{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,14]],"date-time":"2025-11-14T09:48:44Z","timestamp":1763113724967,"version":"3.45.0"},"reference-count":28,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2025,6,10]],"date-time":"2025-06-10T00:00:00Z","timestamp":1749513600000},"content-version":"vor","delay-in-days":9,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2025,6]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Between the 1970s and the early 1990s, over 30,000 individuals in the United Kingdom were infected with human immunodeficiency virus (HIV) and\/or hepatitis C virus following treatment with NHS\u2010supplied blood and blood products, with devastating consequences. This study aims to better understand the psychological support needs of these individuals and their families, and to identify barriers to accessing support in England.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Forty\u2010one individuals infected with HIV and\/or hepatitis C virus and 11 affected family members were interviewed, as well as 14 mental health practitioners and experts involved in psychological support services across the United Kingdom. Data were analysed using a thematic approach.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Only a few infected and affected participants had received mental health support, and only just over half knew about the availability of funding for psychological support from the England Infected Blood Support Scheme. Participants identified a number of barriers preventing them from accessing support. These included personal and social factors such as family responsibilities, stigma and secrecy. Structural barriers to access were a lack of available mental health support, limited understanding among professionals of the contaminated blood scandal, discrimination in healthcare, and difficulties finding suitable therapists and navigating referral systems. When individuals managed to access support, it was often perceived as inadequate or ineffective. Practitioners also identified a substantial need for psychological support within the infected and affected communities, and described support provided as inadequate, with little guidance and limited availability of competent practitioners. Practitioners also emphasised the need for long\u2010term and tailored treatment approaches to address the profound mental and physical health impacts of infected blood.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Existing psychological support systems in England, both public and private, fail to meet the needs of infected and affected communities. Our findings show a substantial and increasing need for accessible, effective and individualised services.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>This study was carried out from August 2022 to August 2023, during the period when the statutory Infected Blood Inquiry was conducting public hearings and soliciting witness statements from people infected or affected by the contaminated blood scandal. A key consideration of our work was therefore the potential additional burden on participants who were asked to reflect on their experiences as survivors and\/or bereaved family members of infected individuals within the broader context of the Inquiry. We were aware of the emotional weight this might place on participants. To address this, we collaborated with several organisations supporting infected and affected individuals in autumn 2022: the British Red Cross, the Haemophilia Society, the Hepatitis C Trust, the Terrence Higgins Trust, and the Haemophilia &amp; Bleeding Disorders Counselling Association. Representatives of these organisations included individuals who had been infected themselves, as well as mental health practitioners. We held extensive discussions with these organisations on the contaminated blood scandal, the experiences of those impacted, and the support available. They also provided feedback on our draft research materials (information sheet and interview topic guide), which we incorporated into our final versions, and reviewed our findings. In addition, these organisations also acted as facilitators to engage infected and affected people to participate in the study, where this was possible.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70317","type":"journal-article","created":{"date-parts":[[2025,6,10]],"date-time":"2025-06-10T05:55:47Z","timestamp":1749534947000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["\u2018They Just Said It Was My Mood. I Was Trying to Get Attention\u2019: Exploring Barriers to Psychological Support for People Impacted by Contaminated Blood in England"],"prefix":"10.1111","volume":"28","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1755-6676","authenticated-orcid":false,"given":"Eva","family":"Cyhlarova","sequence":"first","affiliation":[{"name":"Care Policy and Evaluation Centre, London School of Economics and Political Science London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica","family":"Carlisle","sequence":"additional","affiliation":[{"name":"Care Policy and Evaluation Centre, London School of Economics and Political Science London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emily","family":"Warren","sequence":"additional","affiliation":[{"name":"Department of Health Services Research and Policy, London School of Hygiene &amp; Tropical Medicine, Division of Psychiatry University College London London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martin","family":"Knapp","sequence":"additional","affiliation":[{"name":"Care Policy and Evaluation Centre, London School of Economics and Political Science London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ellen","family":"Nolte","sequence":"additional","affiliation":[{"name":"Department of Health Services Research and Policy, London School of Hygiene &amp; Tropical Medicine, Division of Psychiatry University College London London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2025,6,10]]},"reference":[{"key":"e_1_2_11_2_1","unstructured":"Archer Inquiry 2009 \u201cIndependent Public Inquiry Report on NHS Supplied Contaminated Blood and Blood Products \u201dhttps:\/\/archercbbp.wordpress.com\/wp-content\/uploads\/2017\/01\/76_lord-archer-report.pdf."},{"key":"e_1_2_11_3_1","unstructured":"Infected Blood Inquiry 2022a \u201cExpert Report to the Infected Blood Inquiry: Statistics \u201dhttps:\/\/www.infectedbloodinquiry.org.uk\/sites\/default\/files\/documents\/Expert%20Report%20to%20the%20Infected%20Blood%20Inquiry%20-%20Statistics.pdf."},{"key":"e_1_2_11_4_1","unstructured":"Haemophilia Society 2023 \u201cThe Contaminated Blood Scandal \u201dhttps:\/\/haemophilia.org.uk\/public-inquiry\/the-infected-blood-inquiry\/the-contaminated-blood-scandal\/."},{"key":"e_1_2_11_5_1","unstructured":"Infected Blood Inquiry 2023a \u201cExpert Report to the Infected Blood Inquiry: Statistics Group (Supplementary) \u201dhttps:\/\/www.infectedbloodinquiry.org.uk\/sites\/default\/files\/2023-07\/Statistics%20Supplementary%20Report.pdf."},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.l1845"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2893.2009.01136.x"},{"key":"e_1_2_11_8_1","unstructured":"Infected Blood Inquiry 2020a \u201cExpert Report to the Infected Blood Inquiry: Psychosocial Issues \u201dhttps:\/\/www.infectedbloodinquiry.org.uk\/sites\/default\/files\/documents\/Psychosocial%20Group%20Report.pdf."},{"key":"e_1_2_11_9_1","unstructured":"Infected Blood Inquiry 2020b \u201cExpert Report to the Infected Blood Inquiry: Psychosocial Issues (Supplementary) \u201dhttps:\/\/www.infectedbloodinquiry.org.uk\/sites\/default\/files\/documents\/2020-09-16%20Psychosocial%20Supplementary%20Report.pdf."},{"key":"e_1_2_11_10_1","unstructured":"Archer Inquiry 2007 https:\/\/archercbbp.wordpress.com\/."},{"key":"e_1_2_11_11_1","unstructured":"Department of Health 2011 \u201cReview of the Support Available to Individuals Infected With Hepatitis C and\/or HIV by NHS\u2010Supplied Blood Transfusions or Blood Products and Their DependantsDepartment of Health \u201dhttps:\/\/assets.publishing.service.gov.uk\/media\/5a7c0217e5274a7318b90776\/dh_125977.pdf."},{"key":"e_1_2_11_12_1","unstructured":"Infected Blood Inquiry n.d. \u201cExplore the Inquiry \u201dhttps:\/\/www.infectedbloodinquiry.org.uk\/."},{"key":"e_1_2_11_13_1","unstructured":"Infected Blood Inquiry 2020c \u201cSir Brian Langstaff Calls on New Sponsor Minister to Cut Through Problems With Psychological and Financial Support \u201dhttps:\/\/www.infectedbloodinquiry.org.uk\/news?tag=492&field_date_value=2020-06."},{"key":"e_1_2_11_14_1","unstructured":"NHS Business Services Authority n.d. \u201cEngland Infected Blood Support Scheme \u201dhttps:\/\/www.nhsbsa.nhs.uk\/england-infected-blood-support-scheme."},{"key":"e_1_2_11_15_1","unstructured":"NHS Business Services Authority \u201cEngland Infected Blood Support Scheme \u201d Annual Report 2022\/23 https:\/\/www.nhsbsa.nhs.uk\/sites\/default\/files\/2023-09\/EIBSS%20Annual%20Report%202022%20-%202023.pdf."},{"key":"e_1_2_11_16_1","unstructured":"E.Cyhlarova J.Carlisle E.Warren M.Knapp andE.Nolte 2023 \u201cPsychological Support for People Historically Infected With HIV and\/or Hepatitis C as a Result of NHS\u2010Supplied Blood Transfusions or Blood Products and for Affected Families \u201d PIRU https:\/\/researchonline.lshtm.ac.uk\/id\/eprint\/4671361\/."},{"key":"e_1_2_11_17_1","unstructured":"Infected Blood Inquiry 2022b \u201cEighth Written Statement of William Vineall \u201dhttps:\/\/www.infectedbloodinquiry.org.uk\/sites\/default\/files\/documents\/WITN4688076-%20Eighth%20written%20statement%20of%20William%20Vineall%20%3B%2014%20December%202022.pdf."},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781473909847.n13"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1080\/2159676X.2019.1628806"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/capr.12165"},{"key":"e_1_2_11_22_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11135-021-01182-y"},{"key":"e_1_2_11_23_1","unstructured":"Infected Blood Inquiry Intermediaries' Report 2019 https:\/\/www.infectedbloodinquiry.org.uk\/sites\/default\/files\/2020-01\/WITN4000001%20-%20Intermediaries\u2019%20Report%202019.pdf."},{"key":"e_1_2_11_24_1","unstructured":"Infected Blood Inquiry. Intermediaries' Report: Supplementary 2023b https:\/\/www.infectedbloodinquiry.org.uk\/sites\/default\/files\/2023-06\/Intermediaries%20Report%20-%20Supplementary.pdf."},{"key":"e_1_2_11_25_1","unstructured":"G.Brunton J.Caird K.Sutcliffe et al. 2015. \u201cDepression Anxiety Pain and Quality of Life in People Living With Chronic Hepatitis C: A Systematic Review and Meta\u2010Analysis \u201d EPPI Centre Social Science Research Unit UCL Institute of Education University College London https:\/\/discovery.ucl.ac.uk\/id\/eprint\/1473446\/."},{"key":"e_1_2_11_26_1","doi-asserted-by":"publisher","DOI":"10.1080\/13548506.2017.1280177"},{"key":"e_1_2_11_27_1","unstructured":"Haemophilia Society 2020 \u201cLack of Specialist Mental Health Support Is Putting Lives at Risk Warns the Haemophilia Society \u201dhttps:\/\/haemophilia.org.uk\/pi_posts\/lack-of-specialist-mental-health-support-is-putting-lives-at-risk-warns-the-haemophilia-society\/."},{"key":"e_1_2_11_28_1","doi-asserted-by":"publisher","DOI":"10.2147\/HIV.S137419"},{"key":"e_1_2_11_29_1","doi-asserted-by":"publisher","DOI":"10.1177\/1557988312464038"}],"container-title":["Health Expectations"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70317","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,11,14]],"date-time":"2025-11-14T09:46:30Z","timestamp":1763113590000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hex.70317"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6]]},"references-count":28,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2025,6]]}},"alternative-id":["10.1111\/hex.70317"],"URL":"https:\/\/doi.org\/10.1111\/hex.70317","archive":["Portico"],"relation":{},"ISSN":["1369-6513","1369-7625"],"issn-type":[{"type":"print","value":"1369-6513"},{"type":"electronic","value":"1369-7625"}],"subject":[],"published":{"date-parts":[[2025,6]]},"assertion":[{"value":"2024-09-10","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-05-18","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-06-10","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70317"}}