Life after terminated IVF – experience and quality of life among men and women

Abstract: The overall aim of this thesis was to study experiences of infertility and quality of life as subjectively experienced health and psychological well-being as well as demographic, socio-economic and health issues in men and women terminating IVF unsuccessfully, i.e. without subsequent childbirth. The informants in the qualitative studies, in which a descriptive, phenomenological method was used, were eight women (Paper I) and eight men with severe male-factor infertility (Paper II). The informants had, two years earlier, terminated assisted reproductive technology (ART) treatment unsuccessfully. All informants had had fertilized oocytes after in vitro fertilization (IVF) or intracytoplasmatic sperm injection (ICSI) and embryo transfer (ET) had also been performed. Papers III and IV are parts of a large collaborative project in the Västra Götaland region including different perspectives on quality of life 4-5.5 years after terminated IVF treatment provided by the public health system. The informants in Paper III were couples who had undergone unsuccessful IVF treatment. The study in Paper IV was performed on men and women who had successfully or unsuccessfully undergone IVF. Comparisons were made with a control group with spontaneously conceived children. Data were collected with the “Psychological General Well- Being” (PGWB) and “Sense of Coherence “(SOC) instruments, and with two questionnaires focusing on experiences of infertility and socio-economic, demographic and health data. This thesis shows that the essence of the women’s experience of involuntary infertility was life-grief, including grief at being childless, unable to reproduce and unable to continue the family, as well as a feeling of being unable to confirm the relationship through parenthood. The essence of the men’s experiences was described with a metaphor: climbing a mountain step by step with the aim of reaching the top, i.e. having a child and thus a family with a child. Quality of life among couples who had terminated IVF unsuccessfully did not differ considerably from that in a control group with children. However, 23% of this unsuccessful IVF group were living without children and 77% were living with children. The 23 % living without children had a lower quality of life than the 77% living with children and the control group. Infertility remained a central issue for those living without children. Quality of life among men in the unsuccessful IVF group living without children was lower than among men in the successful IVF group and men in the control group. Women in the unsuccessful IVF group living without children reported a lower quality of life than women in the successful IVF group and they scored two of the assessed quality of life variables lower than women in the control group. Men in the successful IVF group scored three assessed quality of life variables higher, compared to the women in that group. Men and women in the unsuccessful IVF group living without children did not differ in quality of life. Keywords: infertility, IVF, ICSI, childlessness, phenomenology, lifeworld, grief, male-factor infertility, obstructive azoospermia, experience, psychology, quality of life, follow-up, gender ISBN 978-91-628-8074-3