Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on sleep in brain health

LIVE: Thursday 2nd May 2024, 18:00-19:30 (CEST)

Quality sleep is essential for health. But what happens to our brains when sleep patterns are disturbed? Join our experts to explore the interplay between sleep disruption and neurological diseases, and the questions that you need to be asking your patients to help you prevent the harmful effects of sleep deprivation.
ADVANCED SEARCH
Log in
Top
BMC Pregnancy and Childbirth
Published in: BMC Pregnancy and Childbirth 1/2016

Open Access 01-12-2016 | Research article

Identifying families’ shared disease experiences through a qualitative analysis of online twin-to-twin transfusion syndrome stories

Authors: Rebecca Fischbein, James Meeker, Julia R. Saling, Michelle Chyatte, Lauren Nicholas

Published in: BMC Pregnancy and Childbirth | Issue 1/2016

Login to get access

Abstract

Background

Twin-to-twin transfusion syndrome (TTTS) affects 10–20 % of monochorionic diamniotic (MCDA) births and accounts for 50 % of fetal loss in MCDA pregnancies. This exploratory qualitative study identified shared experiences, including potential emotional and psychosocial impacts, of this serious disease.

Methods

Forty-five publicly accessible, online stories posted by families who experienced TTTS were analyzed using grounded theory.

Results

Shared TTTS experiences included a common trajectory: early pregnancy experiences, diagnostic experiences, making decisions, interventions and variable outcomes. Families vacillated between emotional highs such as joy, excitement and relief, and lows including depression, anxiety, anger and grief.

Conclusions

TTTS disease experience can be considered an “emotional roller coaster” exacerbated by TTTS’s unpredictable and quickly changing nature with the potential for emotional and psychosocial effects. Increased TTTS awareness and research about its corresponding impacts can ensure appropriate patient and family support at all phases of the TTTS experience.
Footnotes
1
Names have been changed throughout the text.
 
Literature
1.
Blickstein I. Monochorionicity in perspective. Ultrasound Obs Gynecol. 2006;27:235–8.CrossRef
2.
Lewi L, Jani J, Blickstein I, Huber A, Gucciardo L, Van Mieghem T, et al. The outcome of monochorionic diamniotic twin gestations in the era of invasive fetal therapy: a prospective cohort study. Am J Obstet Gynecol. 2008;199:514.e1–8.CrossRef
3.
Bajoria R, Wigglesworth J, Fisk NM. Angioarchitecture of monochorionic placentas in relation to the twin-twin transfusion syndrome. Am J Obstet Gynecol. 1995;172:856–63.CrossRefPubMed
4.
5.
Nicholas L. An Examination of the Effects of Current Obstetrical Opinions, Diagnostic and Practice Trends in the Management of Twin to Twin Transfusion Syndrome Patients. In: Blair SL, McCormick JH, editors. Fam. Heal. Evol. Needs, Responsib. Exp. (Contemporary Perspect. Fam. Res. Vol. 8B). Bingley, England: Emerald Group Publishing Limited; 2014. p. 169–222.
6.
Edwards DM, Gray PH, Soong B, Chan F-Y, Cincotta R. Parenting stress and psychosocial health in mothers with twin-twin transfusion syndrome managed with laser surgery: a preliminary study. Twin Res Hum Genet. 2007;10:416–21.CrossRefPubMed
7.
Martin PY, Turner BA. Grounded Theory and organizational research. J Appl Behav Sci. 1986;22:141–57.CrossRef
8.
Strauss A. Qualitative Analysis for Social Scientists. Cambridge: University Press; 1987.CrossRef
9.
Glaser B, Strauss A. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine; 1967.
10.
Saldaña J. The Coding Manual for Qualitative Researchers. London: SAGE Publications Ltd; 2009.
11.
Patton M. Qualitative Evaluation and Research Methods. 3rd ed. Los Angeles: Sage Publications; 2001.
12.
13.
Lofland J, Lofland LH. Analyzing Social Settings. 3rd ed. Belmont: Wadsworth; 1995.
14.
Becker H. The Epistemology of Qualitative Research. In: Jessor R, Colby A, Shweder RA, editors. Ethnogr Hum Dev. Bingley, England: The University of Chicago Press; 1996. p. 53–71.
15.
Rossman M. Designing Qualitative Research: Fifth Edition. Los Angeles: Sage Publications; 2010.
16.
17.
Baud D, Windrim R, Van Mieghem T, Keunen J, Seaward G, Ryan G. Twin-twin transfusion syndrome: A frequently missed diagnosis with important consequences. Ultrasound Obstet Gynecol. 2014;44:205–9.CrossRefPubMed
18.
Shiloh S, Ben-Sinai R, Kelman G. Effects of controllability, predictability, and information-seeking style on interest in predictive genetic testing. Personal Soc Psychol Bull. 1999;25:1187–95.CrossRef
19.
van der Molen B. Relating information needs to the cancer experience: 1. Information as a key coping strategy. Eur J Cancer Care (Engl). 1999;8:238–44.CrossRef
20.
Brown JB, Carroll J, Boon H, Marmoreo J. Women’s decision-making about their health care: views over the life cycle. Patient Educ Couns. 2002;48:225–31.CrossRefPubMed
21.
Budden LM, Pierce PF, Hayes BA, Buettner PG. Australian women’s prediagnostic decision-making styles, relating to treatment choices for early breast cancer treatment. Res Theory Nurs Pract. 2003;17:117–36.CrossRefPubMed
22.
Huber JT, Cruz JM. Information needs and information-seeking behaviors of HIV positive men and women. Med Ref Serv Q. 2000;19:39–48.CrossRefPubMed
23.
Moise KJ Jr, Johnson A, Moise KY, Nickeleit V. Radiofrequency ablation for selective reduction in the complicated monochorionic gestation. Am J Obstet Gynecol [Internet]. 2008;198:198.e1–5.
24.
Moise KJ Jr, Johnson A, Carpenter RJ, Baschat AA, Platt LD. Fetal Intervention: Providing reasonable access to quality care. Obstet Gynecol. 2009;113:408–10.CrossRefPubMed
25.
Senat MV, Deprest J, Boulvain M, Paupe A, Winer N, Ville Y. Endoscopic laser surgery versus serial amnioreduction for severe twin-to-twin transfusion syndrome. N Engl J Med. 2004;351:136–44.CrossRefPubMed
26.
Baud D, Windrim R, Keunen J, Kelly EN, Shah P, Van Mieghem T, et al. Fetoscopic laser therapy for twin-twin transfusion syndrome before 17 and after 26 weeks’ gestation. Am J Obstet Gynecol. 2013;208(3):197.e1–7.CrossRef
27.
Roberts D, Gates S, Kilby M, Neilson JP. Interventions for twin-twin transfusion syndrome: A Cochrane review. Ultrasound Obstet Gynecol. Bingley, England: 2008. p. 701–11.
28.
Schroeder CA. Women’s experience of bed rest in high-risk pregnancy. Image J Nurs Sch. 1996;28:253–8.CrossRefPubMed
29.
30.
Beck V, Opdekamp S, Enzlin P, Done E, Gucciardo L, El Handouni N, et al. Psychosocial aspects of invasive fetal therapy as compared to prenatal diagnosis and risk assessment. Prenat Diagn. 2013;33:334–40.PubMed
31.
Rubarth LB, Schoening AM, Cosimano A, Sandhurst H. Women’s experience of hospitalized bed rest during high-risk pregnancy. J Obstet Gynecol Neonatal Nurs. 2012;41:398–407.CrossRefPubMed
32.
McIntosh J, Meriki N, Joshi A, Biggs V, Welsh AW, Challis D, et al. Long term developmental outcomes of pre-school age children following laser surgery for twin-to-twin transfusion syndrome. Early Hum Dev. 2014;90:837–42.CrossRefPubMed
33.
34.
35.
Bryan E. Psychological aspects of prenatal diagnosis and its implications in multiple pregnancies. Prenat Diagn. 2005;25:827–34.CrossRefPubMed
36.
Kollantai J. Coping with the impacts of death in a multiple birth. In: Blickstein I, Keith G, editors. Mult. Pregnancy Epidemiol. Gestation Perinat. Outcome. 2nd ed. London: Taylor & Francis Group; 2005. p. 874–6.CrossRef
37.
Kollantai J. The context and long-term impacts of multiple birth loss: a peer support network perspective. Twin Res. 2002;5:165–8.CrossRefPubMed
38.
Pector EA, Smith-Levitin M. Mourning and psychological issues in multiple birth loss. Semin Neonatol. 2002;7:247–56.CrossRefPubMed
39.
Pector EA. Views of bereaved multiple-birth parents on life support decisions, the dying process, and discussions surrounding death. J Perinatol. 2004;24:4–10.CrossRefPubMed
40.
Pector EA, Smith-Levitin M. Bereavement: Grief and psychological aspects of multiple birth loss. In: Blickstein I, Keith LG, editors. Mult. Pregnancy Epidemiol. Gestation Perinat. Outcome. London: Taylor & Francis Group; 2005. p. 247–56.
41.
Wilson K, Reiser K. Social stratification and the digital divide. Soc Sci Comput Rev. 2003;21:133–42.CrossRef
42.
Seale C, Charteris-Black J, MacFarlane A, McPherson A. Interviews and internet forums: a comparison of two sources of qualitative data. Qual Health Res. 2010;20:595–606.CrossRefPubMed
43.
Morrow S. Qualitative Research for Counseling Psychology: Conceptual Foundations. Couns Psychol. 2007;35:209–35.CrossRef
44.
Green JM, Statham HE. Psychosocial aspects of prenatal disagnosis: The challenges for doctors and patients. In: Cockburn J, Pawson ME, editors. Psychol. Challenges Obstet. Gynecol. London: Springer-Verlag London; 2007. p. 107–20.CrossRef
45.
46.
Barlow H, Hainsworth J, Thorton S. Women’s experiences of hospitalisation with hypertension during pregnancy: feeling a fraud. J Reprod Infant Psychol. 2008;26:157–67.CrossRef
47.
48.
Bernazzani O, Bifulco A. Motherhood as a vulnerability factor in major depression: the role of negative pregnancy experiences. Soc Sci Med. 2003;56(6):1249–60.CrossRefPubMed
49.
Badenhorst W, Hughes P. Psychological aspects of perinatal loss. Best Pract Res Clin Obstet Gynaecol. 2007;21:249–59.CrossRefPubMed
50.
Chourasia N, Surianarayanan P, Adhisivam B, Vishnu BB. NICU admissions and maternal stress levels. Indian J Pediatr. 2013;80:380–4.CrossRefPubMed
51.
Turner M, Winefield H, Chur-Hansen A. The emotional experiences and supports for parents with babies in a neonatal nursery. Adv Neonatal Care. 2013;13:438–46.CrossRefPubMed
52.
Solomon M, Pistrang N, Barker C. The benefits of mutual support groups for parents of children with disabilities. Am J Community Psychol. 2001;29:113–32.CrossRefPubMed
53.
Maloni JA, Kutil RM. Antepartum support group for women hospitalized on bed rest. MCN Am J Matern Child Nurs. 2000;25:204–10.CrossRefPubMed
Metadata
Title
Identifying families’ shared disease experiences through a qualitative analysis of online twin-to-twin transfusion syndrome stories
Authors
Rebecca Fischbein
James Meeker
Julia R. Saling
Michelle Chyatte
Lauren Nicholas
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Pregnancy and Childbirth / Issue 1/2016
Electronic ISSN: 1471-2393
DOI
https://doi.org/10.1186/s12884-016-0952-6

Other articles of this Issue 1/2016

BMC Pregnancy and Childbirth 1/2016 Go to the issue

Research article

Vitamin D deficiency and supplementation in pregnancy in a multiethnic population-based cohort

Research article

Use of prophylactic uterotonics during the third stage of labor: a survey of provider practices in community health facilities in Sierra Leone

Case report

Vertebral artery dissection in hypertensive disorders of pregnancy: a case series and literature review

Research article

Provider adherence to first antenatal care guidelines and risk of pregnancy complications in public sector facilities: a Ghanaian cohort study

Study protocol

A study of an intelligent system to support decision making in the management of labour using the cardiotocograph – the INFANT study protocol

Research article

Pre-pregnancy obesity and non-adherence to multivitamin use: findings from the National Pregnancy Risk Assessment Monitoring System (2009–2011)