Lived experience of primary caregivers of an immediate family member diagnosed with blood dyscrasia

Date of Completion

2010

Document Type

Thesis

Degree Name

Bachelor of Science in Nursing

Keywords

Caregivers, Paraproteinemias

Abstract

This study used a qualitative research design particularly the phenomenological approach. The participants were selected through purposive or judgmental and snowballing sampling. Ten (10) participants consented to participate in this study. Out of 10 participants, eight (8) are caregivers of their son(s) diagnosed with hemophilia. One (1) participant is a caregiver of an immediate family member diagnosed with Idiopathic Thrombocytopenic Purpura (ITP) who lost his family member to ITP in May of this year. The last participant is a mother of a child with Von Villebrand’s Disease. The researchers gathered subjective experiences of the participants with thorough interviews and observations of participants’ non-verbal cues during interviews. Data was analyzed through Colaizzi’s method. The study concluded that behind the studys’ compelling story arose the emotions and feelings toward the events leading up to the diagnosis and the aftermath. Such feelings include hopefulness, worry, denial, anger, sympathy, empathy and acceptance. Protectiveness was the primary behavior manifested in order to prevent injury which could lead to episodes of bleeding. The need to be strong in front of their family members served as the caregivers’ emotional and psychological protection for their family members especially during difficult times. Acceptance became evident as the participants tried to make the best of the situation in order for their family member to live a life that is as normal as possible. The study also concluded that care for a family member with blood dyscrasia is its own “roller coaster” – that hardships and sacrifices can be overcome not only with determination and perseverance but with devotion and love for their family member. The caregivers’ support for each other have also helped them in times of difficulty and in uplifting their spirits especially in the beginning.

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