Qualitative study of the consequences of vaccine-induced immune thrombocytopenia and thrombosis: the experiences of family members.

OBJECTIVES: To explore the experiences of family members of patients who died or survived following a diagnosis of vaccine-induced immune thrombocytopenia and thrombosis (VITT). DESIGN: A semistructured qualitative study, conducted via Zoom. SETTING: Participants discussed their experiences during hospitalisation and following discharge. PARTICIPANTS: Sixteen family members of patients with VITT (survivors=11; bereaved=5), recruited via a Facebook support group and advertising on Twitter. RESULTS: Analysis identified two themes common to both groups of participants: the stress of hospitalisation and the experience of multiple losses. A third theme, living with VITT, was unique to the survivor group and a fourth, battling against the system, was predominantly reported by bereaved participants. CONCLUSIONS: This is a significantly challenged group of people, with multiple emotional, financial, social and psychological losses. These losses have been compounded by experiences of limited governmental and societal recognition of the problems they face.

Living with vaccine-induced immune thrombocytopenia and thrombosis: a qualitative study.

OBJECTIVES: To explore the experiences of people up to 18 months after being diagnosed with vaccine-induced immune thrombocytopenia and thrombosis (VITT). DESIGN: A semistructured qualitative study, conducted via Zoom, of a cohort of people with VITT. SETTING: Participants discussed their experiences of hospitalisation and following discharge. PARTICIPANTS: 14 individuals diagnosed with VITT, recruited via a Facebook support group and advertising on Twitter. RESULTS: Thematic analysis identified challenges of obtaining medical care and diagnosis; fear of the severity of symptoms and unclear prognosis; and lack of family support due to isolation imposed by the COVID-19 pandemic. Once home, participants experienced continued significant symptoms; fear of recurrence; inadequate medical knowledge of their condition; and difficulties coping with residual physical disabilities and psychosocial losses. Also reported were feelings of isolation and abandonment due to lack of government support. CONCLUSIONS: This is a significantly challenged group of people, with multiple health, financial, social and psychological losses. These losses have been compounded by experiences of limited governmental and societal recognition of the problems they face.