Nocebo and the potential harm of ‘high risk’ labelling: a scoping review

Symon, Andrew; Williams, Brian; Adelasoye, Q; Cheyne, Helen

doi:10.1111/jan.12637

Cited by 17 publications

(17 citation statements)

References 71 publications

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“…As Wickham stated: “It may be uncomfortable to realise that ‘we’ can also be seen as an intervention, but if we can find ways of listening carefully to what this minority of women are saying we may be able to find ways of improving the experiences of all women” ([ 29 ] p.5). Recently Symon et al published a scoping review of this phenomenon of self-fulfilling prophesy described as the ‘nocebo effect’ [ 30 ]. He concluded that “it appears that nocebo is significantly more common in women and where there is prior negative knowledge/expectation (p.1526).”…”

Section: Discussionmentioning

confidence: 99%

Women’s motivations for choosing a high risk birth setting against medical advice in the Netherlands: a qualitative analysis

Hollander

Miranda

Dillen

et al. 2017

BMC Pregnancy Childbirth

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BackgroundHome births in high risk pregnancies and unassisted childbirth seem to be increasing in the Netherlands. Until now there were no qualitative data on women’s motivations for these choices in the Dutch maternity care system where integrated midwifery care and home birth are regular options in low risk pregnancies. We aimed to examine women’s motivations for birthing outside the system in order to provide medical professionals with insight and recommendations regarding their interactions with women who have birth wishes that go against medical advice.MethodsAn exploratory qualitative research design with a constructivist approach and a grounded theory method were used. In-depth interviews were performed with 28 women on their motivations for going against medical advice in choosing a high risk childbirth setting. Open, axial and selective coding of the interview data was done in order to generate themes. A focus group was held for a member check of the findings.ResultsFour main themes were found: 1) Discrepancy in the definition of superior knowledge, 2) Need for autonomy and trust in the birth process, 3) Conflict during negotiation of the birth plan, and 4) Search for different care. One overarching theme emerged that covered all other themes: Fear. This theme refers both to the participants’ fear (of interventions and negative consequences of their choices) and to the providers’ fear (of a bad outcome). Where for some women it was a positive choice, for the majority of women in this study the choice for a home birth in a high risk pregnancy or an unassisted childbirth was a negative one. Negative choices were due to previous or current negative experiences with maternity care and/or conflict surrounding the birth plan.ConclusionsThe main goal of working with women whose birthing choices do not align with medical advice should not be to coerce them into the framework of protocols and guidelines but to prevent negative choices.Recommendations for maternity caregivers can be summarized as: 1) Rethink risk discourse, 2) Respect a woman’s trust in the birth process and her autonomous choice, 3) Have a flexible approach to negotiating the birth plan using the model of shared decision making, 4) Be aware of alternative delivery care providers and other sources of information used by women, and 5) Provide maternity care without spreading or using fear.

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Section: Discussionmentioning

confidence: 99%

Women’s motivations for choosing a high risk birth setting against medical advice in the Netherlands: a qualitative analysis

Hollander

Miranda

Dillen

et al. 2017

BMC Pregnancy Childbirth

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“…This is supposedly the result of negative expectations regarding the side effects of the intervention [39]. Labeling someone as being at high risk of developing AD may in the same way create negative expectations of one’s own memory functioning, resulting in actual diminished functioning [40]. …”

Section: Discussionmentioning

confidence: 99%

Psychological, behavioral and social effects of disclosing Alzheimer’s disease biomarkers to research participants: a systematic review

et al. 2016

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BackgroundCurrent Alzheimer’s disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological, behavioral and social effects of disclosure are. This systematic review therefore examines the psychological, behavioral and social effects of disclosing genetic and nongenetic AD-related biomarkers to cognitively healthy research participants.MethodsWe performed a systematic literature search in eight scientific databases. Three independent reviewers screened the identified records and selected relevant articles. Results extracted from the included articles were aggregated and presented per effect group.ResultsFourteen studies met the inclusion criteria and were included in the data synthesis. None of the identified studies examined the effects of disclosing nongenetic biomarkers. All studies but one concerned the disclosure of APOE genotype and were conducted in the USA. Study populations consisted largely of cognitively healthy first-degree relatives of AD patients. In this group, disclosure of an increased risk was not associated with anxiety, depression or changes in perceived risk in relation to family history. Disclosure of an increased risk did lead to an increase in specific test-related distress levels, health-related behavior changes and long-term care insurance uptake and possibly diminished memory functioning.ConclusionIn cognitively healthy research participants with a first-degree relative with AD, disclosure of APOE ε4-positivity does not lead to elevated anxiety and depression levels, but does increase test-related distress and results in behavior changes concerning insurance and health. We did not find studies reporting the effects of disclosing nongenetic biomarkers and only one study included people without a family history of AD. Empirical studies on the effects of disclosing nongenetic biomarkers and of disclosure to persons without a family history of AD are urgently needed.Trial registrationPROSPERO international prospective register for systematic reviews CRD42016035388. Registered 19 February 2016.Electronic supplementary materialThe online version of this article (doi:10.1186/s13195-016-0212-z) contains supplementary material, which is available to authorized users.

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“…An unsatisfactory clinical context and a patient's negative beliefs may give rise to a nocebo effect, which is the opposite of the placebo effect (Symon et al ., ). Nurses and other health care professionals often administer placebo substances (Fässler et al ., ).…”

Section: The Placebo Effect In Nursing Beyond the Biomedical Modelmentioning

confidence: 97%

Nursing knowledge: hints from the placebo effect

Zanotti

Chiffi

2016

Nursing Philosophy

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Nursing knowledge stems from a dynamic interplay between population-based scientific knowledge (the general) and specific clinical cases (the particular). We compared the 'cascade model of knowledge translation', also known as 'classical biomedical model' in clinical practice (in which knowledge gained at population level may be applied directly to a specific clinical context), with an emergentist model of knowledge translation. The structure and dynamics of nursing knowledge are outlined, adopting the distinction between epistemic and non-epistemic values. Then, a (moderately) emergentist approach to nursing knowledge is proposed, based on the assumption of a two-way flow from the general to the particular and vice versa. The case of the 'placebo effect' is analysed as an example of emergentist knowledge. The placebo effect is usually considered difficult to be explained within the classical biomedical model, and we underscore its importance in shaping nursing knowledge. In fact, nurses are primarily responsible for administering placebo in the clinical setting and have an essential role in promoting the placebo effect and reducing the nocebo effect. The beliefs responsible for the placebo effect are as follows: (1) interactive, because they depend on the relationship between patients and health care professionals; (2) situated, because they occur in a given clinical context related to certain rituals; and (3) grounded on higher order beliefs concerning what an individual thinks about the beliefs of others. It is essential to know the clinical context and to understand other people's beliefs to make sense of the placebo effect. The placebo effect only works when the (higher order) beliefs of doctors, nurses and patients interact in a given setting. Finally, we argue for a close relationship between placebo effect and nursing knowledge.

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Nocebo and the potential harm of ‘high risk’ labelling: a scoping review

Cited by 17 publications

References 71 publications

Women’s motivations for choosing a high risk birth setting against medical advice in the Netherlands: a qualitative analysis

Women’s motivations for choosing a high risk birth setting against medical advice in the Netherlands: a qualitative analysis

Psychological, behavioral and social effects of disclosing Alzheimer’s disease biomarkers to research participants: a systematic review

Nursing knowledge: hints from the placebo effect

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