Abstract

Abstract Study question Are educational materials to promote the routine implementation of PCUFT at clinics acceptable and feasible for healthcare professionals (HCPs) and patients? Summary answer HCPs and patients expressed high demand for PCUFT and welcomed educational materials to support this endeavour but expressed different views about how to offer it. What is known already Nine in ten patients want to discuss the possibility of fertility treatment being unsuccessful as part of routine care offered at clinics, but only 35% of patients report having this opportunity. Offering PCUFT, defined as assistance and guidance on the implications of treatment being unsuccessful, could promote patients’ positive adjustment to this loss. However, it is unknown if and how PCUFT varies across countries and HCPs’ and patients’ perceived barriers towards its implementation. The present international qualitative study investigated HCPs’ and patients' willingness and preferences about using research-informed educational materials to support the implementation of PCUFT at fertility clinics. Study design, size, duration Seven Focus Groups were conducted with HCPs (March 2022) from Europe (Belgium/Finland/Germany/Italy/Portugal/Spain/UK) and South America (Argentina/Brazil/Chile), and patients and patient advocates (March-December 2022) also from Europe (UK/Portugal) and South America (Argentina/Chile). Participants were invited to participate through fertility charities/associations and social media. Eligibility criteria were being aged 18 or older, working at a fertility clinic (HCPs) or charity (advocates), or waiting to initiate or undergoing fertility treatment or having completed treatment within six months (patients). Participants/materials, setting, methods Semi-structured script following Bowen’s (2009) framework. Section one evaluated demand and acceptability of implementing PCUFT. Section two introduced a proposal of research-informed educational materials to promote PCUFT (MyJourney webpages - for HCPs: practical advice on introducing PCUFT and addressing patients’ FAQs; for patients: information and support for unsuccessful treatment in video, text, FAQs). Questions elicited views on the materials’ acceptability, practicality and adaptation. Focus groups were recorded, transcribed verbatim, and data analysed with Framework Analysis. Main results and the role of chance Thirty-four patients, seven advocates, 15 HCPs participated. Patients were 38 years old and trying to conceive for around three years, most were female(91.18%) and childless(73.53%). HCPs were mostly psychologists(40.00%) or physicians(33.33%) in the field for around 22 years. Framework analysis generated four themes and one meta-theme, reflecting a need for a normative shift towards having PCUFT as part of routine care. Themes were: (1) need for better collaboration and support, strongly endorsed by patients, who perceived PCUFT would enable them to better cope with treatment, make more long-term informed-decisions, and feel supported, particularly after treatment; (2) current PCUFT approaches are almost non-existent/non-optimal. Patients and HCPs agreed PCUFT is not offered but expressed different views about its appropriateness. HCPs considered PCUFT more appropriate at later treatment stages and expressed lack resources and know-how to implement it; (3) PCUFT requires an empathic, hopeful, multidisciplinary approach. While patients want to receive in-depth medical advice about their full treatment options, potential outcomes and support to prepare for (unsuccessful) treatment, most HCPs envisioned present-focused information-sharing and support tailored to patients’ treatment stage; and (4) high demand for educational materials to promote PUCFT. MyJourney package prototype is beneficial but needs improvements to be acceptable and feasible. Limitations, reasons for caution Non-probability sample. Although the patients’ sample was heterogeneous (including heterosexual and homosexual couples; from private and public clinics), patients were primarily white, well-educated, employed, and childless women, limiting the generalisation of results and comparisons across gender. Wider implications of the findings HCPs and patients agree PCUFT is needed and beneficial, but HCPs’ will need reassurance about the right timing and support on appropriate ways to implement it given its sensitivity and perceived potential adverse effects. Educational materials, including the MyJourney package, are seen as added value to promote a cultural shift. Trial registration number Not applicable

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