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"This just felt to me like the right thing to do": Decision-Making Experiences of Parents of Young Children
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... First, the MFK classification above did not offer a parent consent option, which was misaligned with COPPA requirements [24,25]. Second, different from how parents can make autonomous, informed decisions on their children's well-being [54], this parent above complained about the lack of control over their kids' data privacy, showing a disconnect between policy and practical parental needs. ...
... On the other hand, a singular safety design needs to acknowledge the influence of multiple stakeholders. Prior DIS researchers have examined parental use of AI-assisted or technology-based decision-making [52,54] or how children themselves use chatbots [72] to enhance safety. Our findings show that while the YouTube platform offers MFK classification as an important child safety function, there's a noticeable gap in the willingness and ability of consumers and creators to participate in MFK classification. ...
Protecting children’s online privacy is paramount. Online platforms seek to enhance child privacy protection by implementing new classification systems into their content moderation practices. One prominent example is YouTube’s “made for kids” (MFK) classification. However, traditional content moderation focuses on managing content rather than users’ privacy; little is known about how users experience these classification systems. Thematically analyzing online discussions about YouTube’s MFK classification system, we present a case study on content creators’ and consumers’ experiences. We found that creators and consumers perceived MFK classification as misaligned with their actual practices, creators encountered unexpected consequences of practicing labeling, and creators and consumers identified MFK classification’s intersections with other platform designs. Our findings shed light on an interwoven network of multiple classification systems that extends the original focus on child privacy to encompass broader child safety issues; these insights contribute to the design principles of child-centered safety within this intricate network.
... Finally, our results indicate that parents often give preference to their situation-based intuition over the above mentioned factors when deciding on a technology non-/use position. Intuitive parenting [20,62] that is based on affect, informal cues, and reflection on past experiences -three types of factors that also seemed to influence the parents in our study when they were deciding whether or not to use mobile devices -has been purported to benefit child development [20] and has been found to be relied upon by parents, even in regard to decisions that affect a child's health [57]. However, parents reported feeling guilty when their intuition-based decisions were not in alignment with recommendations from extended family members or were not appreciated by their partners. ...
... However, parents reported feeling guilty when their intuition-based decisions were not in alignment with recommendations from extended family members or were not appreciated by their partners. We believe these negative feeling can be troubling, because one's partner and extended family often offer recommendations and opinions, and they are informed about one's particular context and cultural beliefs, something that is important to parents for their self-evaluation of whether or not they are a "good parent" [28,36,57,78,105]. ...
Parents' use of mobile devices (tablets and mobile phones) while caring for children is considered to be beneficial, but also problematic. In this study, we aimed to understand parents' technology non-/use practices around infants and toddlers in the domestic setting and to survey parents' opinions about their partners' practices. To this end, we collected data from parents from seventeen families, using diaries and interviews. We found that as parents grapple with multiple and often conflicting motivations and needs, they adopt or shift among four non-/use positions. Our findings also show that adult family members believe that their partner's use is more problematic than theirs and that the other person does not abide by mutually decided norms. Furthermore, parents often have conflicting opinions about how one should shape one's technological practices around children. Based on our findings, we propose new design directions for technology that can support caregivers in the domestic setting.
... Restrepo et al, 2022;Menheere et al, 2020;Lockton et al 2022) commonly explores the use of uncommon or novel metaphors in interaction design (indeed including another Peircean perspective, on indexicality(Offenhuber, 2020). My own New Metaphors toolkit, created with Devika Singh, Saloni Sabnis, and Michelle Chou(Lockton et al, 2019b), has been applied by others in contexts such as robots (Alves-Oliveira et al, 2021), moderating online communities(Seering et al, 2022), health decisions(Kirchner et al, 2020), and augmentative and alternative communication(Valencia et al, 2021).Dudani (2021) argues that within systemic design, metaphors can do the work of associating, embodying, materialising, diversifying, and probing, enabling ideas and people (and their experiences and beliefs) to be shared and discussed, both as part of research and in the (re)design of systems. ...
Gregory Bateson's "Syllogism in Grass" expresses a form of abductive reasoning which can be used to generate and discuss metaphors, particularly in living systems and humans' interrelations with them. This paper explores tentatively the possibilities of the Syllogism in Grass in a systemic design context, as a creative method of provocation and reframing.
... A recent systematic review [22] and empirical studies [23,24] on how parents find, use, and evaluate consumer health information from the internet for their children reported that parents worldwide are heavy users across diverse circumstances. Parents find the information themselves or reach out to their social circle (or entourage) for tailored advice, emotional support, and culturally relevant parenting information [25]. A 2015 survey, conducted in Quebec, of a representative sample of 23,693 parents of preschool children showed that only 1.5% of parents do not know where to find information on the internet about children, either directly or mediated by someone else [26] as a proxy-"seeking information in a nonprofessional or informal capacity on behalf (or because) of others without necessarily being asked to do so [27]." ...
Background
One of the largest groups of consumers who seek health information on the internet are parents of young children, as well as people in their social circle. The concept of proxy seeking (on behalf of others) has been explored in the literature, yet little is known about the outcomes.
Objective
The main aim of this study was to describe consumer health information outcomes reported by proxy seekers using a parenting website.
Methods
We conducted a 2-year quantitative observational study. Participants were parents of 0- to 8-year-old children and members of their entourage in Canada who had accessed Naître et Grandir through the website or through a weekly newsletter. For each Naître et Grandir webpage, participants’ perceptions regarding the outcomes of seeking and using specific webpages were gathered using a content-validated Information Assessment Method questionnaire. We compared the outcomes reported by parents with those reported by members of their entourage after consulting a parenting information website and explored if the method of accessing the information by the proxy seekers (website or weekly newsletter) changed the outcomes reported. For key primary survey items, the chi-square test was conducted, and differences in relative frequencies of responses were computed along with confidence intervals.
Results
A total of 51,325 completed questionnaires were included in the analysis, pertaining to 1079 Naître et Grandir webpages (mean 48; range 1-637). Compared to parents, individuals in the entourage are more likely to report using the information in discussion with others (mean difference 0.166, 95% CI 0.155-0.176). Parents, on the other hand, were more likely than the entourage to report using the information to better understand (mean difference 0.084, 95% CI 0.073-0.094), to decide to do something (mean difference 0.156, 95% CI 0.146-0.166), or to do something in a different manner (mean difference 0.052, 95% CI 0.042-0.061). In addition, results suggest that the differences in perceived benefits of parenting information by the entourage depend on how they access the information. Respondents who were actively seeking the information (through the website) were more likely to report that the information would help them be less worried (mean difference 0.047; 95% CI 0.024-0.069), handle a problem (mean difference 0.083; 95% CI 0.062-0.104), and decide what to do with someone else (mean difference 0.040, 95% CI 0.020-0.058). Respondents who passively acquired the information (through the newsletter) were more likely to report that the information would help improve the health or well-being of a child (mean difference 0.090; 95% CI 0.067-0.112).
Conclusions
By better understanding how consumers and their entourages use information, information providers can adapt information to meet both individual and group needs, and health care practitioners can target patients’ entourages with web-based health information resources for dissemination and use.
... Nevertheless, if these limitations are borne in mind, metaphors can be used as a kind of disruptive improvisation technique for helping us think differently and reframe issues. The New Metaphors card deck ( Figure 1) which my students and I created (exhibited at RSD8) is one approach, which has been applied to areas including robots (Alves-Oliveira et al, 2021), health decisions (Kirchner et al, 2020), and augmentative and alternative communication (Valencia et al, 2021), but there are many others (e.g. Hurtienne et al (2020) (2018)), working at various degrees of 'system-ness'. ...
Editorial
The RSD10 symposium was held at the faculty of Industrial Design Engineering, Delft University of Technology, 2nd-6th November 2021. After a successful (yet unforeseen) online version of the RSD 9 symposium, RSD10 was designed as a hybrid conference.
How can we facilitate the physical encounters that inspire our work, yet ensure a global easy access for joining the conference, while dealing well with the ongoing uncertainties of the global COVID pandemic at the same time? In hindsight, the theme of RSD10 could not have been a better fit with the conditions in which it had to be organized: “Playing with Tensions: Embracing new complexity, collaboration and contexts in systemic design”.
Playing with Tensions
Complex systems do not lend themselves for simplification. Systemic designers have no choice but to embrace complexity, and in doing so, embrace opposing concepts and the resulting paradoxes. It is at the interplay of these ideas that they find the most fruitful regions of exploration. The main conference theme explored design and systems thinking practices as mediators to deal fruitfully with tensions. Our human tendency is to relieve the tensions, and in design, to resolve the so-called “pain points.” But tensions reveal paradoxes, the sites of connection, breaks in scale, emergence of complexity. Can we embrace the tension and paradoxes as valuable social feedback in our path to just and sustainable futures?
The symposium took off with two days of well-attended workshops on campus and online. One could sense tensions through embodied experiences in one of the workshops, while reframing systemic paradoxes as fruitful design starting points in another. In the tradition of RSD, a Gigamap Exhibition was organized. The exhibition showcased mind-blowing visuals that reveal the tension between our own desire for order and structure and our desire to capture real-life dynamics and contradicting perspectives. Many of us enjoyed the high quality and diversity in the keynotes throughout the symposium. As chair of the SDA, Dr. Silvia Barbero opened in her keynote with a reflection on the start and impressive evolution of the Relating Systems thinking and Design symposia. Prof.Dr. Derk Loorbach showed us how transition research conceptualizes shifts in societal systems and gave us a glimpse into their efforts to foster desired ones. Prof.Dr. Elisa Giaccardi took us along a journey of technologically mediated agency. She advocated for a radical shift in design to deal with this complex web of relationships between things and humans. Indy Johar talked about the need to reimagine our relationship with the world as one based on fundamental interdependence. And finally, Prof.Dr. Klaus Krippendorf systematically unpacked the systemic consequences of design decisions. Together these keynote speakers provided important insights into the role of design in embracing systemic complexity, from the micro-scale of our material contexts to the macro-scale of globally connected societies. And of course, RSD10 would not be an RSD symposium if it did not offer a place to connect around practical case examples and discuss how knowledge could improve practice and how practice could inform and guide research.
Proceedings
RSD10 has been the first symposium in which contributors were asked to submit a full paper: either a short one that presented work-in-progress, or a long one presenting finished work. With the help of an excellent list of reviewers, this set-up allowed us to shape a symposium that offered stage for high-quality research, providing a platform for critical and fruitful conversations. Short papers were combined around a research approach or methodology, aiming for peer-learning on how to increase the rigour and relevance of our studies. Long papers were combined around commonalities in the phenomena under study, offering state-of-the-art research. The moderation of engaged and knowledgeable chairs and audience lifted the quality of our discussions.
In total, these proceedings cover 33 short papers and 19 long papers from all over the world. From India to the United States, and Australia to Italy. In the table of contents, each paper is represented under its RSD 10 symposium track as well as a list of authors ordered alphabetically. The RSD10 proceedings capture the great variety of high-quality papers yet is limited to only textual contributions. We invite any reader to visit the rsdsymposium.org website to browse through slide-decks, video recordings, drawing notes and the exhibition to get the full experience of RSD10 and witness how great minds and insights have been beautifully captured!
Word of thanks
Let us close off with a word of thanks to our dean and colleagues for supporting us in hosting this conference, the SDA for their trust and guidance, Dr. Peter Jones and Dr. Silvia Barbero for being part of the RSD10 scientific committee, but especially everyone who contributed to the content of the symposium: workshop moderators, presenters, and anyone who participated in the RSD 10 conversation. It is only in this complex web of (friction-full) relationships that we can further our knowledge on systemic design: thanks for being part of it!
Dr. JC Diehl, Dr. Nynke Tromp, and Dr. Mieke van der Bijl-Brouwer
Editors RSD10
... Nevertheless, if these limitations are borne in mind, metaphors can be used as a kind of disruptive improvisation technique for helping us think differently and reframe issues. The New Metaphors card deck ( Figure 1) which my students and I created (exhibited at RSD8) is one approach, which has been applied to areas including robots (Alves-Oliveira et al, 2021), health decisions (Kirchner et al, 2020), and augmentative and alternative communication (Valencia et al, 2021), but there are many others (e.g. Hurtienne et al (2020) (2018)), working at various degrees of 'system-ness'. ...
A variety of metaphors are commonly used in systemic design to make abstract concepts more concrete, externalised, and engageable-with, to enable constructs to be discussed and dealt with, and to generate new ideas. This practice builds on a long history of metaphor use in systems theory and cybernetics, and can involve a focus on language, drawing and diagrams, or physical modelling, among other approaches. However, the implications of common metaphors used in systemic design have perhaps not been elaborated and examined. This short paper proposes a discussion and activity over the course of RSD10 in which conference participants contribute and reflect on metaphors in use, tacitly or otherwise, and consider the possibilities offered by alternatives.
... Clark presented two experimental applications of social values theory to understand parent decision making structures, finding that many parents make decisions that pose the least risk to inconvenience their child [17]. Parents also rely extensively on their intuition and support networks in making decisions about their child's health and well-being, but turn to external resources when they are uncertain, perceive a situation to be high-stakes, or encounter a new situation [41], all circumstances that families experienced as consequences of the COVID-19 pandemic. Family dynamics also shift around increased technology and digital media use: Schiano et al. found that technology addiction was a primary concern among parents [59]. ...
The COVID-19 pandemic upended the lives of families with young children as school closures and social distancing requirements left caregivers struggling to facilitate educational experiences, maintain social connections, and ensure financial stability. Considering families' increased reliance on technology to survive, this research documents parents' lived experiences adapting to technology's outsized role alongside other shifts in family life associated with the COVID-19 pandemic. In this paper, we describe a 10-week study with 30 enrolled families with children aged 3 to 13 in the United States using the asynchronous remote communities (ARC) methodology to 1) understand the benefits and challenges faced by families as they adapted technology at home to navigate the pandemic, and 2) to ideate improvements to those experiences through co-design. We found that amidst gaps in infrastructural support from schools, workplaces, and communities, parents experienced deep anxiety and took on new roles, including tech support, school administrator, and curator of meaningful activities for their children. As parents shared bold and creative technology-based solutions for improving family well-being, schooling experiences, social life, and beyond, they demonstrated their capacity to contribute to new models of learning and family life. Our findings are a call to action for CSCW researchers, designers, and family-focused practitioners to work with learning communities that incorporate parent, teacher, and technology experiences in their academic and community planning.
Parenting practices have a profound effect on children's well-being and are a core target of several psychological interventions for child mental health. However, there is only limited understanding in HCI so far about how to design socio-technical systems that could support positive shifts in parent-child social practices in situ. This paper focuses on parental socialisation of emotion as an exemplar context in which to explore this question. We present a two-step study, combining theory-driven identification of plausible design directions with co-design workshops with 22 parents of children aged 6-10 years. Our data suggest the potential for technology-enabled systems that aim to facilitate positive changes in parent-child social practices in situ, and highlight a number of plausible design directions to explore in future work.
Objectives
Parents of young children have unique informational needs and it has been demonstrated that information-seeking behaviors influence health outcomes. Due to social media’s popularity, understanding parents’ use of social media may assist in disseminating accurate parenting information and in developing targeted interventions. Thus, we aimed to identify and describe the existing literature of parental use of social media for parenting in the U.S.
Methods
After searching nine databases with two separate Boolean phrases, identified articles were reviewed. Inclusion and exclusion criteria were applied, resulting in 12 articles published between January 2004 and May 2018 that related to parental use of social media for parenting or infant health in the U.S. Data from relevant articles were then extracted and analyzed.
Results
Facebook was the most frequent social media format. Parental utilization of social media varied by race/ethnicity and region. Studies primarily focused on women and a range of article topics were identified, the most common being infant feeding practices. Finally, two themes emerged: (1) parental support via social media and (2) effectiveness of using social media for health communication targeting parents.
Conclusions for Practice
Social media provided support for parents and was effective for communicating health information; thus, public health organizations should include social media in their efforts to promote infant and child health. More research is needed to further identify demographic differences in social media use among parents.
Metaphors are important at multiple levels within design and society—from the specifics of interfaces, to wider societal imaginaries of technology and progress. Exploring alternative metaphors can be generative in creative processes, and for reframing problems strategically. In this pictorial we introduce an inspiration card workshop method using juxtaposition (or bisociation) to enable participants to explore novel metaphors for hard-to-visualise phenomena, drawing on a provisional set of inspiration material. We demonstrate the process through illustrating creative workshops in France, Portugal, Chile, and the USA, and reflect on benefits, limitations, and potential development of this format for use within interaction design.
Background
Digital media are increasingly abundant and used to seek health information, however, to date very little is known on parents’ seeking behavior in the context of child’s health and development outside English-speaking and Scandinavian countries. By investigating the prevalence of, and reasons for use, we studied parents’ perception of the Internet as a resource for improving their health-related knowledge.
Methods
The survey was conducted in a random sample of 2573 Swiss-German parents with at least one child aged less-than 2 years old. Parents received a mailed invitation to fill in an online questionnaire. Two reminders were sent, the later with a paper questionnaire attached. The questionnaire included questions on use of print, digital, and personal information sources, as well as different information situations: general health and development or illness. We ran descriptive analyses on information seeking behavior, type of digital media used, reasons of use. We also conducted regression analyses to explore factors associated with parental perceptions with regard to the Internet’s utility as a source for health information.
Results
A total of 769 questionnaires were returned (response rate 30%). Nearly all parents (91%) used digital media for seeking information on their child’s health and development, and the main reason for use was indicated as being the 24/7 availability of information. Search engines (55%) and webpages for parents (47%) were by far the most frequently used digital media. Generally, the internet is perceived as a good resource, especially by fathers (OR = 1.80, 95% CI: 1.03–3.16). However, a large percentage of parents are skeptical about the correctness of online info (91%), are unsure about their interpretive understanding, and ask for guidance from their pediatrician (67%).
Conclusions
The Internet has become a highly frequented source of information for Swiss-German parents on children’s health with largely valuable perceptions of its utility. Digital media are used in addition to and not in replacement of print media and personal contacts. Increasing parental guidance by health and public health professionals could improve parental digital health utilization and empower parents in the new role they adopt.
Electronic supplementary material
The online version of this article (10.1186/s12889-019-6524-8) contains supplementary material, which is available to authorized users.
Aim
To explore parents' experiences on parental involvement in decision‐making about their child's health care at the hospital and to identify how health professionals can improve parental involvement.
Design
An explorative descriptive qualitative study within a constructivist research paradigm.
Methods
Individual semistructured interviews were conducted with a purposive sample of 12 parents. Qualitative content analysis was performed.
Results
This study gives unique insight into how parental involvement in children's healthcare decisions influence parents' ability to cope with the parental role at the hospital. The results showed that parents' competence and perceived influence and control over their child's health care appeared to affect how they mastered their role of involvement in decision‐making. Individually tailored and respectful facilitation of parental involvement in these decisions by health professionals seemed to improve parents' influence, control and ability to cope with the parental role. Nurses should thus strengthen parents' sense of coherence enhancing the quality of health care.
Even when heterosexual couples have relatively egalitarian relationships prior to children, once children are born, mothers tend to take on more and more of the care tasks associated with the home and family. Mothers themselves often report an unwillingness to leave their infants in the care of others, even co-parents, for fear that the caregiver may not be able to read or intuit the needs of their infant. The aim of this paper is to examine the sociomaterial and embodied process by which mothers deliberately come to develop intuition – in this case around their infant's elimination needs. Using the experiences of practitioners of both the early infant toileting practice “elimination communication” and the equivalent Chinese practice of ba niao, I argue intuition can be deliberately cultivated through parenting practices that promote embodied and responsive connection. I describe how mothers and (a few) others “learn to be affected” (Latour, 2004b) by their infants preverbal communication, and conclude that the practice offers a way for other committed caregivers to develop a form of “maternal” intuition.
While technologies exist that are designed for parents to monitor their toddlers and school-age children, the actual structure and underlying mechanisms of parents information needs have received only limited attention. A systematic understanding of these core components is crucial for designing appropriate solutions and reducing barriers to using this type of technology. Based on accumulated findings from a three-phase study, this paper (1) describes the structure of information that parents seek about their children, (2) explores parents' underlying motivations for seeking this information, (3) presents a classification of major uses of this information, and, (4) through a set of design recommendations, discusses the role that ubiquitous technology can play in addressing information needs and current obstacles to technologically mediated solutions.
Digital self-tracking technologies offer many potential benefits over self-tracking with paper notebooks. However, they are often too rigid to support people's practical and emotional needs in everyday settings. To inform the design of more flexible self-tracking tools, we examine bullet journaling: an analogue and customisable approach for logging and reflecting on everyday life. Analysing a corpus of paper bullet journal photos and related conversations on Instagram, we found that individuals extended and adapted bullet journaling systems to their changing practical and emotional needs through: (1) creating and combining personally meaningful visualisations of different types of trackers, such as habit, mood, and symptom trackers; (2) engaging in mindful reflective thinking through design practices and self-reflective strategies; and (3) posting photos of paper journals online to become part of a self-tracking culture of sharing and learning. We outline two interrelated design directions for flexible and mindful self-tracking: digitally extending analogue self-tracking and supporting digital self-tracking as a mindful design practice.
Objective:
Guided by the Uses and Gratifications approach, to examine mothers' use and preference of e-Health media, and associated contextual factors.
Design and sample:
Cross-sectional survey of 165 mothers (White, African-American, and Hispanic) from a stratified random sample.
Measures:
Use of online media about mother-baby care; favorite websites about motherhood and best-liked features of Web sites; channel preferences (Web site, postal mail, text) for receiving three types of health information; and contextual factors, e.g., education.
Results:
Media use ranged from 96% for health information searches about babies to 46% for YouTube viewing about mother-baby topics. Contextual factors, such as education, were associated with media use. Babycenter was the most frequently reported favorite Web site and rich, relevant information was the best-liked feature. Across three health topics (weight, stress/depression, parenting) mothers preferred receiving information by Web site, followed by postal mail and least by text messaging (χ(2) statistics, p < .001). Stress and race/ethnicity were among factors associated with preferences.
Conclusions:
Mothers widely used e-Health related media, but use was associated with contextual factors. In public health efforts to reach new mothers, partnering with mother-favored Web sites, focusing on audience-relevant media, and adopting attributes of successful sites are recommended strategies.
Desirable outcomes such as health are tightly linked to behaviors, thus inspiring research on technologies that support people in changing those behaviors. Many behavior-change technologies are designed by HCI experts but this approach can make it difficult to personalize support to each user's unique goals and needs. This paper reports on the iterative design of two complementary support strategies for helping users create their own personalized behavior-change plans via self-experimentation: One emphasized the use of interactive instructional materials, and the other additionally introduced context-aware computing to enable user creation of "just in time" home-based interventions. In a formative trial with 27 users, we compared these two approaches to an unstructured sleep education control. Results suggest great promise in both strategies and provide insights on how to develop personalized behavior-change technologies.
Background:
Decision aids are interventions that support patients by making their decisions explicit, providing information about options and associated benefits/harms, and helping clarify congruence between decisions and personal values.
Objectives:
To assess the effects of decision aids in people facing treatment or screening decisions.
Search methods:
Updated search (2012 to April 2015) in CENTRAL; MEDLINE; Embase; PsycINFO; and grey literature; includes CINAHL to September 2008.
Selection criteria:
We included published randomized controlled trials comparing decision aids to usual care and/or alternative interventions. For this update, we excluded studies comparing detailed versus simple decision aids.
Data collection and analysis:
Two reviewers independently screened citations for inclusion, extracted data, and assessed risk of bias. Primary outcomes, based on the International Patient Decision Aid Standards (IPDAS), were attributes related to the choice made and the decision-making process.Secondary outcomes were behavioural, health, and health system effects.We pooled results using mean differences (MDs) and risk ratios (RRs), applying a random-effects model. We conducted a subgroup analysis of studies that used the patient decision aid to prepare for the consultation and of those that used it in the consultation. We used GRADE to assess the strength of the evidence.
Main results:
We included 105 studies involving 31,043 participants. This update added 18 studies and removed 28 previously included studies comparing detailed versus simple decision aids. During the 'Risk of bias' assessment, we rated two items (selective reporting and blinding of participants/personnel) as mostly unclear due to inadequate reporting. Twelve of 105 studies were at high risk of bias.With regard to the attributes of the choice made, decision aids increased participants' knowledge (MD 13.27/100; 95% confidence interval (CI) 11.32 to 15.23; 52 studies; N = 13,316; high-quality evidence), accuracy of risk perceptions (RR 2.10; 95% CI 1.66 to 2.66; 17 studies; N = 5096; moderate-quality evidence), and congruency between informed values and care choices (RR 2.06; 95% CI 1.46 to 2.91; 10 studies; N = 4626; low-quality evidence) compared to usual care.Regarding attributes related to the decision-making process and compared to usual care, decision aids decreased decisional conflict related to feeling uninformed (MD -9.28/100; 95% CI -12.20 to -6.36; 27 studies; N = 5707; high-quality evidence), indecision about personal values (MD -8.81/100; 95% CI -11.99 to -5.63; 23 studies; N = 5068; high-quality evidence), and the proportion of people who were passive in decision making (RR 0.68; 95% CI 0.55 to 0.83; 16 studies; N = 3180; moderate-quality evidence).Decision aids reduced the proportion of undecided participants and appeared to have a positive effect on patient-clinician communication. Moreover, those exposed to a decision aid were either equally or more satisfied with their decision, the decision-making process, and/or the preparation for decision making compared to usual care.Decision aids also reduced the number of people choosing major elective invasive surgery in favour of more conservative options (RR 0.86; 95% CI 0.75 to 1.00; 18 studies; N = 3844), but this reduction reached statistical significance only after removing the study on prophylactic mastectomy for breast cancer gene carriers (RR 0.84; 95% CI 0.73 to 0.97; 17 studies; N = 3108). Compared to usual care, decision aids reduced the number of people choosing prostate-specific antigen screening (RR 0.88; 95% CI 0.80 to 0.98; 10 studies; N = 3996) and increased those choosing to start new medications for diabetes (RR 1.65; 95% CI 1.06 to 2.56; 4 studies; N = 447). For other testing and screening choices, mostly there were no differences between decision aids and usual care.The median effect of decision aids on length of consultation was 2.6 minutes longer (24 versus 21; 7.5% increase). The costs of the decision aid group were lower in two studies and similar to usual care in four studies. People receiving decision aids do not appear to differ from those receiving usual care in terms of anxiety, general health outcomes, and condition-specific health outcomes. Studies did not report adverse events associated with the use of decision aids.In subgroup analysis, we compared results for decision aids used in preparation for the consultation versus during the consultation, finding similar improvements in pooled analysis for knowledge and accurate risk perception. For other outcomes, we could not conduct formal subgroup analyses because there were too few studies in each subgroup.
Authors' conclusions:
Compared to usual care across a wide variety of decision contexts, people exposed to decision aids feel more knowledgeable, better informed, and clearer about their values, and they probably have a more active role in decision making and more accurate risk perceptions. There is growing evidence that decision aids may improve values-congruent choices. There are no adverse effects on health outcomes or satisfaction. New for this updated is evidence indicating improved knowledge and accurate risk perceptions when decision aids are used either within or in preparation for the consultation. Further research is needed on the effects on adherence with the chosen option, cost-effectiveness, and use with lower literacy populations.