# Reformulating the common-sense model of self-regulation for hemoglobinopathies primary prevention

Foued Maaoui, Imen Moumni, France Arboix-Calas, Ines Safra, Samia Mnif

► To cite this version:

Foued Maaoui, Imen Moumni, France Arboix-Calas, Ines Safra, Samia Mnif. Reformulating the common-sense model of self-regulation for hemoglobinopathies primary prevention. Discover Public Health, 2025, 22, pp.115. 10.1186/s12982-025-00499-5. pasteur-05024280

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Submitted on 8 Apr 2025

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Perspective

# Reformulating the common-sense model of self-regulation for hemoglobinopathies primary prevention

Foued Maaoui¹,² · Imen Moumni¹ · France Arboix-Calas³ · Ines Safra¹ · Samia Mnif¹

Received: 29 October 2024 / Accepted: 11 March 2025

Published online: 24 March 2025

© The Author(s) 2025 OPEN

## Abstract

Hemoglobinopathies, the most common genetic disorders in humans, result from hemoglobin abnormalities. Sickle cell disease and thalassemia are notable examples, posing significant public health challenges from the Mediterranean basin to China. In low-income countries, over 90% of children with sickle cell disease do not survive to adulthood, highlighting the urgent need for effective primary prevention. The common-sense model of self-regulation (CSM) is a theoretical framework that explores how individuals perceive, interpret, and manage their health conditions. It emphasizes the role of cognitive and emotional representations in guiding health-related behaviors and has been extensively used to understand self-management and treatment adherence in chronic diseases among adults. However, its application in the primary prevention of hereditary diseases remains unexplored. In this study, we apply Fawcett's framework to analyze and evaluate the CSM's potential in the primary prevention of hemoglobinopathies (HPP). We propose a novel approach that integrates health education about hemoglobinopathies and self-regulation strategies for managing the risks of sickle cell disease and thalassemia.

**Keywords** Hemoglobinopathies · CSM of self-regulation · Health education · Primary prevention · Empowerment

# 1 Introduction

Hemoglobinopathies are a global health problem. Millions of people worldwide live with sickle cell disease and thalassemia [1].

In low-income countries, inadequate management, i.e. suboptimal transfusion therapy and iron treatment without effective monitoring, allows survival into early adulthood but is also associated with poor quality of life [1, 2].

To control these diseases, WHO encourages prevention programs: "A genetic control program is an integral strategy combining the best possible patient care and prevention through carrier screening, genetic counseling and the availability of prenatal diagnosis" [3].

"These programs should be adapted to specific socioeconomic and cultural contexts, designed to reduce incidence, morbidity and mortality" [4].

For Fletcher [5] and Modell [6], these prevention programs should be elaborated in accordance with the fundamental genetic counseling principles of individual or couple autonomy, the right to full information and strict confidentiality.

Consequently, genetic screening and counselling are intended to enable the individuals or couples concerned to make "informed choices" concerning marriage and procreation. Nevertheless, although genetic tests are available and

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<footnote>Foued Maaoui, maaoui_foued@hotmail.com | ¹Laboratory of Molecular and Cellular Hematology, Pasteur Institute of Tunis, Tunis, Tunisia. ²ISEFC Bardo, Virtual University of Tunis, Tunis, Tunisia. ³Faculty of Education, University of Montpellier, Montpellier, France.</footnote>
can detect hemoglobinopathies, their prevalence worldwide remains high [7], studies reveal several obstacles that reduce a strategy's effectiveness. Public misunderstanding of the biological processes inherent in these diseases, their consequences, therapies and prevention are among the most cited obstacles [8-11].

The belief that genetic testing opposes religious convictions [12], as well as the stigma that may be attached to hemoglobinopathy diagnosis [13], are further constraints to consider. It is up to childbearing couples to recognize the need for screening and to act accordingly, even if this decision runs counter to community social norms. To achieve this self-reliance, authors and institutions emphasize health education [14-16].

In this study we discuss the relevance of using the Common-Sense Model of Self-Regulation (CSM) as a framework for analyzing hemoglobinopathies representations and their prevention, i.e. self-managing transmission risks of sickle cell disease and thalassemia.

CSM has so far been used mainly to understand compliance, in particular medication adherence, in adults with chronic diseases [17].

The article is structured in three sections presenting (1) an assessment of CSM's relevance to research in health promotion (HP) and education (HE); (2) theoretical analysis according to the Fawcett framework including scope, context and content [18], (3) a CSM reformulation to be applied to HE and for the HPP.

## 2 CSM's relevance and prospects for health education

CSM's use in health science research is linked to the fact that it integrates concrete concepts and propositions, producing descriptive data linked to patients' illness self-regulation. In the literature on this model, much of the focus is on populations suffering from chronic illness.

Theorists do not explicitly specify model boundaries, but it is supposed [19] that CSM's application would be limited to people with the cognitive capacity to perceive a health threat, construct an illness representation and develop goals or self-regulatory action. Furthermore, it is assumed that an individual's cognitive capacity can oppose and modify established representations. So, the importance of CSM cognitive function offers opportunities for research and applications in the therapeutic field and, as we shall demonstrate, in HE and HPP.

### 2.1 Theoretical context

In 1980, Howard Leventhal developed the Common-Sense Model of Self-Regulation, which illustrates the convergence of two main behavioral theories in health psychology: the behavioral theories and the social-cognitive and emotional theories [20].

We examine its theoretical anchorage in health education models, which themselves derive from psychological foundations and major theoretical currents such as behaviorism, constructivism and socio-constructivism [21].

According to the CSM, hemoglobinopathies representation stored in memory can be defined as the individual's synthesis own knowledge about the illness based on information provided by recognized external sources, in this case school, healthcare professionals, the mass media, and personal illness experience and its symptoms, or through one's entourage and peers.

CSM addresses concepts of person, health and environment [22]. More specifically, it explores the relationships between the person, the environment and health in chronic disease through a multi-causal vision of health, i.e., the interaction of a determinants set reflecting an ongoing dynamic between individual and his or her environment [23]. This health vision is shared by the ecological model of health.

Pepper [24] proposed that changes in behavior, particularly in health, result from the interaction between persons and their environment. Although not clearly explained, the contextual and dynamic worldview is represented within the CSM. In addition, CSM places a great emphasis on "empowerment", i.e. individual autonomy in chronic disease management.

For Illich [21], health is an adaptation process of the person to the environment. CSM's theoretical anchorage in health model based on the existence of an autonomous subject, open to the world, is more evident insofar as it aims to develop individual self-regulation towards illnesses. In this model, individual is not only an actor in his or her own health, but also a decision-maker and partner in choices made with healthcare professionals. Their experiential knowledge is recognized and valued.

For Leventhal [17], health is a dynamic state, with the individual experiencing health in his or her environment. A person cannot therefore be separated from environmental and contextual influences; on the contrary, these influences
shape his or her health experience. Moreover, past experiences in turn determine future health experiences and self-regulatory decisions.

On another level, CSM's conception was based on previous knowledge in psychology and on the parallel processing model developed by Leventhal in 1970 and Dollard and Miller's research in 1950, asserting that fear motivates action [17].

Evidence later confirmed fear's role in behavior change, but that the motivation generated was short-lived unless associated with action plans.

The subsequent parallel processing model described that in a health threat situation, fear control and hazard control concepts emerge [17].

Fear control is the result of an emotional need to respond to the fear associated with a health threat, while hazard control is a cognitive representation of the health threat that also requires a management plan. These parallel processes, both emotional "fear control" and cognitive "hazard control", would stimulate action planning and evaluation.

The CSM is therefore an extension of the parallel treatment model; it integrates individual representations of illness linked to a health threat, while retaining the action planning and evaluation of the parallel treatment model [25].

Behavior changes and self-regulation perspectives have been widely used by many therapeutic health professions, including nursing and medicine, but little or not at all in health promotion and education research for chronic or acute disease primary prevention. And yet, their contributions would add to the theory's evolution and to the implementation of large-scale awareness-raising and educational interventions.

## 2.2 Theoretical content

Theoretical content corresponds to concepts, propositions and relational statements. There are four main concepts in the CSM: health threat, illness representation, coping procedure or action plan and evaluation [17].

Each CSM concept is clearly defined. The health threat, also called situational stimulus, refers to the health indicator that an individual experiences and perceives as a change in his or her health status. The three postulates underlying this model illustrate the interaction between the individual, his or her health and his or her environment:

1. The individual is seen as an active subject able to solve health-related problems. By seeking to understand their health status, they will try to reduce the gap between their perception of it and the one they aspire to,

2. in the health field, individuals' lay representations sometimes clash with the scientific representations conveyed by health professionals. These representations are personal and are built up from one's own illness experience, from trusted third parties, from medical discourse and from health education received at school,

3. disease representation constructed in this way is adopted by the individual who will carry out subsequent assessments, giving the CSM a dynamic character.

Illness representation comprises five domains, including identity, chronology, consequences, cause and controllability. Together, these domains interact and influence how an individual cognitively represents the threat to his or her health [17].

A coping procedure or action plan is the individual's self-regulatory plan used for dealing with the health threat, which may include action or inaction.

Finally, evaluation represents the individual's reflective product concerning the perceived success or failure of his or her action and/or self-regulation in dealing with the health threat. There are relational statements for each of the CSM concepts [25].

The perceived health threat stimulates development of an illness representation. This representation becomes the framework from which the individual elaborates his or her coping procedure or action plan. This procedure is evaluated based on the success perceived in achieving the threat's self-regulatory objectives.

Individual assessment uses common sense to judge the reliability and feasibility of one's action plan and self-regulation goals. If the result is positive, the disease representation is likely to be preserved, whereas a negative result leads to a modification of the disease representation.

Subsequent experiences with health threats will then use the modified disease representation. These representations are thus constructed from an iterative, looping process, influencing action planning, procedure evaluation and either retention or modification of the initial disease representation.
# 3 Theory evaluation

## 3.1 CSM's relevance to health promotion

Relevance is assessed by evaluating CSM's importance for health education research. It should be remembered that CSM is a means developed by health actors to achieve several public health objectives, in this case disease prevention and health promotion [23].

Health education, as part of health promotion, aims to give people more control over their own health and environment, and improve their ability to make wise choices. It helps people to better manage their health, and to choose and maintain healthy actions based on their needs, knowledge and skills. "It is envisaged in the school, family, professional and community contexts... and is part of a health ecological approach." [26].

Health education in schools is intended to bring about a change in behavior from an early age. However, lay representations of illness built up at family, community and social levels can be a major obstacle. Clément [27] defines illness social or collective representation as a set of interrelated conceptions. They can also be linked to individual characteristics such as social, religious or political opinions.

It is important to be aware of these different dimensions, as they can influence youthful representations and can act as obstacles to prevention. Hemoglobinopathies carry negative social values linked to the painful experience of these diseases. Combined with amplifying media coverage, social representations of our diseases can give rise to conceptions of "insurmountable illnesses" due to their hereditary nature.

In the biology classroom, the approach used to educate about health and to teach genetics can reinforce the stigma and fatalism that these diseases generate in society, or on the contrary, bring about a conceptual change conducive to prevention and health promotion.

To induce a conceptual change in youth and develop psychosocial skills, specialists see health education as involving constructivist and socio-constructivist learning process at school. The idea is to create socio-cognitive conflict situations in the classroom, which students would have to resolve collectively through project and investigative active pedagogies.

Consequently, using CSM to assess disease representations, prevention means, individual knowledge and skills for managing threats is an interesting prospect for research in health education. The cognitive processes that influence illness representations and outcome expectations are well described by the CSM of self-regulation [20]. Addressing these processes with a qualitative approach offers insight into the plausibility of hypothetical scenarios and once integrated and organized into a coherent conceptual framework, provides the basis for larger-scale quantitative studies.

The use of a reformulated conceptual CSM model, considering personal experiences and incorporating broader contextual factors of mediation, amplification and moderation, offers opportunities to adapt it to several diseases and above all to analyze in depth the factors guiding a youth's preventive behaviors in relation to his or her own health and/or that of others. It also has the potential to identify exploitable targets for educational interventions aimed at improving individuals' decision-making, practices and behaviors towards risk.

This model's concepts and propositions are clearly explained and implicitly adhere to the empowerment aims of health promotion and education. Moreover, CSM of self-regulation integrates the criteria of an ecological model of health through an autonomous subject development, open to the world, an approach to health strongly marked on health promotion as defined by the Ottawa Charter in 1986 [21], i.e., a process that empowers people to achieve greater control over and improvement of their own health [28].

## 3.2 Internal consistency

Internal consistency criteria include congruence between context and theory content, semantic clarity, as well as structural consistency within the theory [18]. The CSM aligns with Pepper's contextual and developmental worldview; this is not explicit but rather inferred through the individual's interaction with contextual determinants that are specific to him or her.

Dynamic health status is reflected in an iterative process of constructing and evaluating illness representations and self-regulatory behaviors [17]. Contextual and environmental influences on illness representations are thought to impact its domains, in particular symptom labelling, perception of what constitutes health and self-regulation practices. CSM demonstrates semantic clarity, as each concept is explicitly defined. Moreover, semantic consistency is maintained
throughout the CSM literature. Semantic inconsistency persists, however, mainly when researchers use the term illness perception while others evoke the term illness representation [30–33].

### 3.3 Parsimony

CSM is parsimonious in the structure of its four concepts and three postulates with simple relational statements. However, the correlation between the five disease representation domains and their respective contributions to its construction is unclear. Although not explicitly stated, it is assumed that some domains may be more influential than others, depending on the individual as well as the disease.

### 3.4 Testability

CSM testability concerns the observability of the theory's concepts, and whether data analysis techniques will enable the theory's propositions to be measured [18].

Many studies using the CSM focus on illness representations. Several instruments are used to measure individual disease representations, with the Brief Illness Perception Questionnaire and the Beliefs about Medication Questionnaire frequently cited [30–33]. In addition, statistical methods are available to measure the CSM's propositions, including regression analysis and structural equation modeling. CSM therefore offers robust testability.

### 3.5 Empirical adequacy

There are many significant empirical studies in support of CSM, as it has been applied to many chronic health problems, including diabetes, obesity, hypertension and sickle cell disease [29, 30–36]. Participants in these studies range from young adults to geriatricians and belong to different economic, ethnic and social categories [35–38].

Empirical evidence therefore supports CSM, including concepts and propositional statements. However, its application to health education and primary prevention of chronic and acute disease risks remains to be discovered.

### 3.6 Pragmatic adequacy

CSM's origins are rooted in psychology, but it has been used in other health professions, including medicine and pharmacy [29, 31–35]. Aside from sufficient preparation for safe and appropriate research practices, CSM use does not require any specific education or training.

CSM has been applied to a wide range of chronic health problems. This is relevant to health education, insofar as the CSM provides a framework for understanding individual experiences and the cognitive processes guiding self-regulatory health threat behaviors.

Non-compliance with measures to prevent communicable and non-communicable diseases is a pervasive problem affecting all ethnic groups and socio-economic categories.

CSM provides a framework for understanding self-regulatory behaviors that can lead to the development of educational interventions and awareness campaigns specifically designed to promote healthy self-regulatory behavior.

## 4 CSM and self-management of hemoglobinopathy genetic risks

Some studies have used the CSM to better understand medication adherence and compliance in sickle cell disease [35]. CSM use led to a better understanding of factors influencing sickle cell self-management in adults revealing that sickle cell symptoms, chronology, consequences and controllability representations exerted an influence on self-management behavior in adults.

However, to our knowledge, no research has used the CSM as a framework for understanding preventive and self-regulatory behaviors in relation to genetic transmission risks of sickle cell or thalassemic diseases. Nevertheless, these diseases' representational, chronological and controllability domains constitute research opportunities to anticipate carriers' transmission of hemoglobinopathies, through carrier screening, genetic counseling, prenuptial and prenatal diagnosis.
<figure><img src="image_6.png" /><figcaption>Fig. 1 CSM of self-regulation adapted to the hemoglobinopathies primary prevention</figcaption></figure>

Indeed, HB prevention depends on an effort to raise awareness, inform and educate youth in schools and universities. According to numerous studies, cultural, ethical and economic constraints explain the difficulties in implementing an effective preventive strategy [39–41].

These contextual factors argue in favor of CSM as a research tool to understand youth representations of these diseases and to develop the knowledge and skills essential for self-management of genetic risks, i.e. to inform, raise awareness and empower youth, future parents, to make the appropriate choices for each situation.

## 5 CSM reformulation for primary prevention of hemoglobinopathies

CSM has the potential to describe the representations or mental models that youth generate to make sense of sensory experiences and functional changes affecting their physical and mental well-being on the one hand, how these youth assess health risk, design and plan a strategy or preventive actions (anticipate, avoid, reduce risk), predict preventive action reliability and feasibility, i.e. estimate future outcomes and possible obstacles.

Representations begin with the implicit or explicit awareness, through direct or indirect experience, of symptoms, pain, functional and emotional changes that deviate from the “normal” or “healthy” prototype.

Identifying illness properties experienced by oneself or through others (family, peers, mass media, school), its chronology (onset speed, duration), perceived causes, responses associated with medical treatments if they exist, and preventive action results, are concrete perceptual factors that give meaning to deviations or illnesses.

In addition, the impact on learning ability, physical activity, social interaction and prospects such as study and professional life define the perceived potential consequences. These experiences thus feed into the five domains and enrich the content of an “active” mental model (illness representation): Identity (label and symptoms), Chronology, Cause, Control and Consequences (Fig. 1).

1. Identity: the label or name given to the disease and its associated symptoms. It determines perceived disease severity. For hemoglobinopathies, as for other diseases, the individual's perceived identity is linked to his or her commitment to prevention,

2. Cause: all personal ideas about illness-related causes, even if they are not scientifically correct,

3. Chronology/cyclicality: predictive beliefs about disease duration. These would influence preventive adherence through perceived need to take precautionary and anticipatory measures. We might suppose that a person with sickle-cell trait, with minor to moderate symptoms, perceives his or her disease as variable over time with no real
impact on his or her life, and would therefore be less inclined to anticipate hereditary transmission risk to his or her children,

4. Consequences: expectations of disease consequences and their impact on a person's life, those around them and their children, do not always lead to an increase in preventive commitment. This is particularly true for addictions (tobacco, alcohol, drugs), non-communicable diseases and hemoglobinopathies. Studying individual and contextual factors, or health determinants, is therefore important to achieve a balance between perceived consequences of a disease and decision-making to avoid it.

5. Controllability: this is the belief in the possible disease control, in the preventive measure's efficacy, in one's ability to anticipate and avoid risk factors, and is what determines, in part, a person's commitment to the preventive process. A strong control sense would increase personal investment in adhering to measures aimed at reducing risk factors, such as premarital and prenatal screening and genetic counseling for hemoglobinopathies.

The CSM evokes a parallel behavioral and cognitive response to the individual's constructed disease representation, of which five dimensions described, above, can be assessed [41, 42].

These five domains are linked to therapeutic compliance and probably to preventive compliance, as shown by a 2012 literature review of 11 studies on asthma, diabetes, myocardial infarction, glaucoma, chronic pain and tuberculosis [43]. Given their heterogeneous results across diseases and categories, we have decided to look more specifically at the links between hemoglobinopathies representations and their prevention for youth, a category not often cited in research.

Hemoglobinopathies are chronic diseases with a genetic origin that are declared from the outset, rather than acquired, which makes them specific in relation to the other pathologies studied, such as sexually transmitted infections and addictions; we have no knowledge about how youths perceive these diseases. The notion of cause seems worth exploring, as anthropological studies [44] highlight the possible overlap with religious beliefs of known genetic causality.

Furthermore, active mental representation suggests a range of actions, particularly preventive ones (Table 1), to avoid or reduce perceived deviations from the 'normal' or 'healthy' prototype. These deviations will be evaluated as consistent or inconsistent with hemoglobinopathies representation or with a risky situation, in interaction with contextual factors (cultural, ethnic, religious, socioeconomic) specific to each individual. The CSM envisions this situational and contextual dynamic as a self-regulating loop of decisions and actions to prevent hemoglobinopathies transmission to his or her children.

<table><caption>**Table 1** Choices and actions to plan for hemoglobinopathies prevention</caption><thead><tr><td>Identified risk</td><td>Choices and actions</td></tr></thead><tbody><tr><td>Prior to marriage or pregnancy</td><td>1. Screening if one has a family history of hemoglobinopathies<br>2. Inform partner of one's carrier status<br>3. Avoid marrying a carrier of hemoglobinopathy<br>4. Ending a relationship that puts future children at risk<br>5. Marry a chosen partner despite his or her carrier status</td></tr><tr><td>After marriage or cohabitation</td><td>1. Proceed with a pregnancy, accepting the risk of an affected child<br>2. Refrain from having children and choose adoption, for example<br>3. Plan a PND, choosing either to accept an affected child or to terminate the pregnancy<br>4. Choose a PID as an alternative to PND and thus avoid termination of the pregnancy</td></tr><tr><td>Current pregnancy</td><td>1. Undergo PND (if in early pregnancy)<br>2. Accept the results of the PND without further action<br>3. Terminate the current pregnancy without further action</td></tr></tbody></table>

PND prenatal diagnosis, PID preimplantation diagnosis

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# 6 Discussion

For any public health program to be effective, the public must be adequately prepared through a proper education and awareness policy [45].

CSM could be used for HE and HPP not only because it provides a framework for assessing static representations of these diseases and their prevention, but also for exploring dynamic interactions between factors controlling health behaviors in response to hereditary transmission risks from adolescents, future parents, to their children.

As CSM addresses factors underlying behavior, it provides a predictive and analytical model to explain how and why married or cohabiting couples behave towards hemoglobinopathies risks, including whether or not they accept anticipatory and avoidance measures (Table 1).

Many countries have experienced non-adherence to preventive efforts; avoiding marriage with a carrier was refused by 90% of those concerned in Cyprus [46], certain invasive diagnostic techniques, such as choriocentesis and amniocentesis, performed during pregnancy, can arouse fears in pregnant women, especially as prenatal diagnosis leading to selective abortion of affected foetuses is particularly painful and constraining not only for religious reasons, but also for "at-risk" couples and the families themselves, whatever their cultural background [6].

For individuals with hemoglobinopathies, or potential carriers of hemoglobinopathies, whatever their living environment, they will always be confronted with painful reproductive choices in their lifetime.

To make informed health decisions and choose the appropriate procreation option among those proposed in Table 1, schools should provide students with educational opportunities to acquire biomedical knowledge and develop psychosocial skills essential for primary prevention.

The design of educational tools and learning situations around the Common-Sense Model (CSM) would then add value in understanding genetic risk and procreation choices in hemoglobinopathies. Moreover, the CSM offers interesting perspectives for evaluating the effectiveness of these tools and explaining the results. For example, a series of detailed studies conducted by Diana Wilkie and her colleagues used video sketches to illustrate several scenarios in which people with sickle cell disease make procreation choices and may have children with sickle cell disease. The young adults who watched the CHOICES educational program gained knowledge but did not change their procreation choices [47].

These results can be explained through the two components of the CSM: cognitive and emotional. The proposed video sketches did not provoke a change in behavior because they did not provide sufficient information regarding the five cognitive dimensions. They failed to change the target audience's representations regarding the identity, cause, consequences, chronology and controllability of hemoglobinopathy.

Regarding the emotional component, the video sketches did not ensure the development of psychosocial skills in learners. Under these conditions, the subjective part predominates because the target audience did not acquire the necessary resources to have a rational perception of the risk.

Furthermore, the use of the Common-Sense Model (CSM) offers interesting perspectives for research. Hypotheses and research questions can be formulated based on the theoretical foundation of this model.

For example:

* How can a future health threat to your offspring become personally relevant?

* Will individuals who witness the suffering of friends or relatives with sickle cell disease have a different perception of the disease and reproductive actions in CHOICES compared to those who have never witnessed the pain associated with sickle cell disease?

* Do the educational video simulations in CHOICES immediately describe the consequences and provide the personal experience necessary to form an accurate representation of the disease and modify reproductive self-management actions, or are the CHOICES videos still perceived as irrelevant future consequences of the disease manifestations in a baby that will not be born for several months?

Furthermore, before marriage or pregnancy, the reasons for choosing a partner are obviously not limited to genetics. Human attraction, family pressure, and religious and social structures are all likely to play an important role in the choice of a reproductive partner, and these factors seem to fall outside the realm of cognitive knowledge and skills.

After using an educational tool based on the Common-Sense Model (CSM) to develop cognitive and affective skills and knowledge about sickle cell disease, such as presenting scenarios like CHOICES to people with sickle cell disease, the following questions can be tested:
* Does the knowledge gained correlate with self-management actions to avoid having a baby with sickle cell disease?

* Do the actions correlate with the strength of beliefs about romantic attraction, with perceived family pressure to select this mate? With perceived conflict between religious beliefs and certain health actions?

On another note, adolescence is characterized by the search for independence and testing of boundaries. Irrational acceptance of risks is common, such as substance abuse or engaging in extreme sports. Maturity of judgment can take years.

By using an educational tool based on the Common-Sense Model (CSM) and then presenting scenarios like CHOICES to individuals with sickle cell disease, we can measure their understanding of the risks associated with having a child with sickle cell disease. The operational questions to be answered are as follows:

* Do they think that those risks apply to them personally?

* Do they find the level of risk to be acceptable for their personal reproductive choices?

The influence of socio-demographic determinants can be considered. Low financial stability will probably alter the choices by imposing additional constraints and limiting the ability to tolerate some risks. Will CHOICES have less impact on individuals or families with low-income levels?

Low educational level could reduce the ability to learn new cognitive skills or add experiences. Will CHOICES have less impact on individuals with low educational levels?

Mistrust of health authorities on issues like vaccine safety and COVID isolation probably make some groups less likely to accept health education from authority figures.

Will CHOICES have less impact on reproductive decisions for individuals who routinely decline influenza vaccination? Will information presented in social media and by peers be accepted more readily into the disease representation than information presented in CHOICES which comes from health educators and research authority figures.

Finally, can CSM frameworks guide the development of health promotion and health education that address the needs of subgroups like the ones listed above (adolescent risk-takers, low income, low education, mistrustful of authority, perceiving social or religious constraints) by providing new personal experiences and new disease representations?

Consequently, researchers and health education experts must strive to design and implement an educational policy that provides knowledge and develops the cognitive and affective skills needed to make informed reproductive choices and accept difficult decisions.

Indeed, CSM provides logical classification of coping behaviors/strategies and outcome assessment [48], which could be used to design and test communication and health education interventions aimed at influencing self-management of hemoglobinopathy risks.

A qualitative approach is relevant for exploring these dynamic processes and generating quantitative research hypotheses and interventions.

Furthermore, it is possible to generalize the CSM of self-regulation reformulated for HPP to other infectious or acute diseases through a framework aimed at developing individual empowerment to deal with health risk factors and situations.

**Author contributions** FM conceived and designed the study. FM drafted the manuscript. FM, IM, IS, FC and SM assisted with drafting the manuscript. The author(s) read and approved the final manuscript.

**Funding** Not applicable.

**Data availability** No datasets were generated or analysed during the current study.

## Declarations

**Ethics approval and consent to participate** Not applicable.

**Consent for publication** Not applicable.

**Competing interests** The authors declare that they have no competing interests.

**Open Access** This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source,

<figure><img src="image_8.png" /></figure>
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