from all stakeholders in the healthcare industry, as well as regulatory authorities.