The Intergenerational Impact of the Contaminated Blood Scandal

Wherry, Sally-Anne ORCID: https://orcid.org/0000-0002-2496-1178, Berragan, Elizabeth ORCID: https://orcid.org/0000-0002-3345-6341, Jennings, Ros ORCID: https://orcid.org/0000-0002-5852-9420 and ORCID: https://orcid.org/0000-0002-2496-1178 (2025) The Intergenerational Impact of the Contaminated Blood Scandal. The Journal of Haemophilia Practice. (In Press)

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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 experienced multiple Adverse Childhood Experiences (ACEs) as relatives became unwell or died, experiencing isolation, stigma, grief and loss from society and healthcare professionals. 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. The study examines these experiences through Bronfenbrenner's Bio-Ecological Systems Framework 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 (12 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 emerged including 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 ACEs research, reporting significant psychological impacts, altered treatment choices, and heightened information needs. Many expressed specific needs for understanding and compassionate care from healthcare professionals, 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.

Item Type:	Article
Article Type:	Article
Uncontrolled Keywords:	Haemophilia; Contaminated Blood Scandal; Intergenerational trauma; Adverse childhood experiences; Bio-Ecological Systems Framework; Trust in healthcare; Qualitative research
Related URLs:	https://wherrys.co.uk
Subjects:	H Social Sciences > HN Social history and conditions. Social problems. Social reform R Medicine > RJ Pediatrics > RJ125 Physiology of children and adolescents > RJ131 Children Growth. Child development R Medicine > RT Nursing
Divisions:	Schools and Research Institutes > School of Education, Health and Sciences
Depositing User:	Sally-Anne Wherry
Date Deposited:	07 Oct 2025 09:05
Last Modified:	07 Oct 2025 15:30
URI:	https://eprints.glos.ac.uk/id/eprint/15314

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