The intergenerational impact of the Contaminated Blood Scandal: a qualitative study
Abstract
Background
The Contaminated Blood Scandal (CBS) infected many people with haemophilia (PwH) with blood-borne diseases. While studies have focused on those directly affected, little is known about the intergenerational impact on their children and siblings. Many adult children were subject to multiple adverse childhood experiences (ACEs) as relatives became unwell or died, experiencing isolation, stigma, grief and loss, from both society and healthcare professionals (HCPs). These experiences occurred within broader ecological systems that compounded their impact across individual, family, community, and societal levels.
Aims
To explore the impact of the CBS on adult children and siblings of affected PwH, including effects on trust in healthcare professionals and engagement with healthcare services; and to understand how individual, family, community, and societal factors interacted to influence development and trauma transmission across generations.
Methods
This qualitative research study used an interpretivist approach, conducted within the haemophilia community by a researcher with member status. Semi-structured interviews with adult children and siblings (13 participants) of PwH affected by the CBS were undertaken. An autoethnographic approach allowed consideration of the researcher’s insider status influences, embracing positionality and subjectivity. Interviews were analysed using six-stage Reflective Thematic Analysis in NVIVO.
Results
Key themes included silence and stigma, mental health impact, intergenerational trauma transmission, life path disruption (education, relationships), and effects on healthcare trust and choices. Participants demonstrated patterns consistent with ACE research, reporting significant psychological impacts, altered treatment choices, and heightened information needs. Many expressed specific needs for understanding and compassionate care from HCPs, with some continuing to self-silence fears to protect their children. Through the Bio-Ecological Systems Framework lens, multiple system levels – from disrupted family microsystems to stigmatising societal macrosystems during the HIV/AIDS era – synthesised to create an environment where compounded effects caused lasting harm.
Conclusion
This group’s life paths have been severely disrupted, resulting in psychological and socioeconomic disadvantage that can impact their children, passing trauma through generations. The trauma level experienced and continued through silencing and denial resulted in PTSD symptoms for some. Participants identified specific needs for healthcare interactions acknowledging their experiences and providing compassionate, transparent communication. Urgent research is needed into care approaches within specialist centres and integration of CBS learning into healthcare education, centring voices of people and families with haemophilia in developing responses.
© 2025 Sally-Anne Wherry, Liz Berragan, Roz Jennings, published by Haemnet Ltd
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.