Below is a list of peer-reviewed journal articles, books and book chapters by DIPEx International members based on our research over the last five years. This list is followed by further reading and key publications on the DIPEx methodology; evaluation of our websites; further use of our research in teaching, service and improvement; and methodological approaches that have inspired our work.
While most articles are in English, you can also find papers in Czech, Dutch, German, Japanese, Korean and Norwegian. Articles that are open access (i.e., freely available) are marked with an asterisk. If you would like a copy of an article that is not open access, please contact us.
Our Research
* open access (not paywalled)
| Year/Publication | Language |
|---|---|
| 2020 | |
| Duff, C., Kokanović, R., Flore, J., Thomas, SDM., Callard, F. & Blackman, L. (2020). Perspectives on person-centred care for borderline personality disorder: A critical research agenda. Health Sociology Review, 29(1), 1-15. https://doi.org/10.1080/14461242.2020.1715815 | English |
| Davies, L., LeClair, K. L., Bagley, P., Blunt, H., Hinton, L., Ryan, S., & Ziebland, S. (2020). Face-to-Face Compared With Online Collected Accounts of Health and Illness Experiences: A Scoping Review. Qualitative Health Research, 30(13), 2092–2102. https://doi.org/10.1177/1049732320935835 | English |
| Flore, J., Kokanović, R., Duff, C. & Callard, F. (2020). The antidepressant in women’s lifeworlds: Feminist materialist encounters. BioSocieties. https://doi.org/10.1057/s41292-020-00189-2 | English |
| Ghio, D., Muller, I., Greenwell, K., Roberts, A., McNiven, A., Langan, S.M. & Santer, M., 2020. ‘It's like the bad guy in a movie who just doesn't die’: A qualitative exploration of young people's adaptation to eczema and implications for self‐care. British Journal of Dermatology, 182(1), 112-118. https://doi.org/10.1111/bjd.18046 | English |
| Holmberg, C. & Breuning, M. (in print). Personal Experiences of Illness. In S. Scrimshaw, S. Lane, R, Rubenstein & J. Fisher (Eds.), The SAGE Handbook of Social Studies in Health and Medicine (2nd ed.). Sage. | English |
| Johnston-Ataata, K., Flore, J., Kokanović, R., Hickey, M., Teede, H., Boyle, J. & Vincent, A. (2020). ‘My relationships have changed because I’ve changed’: Biographical disruption, personal relationships, and the formation of an early menopausal subjectivity. Sociology of Health and Illness, 42(7), 1516-1531. https://doi.org/10.1111/1467-9566.13143 | English |
| Locock, L., Graham, C., King, J., Parkin, S., Chisholm, A., Montgomery, C., Gibbons, E., Ainley, E., Bostock, J., Gager, M., Churchill, N,, Dopson, S., Greenhalgh, T., Martin, A., Powell, J., Sizmur, S. & Ziebland, S. (2020) Understanding how front-line staff use patient experience data for service improvement: An exploratory case study evaluation. Health Services and Delivery Research, 8(13). https://doi.org/10.3310/hsdr08130 | English |
| Locock, L., Montgomery, C., Parkin, S., Chisholm, A., Bostock, J., Dopson, S., Gager, M., Gibbons, E., Graham, C., King, J., Martin, A., Powell, J., & Ziebland, S. (2020). How do frontline staff use patient experience data for service improvement? Findings from an ethnographic case study evaluation. Journal of Health Services Research & Policy, 25(3), 151–161. https://doi.org/10.1177/1355819619888675 | English |
| O’Brien, N., Law, S., Proulx-Boucher, K., Menard, B., Skerritt, L., Boucoiran, I., Cox, J., Andersson, N. & de Pokomandy, A. (2020). Co-designing care improvements for women living with HIV: A patient-oriented deliberative dialogue workshop in Montréal, Québec. CMAJ Open, 8(2) E264-E272. https://doi.org/10.9778/cmajo.20190158 * | English |
| Ormel, I. & Law, S. (2020). Piloting co-design in a humanitarian setting: New insights and lessons learned – the importance of cultural and contextual adaptation. In Boland, L., Reszel, J., McCutcheon, C., Kothari, A. & Graham, ID. (Eds.), How We Work Together: The Integrated Knowledge Translation Research Network Casebook. Volume 3 (pp.19-21). Integrated Knowledge Translation Research Network. | English |
| Ormel, I., Salsberg, J., Hunt, M., Doucet, A., Hinton, L., Macaulay, A. & Law, S, (2020). Key issues for participatory research in the design and implementation of humanitarian assistance: a scoping review. Global Health Action, 13(1). https://doi.org/10.1080/16549716.2020.1826730 | English |
| Pandhi, N., Gaines, M., Deci, D., Schlesinger, M., Culp, C., Karp, Z., Legler, C., & Grob, R. (2020) Broadening Medical Students' Exposure to the Range of Illness Experiences: A Pilot Curriculum Focused on Depression Education. Academic Medicine, 95(1), 72-76. https://doi.org/10.1097/ACM.0000000000002893 | English |
| Pope, C, & Mays, N. (Eds.) (2020). Qualitative research in health care (4th ed.). Wiley. | English (earlier editions available in Japanese and Portuguese) |
| Smith, S., Alvand, A., Locock, L., Ryan, S., Smith, J., Bayliss, L., Wilson, H., & Price, A. (2020). Partial or total knee replacement? Identifying patients’ information needs on knee replacement surgery: a qualitative study to inform a decision aid. Quality of Life Research, 29, 999–1011. https://doi.org/10.1007/s11136-019-02381-9 * | English |
| Torishima, M., Urao, M., Nakayama, T. & Kosugi, S. (2020). Negative recollections regarding doctor–patient interactions among men receiving a prostate cancer diagnosis: A qualitative study of patient experiences in Japan. BMJ Open, 10, e032251. https://doi.org/10.1136/ bmjopen-2019-032251 * | English |
| Trtílková, J., Klůzová Kráčmarová, L., Horák, O., & Tavel, P. (2020). Zkušenosti rodičů s poskytovanou zdravotní péčí o děti s epilepsií. [Experiences of parents with health care provided to children with epilepsy.] Neurologie pro praxi [Neurology for Practice] | Czech |
| Turk, A., Fleming, J., Powell, J., & Atherton, H. (2020). Exploring UK doctors’ attitudes towards online patient feedback: Thematic analysis of survey data. DIGITAL HEALTH. https://doi.org/10.1177/2055207620908148 * | English |
| 2019 | |
| Alam, R., Montanez, J., Law, S., Lee, L., Pecorelli, N., Yusuke, W., Luciana, CD., Falconi, M., Satoshi, H., Mayo, N., Feldman, L. & Fiore, J. (2019). Development of a conceptual framework of recovery after abdominal surgery. Surgical Endoscopy, 34, 2665–2674. https://doi.org/10.1007/s00464-019-07044-x | English |
| Andreassen, HK. (2019). Informasjonssystemer er fortellinger om pasienten. I: Digitalisering i sykepleietjenesten – en arbeidshverdag i endring. Cappelen Damm Akademisk, ISBN 978-82-02-63264-9 | Norwegian |
| Breuning, M., Schäfer-Fauth, L., Lucius-Hoene, G. & Holmberg, C. (2019). Connecting one’s own illness story to the illness experiences of others on a website - An evaluation study using the think aloud method. Patient Education and Counseling, 103(1), 199-207. https://doi.org/10.1016/j.pec.2019.08.014 | English |
| Brophy, L., Kokanović, R., Flore, J., McSherry, B. & Herrman, H. (2019). Community Treatment Orders and Supported Decision-Making. Frontiers in Psychiatry. https://doi.org/10.3389/fpsyt.2019.00414 * | English |
| Eassey, D., Reddel, H., Ryan, K. & Smith, L. (2019). The impact of severe asthma on patients’ autonomy: A qualitative study. Health Expectations, 22(3), 528– 536. https://doi.org/10.1111/hex.12879 | English |
| Eassey, D., Reddel, H., Ryan, K. & Smith, L. (2019). Barriers to belonging: The need for relatedness amongst people living with severe asthma. Journal of Asthma, 58(1), 1-9. https://doi.org/10.1080/02770903.2019.1656230 | English |
| Eassey, D., Reddel, H., Ryan, K. & Smith, L. (2019). Living with severe asthma: the role of perceived competence and goal achievement. Chronic Illness. https://doi.org/10.1177/1742395319884104 * | English |
| Farre, A., Ryan, S., McNiven, A. & McDonagh, J. (2019). The impact of arthritis on the educational and early work experiences of young people: A qualitative secondary analysis. International Journal of Adolescent Medicine and Health. http://dx.doi.org.ezproxy.lib.rmit.edu.au/10.1515/ijamh-2018-0240 * | English |
| Flore, J., Kokanović, R., Callard, F., Broom, A. & Duff, C. (2019). Unravelling subjectivity, embodied experience and (taking) psychotropic medication. Social Science & Medicine, 230, 66-73. https://doi.org/10.1016/j.socscimed.2019.04.004 | English |
| Johnston-Ataata, K. (2019). Reflecting on the past: The role of biographical, familial and social memory in new mothers’ interpretation of emotional experiences in early parenthood. In Pascoe Leahy, C. and Bueskens, P. (Eds.), Australian Mothering: Historical and Sociological Perspectives (pp. 297-316). Palgrave MacMillan. https://doi.org/10.1007/978-3-030-20267-5 | English |
| Kikuchi, K., Miki, A., Satoh, H., Iba, N., Sato-Sakuma, R., Beppu, H. & Sawada, Y. (2019). Utility of an adverse drug event database based on the narrative accounts of patients with breast cancer. Drug Discoveries & Therapeutics, 13(4), 183-188. https://doi.org/10.5582/ddt.2019.01037 | English |
| Locock, L., Kirkpatrick, S., Brading, L., Sturmey, G., Cornwall, J., Churchill, N. & Robert, G. (2019). Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement. Research Involvement & Engagement, 5(1), 1. https://doi.org/10.1186/s40900-018-0133-z | English |
| Mazanderani, F., Hughes, N., Hardy, C., Sillence, E. & Powell, J., (2019). Health information work and the enactment of care in couples and families affected by Multiple Sclerosis. Sociology of Health & Illness, 41(2), 395-410. https://doi.org/10.1111/1467-9566.12842 | English |
| Nagraj, S., Hinton, L., Praveen, D., Kennedy, S., Norton, R. & Hirst, J. (2019). Women's and healthcare providers' perceptions of long‐term complications associated with hypertension and diabetes in pregnancy: a qualitative study. BJOG, 126, Suppl 4, 34-42. https://doi.org/10.1111/1471-0528.15847 * | English |
| Nakada, H., Yoshida, S. & Muto, K. (2019). “Tell me what you suggest, and let’s do that, doctor”: Patient deliberation time during informal decision-making in clinical trials. PLoS One, 14(1), e0211338. https://doi.org/10.1371/journal. pone.0211338 * | English |
| Powell, J., Atherton, H., Williams, V., Mazanderani, F., Dudhwala, F., Woolgar, S., Boylan, A.M., Fleming, J., Kirkpatrick, S., Martin, A., van Velthoven, M., de Iongh, A., Findlay, D., Locock, L. & Ziebland, S. (2019). Using online patient feedback to improve NHS services: The INQUIRE multimethod study. Health Services and Delivery Research, 7(38). https://doi.org/10.3310/hsdr07380 * | English |
| Ridge, D., Broom, A., Kokanović, R., Ziebland, S. & Hill, N. (2019). Depression at work, authenticity in question: Experiencing, concealing and revealing. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 23(3), 344-36. https://doi.org/10.1177/1363459317739437 | English |
| Stone, M., Kokanović, R., Callard, F. & Broom, A. (2019). Estranged relations: Coercion and care in narratives of supported decision-making in mental healthcare. Medical Humanities, 46, 62-72. http://orcid.org/0000-0002-4308-3403 | English |
| Van Wijngaarden, E., Alma, M. & The, AM. (2019). ‘The eyes of others’ are what really matters: The experience of living with dementia from an insider perspective. PloS One, 14(4), e0214724. https://doi.org/10.1371/journal.pone.0214724 * | English |
| 2018 | |
| Adami, S., Breuning, M., Bengel, J., Bischoff, A. & Peng-Keller, S. (2018). Chronische Schmerzpatientinnen und -patienten sprechen über ihre Spiritualität [Chronic pain patients talking about their spirituality: a qualitative analysis of interviews from “krankheitserfahrungen.de]. Spiritual Care, 7, 243–253. https://doi.org/10.1515/spircare-2018-0013 | German |
| Blödt, S., Kaiser, M., Adam, Y., Adami, S., Schultze, M., Müller-Nordhorn, J. & Holmberg, C. (2018). Understanding the role of health information in patients' experiences: Secondary analysis of qualitative narrative interviews with people diagnosed with cancer in Germany. BMJ Open, 8, e019576. http://dx.doi.org/10.1136/bmjopen-2017-019576 * | English |
| Boylan, A., Locock, L. & Machin, L. (2018). From waste product to blood, brains and narratives: Developing a pluralist sociology of contributions to health research. Sociology of Health & Illness, 41(3): 585-600. https://doi.org/10.1111/1467-9566.12715 | English |
| Brenner, M., O'Shea, M., McHugh, R., Clancy, A., Larkin. P., Luzi, D., Pecoraro, F., Montanano Olasa, E., Lignou, S., Alma, M., Satherley, R., Tamburis, O., Warters, A., Wolfe, I., Hilliard, C., Berry, J., Alexander, D., Rigby, M. & Blair, M. (2018). Principles for provision of integrated complex care for children across the Acute Community Interface in Europe. The Lancet Child & Adolescent Health, 2(11), 832-838. https://doi.org/10.1016/S2352-4642(18)30270-0 | English |
| Darbyshire, J. & Hinton, L. (2018). Using patient narratives to design an intervention to reduce noise in the Intensive Care Unit. The Journal of Health Design, 3(2), 109-112. https://doi.org/10.21853/JHD.2018.51 * | English |
| Eassey, D., Reddel, H., Foster, J., Kirkpatrick, S., Locock, L., Ryan, K. & Smith, L. (2018). “...I’ve said I wish I was dead, you’d be better off without me”: A systematic review of people’s experiences of living with severe asthma. Journal of Asthma, 56(3), 311-322. https://doi.org/10.1080/02770903.2018.1452034 | English |
| Grob, R. and Schlesinger, M. (2018). When public and private narratives diverge: Media, policy advocacy, and the paradoxes of newborn screening policy. In G. Lucius-Hoene, C. Holmberg, & T. Meyer (Eds.), Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford University Press. https://doi.org/10.1093/med/9780198806660.003.0023. | English |
| Hinton, L., Locock, L., Long, A-M. & Knight, M. (2018). What can make things better for parents when babies need abdominal surgery in their first year of life? A qualitative interview study in the UK. BMJ Open, 8(6) p.e020921. https://doi.org/10.1136/bmjopen-2017-020921 * | English |
| Hinton, L., Locock, L. & Ziebland, S. (2018). Understanding and using health experiences to improve healthcare—examples from the United Kingdom. In G. Lucius-Hoene, C. Holmberg, & T. Meyer (Eds.), Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford University Press. https://doi.org/10.1093/med/9780198806660.003.0021 | |
| Johnston-Ataata, K., Kokanović, R. & Michaels, P. (2018). ‘One of the most vulnerable times in your life’: Expectations and emotional experiences of support in the early postnatal period. In R. Kokanović, P. Michaels & K. Johnston-Ataata (Eds.), Paths to Parenthood: Emotions on the Journey through Pregnancy, Childbirth, and Early Parenting (pp 187-214). Springer. https://doi.org/10.1007/978-981-13-0143-8 | English |
| Kirkpatrick, S., Locock, L., Farre, A., Ryan, S., Salisbury, H. & McDonagh, JE. (2018). Untimely illness: When diagnosis does not match age-related expectations. Health Expectations, 21(4), 730-740. https://doi.org/10.1111/hex.12669. | English |
| Klůzová Kráčmarová, L., Dutková, K. & Tavel, P. (2018). Everybody needs to believe in something: Spiritual beliefs of non-religious Czech adolescents. Psychology of Religion and Spirituality, 11(1), 65–73. https://doi.org/10.1037/rel0000217 | English |
| Klůzová Kráčmarová, L. & Dutková, K. (2018). What happens after death? Beliefs in an afterlife among religious and non-religious children in the Czech Republic. In Potměšilová, P. ÖbrinkHobzová & M. Mládež a hodnoty 2018. Olomouc: UniverzitaPalackého v Olomouci, 2018, s. 193-208. ISBN 978-80-244-5408-5. | Czech |
| Knight, F., Kokanović, R., Ridge, D., Brophy, L., Hill, N., Johnston-Ataata, K, & Herrman, H. (2018). Supported Decision-Making: The Expectations Held by People With Experience of Mental Illness. Qualitative Health Research, 28(6), 1002-1015. https://doi.org/10.1177/1049732318762371 | English |
| Kokanović, R., Brophy, L., McSherry, B., Flore, J., Moeller-Saxone, K. & Herrman, H. (2018). Supported decision-making from the perspectives of mental health service users, family members supporting them and mental health practitioners. The Australian and New Zealand Journal of Psychiatry, 52(9), 826-833. https://doi.org/10.1177/0004867418784177 * | English |
| Kokanović, R., Michaels, P. & Johnston-Ataata, K. (Eds.) (2018). Paths to Parenthood: Emotions on the Journey through Pregnancy, Childbirth, and Early Parenting. Springer. https://doi.org/10.1007/978-981-13-0143-8 | English |
| Lamerichs, J. & Alma, M. (2018). Drawing on narrative accounts of dementia in education care. In G. Lucius-Hoene, C. Holmberg & T. Meyer (Eds.), Illness narratives in practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford University Press. https://doi.org/10.1093/med/9780198806660.003.0016 | English |
| Lavie-Ajayi, M. & Shvartzman, P. (2018). Restored self: A Phenomenological study of pain relief by cannabis. Pain Medicine, 20(11), 2086-2093. https://doi.org/10.1093/pm/pny176 | English |
| Law, S., Ormel, I., Loutfi, D. & Lavis, J. (2018). Illness narratives as evidence for healthcare policy. In G. Lucius-Hoene, C. Holmberg & T. Meyer (Eds.), Illness narratives in practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford University Press. https://doi.org/10.1093/med/9780198806660.003.0022 * | English |
| Lucius-Hoene, G., Holmberg, C. & Meyer, T. (Eds.) (2018). Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford University Press. https://doi.org/10.1093/med/9780198806660.001.0001 | English |
| Lucius-Hoene, G., Breuning, M. & Helfferich. C. (2018). Illness narratives in practice: Which questions do we have to face when collecting and using them? In G. Lucius-Hoene, C. Holmberg & T. Meyer (Eds.), Illness narratives in practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford University Press. https://doi.org/10.1093/med/9780198806660.003.0002 | |
| McNiven, A. (2018). ‘Disease, illness, affliction? Don’t know’: Ambivalence and ambiguity in the narratives of young people about having acne. Health, 23(3), 273-288. https://doi.org/10.1177%2F1363459318762035 | English |
| Michaels, P. & Kokanović, R. (2018). The complex and contradictory emotional paths to parenthood. In Kokanović, R., Michaels, P. & Johnston-Ataata, K. (Eds.), Paths to Parenthood: Emotions on the Journey through Pregnancy, Childbirth, and Early Parenting (pp.1-17). Springer. https://doi.org/10.1007/978-981-13-0143-8 | English |
| Nijnuis, M. & Alma, M. (2018). Parents' experiences with the diagnostic period of a rare disease in their child: An overview of the literature. Huisarts & Wetenschap, 61(9): 14. | Dutch |
| Palant, A. & Himmel, W. (2018). How to use illness narratives in medical education: First teaching experiences with the German DIPEx website project. In G. Lucius-Hoene, C. Holmberg & T. Meyer (Eds.), Illness narratives in practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford University Press. https://doi.org/10.1093/med/9780198806660.003.0013 | English |
| Pickles, K., Eassey, D., Reddel, H., Locock, L., Kirkpatrick, S. & Smith, L. (2018). “This illness diminishes me. What it does is like theft”: A qualitative meta-synthesis of people's experiences of living with asthma. Health Expectations, 21(1), 23-40. https://doi.org/10.1111/hex.12605. | English |
| Ryan, S. (2018). Honouring a life and narrative work: John’s story. Arts and Humanities in Higher Education, 17(1), 58-68. https://doi.org/10.1177/1474022217729178 | English |
| Searle, A., Neville, P., Ryan, S. & Waylen, A. (2018). The Role of the Clinical Nurse Specialist From the Perspective of Parents of Children Born With Cleft Lip and/or Palate in the United Kingdom: A Qualitative Study. Clinical Nurse Specialist, 32(3), 121-8. https://doi.org/10.1097/NUR.0000000000000371 | English |
| Stepney, M., Kirkpatrick, S., Locock, L., Prinjha, S. & Ryan, S. (2018). A licence to drive? Neurological illness, loss and disruption. Sociology of Health and Illness, 40(7), 1186-1199. https://doi.org/10.1111/1467-9566.12754 | English |
| Stevens, RJ., Evans, J., Oke, J., Smart, B., Richard Hobbs, F., Holloway, E., Horwood, J., Judd, M., Locock, L., McLellan, J. & Perera, R. (2018). Kidney Age, not Kidney Disease. CMAJ, 190(13), E389-E393. https://doi.org/10.1503/cmaj.170674 * | English |
| Stone, M. & Kokanović, R. (2018). Narrating and disrupting postnatal depression. In Kokanović, R., Michaels, P. & Johnston-Ataata, K. (Eds.), Paths to Parenthood: Emotions on the Journey through Pregnancy, Childbirth, and Early Parenting (pp. 165-186). Springer. https://doi.org/10.1007/978-981-13-0143-8 | English |
| Stone, M., Kokanović, R. & Broom, A. (2018). Care(less) encounters: Early maternal distress and the haunted clinic. Subjectivity, 11, 108–127. https://doi.org/ 10.1057/s41286-018-0047-0. | English |
| 2017 | |
| Breuning, M., Lucius-Hoene, G., Burbaum, C., Himmel, W. & Bengel, J. (2017). Subjektive Krankheitserfahrungen und Patientenorientierung. Das Website-Projekt DIPEx Germany. [Patient experiences and patient centeredness - The website project DIPEx Germany]. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz. 60(4), 453–461. https://doi.org/10.1007/s00103-017-2524-y | German |
| Chung, SJ. (2017). Idiom use of breast cancer patients in the disease experience. Dokil Munhak, 44, 207-226. | Korean |
| Crocker, JC., Boylan, AM., Bostock, J. & Locock, L. (2017). Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: A UK-based qualitative interview study. Health Expectations, 20(3): 519-528. https://doi.org/10.1111/hex.12479 | |
| Dilkes-Frayne, E., Fraser, S., Pienaar, K. & Kokanović, R. (2017). Iterating 'addiction': Residential relocation and the spatio-temporal production of alcohol and other drug consumption patterns. International Journal of Drug Policy, 44, 164-173. https://doi.org/10.1016/j.drugpo.2017.05.024 | English |
| Fraser S, Pienaar K, Dilkes-Frayne E, Moore D, Kokanović R, Treloar C & Dunlop A. (2017). Addiction stigma and the biopolitics of liberal modernity: A qualitative analysis. International Journal of Drug Policy, 44, 192=201. https://doi.org/192-201. 10.1016/j.drugpo.2017.02.005 | English |
| Giesler, JM., Keller, B., Repke, T., Leonhart, R., Weis, J., Muckelbauer, R., Rieckmann, N., Müller-Nordhorn, J., Lucius-Hoene, G. & Holmberg, C. (2017). Effect of a Website That Presents Patients’ Experiences on Self-Efficacy and Patient Competence of Colorectal Cancer Patients: Web-Based Randomized Controlled Trial. Journal of Medical Internet Research, 19(10), e334. https://doi.org/10.2196/jmir.7639 | English |
| Hinton, L., Tucker, K., Greenfield, S., Hodgkinson, J., Mackillop, L., McCourt, C., Carver, T., Crawford, C., Glogowska, M., Locock, L., Selwood, M., Taylor, K. & McManus, R. (2017). Blood pressure self-monitoring in pregnancy (BuMP) feasibility study: A qualitative analysis of women’s experiences of self-monitoring. BMC Pregnancy and Childbirth, 17, 427. https://doi.org/10.1186/s12884-017-1592-1 * | English |
| Knight, F., Ridge, D., McShane, R., Ryan, S., & Griffith, L. (2017). Care, Control, and the Electroconvulsive Therapy Ritual: Making Sense of Polarized Patient Narratives. Qualitative Health Research, 27(11), 1675-1685. https://doi.org/10.1177/1049732317701403 | English |
| Malouf, R., McLeish, J., Ryan, S., Gray, R. & Redshaw, M. (2017). We both just wanted to be normal parents’: A qualitative study of the experience of maternity care for women with learning disability. BMJ Open, 7(3). https://doi.org/10.1136/bmjopen-2016-015526. * | English |
| Moore, D., Pienaar, K., Dilkes-Frayne, E. & Fraser, S. (2017). Challenging the addiction/health binary with assemblage thinking: An analysis of consumer accounts. International Journal of Drug Policy, 44, 155-163. https://doi.org/10.1016/j.drugpo.2017.01.013 | English |
| Ormel, I., Law, S., Abbott, C., Yaffe, M., Saint-Cyr, M., Kuluski, K., Josephson, D. & Macaulay, A. (2017). When one is sick and two need help: Caregivers’ perspectives on the negative consequences of caring. Patient Experience Journal, 4(1), 66-78. https://doi.org/10.35680/2372-0247.1179 * | English |
| Pienaar, K. & Dilkes-Frayne, E. (2017). Telling different stories, making new realities: The ontological politics of ‘addiction’ biographies. International Journal of Drug Policy, 44, 145-154. https://doi.org/10.1016/j.drugpo.2017.05.011 | English |
| Pienaar, K., Moore, D., Fraser, S., Kokanović, R., Treloar, C. & Dilkes-Frayne, E. (2017). Diffracting addicting binaries: An analysis of personal accounts of alcohol and other drug 'addiction'. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 21(5), 519-537. 10.1177/1363459316674062 | English |
| Ryan, S., Hislop, J. & Ziebland, S. (2017). Do we all agree what “good health care” looks like? Views from those who are “seldom heard” in health research, policy and service improvement. Health Expectations, 20(5), 878-885. https://doi.org/10.1111/hex.12528. | English |
| Tonsaker, T., Law, S., Ormel, I., Nease, C. & Bartlett, G. (2017). Engaging caregivers: Exploring perspectives on web-based health information. Family Practice, 34(4), 479-484. https://doi.org/10.1093/fampra/cmw084 * | English |
| Treloar, C., Pienaar, K., Dilkes-Frayne, E. & Fraser, S. (2017). Lives of Substance: a mixed-method evaluation of a public information website on addiction experiences. Drugs: Education, Prevention and Policy, 26(2), 140-147. https://doi.org/10.1080/09687637.2017.1397602 | English |
| Yi, M., Jang, HY., Woo, SS & Kim, HS. (2017). Phenomenological study on experience of stomach cancer survivors. Journal of Korean Association for Qualitative Research, 2, 23-33. | Korean |
| 中田はる佳・吉田幸恵・有田悦子・武藤香織(2017). 患者の経験からみる臨床試験への参加判断とインフォームドコンセントの意義 , 臨床薬理 48: 31-39. (Haruka, N., Sachie, Y., Etsuko, A., & Kaori, M. (2017). The timing of decision-making and informed consent: Patients' perspective and experiences of clinical trials in Japan. Japanese Journal of Clinical Pharmacology and Therapeutics, 48, 31-39.) | Japanese |
| 吉田幸恵・中田はる佳・武藤香織(2017). 臨床試験に関与した、がん患者の語り－「治療」と「研究」を区別することの困難さに関する考察－, 生命倫理 27: 122-131. (Sachie, Y., Haruka, N., & Kaori, M. (2017). Narratives of cancer patients involved in clinical trials: The difficulty of distinguishing “therapy” from “research.” Journal of the Japan Association for Bioethics, 27, 122-131.) | Japanese |
| 2016 | |
| Ashdown, H., Räisänen, U., Wang, K., Ziebland, S. & Harnden, A. (2016). Prescribing antibiotics to ‘at-risk’ children with influenza-like illness in primary care: qualitative study. BMJ Open, 6, e011497. https://doi.org/10.1136/bmjopen-2016-011497 * | English |
| Breuning, M., Hettmer, S., Strahm, B., Bengel, J. & Niemeyer, C. (2016). Krebskranke Kinder und ihre Familien: Verständnis für das Erleben. [Children with cancer and their families: Get a deeper insight in their experiences]. Deutsches Ärzteblatt, 113, A 2362-3. | German |
| Buchmann, M., Himmel, W., Lucius-Hoene, G., & Wermeling, M. (2016). Experiences of food abstinence in patients with type 2 diabetes: A qualitative study. BMJ Open, 6, e008907. https://doi.org/10.1136/bmjopen-2015-008907 * | English |
| Darbyshire, J., Grieg, P., Vollam, S., Young, D. & Hinton, L (2016). “I can remember sort of vivid people…but to me they were plasticine.” Delusions on the intensive care unit: what do patients think is going on? PLOS One, 11(7), e0160296. https://doi.org/10.1371/journal.pone.0153775 * | English |
| Engler, J., Adami, S., Adam, Y., Keller, B., Repke, T., Fügemann, H., Lucius-Hoene, G., Müller-Nordhorn, J. & Holmberg, C. (2016). Using others' experiences. Cancer patients' expectations and navigation of a website providing narratives on prostate, breast and colorectal cancer. Patient Education and Counseling, 99(8), 1325–1332. https://doi.org/10.1016/j.pec.2016.03.015 | English |
| Ferrey, AE., Hughes, ND., Simkin, S., Locock, L., Stewart, A., Kapur, N., Gunnell, D. & Hawton, K. (2016). Changes in parenting strategies after a young person’s self-harm: A qualitative study. Child and Adolescent Psychiatry and Mental Health, 10(20). https://doi.org/10.1186/s13034-016-0110-y * | English |
| Ferrey, AE., Hughes, ND., Simkin, S., Locock, L., Stewart, A., Kapur, N., Gunnell, D. & Hawton, K. (2016). The impact of self-harm by young people on parents and families: A qualitative study. BMJ Open, 6, e009631. https://doi.org/10.1136/bmjopen-2015-009631 * | English |
| Kidd, J. & Ziebland, S. (2016). Narratives of experience of mental health and illness on healthtalk.org. BJPsych Bulletin, 40(5), 273-276. https://doi.org/10.1192/pb.bp.115.052217 * | English |
| Klůzová Kráčmarová, L. & Tavel, P. (2016). Rostoucí význam internetu jako prostředku k vyhledávání informací souvisejících se zdravím [Increasing Role of the Internet as a Source of Information Related to Health]. E-psychologie, 10(1), 63-76. | Czech |
| Klůzová Kráčmarová, L. (2016). Hovory o zdraví aneb Naslouchejme pacientům [Healthtalk - Listen to the patients]. Published in five journals: 1) Praktické Lékárenství, 12(5): 159; 2) Dermatologie pro praxi, 11(2); 3) Medicína pro praxi, 14(2); 4) Psychiatrie pro praxi, 17(3): 83; 5) Urologie pro praxi, 17(5). | Czech |
| Knight, M., Acosta, C., Brocklehurst, P., Cheshire, A., Fitzpatrick, K., Hinton, L., Jokinen, M., Kemp, B., Kurinczuk, JJ., Lewis, G., Lindquist, A., Locock, L., Nair, M., Patel, N., Quigley, M., Ridge, D., Sellars, S. & Shah, A. (2016) Beyond maternal death: Improving the quality of maternal care through national studies of 'near-miss' maternal morbidity. Programme Grants for Applied Research, 4(9). https://doi.org/10.3310/pgfar04090 * | English |
| Lee, M., Joung, W., & Hwang, EM. (2016). [Recovery process from depression of middle-aged low-income women in Korea through text analysis on the data of depression experience.] Textlinguistics, 40, 199-223. https://www.kci.go.kr/kciportal/ci/sereArticleSearch/ciSereArtiView.kci?sereArticleSearchBean.artiId=ART002121025 | Korean |
| Locock, L., Boylan, AM., Snow, R. & Staniszewska, S. (2016). The power of symbolic capital in patient and public involvement in health research. Health Expectations, 20(5), 836-844. https://doi.org/10.1111/hex.12519 | English |
| Locock, N., Nettleton, S., Kirkpatrick, S., Ryan, S., Ziebland, S., & Locock, L. (2016). 'I knew before I was told': Breaches, cues and clues in the diagnostic assemblage. Social Science & Medicine, 154, 85-92. https://doi.org/10.1016/j.socscimed.2016.02.037 | English |
| Luchtenberg, M., Maeckelberghe, E., Locock, L., Powell, L. & Verhagen, AA. (2016). A Response to the Open Peer Commentaries on "Young People's Experiences of Participation in Clinical Trials: Reasons for Taking Part". The American Journal of Bioethics, 16(2), W10-2. https://doi.org/10.1080/15265161.2015.1125968 | English |
| Park, EW. (2016). [Family relationships within diabetic patients' experiences for successful diabetes management.] Family and Family Therapy, 24(3): 297-314. | Korean |
| Prinjha, S., Chapple, A., Feneley, R. & Mangnall, J. (2016). Exploring the information needs of people living with a long-term indwelling urinary catheter: A qualitative study. Journal of Advanced Nursing, 72(6), 1335-1346. https://doi.org/10.1111/jan.12923. | English |
| Richardson, J., Liddle, J., Mallen, C., Roddy, E., Hider, S., Prinjha, S. & Ziebland, S. (2016). A joint effort over a period of time: Factors affecting use of urate-lowering therapy for long-term treatment of gout. BMC Musculoskeletal Disorders, 17, 249. https://doi.org/10.1186/s12891-016-1117-5 * | English |
| Searle, A., Ryan, S., & Waylen, A. (2016). Health professional communication in the diagnosis and care of infants born with cleft lip and palate in the U.K. Journal of Neonatal Nursing, 22(5), 236-243. https://doi.org/10.1016/j.jnn.2016.04.005 | English |
| Stewart, A., Hughes, ND., Simkin, S., Locock, L., Ferrey, AE., Kapur, N., Gunnell, D. & Hawton, K. (2016). Navigating an unfamiliar world: How parents of young people who self-harm experience support and treatment. Child and Adolescent Mental Health, 23(2), 78-84. https://doi.org/10.1111/camh.12205 | English |
| Stone, M. & Kokanović, R. (2016). “Halfway towards recovery”: Rehabilitating the relational self in narratives of postnatal depression. Social Science & Medicine, 163, 98-106. https://doi.org/10.1016/j.socscimed.2016.06.040 | English |
| Ziebland, S., Powell, J., Jenkinson, C., Perera, R., Martin, A., Locock, L., Kelly, L., Newhouse, N. & Farmer, A. (2016). Examining the role of patients experiences as a resource for choice and decision-making in health care: A creative, interdisciplinary mixed-method study in digital health. Programme Grants for Applied Research, 4(17). https://doi.org/10.3310/pgfar04170 * | English |
| 中田はる佳(2016)、 被験者・家族の「思い」を知る, 薬理と治療 44(8) 1131-1134. (Haruka, N. (2016). Understading the emotions of subjects of clinical trials and their families. Japanese Pharmacology and Therapeutics, 44(8), 225-236.) | Japanese |
Further Reading and Key Publications
Our Methodology
| Breuning, M., Lucius-Hoene, G., Burbaum, C., Himmel, W. & Bengel, J. (2017). Subjektive Krankheitserfahrungen und Patientenorientierung. Das Website-Projekt DIPEx Germany. [Patient experiences and patient centeredness - The website project DIPEx Germany]. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz. 60(4), 453–461. https://doi.org/10.1007/s00103-017-2524-y | English |
| Davies, L., LeClair, K. L., Bagley, P., Blunt, H., Hinton, L., Ryan, S., & Ziebland, S. (2020). Face-to-Face Compared With Online Collected Accounts of Health and Illness Experiences: A Scoping Review. Qualitative Health Research, 30(13), 2092–2102. https://doi.org/10.1177/1049732320935835 | English |
| Herxheimer, A., & Ziebland, S. (2004). The DIPEx project: collecting personal experiences of illness and health care. In B. Hurwitz, T. Greenhalgh & V. Skultans (Eds.) Narrative research in health and illness (pp. 115-131). Wiley Online Library. https://doi.org/10.1002/9780470755167.ch7 | English |
| Herxheimer, A. & Ziebland, S. (2003). DIPEx: Fresh insights for medical practice. Editorial. Journal of the Royal Society of Medicine, 96(5), 209-210. | English |
| Herxheimer, A., McPherson, A., Miller, R., Shepperd, S., Yaphe, J., & Ziebland, S. (2000). Database of patients’ experiences (DIPEx): a multi-media approach to sharing experiences and information. The Lancet, 355(9214), 1540-1543. https://doi.org/10.1016/S0140-6736(00)02174-7 | English |
| McPherson, A. & Herxheimer, A. (2002). Database of Individual Patients’ Experiences – an update. The British Journal of General Practice, 52(484), 954. | English |
| McPherson, A. & Herxheimer, A (2001). DIPEx – A Database of Individual Patients’ Experiences. The British Journal of General Practice, 51(470), 770. | English |
| Ziebland, S. (2000). DIPEx: a new resource linking narratives with evidence-based information. Medical Sociology News, 26(3), 29-31. | English |
| Pope, C., Ziebland, S. & Mays, N. (2000). Qualitative research in health care: analysing qualitative data. BMJ, 320(7227), 114-6. https://www.bmj.com/content/320/7227/114 * | English |
| 佐藤（佐久間）りか(2007)、「健康と病いの語りデータベースDIPEx-Japan」の活動について, あいみっく28（3）：5-10 （Sato RS (2007) Introducing DIPEx-Japan: Database of Health and Illness Narratives. IMIC. 28(3): 5-10) | Japanese |
| Wiegersma, PA. (2013). Digital talking about health. A website for and by patients. Kwaliteit in Zorg, 2, 12-14. | Dutch |
| Ziebland, S., Grob, R., & Schlesinger, M. (2021). Polyphonic perspectives on health and care: Reflections from two decades of the DIPEx project. Journal of Health Services Research & Policy, 26(2), 133–140. https://doi.org/10.1177/1355819620948909 | English |
| Ziebland, S., & McPherson, A. (2006). Making sense of qualitative data analysis: An introduction with illustrations from DIPEx (personal experiences of health and illness). Medical Education, 40(5), 405-414. https://doi.org/10.1111/j.1365-2929.2006.02467.x | English |
Evaluation of our websites
| Breuning, M., Schäfer-Fauth, L., Lucius-Hoene, G. & Holmberg, C. (2019). Connecting one’s own illness story to the illness experiences of others on a website - An evaluation study using the think aloud method. Patient Education and Counseling, 103(1), 199-207. https://doi.org/10.1016/j.pec.2019.08.014 | English |
| Giesler, JM., Keller, B., Repke, T., Leonhart, R., Weis, J., Muckelbauer, R., Rieckmann, N., Müller-Nordhorn, J., Lucius-Hoene, G. & Holmberg, C. (2017). Effect of a Website That Presents Patients’ Experiences on Self-Efficacy and Patient Competence of Colorectal Cancer Patients: Web-Based Randomized Controlled Trial. Journal of Medical Internet Research,19(10), e334. https://doi.org/10.2196/jmir.7639 | English |
| Lucius-Hoene, G., Growth, S., Becker, A-K., Dvorak, F., Breuning, M. & Himmel, W. (2013). Wie erleben Patienten die Veröffentlichung ihrer Krankheitserfahrungen im Internet? [What it Means for Patients to Have their Illness Experiences Published in the Internet]. Die Rehabilitation, 52, 196–201. https://doi.org/10.1055/s-0033-1343492 | German |
| Newman, M., Ziebland, S. & Barker, K. (2009). Patients’ views of a multimedia resource featuring experiences of rheumatoid arthritis: Pilot evaluation of healthtalkonline.org. Health Informatics Journal, 15, 147-159. https://doi.org/10.1177/1460458209102974 | English |
| Schierholz H M (2016) Illness narratives in the internet as an information source and support: Evaluation of the website www.krankheitserfahrungen.de. Dissertation. Georg-August-Universität zu Göttingen, Göttingen. | German |
| Sillence, E. Briggs, P. & Herxheimer, A. (2004). Personal experiences matter: what patients think about hypertension information online. [email protected] Information on the Internet, 42, 3-5. | English |
| Treloar, C., Pienaar, K., Dilkes-Frayne, E. & Fraser, S. (2017). Lives of Substance: a mixed-method evaluation of a public information website on addiction experiences. Drugs: Education, Prevention and Policy, 26(2), 140-147. https://doi.org/10.1080/09687637.2017.1397602 | English |
Further use of our research in teaching, service improvement and more
| Cheshire, J. & Ziebland, S. (2005). Narrative as a resource in accounts of the experience of illness. In: J Coates & J Thornborrow (Eds.) The Sociolinguistics of Narrative. (pp. 17-40) Amsterdam: John Benjamins. | English |
| Coulter, A., Locock, L., Ziebland, Z. & Calabrese, J. (2014). Collecting data on patient experience is not enough: They must be used to improve care. BMJ, 348, g2225. https://doi-org.ezproxy.lib.rmit.edu.au/10.1136/bmj.g222 | English |
| Darbyshire, J. & Hinton, L. (2018). Using patient narratives to design an intervention to reduce noise in the Intensive Care Unit. The Journal of Health Design, 3(2), 109-112. https://doi.org/10.21853/JHD.2018.51 | English |
| Hinton, L., Locock, L. & Ziebland, S. (2018). Understanding and using health experiences to improve healthcare—examples from the United Kingdom. In G. Lucius-Hoene, C. Holmberg, & T. Meyer (Eds.), Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford: Oxford University Press. https://doi.org/10.1093/med/9780198806660.003.0021 | English |
| Lamerichs, J. & Alma, M. (2018). Drawing on narrative accounts of dementia in education care. In G. Lucius-Hoene, C. Holmberg, & T. Meyer (Eds.), Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford: Oxford University Press. https://doi.org/10.1093/med/9780198806660.003.0016 | English |
| Law, S., Ormel, I., Loutfi, D. & Lavis, J. (2018). Experience as evidence for healthcare policy. In G. Lucius-Hoene, C. Holmberg, & T. Meyer (Eds.), Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford: Oxford University Press. * https://doi.org/10.1093/med/9780198806660.003.0022 | English |
| Locock, L., Robert, G., Boaz, A., Vougioukalou, S., Shuldham, C., Fielden, J., Ziebland, S., Gager, M., Tollyfield, R. & Pearcey, J. (2014). Testing accelerated experience-based co-design: A qualitative study of using a national archive of patient experience narrative interviews to promote rapid patient-centred service improvement. Health Services and Delivery Research, 2(4), 1–122. https://doi.org/10.3310/hsdr02040 | English |
| Locock, L., Robert, G., Boaz, A., Vougioukalou, S., Shuldham, C., Fielden, J., Ziebland, S., Gager, M., Tollyfield, R. & Pearcey, J. (2014). Using a national archive of patient experience narratives to promote local patient-centred quality improvement: an ethnographic process evaluation of ‘accelerated’ experience-based co-design. Journal of Health Services Research & Policy, 19(4), 200-207. https://doi.org/10.1177/1355819614531565 | English |
| Lucius-Hoene, G., Holmberg, C. & Meyer, T. (Eds.) (2018). Illness Narratives in Practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford: Oxford University Press. https://doi.org/10.1093/med/9780198806660.001.0001 | English |
| Palant, A. & Himmel, W. (2018). How to use illness narratives in medical education: First teaching experiences with the German DIPEx website project. In G. Lucius-Hoene, C. Holmberg & T. Meyer (Eds.), Illness narratives in practice: Potentials and Challenges of Using Narratives in Health-related Contexts. Oxford: Oxford University Press. https://doi.org/10.1093/med/9780198806660.003.0013 | English |
| Pandhi, N., Gaines, M., Deci, D., Schlesinger, M., Culp, C., Karp, Z., Legler, C., & Grob, R. (2019) Broadening Medical Students' Exposure to the Range of Illness Experiences: A Pilot Curriculum Focused on Depression Education. Academic Medicine, 95(1), 72-76. https://doi.org/10.1097/ACM.0000000000002893 | English |
| 佐藤（佐久間）りか(2007)、患者の語りを分析する―DIPExの質的データに基づく学術論文に学ぶ, あいみっく28（1）：6-11 （Sato RS(2007) Analyzing Patient Narratives: Reviewing academic papers based on the analyses of DIPEx qualitative data. IMIC 28(1): 6-11) | Japanese |
| Soar, S., Ryan, S. & Salisbury, H. (2014). Using patients’ experiences in e-learning design. The Clinical Teacher, 11(2), 80–83. https://doi.org/10.1111/tct.12166 | English |
| Snow, R., Crocker, J., Talbot, K., Moore, J. & Salisbury, H. (2016) Does hearing the patient perspective improve consultation skills in examinations? An exploratory randomized controlled trial in medical undergraduate education. Medical Teacher, 38(12), 1229-1235. https://doi.org/10.1080/0142159X.2016.1210109 | English |
| Yaphe, J., Rigge, M., Herxheimer, A., McPherson, A., Miller, R., Shepperd, S. & Ziebland, S. (2000). The use of patients’ stories by self-help groups: A survey of voluntary organizations in the UK on the register of the College of Health. Health Expectations, 3(3), 176-81. https://doi.org/10.1046/j.1369-6513.2000.00092 | English |
| Ziebland, S., Lavie-Ajayi, M., & Lucius-Hoene, G. (2015). The role of the Internet for people with chronic pain: examples from the DIPEx International Project. British Journal of Pain, 9(1), 62-64. https://doi.org/10.1177/2049463714555438 | English |
| Ziebland, S. & Hunt, K. (2014). Using secondary analysis of qualitative data of patient experiences of health care to inform health services research and policy. Journal of Health Services Research & Policy, 19(3), 177–182. https://doi.org/10.1177/1355819614524187 | English |
| Ziebland, S., Locock, L., Fitzpatrick, R., Stokes, T., Robert, G., O'Flynn, N., Bennert, K., Ryan, S., Thomas, V. & Martin, A. (2014). Informing the development of NICE (National Institute for Health & Care Excellence) quality standards through secondary analysis of qualitative narrative interviews on patients experiences. Health Services and Delivery Research, 2(45). https://doi.org/10.3310/hsdr02450 | English |
| Ziebland, S., & Herxheimer, A. (2008). How patients’ experiences contribute to decision making: illustrations from DIPEx (personal experiences of health and illness). Journal of nursing management, 16(4), 433-439. | English |
Methodology literature that has inspired our research practice
| Coyne, IT. (1997). Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? Journal of Advanced Nursing, 26(3), 623-630. https://doi.org/10.1046/j.1365-2648.1997.t01-25-00999.x | English |
| Mishler EG. (1991) Research interviewing: context and narrative. Harvard University Press. | English |
| Pope C, Ziebland S & Mays N. (2000). Qualitative research in health care: Analysing qualitative data. BMJ, 320(7227), 114-116. https://doi.org/10.1136/bmj.320.7227.114 | English |