“You have to change your whole life”: A qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the United Kingdom
Maintaining adherence to treatment for tuberculosis (TB) is essential if the disease is to be eliminated. As part of formative research to develop an intervention to improve adherence, we documented the lived experiences of adults receiving anti-TB treatment (ATT) in three UK cities and examined how...
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Format: | Article |
Language: | English |
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Elsevier
2021-05-01
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Series: | Journal of Clinical Tuberculosis and Other Mycobacterial Diseases |
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Online Access: | http://www.sciencedirect.com/science/article/pii/S240557942100022X |
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doaj-3e43d7a791c3462ca5eb46ea95ad79f4 |
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record_format |
Article |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Aaron S. Karat Annie S.K. Jones Ibrahim Abubakar Colin N.J. Campbell Amy L. Clarke Caroline S. Clarke Marcia Darvell Adam T. Hill Robert Horne Heinke Kunst Mike Mandelbaum Ben G. Marshall Ceri McSparron Ananna Rahman Helen R. Stagg Jacqui White Marc C.I. Lipman Karina Kielmann |
spellingShingle |
Aaron S. Karat Annie S.K. Jones Ibrahim Abubakar Colin N.J. Campbell Amy L. Clarke Caroline S. Clarke Marcia Darvell Adam T. Hill Robert Horne Heinke Kunst Mike Mandelbaum Ben G. Marshall Ceri McSparron Ananna Rahman Helen R. Stagg Jacqui White Marc C.I. Lipman Karina Kielmann “You have to change your whole life”: A qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the United Kingdom Journal of Clinical Tuberculosis and Other Mycobacterial Diseases Compliance Medication Outcomes Determinants Person-centred care Elimination |
author_facet |
Aaron S. Karat Annie S.K. Jones Ibrahim Abubakar Colin N.J. Campbell Amy L. Clarke Caroline S. Clarke Marcia Darvell Adam T. Hill Robert Horne Heinke Kunst Mike Mandelbaum Ben G. Marshall Ceri McSparron Ananna Rahman Helen R. Stagg Jacqui White Marc C.I. Lipman Karina Kielmann |
author_sort |
Aaron S. Karat |
title |
“You have to change your whole life”: A qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the United Kingdom |
title_short |
“You have to change your whole life”: A qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the United Kingdom |
title_full |
“You have to change your whole life”: A qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the United Kingdom |
title_fullStr |
“You have to change your whole life”: A qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the United Kingdom |
title_full_unstemmed |
“You have to change your whole life”: A qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the United Kingdom |
title_sort |
“you have to change your whole life”: a qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the united kingdom |
publisher |
Elsevier |
series |
Journal of Clinical Tuberculosis and Other Mycobacterial Diseases |
issn |
2405-5794 |
publishDate |
2021-05-01 |
description |
Maintaining adherence to treatment for tuberculosis (TB) is essential if the disease is to be eliminated. As part of formative research to develop an intervention to improve adherence, we documented the lived experiences of adults receiving anti-TB treatment (ATT) in three UK cities and examined how personal, social, and structural circumstances interacted to impact on individuals’ adherence to treatment. Using a topic guide that explored social circumstances and experiences of TB care, we conducted in-depth interviews with 18 adults (six women) who were being or had been treated for TB (patients) and four adults (all women) who were caring for a friend, relative, or partner being treated for TB (caregivers). We analysed transcripts using an adapted framework method that classified factors affecting adherence as personal, social, structural, health systems, or treatment-related. Eleven of 18 patients were born outside the UK (in South, Central, and East Asia, and Eastern and Southern Africa); among the seven who were UK-born, four were Black, Asian, or Minority Ethnic and three were White British. TB and its treatment were often disruptive: in addition to debilitating symptoms and side effects of ATT, participants faced job insecurity, unstable housing, stigma, social isolation, worsening mental health, and damaged relationships. Those who had a strong support network, stable employment, a routine that could easily be adapted, a trusting relationship with their TB team, and clear understanding of the need for treatment reported finding it easier to adhere to ATT. Changes in circumstances sometimes had dramatic effects on an individual’s ability to take ATT; participants described how the impact of certain acute events (e.g., the onset of side effects or fatigue, episodes of stigmatisation, loss of income) were amplified by their timing or through their interaction with other elements of the individual’s life. We suggest that the dynamic and fluctuating nature of these factors necessitates comprehensive and regular review of needs and potential problems, conducted before and during ATT; this, coupled with supportive measures that consider (and seek to mitigate) the influence of social and structural factors, may help improve adherence. |
topic |
Compliance Medication Outcomes Determinants Person-centred care Elimination |
url |
http://www.sciencedirect.com/science/article/pii/S240557942100022X |
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doaj-3e43d7a791c3462ca5eb46ea95ad79f42021-05-16T04:24:25ZengElsevierJournal of Clinical Tuberculosis and Other Mycobacterial Diseases2405-57942021-05-0123100233“You have to change your whole life”: A qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the United KingdomAaron S. Karat0Annie S.K. Jones1Ibrahim Abubakar2Colin N.J. Campbell3Amy L. Clarke4Caroline S. Clarke5Marcia Darvell6Adam T. Hill7Robert Horne8Heinke Kunst9Mike Mandelbaum10Ben G. Marshall11Ceri McSparron12Ananna Rahman13Helen R. Stagg14Jacqui White15Marc C.I. Lipman16Karina Kielmann17Institute for Global Health and Development, Queen Margaret University, Queen Margaret University Way, Musselburgh, Edinburgh EH21 6UU, United Kingdom; TB Centre, London School of Hygiene & Tropical Medicine, Keppel Street, London WC1E 7HT, United Kingdom; Corresponding authors at: Institute for Global Health and Development, Queen Margaret University, Queen Margaret University Way, Musselburgh, Edinburgh EH21 6UU, United Kingdom (A.S. Karat).Centre for Behavioural Medicine, Research Department of Practice and Policy, UCL School of Pharmacy, BMA House, Tavistock Square, London WC1H 9JP, United KingdomInstitute for Global Health, University College London, Gower Street, London WC1E 6BT, United KingdomInstitute for Global Health, University College London, Gower Street, London WC1E 6BT, United Kingdom; Respiratory Diseases Department, National Infection Service, Public Health England, Wellington House, 133–155 Waterloo Road, London SE1 8UG, United KingdomCentre for Behavioural Medicine, Research Department of Practice and Policy, UCL School of Pharmacy, BMA House, Tavistock Square, London WC1H 9JP, United KingdomResearch Department of Primary Care and Population Health, University College London, UCL Medical School, Upper 3rd Floor, Royal Free Campus, Rowland Hill Street, London NW3 2PF, United Kingdom; Priment Clinical Trials Unit, University College London, UCL Medical School, Upper 3rd Floor, Royal Free Campus, Rowland Hill Street, London NW3 2PF, United KingdomUCL Respiratory, Division of Medicine, University College London, UCL Medical School, Level 1, Royal Free Campus, Rowland Hill Street, London NW3 2PF, United KingdomQueen’s Medical Research Institute, University of Edinburgh Queen’s Medical Research Institute, University of Edinburgh, 47 Little France Crescent, Edinburgh EH16 4TJ, United KingdomCentre for Behavioural Medicine, Research Department of Practice and Policy, UCL School of Pharmacy, BMA House, Tavistock Square, London WC1H 9JP, United KingdomBlizard Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University, 4 Newark Street, London E1 2AT, United KingdomTB Alert, 22 Tiverton Road, London NW10 3HL, United KingdomSchool of Clinical and Experimental Sciences, Faculty of Medicine, University of Southampton, Southampton SO16 6YD, United Kingdom; National Institute for Health Research Biomedical Research Centre, University Hospital Southampton, NHS Foundation Trust, Southampton SO16 6YD, United KingdomNHS Lothian, Royal Infirmary of Edinburgh, Little France Crescent, Edinburgh EH16 4SA, United KingdomBarts Health NHS Trust, The Royal London Hospital, Whitechapel Road, London E1 1FR, United KingdomUsher Institute, University of Edinburgh, MacKenzie House, 30 West Richmond Street, Edinburgh EH8 9DX, United KingdomWhittington Health NHS Trust, The Whittington Hospital, Magdala Avenue, London N19 5NF, United KingdomUCL Respiratory, Division of Medicine, University College London, UCL Medical School, Level 1, Royal Free Campus, Rowland Hill Street, London NW3 2PF, United Kingdom; Royal Free London NHS Foundation Trust, Royal Free Campus, Rowland Hill Street, London NW3 2PF, United KingdomInstitute for Global Health and Development, Queen Margaret University, Queen Margaret University Way, Musselburgh, Edinburgh EH21 6UU, United Kingdom; Corresponding authors at: Institute for Global Health and Development, Queen Margaret University, Queen Margaret University Way, Musselburgh, Edinburgh EH21 6UU, United Kingdom (A.S. Karat).Maintaining adherence to treatment for tuberculosis (TB) is essential if the disease is to be eliminated. As part of formative research to develop an intervention to improve adherence, we documented the lived experiences of adults receiving anti-TB treatment (ATT) in three UK cities and examined how personal, social, and structural circumstances interacted to impact on individuals’ adherence to treatment. Using a topic guide that explored social circumstances and experiences of TB care, we conducted in-depth interviews with 18 adults (six women) who were being or had been treated for TB (patients) and four adults (all women) who were caring for a friend, relative, or partner being treated for TB (caregivers). We analysed transcripts using an adapted framework method that classified factors affecting adherence as personal, social, structural, health systems, or treatment-related. Eleven of 18 patients were born outside the UK (in South, Central, and East Asia, and Eastern and Southern Africa); among the seven who were UK-born, four were Black, Asian, or Minority Ethnic and three were White British. TB and its treatment were often disruptive: in addition to debilitating symptoms and side effects of ATT, participants faced job insecurity, unstable housing, stigma, social isolation, worsening mental health, and damaged relationships. Those who had a strong support network, stable employment, a routine that could easily be adapted, a trusting relationship with their TB team, and clear understanding of the need for treatment reported finding it easier to adhere to ATT. Changes in circumstances sometimes had dramatic effects on an individual’s ability to take ATT; participants described how the impact of certain acute events (e.g., the onset of side effects or fatigue, episodes of stigmatisation, loss of income) were amplified by their timing or through their interaction with other elements of the individual’s life. We suggest that the dynamic and fluctuating nature of these factors necessitates comprehensive and regular review of needs and potential problems, conducted before and during ATT; this, coupled with supportive measures that consider (and seek to mitigate) the influence of social and structural factors, may help improve adherence.http://www.sciencedirect.com/science/article/pii/S240557942100022XComplianceMedicationOutcomesDeterminantsPerson-centred careElimination |