Pregnancy and parenting experiences of women with twin-to-twin transfusion syndrome: a qualitative study.

BACKGROUND: Qualitative research can reflect the actual thoughts and experience of research subjects and can be used to explore the experiences of women presenting with twin-to-twin transfusion syndrome (TTTS) to facilitate the provision of targeted psychological support. METHODS: A semi-structured interview method was used to assess the pregnancy and parenting experiences of women with TTTS. Colaizzi method was used for data analysis. RESULTS: Eighteen women participated in the study. We found that women with TTTS during pregnancy experienced persistent worry about their children's health from the disease diagnosis to the subsequent parenting processes, even in case of minor changes in their children's health. The lack of an efficient referral process and health information increased their uncertainty about their children's health. CONCLUSION: In addition to the children's health, other difficulties encountered during pregnancy and parenting may aggravate the pressure. Clinicians in the first-visit hospital and foetal medicine centre should improve the referral process and establish a follow-up system to provide women with health information and psychological support.

Parental attachment and depressive symptoms in pregnancies complicated by twin-twin transfusion syndrome: a cohort study.

BACKGROUND: Twin-twin transfusion syndrome (TTTS) is a highly morbid condition in which treatment exists, but the pregnancy remains high-risk until delivery. It may have serious sequelae, including fetal death, and in the longer term, neurodevelopmental problems. The aim of this study is to assess antenatal and postnatal parental attachment and depressive symptoms in those with pregnancies affected by TTTS. METHODS: Couples attending for fetoscopic laser ablation treatment of TTTS were asked to complete Condon's Maternal/Paternal Antenatal/Postnatal Attachment Scale as appropriate, and the Edinburgh Depression Scale the day before ablation, 4 weeks post-ablation, and 6-10 weeks postnatally. RESULTS: 25/27 couples completed the pre-ablation questionnaire (median gestational age 19 + 3 weeks [interquartile range 18 + 2-20 + 6]). 8/18 eligible couples returned the post-ablation questionnaire. 5/17 eligible couples returned the postnatal questionnaire. There was no significant difference in parento-fetal attachment when mothers were compared to fathers at each time point, however parento-fetal attachment did increase over time in mothers (p = 0.004), but not fathers. Mothers reported more depressive symptoms antenatally compared to fathers (p < 0.02), but there was no difference postnatally. 50% women reported Edinburgh Depression Scale scores above the cut-off (≥15) 4 weeks post-ablation. Over time maternal depressive symptoms decreased (p = 0.006), however paternal depressive symptoms remained the same. CONCLUSIONS: This is the first attachment and depression study in a UK cohort of parents with pregnancies affected by TTTS. Although this was a small cohort and the questionnaires used had not been validated in these circumstances, the results suggest that centres caring for these couples should be aware of the risk of maternal and paternal antenatal depression, and screen and refer for additional psychological support. Further work is needed in larger cohorts. TRIAL REGISTRATION: ISRCTN 13114861 (retrospectively registered).

Subsequent fertility, pregnancy, and gynecologic outcomes after fetoscopic laser therapy for twin-twin transfusion syndrome compared with normal monochorionic twin gestations.

BACKGROUND: An improved survival and quality of life for neonatal survivors after fetoscopic laser therapy for twin-twin transfusion syndrome has been reported. However, little is known about the medium-term maternal effects after fetoscopic laser therapy with respect to reproductive and gynecologic outcomes. OBJECTIVE: The objective of this study was to document reproductive, obstetric, gynecological, and psychological outcomes in women who underwent fetoscopic laser therapy for twin-twin transfusion syndrome. STUDY DESIGN: This was a monocentric controlled study on consecutive women who underwent fetoscopic laser therapy for twin-twin transfusion syndrome between 2007 and 2013 at the University Hospitals Leuven (cases; n = 198). Controls were women followed up during the same time period for an uncomplicated monochorionic diamniotic twin pregnancy and with an uneventful course (controls; n = 211). All patients received a questionnaire inquiring on their fertility, later pregnancies, and gynecological outcomes. RESULTS: The response rate was 50.4% (cases: n = 95; controls: n = 109). Most baseline characteristics were similar across both groups. Women in the fetoscopic laser therapy group attempted a new pregnancy more frequently (34% [31 of 92] vs 21% [22 of 107] in controls; P < .05) and became pregnant more often (100% [31 of 31] vs 82% [18 of 22]; P < .05).We observed a shorter interpregnancy interval in cases than controls (median interval, 12 [interquartile range, 5-27] vs 24 [interquartile range, 15-30] months) (P < .05). This was also observed in cases who lost one or both fetuses or babies in the index pregnancy (median interval, 9 [interquartile range, 3.5-25.5] months; P < .05). The complication rate during subsequent pregnancies (26% [8 of 31] vs 11% [2 of 19]; P = .194) and at delivery (17% [5 of 30] vs 11% [2 of 19]; P = .554) were comparable. More women who underwent fetoscopic laser coagulation reported relevant psychological symptoms (44% [40 of 92] vs 21% [23 of 107]; P < .05). When only women in whom there was a double-surviving twin pair were considered, there were no differences in psychological symptoms compared with controls (16% [15 of 55] vs 21% [23 of 107]; P = .411). Gynecological problems were equally frequent in both groups (20% [18 of 92] vs 31% [33 of 107]; P = .069). CONCLUSION: No adverse medium-term maternal effects with respect to fertility, obstetric, and gynecological outcomes were observed after fetoscopic laser therapy. However, these women reported more psychological or emotional problems than women with monochorionic diamniotic who did not have laser therapy, in particular when this was complicated by a fetal loss.

Depression, anxiety, and mental health service experiences of women with a twin-twin transfusion syndrome pregnancy.

Symptoms of emotional distress during and after pregnancy may be introduced or exacerbated by unexpected medical conditions in the mother or fetus. Twin-twin transfusion syndrome (TTTS), which accounts for 17% of fetal deaths in twins and entails substantial medical uncertainty, may represent a particularly challenging pregnancy experience. Yet, little is known about the impact of TTTS on women's emotional health. We retrospectively surveyed 350 women who experienced a TTTS pregnancy about their experiences at three time points (prior to, during, and after pregnancy) to examine symptoms of anxiety and depression, mental health diagnoses, thoughts of seeking mental healthcare, help received, and preferred mental health services. Women in this study experienced significantly elevated symptoms of depression and anxiety during and after pregnancy, regardless of their pregnancy outcome (double survivor, single survivor, or double loss). Women reported feeling devastated by their experience and indicated they would have accepted mental healthcare had it been offered and had barriers to care been addressed. Prospective studies of women experiencing TTTS pregnancies are needed to examine TTTS effects on maternal mental health and to determine how to best address emotional care needs.

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

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.

Parenting stress and psychosocial health in mothers with twin-twin transfusion syndrome managed with laser surgery: a preliminary study.

Twin-twin transfusion syndrome (TTTS) is a severe complication of twin pregnancies with high risk for perinatal mortality and long-term morbidity. This cross-sectional cohort study aimed to determine parenting stress and psychosocial health in mothers with a pregnancy complicated by TTTS that had been managed with laser ablation of communicating placental vessels. Questionnaires were sent to the mothers for completion: Parenting Stress Index (PSI), Edinburgh Postnatal Depression Scale (EPDS) and a semi-structured questionnaire related to mental health problems and support received from health professionals. Thirty-seven mothers were sent questionnaires with 32 being returned. The results showed that 47% of women had total scores equal to or greater than the 85th percentile on the PSI, which is considered abnormally high. Twenty-six per cent of mothers had evidence of depression on the EPDS. Mothers of children with prolonged medical conditions or neurological problems had significantly higher scores (p =.011). Parenting stress was not associated with high scores on the EPDS. Medical and midwifery staff were considered to provide high levels of support, with social work providing none or low levels of support. In conclusion, women whose TTTS pregnancy was managed by laser surgery have high levels of parenting stress. As the results showed that parenting stress cannot be predicted at the time of hospitalization, it is suggested that more support should be provided in hospital with further follow-up after discharge.