Do personal stories make patient decision aids more effective? A critical review of theory and evidence

Abstract

BackgroundPatient decision aids support people to make informed decisions between healthcare options. Personal stories provide illustrative examples of others’ experiences and are seen as a useful way to communicate information about health and illness. Evidence indicates that providing information within personal stories affects the judgments and values people have, and the choices they make, differentially from facts presented in non-narrative prose. It is unclear if including narrative communications within patient decision aids enhances their effectiveness to support people to make informed decisions.MethodsA survey of primary empirical research employing a systematic review method investigated the effect of patient decision aids with or without a personal story on people’s healthcare judgements and decisions. Searches were carried out between 2005-2012 of electronic databases (Medline, PsycINFO), and reference lists of identified articles, review articles, and key authors. A narrative analysis described and synthesised findings.ResultsOf 734 citations identified, 11 were included describing 13 studies. All studies found participants’ judgments and/or decisions differed depending on whether or not their decision aid included a patient story. Knowledge was equally facilitated when the decision aids with and without stories had similar information content. Story-enhanced aids may help people recall information over time and/or their motivation to engage with health information. Personal stories affected both “system 1” (e.g., less counterfactual reasoning, more emotional reactions and perceptions) and “system 2” (e.g., more perceived deliberative decision making, more stable evaluations over time) decision-making strategies. Findings exploring associations with narrative communications, decision quality measures, and different levels of literacy and numeracy were mixed. The pattern of findings was similar for both experimental and real-world studies.ConclusionsThere is insufficient evidence that adding personal stories to decision aids increases their effectiveness to support people’s informed decision making. More rigorous research is required to elicit evidence about the type of personal story that a) encourages people to make more reasoned decisions, b) discourages people from making choices based on another’s values, and c) motivates people equally to engage with healthcare resources.

Expanded carrier screening: what determines intended participation and can this be influenced by message framing and narrative information?

“…Because the amount and type of narrative information varies greatly between studies, it is still difficult to determine which aspects of narrative information have the most influence on emotions and in what way narrative information is related to intended participation. 21 Because the effect of narrative information on intended participation is unclear, we do not expect that the effect of including narrative information will be strong enough to significantly change intended participation in ECS. However, because of the possible influence of narrative information on emotions, we expect that adding narrative information will increase the emotional impact of the information about ECS, leading to more perceived severity of having a child with a serious genetic disease.…”

“…It is therefore necessary to understand if adding narrative information can also change intention to participate in ECS. Several systematic reviews have shown that adding narrative information influences decision-making, by making decisions more experiential-automatic (emotional) than analytic-deliberative (rational) 20,21 although the possibility to measure emotional and rational decisions independently can be discussed because of their interrelatedness. Because the amount and type of narrative information varies greatly between studies, it is still difficult to determine which aspects of narrative information have the most influence on emotions and in what way narrative information is related to intended participation.…”

Development and evaluation of a patient decision aid for young people and parents considering fixed orthodontic appliances

“…Patient decision aids are designed using decision science to guide patients through the decision making process by providing accurate information about the condition and treatment options, structured to encourage patients to proactively evaluate information in accordance with their own values, and decrease the chance they use others' opinions to make their choices (Bekker et al, 2013). Patient decision aids enable professionals to integrate patient preferences about treatment when planning care together (Stacey et al, 2014).…”

Use of Decision Aids with Minority Patients: a Systematic Review

“…12 In addition to differences in preferences for information sharing, some minority populations may have higher rates of Homosexuality OR Bisexuality OR Transgendered Persons OR Transsexualism OR Homosexuality, Female OR Homosexuality, Male homosexual OR homosexuals OR homosexuality OR bisexual OR bisexuals OR bisexuality OR queer OR gay OR transgender OR transgenderism OR transsexual OR transsexuals OR transsexuality OR transsexualism OR "transgendered persons" OR "trans persons" OR "trans people" OR "same sex" OR same-sex OR "transitioned people" OR "transitioned persons" OR lesbian OR lesbians OR lesbianism OR women who have sex with women OR wsw OR men who have sex with men OR msm OR ftm OR "female to male" OR "trans male" OR "trans men" OR transman OR transmen OR mtf OR "male to female" OR "trans women^OR transwoman OR transwomen Abbreviations: MSM = men who have sex with men; WSW = women who have sex with women; FTM = female to male; MTF = male to female low literacy that may require significant modification of material designed to engage patients. 7,13 The most commonly studied intervention to facilitate SDM in clinical practice is the decision aid (DA). DAs are educational tools designed to encourage patients to participate in medical decisions by displaying the benefits and harms of treatment options and by eliciting patient preferences, particularly for decisions with scientific uncertainty.…”