The emotional journey of parenting your premature baby

This questionnaire is a way of gathering information from parents and families of premature babies. Your stories will be used in a book I am writing to illustrate and describe the emotional journey and psychological issues that emerge with the birth of a premature baby. Before you take a look at the questionnaire, please take a minute to read this short introduction.

The goal for this book is to describe and explain the emotional elements commonly felt by families who experience a birth crisis/premature birth. As a result, the questions I am asking you to consider are quite emotionally charged. I am asking you to think about an intense time and to reflect on some of the most difficult feelings a parent ever has to experience. My hope in doing this project is that it will ultimately be helpful for the participants and that when it is completed, will be a thorough resource for parents, grandparents and extended families currently going through the process. I would also like this to be a resource for health professionals working with these families.

Please forward your newly-told stories directly to me at mtstein@aol.com.

I plan to use direct quotes from the material you will be writing. By sending me your completed questionnaire/story, you will have consented to have your words quoted in my book. I will make every effort to quote *in context* and, of course, *respectfully.* I will not be including identifying information, but want to use actual vignettes rather than composites in order to preserve the richness of your emotional experiences. If anyone is concerned about the use of their stories or words, please e-mail me to discuss this.

I would like to also ask permission to write back with follow-up questions if that should come up. If you do not want to hear back from me, please say so when you send your response.

Before you begin to respond, think about who you turn to for support when you start to feel upset and overwhelmed about these issues. Try to find quiet blocks of time to use to respond to these questions. Don't try to finish large chunks of it at once, take your time. This is a very long questionnaire. Feel free to respond to as much or as little of it as you like. I appreciate the emotional effort it will take for you to write down your thoughts and especially your feelings about your child^Òs premature birth. I am available via e-mail for anyone who wants to talk about a particularly upsetting response (should that situation arise). I would also help you to find appropriate resources in your area should that be necessary.

A quick note about the format: My idea in sending the questionnaire was to give people an outline through which they could tell their story. All of you have told your stories many times in many ways. For my purposes here, I am essentially asking you to retell your story with special attention to the psychological and emotional elements I have outlined. I encourage you to find a format that suits you best. You can respond topic area by topic area, or you could write a new narrative using the topic guide as an outline. My goal here is to help you to talk about your experiences using more emotional and psychological language. If any questions should arise during this process, please e-mail me - mtstein@aol.com - at any time.

Stories are welcome to be contributed until late 1998.

I thank you in advance for your effort and your support of this project!

Mara Stein (Mom to Gavriella and Layla; 30.5 weekers, born 5-30-96)

(Clinical Psychologist)

email:Mtstein@aol.com

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The Emotional Aspects of Premature Birth - a Questionnaire

The survey is addressed to all people who have experience of premature birth, as parents, grandparents, extended family, older siblings, co-workers etc.

Feel free to ask anyone you feel appropriate to respond to any of these sections. Just let me know who ’s responding to what! There will be times when issues of multiple birth will come up. I ask questions as if everyone has one baby - multiply accordingly! In general, respond as is appropriate for your situation. Also, you may find that certain issues will come up repeatedly in various sections of the questionnaire. Feel free to skip an area if you feel that you have completely addressed it in another section (perhaps just refer me back to that section). Thanks.

Part I: Chronology:

This section will ask you to think about the timeline you experienced - from the "getting pregnant" phase to the present time. It will ask you to reflect not only on what happened, but what it meant to you, how you felt, what you did, and what you thought about at each phase. **At the end of the section are some questions that apply to each phase. Please respond to each one for each phase.

  • Delivery

    Part II: Losses:

    This section focuses specifically on some of the losses inherent in premature birth. Could you reflect on and discuss the losses you felt in each of the following areas, if the areas are relevant for you.

  • Loss of:

  • The loss of a baby

  • In the areas of loss relevant to you, could you reflect on and describe

    Part III: Fears:

    This section focuses specifically on the fears stirred up by the experience of premature birth. Could you reflect on and discuss the fears you felt in each of the following areas, as they are relate to you.
  • Fears about:
  • Could you describe your thoughts, feelings and actions around each of these issues, as they relate to you:

    Part IV: Relationships:

    This section focuses on the ways that you have related with others since the pregnancy/premature birth.

  • Could you reflect on the ways in which you interacted with the following people.

  • How did they respond to the premature birth?
  • How did their styles fit (or not) with yours?
  • What did you need from them? Were they able to provide what you needed?
  • How much did you feel like interacting with others?
  • In what ways did you tend to interact with others?

    Part V: Parenting the Premature baby:

    This section focuses on the experience of parenting children born prematurely. The list of questions at the end of the list are a guide for reflecting on these issues.

  • How did your own parents and other family members respond?
  • How did you find parenting in the nursery?
  • When did you begin to feel like a parent to your premature baby?
  • How did you feel about the various caretakers your child had?
  • How did you feel about the ways in which the NICU staff assisted you to parent your child?

  • How did you cope with the following, if relevant to you:
  • How did people other than your family respond and how you handle the responses?

  • What were some ideas you had about what type of parent you would be?
  • What sorts of hopes and dreams did you have about what the parenting experience would be like?
  • What modifications did you have to make when your child was born?
  • How did having a premature baby impact on your ideas about yourself as a parent?

    Part VI: Adaptations:

    This section asks you to consider the monumental task you all went through - that of adapting to the new circumstances presented to you. Could you reflect on the various elements that were suddenly different or unexpected. Think about how you felt, what you thought about and what you did in order to cope and adjust to the following issues:

    Part VII: Common experiences:

  • Did you experience any of the following -

  • Other issues which may be relevant to your response are:

  • COPING/What did you do?

    Thankyou for the time you have taken to complete this long and possibly difficult questionnaire. I value your efforts greatly and hope that my book, when it is published, will be of assistance to parents and families of premature babies everywhere.

    copyright Mara Tesler Stein, Psy.D., 1997

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