The power of potential: Assisted reproduction and the counterstories of women who discontinue fertility treatment

Carson, Andrea; Webster, Fiona; Polzer, Jessica; Bamford, Sandra

doi:10.1016/j.socscimed.2021.114153

Cited by 13 publications

(19 citation statements)

References 51 publications

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“…Another potential negative effect of the TPCI is that its use could (or could seem to) promote overexploitation or catastrophic health expenditure (Dyer et al, 2013). Previous research suggests that as patients progress through treatment, they become more focused on the child wish and are more impaired in their ability to decide to stop treatment (Carson et al, 2021). In this respect, we would argue that the TPCI also aims to prevent decision-making at times of treatment when patient's decision-making ability may be impaired (Rauprich et al, 2011) and could lead to overtreatment.…”

Section: Discussionmentioning

confidence: 99%

“…Cumulative success rates therefore highlight that some patients may need to undergo more treatment than others, and that success is still not guaranteed even after multiple cycles of treatment. This approach has previously been suggested to support decision-making about whether and when to stop treatment and reduce the possibility of overtreatment (Carson et al, 2021;Rauprich et al, 2011). By signposting to appropriate support at the end of patients' (unsuccessful) treatment plan the TPCI empowers patients to access tools proven to ease this transition (Rowbottom et al, 2022).…”

Section: Discussionmentioning

confidence: 99%

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Qualitative evaluation of the acceptability and feasibility among healthcare professionals and patients of an ART multi-cycle treatment planning and continuation intervention prototype

2023

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STUDY QUESTION Is it possible to design an ART Treatment Planning and Continuation Intervention (TPCI) that is considered acceptable and feasible to patients and healthcare professionals (HCPs)? SUMMARY ANSWER HCPs and patients responded positively to the TPCI prototype and perceived it as an acceptable intervention to support patients to stay engaged with planned treatment, but some concerns were raised about the feasibility of using it in practice. WHAT IS KNOWN ALREADY People discontinue ART due to its psychological burden. Digital tools to support people undergoing ART are available but typically focus only on practical support rather than psychological support. Research about treatment continuation and multi-cycle planning indicates that cognitive factors (expectations, intentions, efficacy beliefs) should be targets of interventions designed to help patients engage with and continue treatment to meet their personal treatment plans and goals. However, it is not known whether this form of psychological support would be acceptable for HCPs and patients or feasible to implement in practice. STUDY DESIGN, SIZE, DURATION Qualitative cognitive interviews with HCPs and patients (May 2021). Patients were eligible if they had had a consultation to start a first/repeat stimulated IVF/ICSI cycle in the 8 weeks prior to recruitment, were aged 18 or older (upper age limit of 42 years for women) and fluent in English. Eligible HCPs were those employed by a fertility clinic who were responsible for delivering treatment planning consultations to patients. PARTICIPANTS/MATERIALS, SETTING, METHODS HCPs and patients were asked to think aloud while being exposed to and exploring the TPCI in one-to-one online cognitive interviews. The TPCI was designed to reduce treatment discontinuation via cognitive factors namely formation and maintenance of multi-cycle ART intentions and efficiency of decision-making during treatment, and continuation of treatment after an unsuccessful cycle (when recommended). To impact cognitive factors the TPCI comprised of two components: an expectation management and reasoning checklist for HCPs to use during planning consultations (TPCI Checklist) and a multi-feature cognitive support mobile application (TPCI App) for patients to use prior to and during treatment. After participants thought aloud while being exposed to the TPCI prototype (both components) they were asked open questions concerning their perceptions of the core components and activities on eight acceptability dimensions (e.g. acceptability, demand, integration). Interviews lasted between 40 and 90 min, were recorded, transcribed verbatim and analysed using thematic analysis. MAIN RESULTS AND THE ROLE OF CHANCE Thirteen HCPs and 13 patients participated in 25 online interviews. Thematic analysis using inductive and deductive coding generated 180 codes, grouped into 22 categories and synthesized into 9 themes. The themes showed that HCPs and patients provided positive feedback about the TPCI, perceiving it as a needed, acceptable and potentially effective way to forewarn patients of the possible need for multiple cycles, to provide patients with a sense of patient–clinic collaboration and support, and to bolster treatment intentions, all of which were perceived to contribute to reduced treatment discontinuation. HCPs perceived implementation of the TPCI Checklist to be challenging in its current length due to time pressures and clinic workload. Suggestions for enhancing the TPCI Checklist and App were provided, but none required critical changes to its core components or activities. LIMITATIONS, REASONS FOR CAUTION All patients were women recruited from social media websites, mainly associated with patient support groups, who may be highly committed to their fertility treatment. HCPs were predominantly from private fertility clinics. WIDER IMPLICATIONS OF THE FINDINGS The findings suggest there is demand for digital support geared towards motivational aspects of undergoing ART. The TPCI is an acceptable support tool to meet that need according to HCPs responsible for delivering planning consultations and patients undergoing fertility treatment. Future research is needed to develop the prototype and examine the feasibility of implementation of the TPCI in clinics. STUDY FUNDING/COMPETING INTEREST(S) This research was financially supported by Merck Serono Ltd, an affiliate of Merck KGaA, Darmstadt, Germany. ‘Merck KGaA, Darmstadt, Germany reviewed the manuscript for medical accuracy only before journal submission. The authors are fully responsible for the content of this manuscript, and the views and opinions described in the publication reflect solely those of the authors’ J.B. reports personal fees from Merck KGaA, Darmstadt, Germany, Merck AB an affiliate of Merck KGaA, Darmstadt Germany, Theramex, Organon JJC, Ferring Pharmaceuticals A/S, research grant from Merck Serono Ltd, grants from ESHRE outside the submitted work and that she is co-developer of Fertility Quality of Life (FertiQoL) and MediEmo app. S.G. reports consultancy fees from TMRW Life Sciences and Ferring Pharmaceuticals A/S, speaker fees from Access Fertility, SONA-Pharm LLC, Meridiano Congress International and Gedeon Richter. C.H. declares no conflicts of interest. TRIAL REGISTRATION NUMBER N/A.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Qualitative evaluation of the acceptability and feasibility among healthcare professionals and patients of an ART multi-cycle treatment planning and continuation intervention prototype

2023

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“…The latter two sources of stress in particular often cause women to stop treatment ( Gameiro et al, 2012 ). However, stopping treatment can also be difficult for women who feel subject to pronatalist cultural and normative expectations regarding motherhood ( Carson et al, 2021 ).…”

Section: Research Gaps In Recent Studies On Making Families Through Artmentioning

confidence: 99%

Families formed through assisted reproductive technology: Causes, experiences, and consequences in an international context

Kuhnt¹,

Passet-Wittig²

2022

Reproductive Biomedicine & Society Online

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“…Such care was proved to be feasible, valued by patients and effective in sustaining their hope and quality of life during follow‐up periods 19,20 . However, evidence suggests that this is still not a common practice in fertility care 21,22 . One barrier may be that discussing possible adverse fertility outcomes is challenging for patients and HCPs alike because this triggers anxiety 23,24 and can reduce motivation for treatment 24,25 .…”

Section: Introductionmentioning

confidence: 99%

“… 19 , 20 However, evidence suggests that this is still not a common practice in fertility care. 21 , 22 One barrier may be that discussing possible adverse fertility outcomes is challenging for patients and HCPs alike because this triggers anxiety 23 , 24 and can reduce motivation for treatment. 24 , 25 However, the reality is that little is known about what are patients' and HCPs' views and preferences about preventive psychosocial care.…”

Section: Introductionmentioning

confidence: 99%

Feasibility and acceptability of psychosocial care for unsuccessful fertility treatment

Sousa-Leite

Fernandes

Reis

et al. 2022

Health Expectations

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Introduction: Many people undergo fertility treatment to have biological children, but around four in ten patients complete all treatment cycles without having the children they desire. This triggers intense grief from which patients report taking on average 2 years to recover. Fertility guidelines and regulators stress the need to support patients through this process, but there is a scarcity of evaluated interventions to this end and evidence about when and how to offer care is lacking. This study explored patients' and healthcare professionals' (HCPs) experiences of and views about provision of psychosocial care (to patients facing unsuccessful fertility treatment, i.e., care provided by a mental health professional to address the emotional, cognitive, behavioural, relational and social needs that patients have at this stage of treatment).Methods: Five qualitative online focus groups were conducted with Portuguese participants: three with patients waiting to initiate or undergoing their last cycle of in vitro fertilization/intracytoplasmic sperm injection or having completed it within the last 2 months without achieving a pregnancy and two with HCPs working at fertility clinics. Focus groups were recorded and transcribed verbatim, and data were analysed with Framework Analysis.Results: Thirteen patients and nine HCPs participated. Analysis resulted in 1293 codes, systematically organized into 13 categories, 4 themes and 1 metatheme. The latter showed high consensus about the need for psychosocial care for unsuccessful treatment, but perceived challenges in its implementation. Themes reflected (1) consensual demand for psychosocial care at all stages of treatment but particularly at the end, (2) high perceived acceptability of integrating preventive care initiated during treatment with early psychosocial care only for those patients who experience unsuccessful treatment, (3) perceived challenges of implementing

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The power of potential: Assisted reproduction and the counterstories of women who discontinue fertility treatment

Cited by 13 publications

References 51 publications

Qualitative evaluation of the acceptability and feasibility among healthcare professionals and patients of an ART multi-cycle treatment planning and continuation intervention prototype

Qualitative evaluation of the acceptability and feasibility among healthcare professionals and patients of an ART multi-cycle treatment planning and continuation intervention prototype

Families formed through assisted reproductive technology: Causes, experiences, and consequences in an international context

Feasibility and acceptability of psychosocial care for unsuccessful fertility treatment

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