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Rebekah Maguire, Paula Mayock , Deirdre Daly, Cecily Begley, Mike Clarke

Considerations Pregnant Women Take Into Account When Deciding to Participate in Research – the MAMMI Study ( M aternal health A nd M aternal M orbidity in I reland). Rebekah Maguire, Paula Mayock , Deirdre Daly, Cecily Begley, Mike Clarke. Overview of Presentation.

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Rebekah Maguire, Paula Mayock , Deirdre Daly, Cecily Begley, Mike Clarke

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  1. Considerations Pregnant Women Take Into Account When Deciding to Participate in Research – the MAMMI Study(Maternal health And Maternal Morbidity in Ireland) Rebekah Maguire, Paula Mayock, Deirdre Daly, Cecily Begley, Mike Clarke

  2. Overview of Presentation • Background to MAMMI Study • Background to Present Study • Aims and Objectives • Methodology • Research Findings • Conclusions

  3. 1. Background to MAMMI Study • The MAMMI Study • Maternal health And Maternal Morbidity in Ireland • Deirdre Daly, Cecily Begley, Mike Clarke • Aim • Objectives • Sample • Methods

  4. 2. Background to Present Study • Considerations Pregnant Women Take into Account When Deciding to Participate in research – the MAMMI Study. • Preliminary systematic literature search was conducted to investigate themes for investigating women and their motivations to participate in research whilst pregnant.

  5. Findings from Literature • Main background literature found – • Motivations • Altruism • Contribution to medical knowledge • Personal Benefits

  6. Findings from Literature • Barriers • Personal Questions • Timing once baby arrives • The Therapeutic Misconception • Informed Consent

  7. 3. Study Aims Overall Objective: • To ascertain women’s motivations on participating in research whilst pregnant

  8. Objectives/Research Questions • What are women’s motivations to participate in research whilst pregnant? • Are there any potential barriers for women to participate in research whilst pregnant? • What are the attitudes and perspectives of women toward the issue of the research process and their understanding of it?

  9. 4. Methodology • Qualitative Telephone Interviewing • Interviews semi structured with an interview schedule • 10 - 20 minutes maximum

  10. Sample • Women who are participating in the MAMMI study who have agreed to participate in research related to this topic • Consent form • Purposive sample due to this consent • Sample of 10 women • Participant Profile

  11. 5. Research Findings - Motivations • Altrusim • Helping others “Em. . . I suppose just if someone else can be helped, and it’s something that I’ve experienced and went through, sure why not.(ID006)” • Helping future mothers “Eh, I don’t know if it’s of benefit to me, but maybe for other mothers, when their time comes, hopefully something good will come of it and it will help somebody, somewhere(ID006)”

  12. Research Findings - Motivations • Contribution to Medical Knowledge • Improvement of Care “It is important to understand that you guys have to have this information to improve services and improve facilities’(ID003)”. • Improvement of Knowledge “And the knowledge as well for academic stuff, I think that’s good as well. I think that any research into any area, knowledge, or any subject, I think that is good. I think that to take time and to give feedback is important... (ID007)”

  13. Research Findings - Motivations • Personal Gain/Benefit • Learning about Pregnancy Health “Em, I suppose, well even a lot of the questions I wouldn’t have thought about it being about my own health to the forefront, to be kinda more conscious of it(ID004)” • Concept of a “Personal” Midwife “Eh (pause) the benefits of participating? Well I suppose, the main benefit was that I actually for to talk to, eh, you know, a really qualified midwife and any questions I did have in relation to my own experience, you know during my pregnancy and after, that was a huge benefit (ID008)”

  14. Research Findings - Barriers • Timing “Well I’m not sure, you know about the overall, eh, you know, how my answers influence the overall study, but I was filling out the survey last when I was [number of] weeks pregnant and I think that some of the questions that are answered, about some syndromes during pregnancy, my answers might be different now. . . (ID001)” • Timing once the baby arrives “I don’t know to be honest with you (laughs). Em, I really don’t know, I don’t know how that will work so, em’. . .(ID002)”

  15. Research Findings - Barriers • Personal Questions “I suppose in hindsight, I was thinking that some of the questions were quite, eh, I would be generally a fairly private person so a few of the questions were a little bit, eh, you know, intrusive, you know like, asking about your sex life and things like that so that would have been something that I wouldn’t really be open to discuss it or filling out the form (ID008)” “Some of the questions I just thought were a little bit strange, but most of it was fine (ID006)”

  16. Research Findings – Informed Consent • Confidentiality “I think that was the main thing, how private it was going to go, but I guess my details aren’t going to be made public in the study, so once I knew that, I was happy enough (ID005)” “No, I trust that it is confidential and the details will be done I think, you know. And that this journal will have limited access, my name won’t be used in any of the publications, so that is good (ID001)”

  17. Research Findings – Informed Consent • The meaning of the study “Eh, well from what I got from talking to the midwife and from reading the information that was given, it was just all about first time mothers, the care they get and then, maybe sometimes the problems that you go through (ID006)” “I guess to a certain extent, yes, but I don’t know what they are trying to achieve from the overall study, what the results, what they are looking for, I guess It’s to see how first time mothers cope with motherhood and on from there, kind of, but, eh, so, kind of a yes and no answer (ID005)”

  18. Research Findings – Informed Consent “Em, well not really. . . Well I sort of but I sort of don’t fully understand where the, where it’s going to go from there. It’s going to help other pregnant women and understand the health, so ye, I really would ye (ID004)”

  19. 6. Conclusions • Motivations • Interrelated • Added Benefits • “Personal” Midwife • Barriers • Issue of Personal Questions • Positive Attitudes to Timing

  20. Conclusions • Informed Consent • Mixed Responses • Therapeutic Misconception • Recommendations • Methodology • Role of Researcher

  21. References • Allesee, L., Gallagher, C. M., (2011), “Pregnancy and Protection: The Ethics of Limiting a Pregnant Woman’s Participation in Clinical Trials”, Journal of Clinical Research and Bioethics, 2(108): 1-9 • Appelbaum, P. S., Roth, L. H., Lidz, C., (1982), “The Therapeutic Misconception: Informed Consent in Psychiatric Research”, International Journal of Law and Psychiatry, 5(3-4): 319-329 • Baker, L., Lavender, T., Tincello, D., (2005), “Factors that Influence Women’s Decisions about whether to Participate in Research: An Exploratory Study”, Birth: Issues in Perinatal Care, 32(1): 60-66 • Bryman, A., (2008), 3rd Ed, Social Research Methods, New York: Oxford University Press • Chapple, A., (1999), “The use of telephone interviewing for qualitative research”, Nurse Researcher, 6(3): 85-93 • De Melo-Martín, I., Ho, A., (2008), “Beyond Informed Consent: The Therapeutic Misconception and Trust”, Journal of Medical Ethics, 34(3): 202-205 • Dahl, K., Kesmodel, U., Hvidman, L., Olesen, F., (2006), “Informed consent: attitudes, knowledge and information concerning prenatal examinations”, ActaObstetricia et Gynecologica Scandinavia,85(12): 1414-1419 • Daniels, J. L., Savitz, D. A., Bradley, C., Dole, N., Evenson, K. R., Eucker, B., Herring, A. H., Siega-Riz, A. M., Thorp, J. M., (2006), “Attitudes toward Participation in a Pregnancy and Child Cohort Study”, Paediatric and Perinatal Epidemiology, 20(3): 260-266 • Founds, S. A., (2007), “Participating in Research for Pregnancy Complicated by Breech”, Health Care for Women International, 28(6): 573-589 • Jenkins, V., Fallowfield, L., (2000), “Reasons for accepting or declining to participate in randomized clinical trials for cancer therapy”, British Journal of Cancer, 82(11): 1783-1788 • Sharp, L., Cotton, S. C., Alexander, L., Williams, E., Gray, N. M., Reid, J. M., (2006), “Reasons for participation and non-participation in a randomized controlled trial: postal questionnaire surveys of women eligible for TOMBOLA (Trial Of Management of Borderline and Other Low-grade Abnormal smears), Clinical Trials, 3(5): 431-442  • Smith, E. M., (2005), “Telephone Interviewing in Healthcare Research: A Summary of the Evidence”, Nurse Researcher, 12(3): 32-41

  22. Thank you!

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