Confidence and Legitimacy in Health Information and Communication

Ceiline Paganelli

• Publisher: Wiley-ISTE
• Year: 2018
• Print ISBN: 9781786303523
• eBook ISBN: 9781119549710
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

The question of trust is crucial in the field of health. First, because health is indicative of particularly strong issues at the societal, regulatory, institutional or individual levels; secondly, because the boundaries between specialized information validated by legitimate instances and uncommitted information have become permeable; finally, because it appears to be central within relations between actors in the field. In this book, we propose to address the trust in terms of the information and communication phenomena that are at work in the health sector, and to look at the process of building the legitimacy of information in the health sector. health.

1
Information Sources on Childhood Immunization

1.1. Introduction

The heterogeneity of health information on the Internet is well established, and it is even growing. Henceforth, medical information (professional) and health information (general public) coexist in complementary uses [ROM 08]. At the same time, over the past 10 years, there has been a shift toward industrialization of health-related information, characterized by a lack of control from both the state and the medical sectors [ROM 08]. In this context, the search for health information is characterized by a predominant use of the medical Internet, the most popular source of information for the French [IPS 10]. However, despite a major increase in the amount of available information, there is a persistent crisis of trust¹ among the French regarding the health system due to cyclical and systemic circumstances [SAO 09]. The information systems established by governments are little mobilized, and institutional websites do not provide the reassurance sought by the user [TOU 10]. Trust has been undermined by media coverage of different health issues. In this difficult context, we wanted to understand how parents learn more about vaccinations for their children. On the basis of the example of vaccination, despite the absence of a health scandal, several controversies have emerged and spread widely (e.g. with hepatitis B or H1N1 flu), reinforcing the distrust of the population vis-à-vis pharmaceutical industries and the political world [SAR 12]. Medical progress has the observable counter-effect of an increase in the perception of vaccine risk, which outweighs the perception of the risk of disease [VIÉ 16]. A form of anxiety toward the vaccination act [AMO 13] has developed, reinforced by a context of over-information that tends to complicate the identification of the risks involved in non-vaccination [BAL 07], thus contributing to a decrease in vaccination coverage [DOM 10]. Therefore, the question here is to define the process of informational research and sketch a comprehensible outline of the construction of legitimacy² or the more reserved attitude that parents adopt toward vaccination information. In other words, what sources are used for information? What are the legitimacy criteria for the information and confidence retained by the parent?

To answer these questions, we propose an analysis in three stages. The first stage will contextualize our study by questioning the trust toward vaccination. This will be followed by an inventory of a studied group’s information health practices. In addition to being complementary to studies already conducted in communication-information, this stage will provide an opportunity to question the criteria that indicate the legitimacy of health information to the parent. What about the information that circulates? We think, in particular, that health information on the Internet, health forums such as Doctissimo, has public support [TOU 08]. We will then focus on informational sources of childhood immunization. The aim is to understand which media reach parents in a relevant way among the multitude of information disseminated by the government through different organizations (the Ministry, centre de protection maternelle infantile [maternal-child protection center] (PMI), Institut national de prévention et d’éducation pour la santé [National Institute for Prevention and Health Education] (INPES), health books, maternity services, information campaigns, etc.). We will also see that the number of parents seeking information on the subject remains low, which is a fact often justified by the trust placed in the medical profession, which is reflected throughout the research. Finally, we will discuss how this trust is built.

1.2. Methodology

The survey was conducted in July and August 2016 in a pediatric practice. We interviewed parents who used a pediatrician and not a general practitioner for the medical monitoring of their children to optimize the rate of participation. This aspect should therefore be taken into account when reading the results.

In practical terms, we welcomed volunteers in a dedicated office space following their consultation, after which the pediatrician asked the parents to participate in a survey with the aim of improving research on the subject of childhood immunization. The parents were also informed that this study was carried out by an outside researcher who had no implication in its realization except that of proposing it.

As researchers, we considered this study in a dual interest: first, it was to think of a tool that would provide answers to initial questions, and it was necessary to design a measurement tool that could be reused on a larger scale to quantitatively confirm the trends revealed during this first exploratory qualitative survey. We therefore opted for a survey at the intersection of the directive interview (oral questionnaire) and the semi-directive interview by including several open questions. We wanted to bring qualitative elements, since there are still a few studies on the understanding of behaviors and sources of information related to vaccination and especially that of children. Studies conducted in France focus mainly on immunization coverage; they are most often carried out in schools through the analysis of health records [GOI 15].

When preparing the questionnaire, we were inspired in part by that developed as part of the VACSATC (Vaccine Safety: Attitudes, Training and Communication) study. Conducted in five European countries in 2009, this study included a survey of more than 6,000 patients to determine their sources of vaccination information and the level of confidence they had in them [MOU 12].

The designed interview grid is organized around four approaches: information-seeking practices related to health, knowledge and representations of vaccination, access to information and information retrieval on immunization and, finally, suggestions of health professionals about it. A total of 52 people were interviewed. The breakdown is as follows: 43 women and eight men, 51 of whom were in the age group of 25––49 years; two people were graduates of the brevet (French diploma of higher education); 12 were high school graduates; 26 were graduates with a higher undergraduate diploma (bac +2/+3); and 12 were college graduates (bac +4). With regard to occupations and socio-professional categories, we counted: one working farmer; three people who were craftsmen, tradesmen and entrepreneurs; five managers and higher intellectual professions; 20 people with intermediate professions; 18 employees; one laborer; and four unemployed. Now, let us review the context of the research.

1.3. Vaccination: a proven trust

1.3.1. Loss of trust in the vaccination act

Trials for health issues are constantly increasing [SAO 09], and the justice system condemns parents who do not adhere to the medical obligations imposed by the legislation³. Under this climate of distrust and the awareness of the growing concerns of the population on this subject, the French Ministry of Health launched an action plan on January 12, 2016, for the renewal of its vaccination policy⁴ [HUR 16]. In this context, a citizen consultation was set up via the website concertation-vaccination.fr⁵ [COM 16]. This device reflects the appropriation of this subject by the government with the intention of reassuring the French. For their part, health professionals note that an increasing number of parents find it difficult to decide whether or not to vaccinate their child. This can be due to the disappearance of almost all diseases in Europe for several decades (tetanus, poliomyelitis, diphtheria) and the underestimation of the potential severity of the existing diseases (pertussis, measles, meningitis and mumps). There is a lack of knowledge and research information on these pathologies. Public health campaigns on vaccination are not mentioned among the sources of information used [AMO 13]. Insufficient access to information and lack of trust in both government and pharmaceutical industries create negative attitudes among parents [GUS 05, RAI 03].

1.3.2. The vaccination obligation

In the field of health, the vaccination theme has the specific feature of being one of the few for which the free consent of the patient is not required⁶. It should be remembered that some vaccines are mandatory as soon as we enter the community. Thus, the free consent intended to favor freedom and reduce the authority of the State [JAU 03] is not applicable on this subject⁷; it cannot, therefore, be a constituent element of trust in the act. Therefore, in this context, where the vaccination act is legally imposed, can we really speak of trust? The legitimacy of vaccination is not questioned, but it can be thought of as a form of attack on individual liberties, a kind of “upset freedom” [HAS 99, TAB 09]. In addition to the trust in information sources, the trust attributed especially to health professionals raises questions. This point has already been the subject of various studies in the fields of medicine as well as information and communication sciences or management sciences. It should be noted that the loss of confidence in health professionals has increased the search for online information and more particularly the use of forums such as Doctissimo [TOU 10]. Trust is built thanks to the information provided and the behavior of health personnel [PHA 02]. Regarding the more specific question of vaccination, trust between health professionals and parents is a major factor in influencing parental decisions about vaccines [AMO 13, FOR 07]. Here, more than trust, we think it could be “accommodation” of a form of “forced trust” on the part of parents. In the conceptual line of the work of Romeyer [ROM 08, ROM 12], our first hypothesis lies in the idea that parents refer more extensively to health information via the Internet, but give confidence and legitimacy to medical information, especially when it is provided directly by a health professional. From this follows our second hypothesis, according to which reliance is fundamental to the construction of a feeling of trust from the parent about the vaccination act. Reliance will be understood here as allowing the maintenance of trust in care through the relationship. We will try to verify the findings established in a hospital environment, according to which trust takes shape during the relationship and by the relationship [PHA 02].

1.4. Health and legitimacy information retrieval: an ambivalent stance

1.4.1. Health information research practices

Health information retrieval is a common practice. The 46 parents interviewed had already personally searched for information related to health. Research via the Internet is widely acclaimed (39 parents) with a significant use of forums in almost every other case. Doctissimo was largely in the lead (referred two times out of three during the consultation of forums). How can these research practices be explained beyond the need for exchanges and opinions from the public sphere [ROM 08, ROM 12]?

The criteria for the choice of sources, mentioned by the parents during research in connection with health, reveal that a majority does not have specific habits or research criteria, which was already the case at the beginning of the medical Internet [NAB 02]. They rely on the first pages displayed on the results list, essentially favoring the speed and practicality of the search tool. Th...

Table of contents

• Cover
• Table of Contents
• Preface
• Introduction
• 1 Information Sources on Childhood Immunization
• 2 Web 2.0, Parenting and Informational Habitus
• 3 Trust, Information Sources and the Impact on Decision-Making: The Example of Vaccination
• 4 Info-Communication Practices of Autistic Children’s Parents on the Internet: Trust Issues and Legitimacy
• 5 Trust and Information Behavior of French Air Force Flight Nurses
• 6 Online Info-Communication Practices in the Face of a Crisis of Trust in Breast Cancer Prevention
• 7 Trust between Constraints and Limitations of Information Behaviors Among Public Health Policy Actors: The Case of Music Therapy
• 8 Hospital Trust and Legitimacy: Internal Medicine in the French Health Care System
• 9 From Health Actors’ Information-Communication Issues in the Workplace to Obstacles when Establishing a Relationship of Trust
• 10 Connected Health: Between Common Aspirations and Specific Interests
• 11 Expressions of Trust in the Home-Based Care Relationship and Areas of Legitimacy in the Context of Digital Media
• 12 The Electronic Medical Record: Standardization Issues and Personalization of Information for Health Professionals
• Postface
• List of Authors
• Index
• End User License Agreement