The miscarriage circle of care: towards leveraging online spaces for social support

Alqassim, Mona Y.; Kresnye, K. Cassie; Siek, Katie A.; Lee, John Y.K.; Wolters, Maria

doi:10.1186/s12905-022-01597-1

Cited by 11 publications

(4 citation statements)

References 85 publications

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“…It was also reported that women who have experienced a miscarriage rely on two main networks for support: formal (healthcare providers) and informal (friends, family, and work colleagues). The formal care network was seen as the most trusted source of information while the informal network was the main source of tangible support [ 29 ]. The latter represented the larger percentage of reported network of support by the participants in our study.…”

Section: Discussionmentioning

confidence: 99%

Navigating miscarriage in Jordan: understanding emotional responses and coping strategies

Taybeh,

Hamadneh,

Al-Alami

et al. 2023

BMC Pregnancy Childbirth

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Background Miscarriages account for 20% of clinically confirmed pregnancies and up to 50% of all pregnancies and is considered one of the most heartbreaking events experienced by women. The current study aimed to explore participants’ perceptions and practices and how they link with the negative emotions of miscarriage. Methods In this cross-sectional study a web-based questionnaire was used to gather data from 355 women living in Jordan who had experienced a previous miscarriage. The questionnaire consisted of four sections, including socio-demographic information, experience with miscarriage, emotions after the experience, and self-care practices. Participants were recruited through social media platforms from April to August 2022. Data were analyzed using SPSS, and descriptive statistics, chi-square test, and binomial regression were performed to examine the results. Results The results show that the majority of participants were in the age group of 22–34 years and a larger percentage of participants hold a Bachelor’s degree and were employed. All participants had experienced a previous miscarriage with 53.8% having one, 27.0% having two, and 19.2% having three or more miscarriages. In addition, most miscarriages did not have an explanation for their cause (77.5%), but vaginal bleeding was the most reported symptom (55.2%) and surgical management was predominant (48.7%). Most participants reported adequate emotional support from partners and family (63.7% and 62.3%, respectively). Almost half (48.7%) of the respondents felt like they had lost a child and those who did not receive any social support had a higher association with the same feeling (p = 0.005). Of the participating women, 40.3% decided to postpone another pregnancy while 20.0% planned for a subsequent pregnancy. The feeling of shame regarding the miscarriage was the main driver for women to get pregnant again (Odd ration [OR] 2.98; 95% confidence interval (CI) 1.31–6.82; p = 0.01). Conclusions The findings highlight the emotional impact of miscarriage on women and the need for proper support and self-care practices.

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Section: Discussionmentioning

confidence: 99%

Navigating miscarriage in Jordan: understanding emotional responses and coping strategies

Taybeh,

Hamadneh,

Al-Alami

et al. 2023

BMC Pregnancy Childbirth

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“…Previous research found that seeking both formal and informal help after a miscarriage reduces post-miscarriage health issues [ 30 , 31 ]. Studies by Séjourné et al and Alqassim et al reported significant improvement in health outcomes among women who received various forms of support and help following a miscarriage, including peer counseling, informal social support, and medical consultation [ 30 , 31 ]. The results of the present study were consistent with these findings, as seeking help after a miscarriage was associated with a 3.0% decrease in the prevalence of post-miscarriage health problems.…”

Section: Discussionmentioning

confidence: 99%

“…The results from the chisquare analysis indicated that seeking help was associated with education, place of residence, marital status, distance to a health facility, and access to funds for treatment. Previous research found that seeking both formal and informal help after a miscarriage reduces post-miscarriage health issues [30,31]. Studies by Se ´journe ´et al and Alqassim et al reported significant improvement in health outcomes among women who received various forms of support and help following a miscarriage, including peer counseling, informal social support, and medical consultation [30,31].…”

Section: Discussionmentioning

confidence: 99%

Help-seeking behavior among miscarrying women with and without post-miscarriage health problems in Ghana

Essien,

Chireh,

Essien

2023

PLOS Glob Public Health

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Understanding how frequently women seek assistance after experiencing a miscarriage could potentially help address unmet needs in managing post-miscarriage health problems (PMHP). However, most studies focus primarily on the causes and effects of PMHP and neglect the influence of help-seeking behavior on PMHP. This study examined help-seeking behavior among women who have experienced a miscarriage in Ghana, whether they sought help from healthcare professionals or not, and the impact it had on post-miscarriage health problems (PMHP). The study analyzed subsample data (N = 1,843) from the 2017 Ghana maternal health survey of miscarrying women aged 15–49 years who answered questions on help-seeking after a miscarriage from 900 clusters in ten administrative regions of Ghana, using a two-stage stratified cluster probability sampling design. The study used chi-square and modified Poisson with Generalized Estimating Equations (GEE) to examine help-seeking behavior among miscarrying women in Ghana and its impact on post-miscarriage health. The PMHP prevalence was 13.5% (95% CI: 12.0–15.1). Of the 1,843 women, 76.2% (95% CI: 74.3–78.2) sought help following a miscarriage, with 73.6% receiving help from healthcare professionals, 4.6% from non-healthcare professionals, and 21.8% receiving help from both groups. Help-seeking behavior was associated with factors such as education, place of residence, marital status, distance to a health facility, and money for treatment. Women who sought help had a 3.0% (Adjusted Prevalence Ratio, (aPR = 0.97, 95% Cl: 0.95–0.99) reduced prevalence of PMHP compared to those who did not seek help after controlling for other factors. Encouraging more women to seek help following a miscarriage could play a critical role in reducing PMHP, which can substantially improve their physical well-being. This finding highlights the need for more health education programs that address potential barriers in women at higher risk of miscarriage-related complications, including those aged ≥ 31 years, from seeking help after a miscarriage.

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“…An increasingly common format for providing psychosocial support and health information is through eHealth or digital health, with the number of users accessing the internet for health services more than doubling in the last decade in Australia (26). Research has shown that people affected by miscarriage often seek information and support online when faced with a lack of support or insufficient information at the time of miscarriage as it is anonymous, easy to access and fills a gap in support needs (27)(28)(29)(30). Our research group has found that individuals often struggle to find a singular reputable Australian based miscarriage website that is accessible, comprehensive, evidence-based and informed by miscarriage experts and healthcare providers (11,30,31).…”

Section: Introductionmentioning

confidence: 99%

Miscarriage Australia: the use of a human centered design approach to design and develop a website for those affected by miscarriage

Bilardi,

Webb,

Trieu

et al. 2023

Front. Public Health

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BackgroundPast research has shown that Australians affected by miscarriage want a website specific to both miscarriage and their local region that is accessible, comprehensive, evidence-based and informed by experts. The aim of this study was to design, develop and evaluate the Miscarriage Australia website using human centered design.MethodsA four stage human centered design approach was used to develop the Miscarriage Australia website which aimed to: (1) Understand the issue and why users need a website; (2) Define users’ specific needs; (3) Design solutions to meet those needs; and (4) Evaluate the design by testing with end users. Across the four stages, various types of data and data analysis were developed and utilized including interviews, desktop research, development of personas and tone of voice, followed by usability testing. Process and content were guided by designers, developers and an expert advisory committee of key stakeholders.ResultsAnalysis and synthesis of user research across Stages 1 and Stage 2 found 11 key themes pertaining to user’s miscarriage experiences and support needs. Using the themes, common experiences, goals, motivations and behaviors of users were identified and similar user types grouped and used to inform the development of two personas. Using the personas and user research findings, design elements (Stage 3) including the “tone of voice guidelines” were developed recommending the Miscarriage Australia website be calm, empathetic, hopeful and authoritative. The tone of voice guidelines guided branding and over 100 pages of content was informed by the research team and reviewed by a 13-member Expert Clinical Advisory Committee over two rounds to ensure it was evidence based and reflected best practice. Using a contextual inquiry approach, usability testing was undertaken with 8 end users to test a low fidelity mockup and high-fidelity prototype of the website. Overall, end users reported the website was highly acceptable in terms of the design, content, layout, language and terminology, describing it in line with the intended tone of voice. Users reported the website was easy to use and navigate and provided useful and appropriate content and resources. Minor areas for improvement included slight changes to specific images, improved links for navigating sections, and a title change to one section heading.ConclusionThe Miscarriage Australia website was successfully implemented and commended by users as meeting their needs. As a result of using human centered design, the Miscarriage Australia website provides an ideal template or blueprint on how to develop a successful and useful digital resource for users, particularly around sensitive women’s health issues.

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The miscarriage circle of care: towards leveraging online spaces for social support

Cited by 11 publications

References 85 publications

Navigating miscarriage in Jordan: understanding emotional responses and coping strategies

Navigating miscarriage in Jordan: understanding emotional responses and coping strategies

Help-seeking behavior among miscarrying women with and without post-miscarriage health problems in Ghana

Miscarriage Australia: the use of a human centered design approach to design and develop a website for those affected by miscarriage

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