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Abstract
Background: Previous qualitative studies have shown that the decision to undergo Pre-implantation Genetic Diagnosis (PGD) is a demanding situation that increases psychological burden and activates moral beliefs and cognitive assessments. Most studies are based on women’s experiences. Studies about the choice are mostly done in a hypothetical setting. Objective: The aim of this study was to investigate psychological aspects, the influence of the healthcare system and ethical considerations in relation to men and women’s decision to undergo PGD. Method: Nineteen couples (19 women and 17 men) all planning and eligible for PGD in Sweden were interviewed. Data were analysed with a thematic approach. Results: The analysis lead to the formation of a master theme, labelled Choosing. In addition, three subthemes emerged – In relation to myself, In relation to the child, and In relation to the society – and nine underlying categories. No differences were found between men and women concerning emotional depth or cognitive recognition of the decision. Conclusion: The men and women in this study were a heterogeneous group with great variations in reproductive history. However, they expressed common themes about what affected them in their deciding to undergo PGD. The themes are complex and activate ethical reasoning. The results of the present study are relevant for pre-PGD counselling, and indicate that support should be provided to men as well as to women.
Acknowledgements
We thank the participating men and women who most generously shared their thoughts and experiences.
Appendix
Semi-structured interview guide
Could you start by telling me about why you are patient here today?
PSYCHOLOGICAL ASPECTS
How long have you been in your present relationship?
Do you already have children? If yes, how many? Are they diagnosed with the genetic disease? Sick? Lost?
You/your partner carry this disease/genes, do you have any thoughts about this?
What do you know about your/your partner’s disease/genes? In which way are you affected by this?
When did you decided to have a child/sibling?
How did you come to this decision?
Through your life, what feelings and thoughts have you had about the possibility of becoming a parent?
Do you remember when you thought for the first time about being a mother/father?
Has your relationship been affected since you decided you want to have a child/sibling? If yes, in what way?
Have other things in your life been affected since you decided to have a child/sibling? If yes, which? And in what way?
Do you think that your wish for a child/sibling affects you in how you feel? If yes, in which way?
Have you considered other ways to have a child (adopt, donation)?
How do you feel mentally?
How do you feel physically?
DESICION-MAKING
When there are risks of transmitting genetic disease there are different diagnostic options for determining whether the child has the disease/gene, which alternatives do you know?
Have you gone through any of these options before?
How have you got your information about these options?
Have you decided to undergo any of these right now? Which? Why?
How have you and your partner reasoned in this question around options? Are there aspects where you disagree?
Which advantage do you see with the option you have chosen now?
Which disadvantage do you seen with the option you have chosen now?
Have you discussed your choice with persons in your family/friends? Yes/no? How did they react?
INFORMATION
How do you think the information about diagnostic alternatives has been? From whom have you got it?
How do you assess the information from healthcare regarding these questions?
Has (personnel) from healthcare facilitated your decision?
Has (personnel) from healthcare hampered your decision?
Has (personnel) from healthcare affected your decision?
OTHER
Have you had ethical considerations regarding your decision?
Have you had religious considerations regarding your decision?
Are there additional things that you want to add, or thoughts about regarding your wish for a child that you would like to share?