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      The silent world of assisted reproduction: A qualitative account of communication between doctors and patients undergoing in vitro fertilisation in Australia

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          Abstract

          Context

          In vitro fertilisation (IVF) is now a common assisted reproductive technology (ART) procedure globally, with 8 million children alive today having been conceived utilising IVF. For many patients, IVF is a difficult experience with many discontinuing treatment because of emotional, relationship and financial stress, or intolerable physical side effects of hormone treatments.

          Design and Participants

          A qualitative study, in which 31 professionals and 25 patients from the ART sector in Australia were interviewed. The interviews were analysed using codebook thematic analysis.

          Results

          Our data indicates there are ‘silences’ within the therapeutic relationship of IVF, which may limit the capacity for patients to prepare emotionally, financially, or medically for the procedure, and may contribute to psychological distress and dissatisfaction with care. These ‘silences’ include what the patient ‘is not told’ by their clinician or ‘does not hear’ and what the patient feels they ‘cannot say’.

          Discussion

          Drawing upon the work of Jay Katz, Charis Thompson, and Miles Little on ‘silences’ and performance in clinical practice, we argue that although IVF is a complex and multifaceted procedure that is often conducted in a commercial setting, the clinical and therapeutic relationship between doctor and patient remains pivotal to the experiences of patients. The ‘silences’ within this relationship may impact negatively on decision‐making, and on the delivery and experience of care.

          Conclusions

          Careful attention to the realities of IVF treatment in the clinic room (and awareness of the performances that hide them) should allow for more present and compassionate care. Such care may leave patients more satisfied with their experience and their choices, regardless of treatment outcomes.

          Patient or Public Contribution

          This article draws on interviews with patients who had undergone or were currently undergoing IVF, as well as a range of representatives from the ART community (including reproductive medicine specialists, general practitioners, fertility nurses, counsellors, administrators in ART businesses and embryologists).

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          Most cited references17

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          BIRTH AFTER THE REIMPLANTATION OF A HUMAN EMBRYO

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            The relationship between stress and infertility

            The relationship between stress and infertility has been debated for years. Women with infertility report elevated levels of anxiety and depression, so it is clear that infertility causes stress. What is less clear, however, is whether or not stress causes infertility. The impact of distress on treatment outcome is difficult to investigate for a number of factors, including inaccurate self-report measures and feelings of increased optimism at treatment onset. However, the most recent research has documented the efficacy of psychological interventions in lowering psychological distress as well as being associated with significant increases in pregnancy rates. A cognitive-behavioral group approach may be the most efficient way to achieve both goals. Given the distress levels reported by many infertile women, it is vital to expand the availability of these programs.
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              Tackling burden in ART: an integrated approach for medical staff.

              Discontinuation is a problem in fertility clinics. Many couples discontinue assisted reproductive technologies (ART) without achieving a live birth for reasons other than poor prognosis or the cost of treatment. Discontinuation has been attributed to the burden of treatment. The causes of burden can be broadly classified according to whether they originate in the patient, clinic or treatment. Interventions to alleviate these burdens include provision of comprehensive educational material, screening to identify highly distressed patients, provision of tailored coping tools and improvements in the clinic environment and medical interventions. Practical interventions to reduce the different causes of burden in ART exist, but further development and evaluation of the efficacy of these interventions requires more precise definition of terms and theory. In this paper, we propose a general integrated approach to cover different perspectives in dealing with burden in ART clinics. We firstly describe the integrated approach and present common sources of burden. We then describe interventions that could help reduce the burden in ART. Our paper is aimed at fertility clinic staff because of their day-to-day involvement with patients. However, this discussion should also be relevant to companies that develop treatments and to psychosocial experts. Reducing the burden of treatment should lead to improved outcomes, namely better quality of life during treatment and lower discontinuation rates.
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                Author and article information

                Contributors
                Role: Research Officer
                Role: Professor
                Role: Professorwendy.lipworth@sydney.edu.au
                Journal
                Health Expect
                Health Expect
                10.1111/(ISSN)1369-7625
                HEX
                Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                John Wiley and Sons Inc. (Hoboken )
                1369-6513
                1369-7625
                04 August 2023
                December 2023
                : 26
                : 6 ( doiID: 10.1111/hex.v26.6 )
                : 2340-2348
                Affiliations
                [ 1 ] Sydney Health Ethics, Faculty of Medicine and Health The University of Sydney Camperdown New South Wales Australia
                [ 2 ] Haematology Department Royal North Shore Hospital St Leonards New South Wales Australia
                [ 3 ] Department of Philosophy Macquarie University Macquarie Park New South Wales Australia
                Author notes
                [*] [* ] Correspondence Wendy Lipworth, Sydney Health Ethics, Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, Australia.

                Email: wendy.lipworth@ 123456sydney.edu.au

                Author information
                http://orcid.org/0000-0002-6530-7068
                Article
                HEX13839
                10.1111/hex.13839
                10632647
                37539651
                aaf5fe7a-8442-487c-b606-97dbf559d753
                © 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 27 June 2023
                : 21 March 2023
                : 25 July 2023
                Page count
                Figures: 0, Tables: 2, Pages: 9, Words: 6440
                Funding
                Funded by: National Health and Medical Research Council , doi 10.13039/501100000925;
                Award ID: NHMRC Grant APP1181401
                Categories
                Original Article
                Original Articles
                Custom metadata
                2.0
                December 2023
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.3.4 mode:remove_FC converted:09.11.2023

                Health & Social care
                art,consent,corporatisation,ethics,ivf,patient–doctor relationship,treatment burden
                Health & Social care
                art, consent, corporatisation, ethics, ivf, patient–doctor relationship, treatment burden

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