Parenting a Lone Twin: When One Twin Dies

1. KELLY GRADY PhD RN-BC Boston College Connell School of Nursing Parenting a Lone Twin: When One Twin Dies

2. Acknowledgments • Boston College Connell School of Nursing Fellowship • Robert Wood Johnson Foundation (RWJF) Partners Investing in Nursing's Future (PIN) Scholarship • Committee: Dr. June Horowitz, Dr. Danny Willis, Dr. Sandy Mott & Dr. Joellen Hawkins • Wentworth-Douglass Hospital, Dover NH

3. Problem of Concern Little is known about the experience of parents of surviving twins, when one twin dies in utero, at birth, or in the first six weeks of life Parenting a lone twin may be especially challenging due to the permanent reminder of the loss in the living twin Multiple losses and the invisibility of the loss complicate the circumstances in which these mothers and fathers parent their living twin

4. Significance More twins = more loss Higher morbidity and mortality for twins Complicated context of grieving and attachment at a crucial time in the development of the living twin and role of parent Supportive interventions needed Changing models of grief

5. Review of the Literature Early Parenting: attachment and role identity Expecting Twins: pregnancy and birth Nursing Research: loss of one twin Bereavement: perinatal and parental

6. Nursing Research: Loss of a twin Van der Zalm (1995): Case study of ‘attachment and detatchment’ process of grieving and then bonding with survivor Sychowski (1998): Hermeneutic phenomenology: meaning of ‘twinship’ most common theme…depicted “two worlds” of joy and sorrow Van der Zalm (1999): Phenomenological study of lone twin

7. Research Question What is the experience of parenting a lone infant twin, when one dies? Aim: To describe the experience of parenting a surviving twin from the perspective of those mothers and fathers who experience the loss one twin in utero (after 20 weeks gestation), during birth, or in the immediate neonatal period (first six weeks of life)?

8. Theoretical Underpinnings Social constructivism (Berger & Luckmann, 1966) Parent as social construction (Arendell, 1997) Naturalistic inquiry (Guba & Lincoln, 1985) Belief in family narrative (Moules, 1997)

9. Methodological Approach Qualitative descriptive design Aim is comprehensive description Interviews with open-ended questions and probes Purposive sampling of ~10-12 parents Goal to include fathers and a diverse population Plan for sampling to continue until no new information emerged

10. Inclusion Criteria Mothers and fathers who: • Are > 21 years of age • Read, speak, and understand English • Live within 200 mile radius of researcher • Have experienced a known twin pregnancy • Are parenting a surviving twin infant who is at least 1 year of age and has not completed his or her 2nd year of life

11. Population/Sample Proposed: CLIMB virtual support group invitation Snowball effect via colleagues who know of my study Institution based clinic practices in Boston

12. Population/Sample CLIMB: Centers for Loss in Multiple Birth Pre-established relationship with founder, pilot work (thesis) Online website, “virtual membership” Newsletter to members (quarterly) Offered parents who live outside New England the opportunity to participate via phone interview or email Parents who were raising a lone twin of any age who desired to participate

13. Interview Guide 1. “Tell me what it was like to be the parent of your living twin during his/her first year of life.” 2. “What kinds of challenges did you face in dealing with the loss of one twin while raising his or her brother or sister?”  3. “Tell what it is like to nurture a baby while experiencing the loss of one.”  4. Often parents comment, “No one really understands what it is like to lose one twin. Have you ever felt that way? Tell me what that was like. What do you think parents like you need to know?” 

14. Qualitative Content Analysis Data were transcribed verbatim with pseudonyms Data immersion continued with each interview Rigor Reflective journal documented all decisions Reflexivity Credibility Transferability Trustworthiness

15. Participants 9 parents (8 mothers, 1 father) Interviews: 3 in-person, 1 on phone, & 4 via email Circumstances of death: congenital anomalies (known and expected deaths), prematurity, and stillbirths (unknown causes) Some parents knew for weeks/months that one twin would die or had died, others knew hours before birth Some experienced a prolonged NICU stay for living twin All parents had children in addition to the twins

16. Themes Living with the ambiguity Communicating the family journey Parenting with wonder and worry Life is different now

17. Theme: Living with the ambiguity Irony in raising a lone twin Belonging and not belonging “At least there is one”

18. Ambiguity

19. Theme: Communicating the family journey Telling and not telling Deciding who needs to know “How many children do you have?”

20. Communicating: how, who, when?

21. Theme: Parenting with wonder and worry Doubt and hyper-vigilance Unanswerable questions Living twin as a unique person

22. Worrying and Concern

23. Theme: Life is different now Loss of innocence Honoring both twins Making and keeping relationships Work-life challenges Accepting that it doesn’t go away

24. Remembering their twin

25. Strengths Multiple perspectives Member verification Parents were articulate and thoughtful Timing of interviews when they felt ready to share Participation allowed several parents to honor the child that died and help others Limitations Support group bias and online access limitations Researcher’s limited experience with email dialogue with participants Only one father participated Strengths/Limitations

26. Opportunities presented by this study Issues Raised by Parents Ambiguity and irony of having a lone twin “No one understands” Multiple losses, complicated grief Living with the loss Implications Practice: follow-up and relationship Education: content about communication Research: contemporary model of living/parenting with context of grief Theory: Mid-range theory development Dissemination of these may help to facilitate awareness

27. Questions