research paper topics children's health

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• Published: 14 September 2023

Children and youth’s perceptions of mental health—a scoping review of qualitative studies

• Linda Beckman 1 , 2 ,
• Sven Hassler 1 &
• Lisa Hellström 3  

BMC Psychiatry volume  23 , Article number:  669 ( 2023 ) Cite this article

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Recent research indicates that understanding how children and youth perceive mental health, how it is manifests, and where the line between mental health issues and everyday challenges should be drawn, is complex and varied. Consequently, it is important to investigate how children and youth perceive and communicate about mental health. With this in mind, our goal is to synthesize the literature on how children and youth (ages 10—25) perceive and conceptualize mental health.

We conducted a preliminary search to identify the keywords, employing a search strategy across electronic databases including Medline, Scopus, CINAHL, PsychInfo, Sociological abstracts and Google Scholar. The search encompassed the period from September 20, 2021, to September 30, 2021. This effort yielded 11 eligible studies. Our scoping review was conducted in accordance with the PRISMA-ScR Checklist.

As various aspects of uncertainty in understanding of mental health have emerged, the results indicate the importance of establishing a shared language concerning mental health. This is essential for clarifying the distinctions between everyday challenges and issues that require treatment.

We require a language that can direct children, parents, school personnel and professionals toward appropriate support and aid in formulating health interventions. Additionally, it holds significance to promote an understanding of the positive aspects of mental health. This emphasis should extend to the competence development of school personnel, enabling them to integrate insights about mental well-being into routine interactions with young individuals. This approach could empower children and youth to acquire the understanding that mental health is not a static condition but rather something that can be enhanced or, at the very least, maintained.

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Introduction

In Western society, the prevalence of mental health issues, such as depression and anxiety [ 1 ], as well as recurring psychosomatic health complaints [ 2 ], has increased from the 1980s and 2000s. However, whether these changes in adolescent mental health are actual trends or influenced by alterations in how adolescents perceive, talk about, and report their mental well-being remains ambiguous [ 1 ]. Despite an increase in self-reported mental health problems, levels of mental well-being have remained stable, and severe psychiatric diagnoses have not significantly risen [ 3 , 4 ]. Recent research indicates that understanding how children and youth grasp mental health, its manifestations, and the demarcation between mental health issues and everyday challenges is intricate and diverse. Wickström and Kvist Lindholm [ 5 ] show that problems such as feeling low and nervous are considered deep-seated issues among some adolescents, while others refer to them as everyday challenges. Meanwhile, adolescents in Hellström and Beckman [ 6 ] describe mental health problems as something mainstream, experienced by everyone at some point. Furthermore, Hermann et al. [ 7 ] point out that adolescents can distinguish between positive health and mental health problems. This indicates their understanding of the complexity and holistic nature of mental health and mental health issues. It is plausible that misunderstandings and devaluations of mental health and illness concepts may increase self-reported mental health problems and provide contradictory results when the understanding of mental health is studied. In a previous review on how children and young people perceive the concept of “health,” four major themes have been suggested: health practices, not being sick, feeling good, and being able to do the desired and required activities [ 8 ]. In a study involving 8–11 year olds, children framed both biomedical and holistic perspectives of health [ 9 ]. Regarding the concept of “illness,” themes such as somatic feeling states, functional and affective states [ 10 , 11 ], as well as processes of contagion and contamination, have emerged [ 9 ]. Older age strongly predicts nuances in conceptualizations of health and illness [ 10 , 11 , 12 ].

As the current definitions of mental health and mental illness do not seem to have been successful in guiding how these concepts are perceived, literature has emphasized the importance of understanding individuals’ ideas of health and illness [ 9 , 13 ]. The World Health Organization (WHO) broadly defines mental health as a state of well-being in which the individual realizes his or her abilities, can cope with the normal stresses of life, work productively and fruitfully and make a contribution to his or her community [ 14 ] capturing only positive aspects. According to The American Psychology Association [ 15 ], mental illness includes several conditions with varying severity and duration, from milder and transient disorders to long-term conditions affecting daily function. The term can thus cover everything from mild anxiety or depression to severe psychiatric conditions that should be treated by healthcare professionals. As a guide for individual experience, such a definition becomes insufficient in distinguishing mental illness from ordinary emotional expressions. According to the Swedish National Board of Health and Welfare et al. [ 16 ], mental health works as an umbrella term for both mental well-being and mental illness : Mental well-being is about being able to handle life's difficulties, feeling satisfied with life, having good social relationships, as well as being able to feel pleasure, desire, and happiness. Mental illness includes both mild to moderate mental health problems and psychiatric conditions . Mild to moderate mental health problems are common and are often reactions to events or situations in life, e.g., worry, feeling low, and sleep difficulties.

It has been argued that increased knowledge of the nature of mental illness can help individuals to cope with the situation and improve their well-being. Increased knowledge about mental illness, how to prevent mental illness and help-seeking behavior has been conceptualized as “mental health literacy” (MHL) [ 17 ], a construct that has emerged from “health literacy” [ 18 ]. Previous literature supports the idea that positive MHL is associated with mental well-being among adolescents [ 19 ]. Conversely, studies point out that low levels of MHL are associated with depression [ 20 ]. Some gender differences have been acknowledged in adolescents, with boys scoring lower than girls on MHL measures [ 20 ] and a social gradient including a positive relationship between MHL and perceived good financial position [ 19 ] or a higher socio-economic status [ 21 ].

While MHL stresses knowledge about signs and treatment of mental illness [ 22 ], the concern from a social constructivist approach would be the conceptualization of mental illness and how it is shaped by society and the thoughts, feelings, and actions of its members [ 23 ]. Studies on the social construction of anxiety and depression through media discourses have shown that language is at the heart of these processes, and that language both constructs the world as people perceive it but also forms the conditions under which an experience is likely to be construed [ 24 , 25 ]. Considering experience as linguistically inflected, the constructionist approach offers an analytical tool to understand the conceptualization of mental illness and to distinguish mental illness from everyday challenges. The essence of mental health is therefore suggested to be psychological constructions identified through how adolescents and society at large perceive, talk about, and report mental health and how that, in turn, feeds a continuous process of conceptual re-construction or adaptation [ 26 ]. Considering experience as linguistically inflected, the constructionist approach could then offer an analytical tool to understand the potential influence of everyday challenges in the conceptualization of mental health.

Research investigating how children and youth perceive and communicate mental health is essential to understand the current rise of reported mental health problems [ 5 ]. Health promotion initiatives are more likely to be successful if they take people’s understanding, beliefs, and concerns into account [ 27 , 28 ]. As far as we know, no review has mapped the literature to explore children’s and youths’ perceptions of mental health and mental illness. Based on previous literature, age, gender, and socioeconomic status seem to influence children's and youths’ knowledge and experiences of mental health [ 10 , 11 , 12 ]; therefore, we aim to analyze these perspectives too. From a social constructivist perspective, experience is linguistically inflected [ 26 ]; hence illuminating the conditions under which a perception of health is formed is of interest.

Therefore, we aim to study the literature on how children and youth (ages 10—25) perceive and conceptualize mental health, and the specific research questions are:

What aspects are most salient in children’s and youths’ perceptions of mental health?

What concepts do children and youth associate with mental health?

In what way are children's and youth’s perceptions of mental health dependent on gender, age, and socioeconomic factors?

Literature search

A scoping review is a review that aims to provide a snapshot of the research that is published within a specific subject area. The purpose is to offer an overview and, on a more comprehensive level, to distinguish central themes compared to a systematic review. We chose to conduct a scoping review since our aim was to clarify the key concepts of mental health in the literature and to identify specific characteristics and concepts surrounding mental health [ 29 , 30 ]. Our scoping review was conducted following the PRISMA-ScR Checklist [ 31 ]. Two authors (L.B and L.H) searched and screened the eligible articles. In the first step, titles and abstracts were screened. If the study included relevant data, the full article was read to determine if it met the eligibility criteria. Articles were excluded if they did not fulfill all the eligibility criteria. Any uncertainties were discussed among L.B. and L.H., and the third author, S.H., and were carefully assessed before making an inclusion or exclusion decision. The software Picoportal was employed for data management. Figure  1 illustrates a flowchart of data inclusion.

PRISMA flow diagram outlining the search process

Eligibility criteria

We incorporated studies involving children and youth aged 10 to 25 years. This age range was chosen to encompass early puberty through young adulthood, a significant developmental period for young individuals in terms of comprehending mental health. Participants were required not to have undergone interviews due to chronic illness, learning disabilities (e.g., mental health linked to a cancer diagnosis), or immigrant status.

Studies conducted in clinical settings were excluded. For the purpose of comparing results under similar conditions, we specifically opted for studies carried out in Western countries .

Given that this review adopts a moderately constructionist approach, intentionally allowing for the exploration of how both young participants and society in general perceive and discuss mental health and how this process contributes to ongoing conceptual re-construction, the emphasis was placed on identifying articles in which participants themselves defined or attributed meaning to mental health and related concepts like mental illness. The criterion of selecting studies adopting an inductive approach to capture the perspectives of the young participants resulted in the exclusion of numerous studies that more overtly applied established concepts to young respondents [ 32 ].

Information sources

We utilized electronic databases and reached out to study authors if the article was not accessible online. Peer-reviewed articles were exclusively included, thereby excluding conference abstracts due to their perceived lack of relevance in addressing the review questions. Only research in English was taken into account. Publication years across all periods were encompassed in the search.

Search strategy

Studies concerning children’s and youths’ perceptions of mental health were published across a range of scientific journals, such as those within psychiatry, psychology, social work, education, and mental health. Therefore, several databases were taken into account, including Medline, Scopus, CINAHL, PsychInfo, Sociological abstracts, and Google Scholar, spanning from inception on September 20, 2021 to September 30, 2021. We involved a university librarian from the start in the search process. The combinations of search terms are displayed in Table 1 .

Quality assessment

We employed the Quality methods for the development of National Institute for Health Care Excellence (NICE) public health guidance [ 33 ] to evaluate the quality of the studies included. The checklist is based on checklists from Spencer et al. [ 34 ], Public Health Resource Unit (PHRU) [ 26 , 35 ], and the North Thames Research Appraisal Group (NTRAG) [ 36 ] (Refer to S2 for checklist). Eight studies were assigned two plusses, and three studies received one plus. The studies with lower grades generally lacked sufficient descriptions of the researcher’s role, context reporting, and ethical reporting. No study was excluded in this stage.

Data extraction and analysis

We employed a data extraction form that encompassed several key characteristics, including author(s), year, journal, country, details about method/design, participants and socioeconomics, aim, and main results (Table 2 ). The collected data were analyzed and synthesized using the thematic synthesis approach of Thomas and Harden [ 37 ]. This approach encompassed all text categorized as 'results' or 'findings' in study reports – which sometimes included abstracts, although the presentation wasn’t always consistent throughout the text. The size of the study reports ranged from a few sentences to a single page. The synthesis occurred through three interrelated stages that partially overlapped: coding of the findings from primary studies on a line-by-line basis, organization of these 'free codes' into interconnected areas to construct 'descriptive' themes, and the formation of 'analytical' themes.

The objective of this scoping review has been to investigate the literature concerning how children and youth (ages 10—25) conceptualize and perceive mental health. Based on the established inclusion- and exclusion criteria, a total of 11 articles were included representing the United Kingdom ( n  = 6), Australia ( n  = 3), and Sweden ( n  = 2) and were published between 2002 and 2020. Among these, two studies involved university students, while nine incorporated students from compulsory schools.

Salient aspects of children and youth’ perceptions of mental health

Based on the results of the included articles, salient aspects of children’s and youths’ understandings revealed uncertainties about mental health in various ways. This uncertainty emerged as conflicting perceptions, uncertainty about the concept of mental health, and uncertainty regarding where to distinguish between mild to moderate mental health problems and everyday stressors or challenges.

One uncertainty was associated with conflicting perceptions that mental health might be interpreted differently among children and youths, depending on whether it relates to their own mental health or someone else's mental health status. Chisholm et al. [ 42 ] presented this as distinctions being made between ‘them and us’ and between ‘being born with it’. Mental health and mental illness were perceived as a continuum that rather developed’, and distinctions were drawn between ‘crazy’ and ‘diagnosed.’ Participants established strong associations between the term mental illness and derogatory terms like ‘crazy,’ linking extreme symptoms of mental illness with others. However, their attitude was less stigmatizing when it came to individual diagnoses, reflecting a more insightful and empathetic understanding of the adverse impacts of stress based on their personal realities and experiences. Despite the initial reactions reflecting negative stereotypes, further discussion revealed that this did not accurately represent a deeper comprehension of mental health and mental illness.

There was also uncertainty about the concept of mental health , as it was not always clearly understood among the participating youth. Some participants were unable to define mental health, often confusing it with mental illness [ 28 ]. Others simply stated that they did not understand the term, as in O’Reilly [ 44 ]. Additionally, uncertainty was expressed regarding whether mental health was a positive or negative concept [ 27 , 28 , 40 , 44 ], and participants associated mental health with mental illness despite being asked about mental health [ 28 ]. One quote from a grade 9 student illustrates this: “ Interviewer: Can mental health be positive as well? Informant: No, it’s mental” [ 44 ]. In Laidlaw et al. [ 46 ], with participants ranging from 18—22 years of age, most considered mental health distinctly different from and more clinical than mental well-being. However, Roose et al. [ 38 ], for example, the authors discovered a more multifaceted understanding of mental health, encompassing emotions, thoughts, and behavior. In Molenaar et al.[ 45 ], mental health was highlighted as a crucial aspect of health overall. In Chisholm et al. [ 42 ], the older age groups discussed mental health in a more positive sense when they considered themselves or people they knew, relating mental health to emotional well-being. Connected to the uncertainty in defining the concept of mental health was the uncertainty in identifying those with good or poor mental health. Due to the lack of visible proof, children and youths might doubt their peers’ reports of mental illness, wondering if they were pretending or exaggerating their symptoms [ 27 ].

A final uncertainty that emerged was difficulties in drawing the line between psychiatric conditions and mild to moderate mental health problems and everyday stressors or challenges . Perre et al. [ 43 ] described how the participants in their study were uncertain about the meaning of mental illness and mental health issues. While some linked depression to psychosis, others related it to simply ‘feeling down.’ However, most participants indicated that, in contrast to transient feelings of sadness, depression is a recurring concern. Furthermore, the duration of feeling depressed and particularly a loss of interest in socializing was seen as appropriate criteria for distinguishing between ‘feeling down’ and ‘clinical depression.’ Since feelings of anxiety, nervousness, and apprehension are common experiences among children and youth, defining anxiety as an illness as opposed to an everyday stressor was more challenging [ 43 ].

Terms used to conceptualize mental health

When children and youth were asked about mental health, they sometimes used neutral terms such as thoughts and emotions or a general ‘vibe’ [ 27 ], and some described it as ‘peace of mind’ and being able to balance your emotions [ 38 ]. The notion of mental health was also found to be closely linked with rationality and the idea of normality, although, according to the young people, Armstrong et al. [ 28 ], there was no consensus about what ‘normal’ meant. Positive aspects of mental health were described by the participants as good self-esteem, confidence [ 40 ], happiness [ 39 , 43 ], optimism, resilience, extraversion and intelligence [ 27 ], energy [ 43 ], balance, harmony [ 39 , 43 ], good brain, emotional and physical functioning and development, and a clear idea of who they are [ 27 , 41 ]. It also included a feeling of being a good person, feeling liked and loved by your parents, social support, and having people to talk with [ 27 , 39 ], as well as being able to fit in with the world socially and positive peer relationships [ 41 ], according to the children and youths, mental health includes aspects related to individuals (individual factors) as well as to people in their surroundings (relationships). Regarding mental illness, participants defined it as stress and humiliation [ 40 ], psychological distress, traumatic experiences, mental disorders, pessimism, and learning disabilities [ 27 ]. Also, in contrast to the normality concept describing mental health, mental illness was described as somehow ‘not normal’ or ‘different’ in Chisholm et al. [ 42 ].

Depression and bipolar disorder were the most often mentioned mental illnesses [ 27 ]. The inability to balance emotions was seen as negative for mental health, for example, not being able to set aside unhappiness, lying to cover up sadness, and being unable to concentrate on schoolwork [ 38 ]. The understanding of mental illness also included feelings of fear and anxiety [ 42 ]. Other participants [ 46 ] indicated that mental health is distinctly different from, and more clinical than, mental well-being. In that sense, mental health was described using reinforcing terms such as ‘serious’ and ‘clinical,’ being more closely connected to mental illness, whereas mental well-being was described as the absence of illness, feeling happy, confident, being able to function and cope with life’s demands and feeling secure. Among younger participants, a more varied and vague understanding of mental health was shown, framing it as things happening in the brain or in terms of specific conditions like schizophrenia [ 44 ].

Gender, age, socioeconomic status

Only one study had a gender theoretical perspective [ 40 ], but the focus of this perspective concerned gender differences in what influences mental health more than the conceptualization of mental health. According to Johansson et al.[ 39 ], older girls expressed deeper negative emotions (e.g., described feelings of lack of meaning and hope in various ways) than older boys and younger children.

Several of the included studies noticed differences in age, where younger participants had difficulty understanding the concept of mental health [ 39 , 44 ], while older participants used more words to explain it [ 39 ]. Furthermore, older participants seemed to view mental health and mental illness as a continuum, with mental illness at one end of the continuum and mental well-being at the other end [ 42 , 46 ].

Socioeconomic status

The role of socioeconomic status was only discussed by Armstrong et al. [ 28 ], finding that young people from schools in the most deprived and rural areas experienced more difficulties defining the term mental health compared to those from a less deprived area.

This scoping review aimed to map children's and youth’s perceptions and conceptualizations of mental health. Our main findings indicate that the concept of mental health is surrounded by uncertainty. This raises the question of where this uncertainty stems from and what it symbolizes. From our perspective, this uncertainty can be understood from two angles. Firstly, the young participants in the different studies show no clear and common understanding of mental health; they express uncertainty about the meaning of the concept and where to draw the line between life experiences and psychiatric conditions. Secondly, uncertainty exists regarding how to apply these concepts in research, making it challenging to interpret and compare research results. The shift from a positivistic understanding of mental health as an objective condition to a more subjective inner experience has left the conceptualization open ranging from a pathological phenomenon to a normal and common human experience [ 47 ]. A dilemma that results in a lack of reliability that mirrors the elusive nature of the concept of mental health from both a respondent and a scientific perspective.

“Happy” was commonly used to describe mental health, whereas "unhappy" was used to describe mental illness. The meaning of happiness for mental health has been acknowledged in the literature, and according to Layard et al. [ 48 ], mental illness is one of the main causes of unhappiness, and happiness is the ultimate goal in human life. Layard et al. [ 48 ] suggest that schools and workplaces need to raise more awareness of mental health and strive to improve happiness to promote mental health and prevent mental illness. On the other hand, being able to experience and express different emotions could also be considered a part of mental health. The notion of normality also surfaced in some studies [ 38 ], understanding mental health as being emotionally balanced or normal or that mental illness was not normal [ 42 ]. To consider mental illness in terms of social norms and behavior followed with the sociological alternative to the medical model that was introduced in the sixties portraying mental illness more as socially unacceptable behavior that is successfully labeled by others as being deviant. Although our results did not indicate any perceptions of what ‘normal’ meant [ 28 ], one crucial starting point to the understanding of mental health among adolescents should be to delineate what constitutes normal functioning [ 23 ]. Children and youths’ understanding of mental illness seems to a large extent, to be on the same continuum as a normality rather than representing a medicalization of deviant behavior and a disjuncture with normality [ 49 ].

Concerning gender, it seemed that girls had an easier time conceptualizing mental health than boys. This could be due to the fact that girls mature verbally faster than boys [ 50 ], but also that girls, to a larger extent, share feelings and problems together compared to boys [ 51 ]. However, according to Johansson et al. [ 39 ], the differences in conceptualizations of mental health seem to be more age-related than gender-related. This could be due to the fact that older children have a more complex view of mental health compared to younger children.. Not surprisingly, the older the children and youth were, the more complex the ability to conceptualize mental health becomes. Only one study reported socioeconomic differences in conceptualizations of mental health [ 28 ]. This could be linked to mental health literacy (MHL) [ 18 ], i.e., knowledge about mental illness, how to prevent mental illness, and help-seeking behavior. Research has shown that disadvantaged social and socioeconomic conditions are associated with low MHL, that is, people with low SES tends to know less about symptoms and prevalence of different mental health problems [ 19 , 21 ]. The perception and conceptualizations of mental health are, as we consider, strongly related to knowledge and beliefs about mental health, and according to von dem Knesebeck et al. [ 52 ] linked primarily to SES through level of education.

Chisholm et al. [ 42 ] found that the initial reactions from participants related to negative stereotypes, but further discussion revealed that the participants had more refined knowledge than at first glance. This illuminates the importance of talking to children and helping them verbalize their feelings, in many respects complex and diversified understanding of mental health. It is plausible that misunderstandings and devaluations of mental health and mental illness may increase self-reported mental health problems [ 5 ], as well as decrease them, preventing children and youth from seeking help. Therefore, increased knowledge of the nature of mental health can help individual cope with the situations and improve their mental well-being. Finding ways to incorporate discussions about mental well-being, mental health, and mental illness in schools could be the first step to decreasing the existing uncertainties about mental health. Experiencing feelings of sadness, anger, or upset from time to time is a natural part of life, and these emotions are not harmful and do not necessarily indicate mental illness [ 5 , 6 ]. Adolescents may have an understanding of the complexity of mental health despite using simplified language but may need guidance on how to communicate their feelings and how to manage everyday challenges and normal strains in life [ 7 ].

With the aim of gaining a better understanding of how mental health is perceived among children and youth, this study has highlighted the concept’s uncertainty. Children and youth reveal a variety of understandings, from diagnoses of serious mental illnesses such as schizophrenia to moods and different types of behaviors. Is there only one way of understanding mental health, and is it reasonable to believe that we can reach a consensus? Judging by the questions asked, researchers also seem to have different ideas on what to incorporate into the concept of mental health — the researchers behind the present study included. The difficulties in differentiating challenges being part of everyday life with mental health issues need to be paid closer attention to and seems to be symptomatic with the lack of clarity of the concepts.

A constructivist approach would argue that the language of mental health has changed over time and thus influence how adolescents, as well as society at large, perceive, talk about, and report their mental health [ 26 ]. The re-construction or adaptation of concepts could explain why children and youth re struggling with the meaning of mental health and that mental health often is used interchangeably with mental illness. Mental health, rather than being an umbrella term, then represents a continuum with a positive and a negative end, at least among older adolescents. But as mental health according to this review also incorporates subjective expressions of moods and feelings, the reconstruction seems to have shaped it into a multidimensional concept, representing a horizontal continuum of positive and negative mental health and a vertical continuum of positive and negative well-being, similar to the health cross by Tudor [ 53 ] referred to in Laidlaw et al. [ 46 ] A multidimensional understanding of mental health constructs also incorporates evidence from interventions aimed at reducing mental health stigma among adolescents, where attitudes and beliefs as well as emotional responses towards mental health are targeted [ 54 ].

The contextual understanding of mental health, whether it is perceived in positive terms or negative, started with doctors and psychiatrists viewing it as representing a deviation from the normal. A perspective that has long been challenged by health workers, academics and professionals wanting to communicate mental health as a positive concept, as a resource to be promoted and supported. In order to find a common ground for communicating all aspects and dimensions of mental health and its conceptual constituents, it is suggested that we first must understand the subjective meaning ascribed to the use of the term [ 26 ]. This line of thought follows a social-constructionist approach viewing mental health as a concept that has transitioned from representing objective mental descriptions of conditions to personal subjective experiences. Shifting from being conceptualized as a pathological phenomenon to a normal and common human experience [ 47 ]. That a common understanding of mental health can be challenged by the healthcare services tradition and regulation for using diagnosis has been shown in a study of adolescents’ perspectives on shared decision-making in mental healthcare [ 55 ]. A practice perceived as labeling by the adolescents, indicating that steps towards a common understanding of mental health needs to be taken from several directions [ 55 ]. In a constructionist investigation to distinguish everyday challenges from mental health problems, instead of asking the question, “What is mental health?” we should perhaps ask, “How is the word ‘mental health’ used, and in what context and type of mental health episode?” [ 26 ]. This is an area for future studies to explore.

Methodological considerations

The first limitation we want to acknowledge, as for any scoping review, is that the results are limited by the search terms included in the database searches. However, by conducting the searches with the help of an experienced librarian we have taken precautions to make the searches as inclusive as possible. The second limitation concerns the lack of homogeneous, or any results at all, according to different age groups, gender, socioeconomic status, and year when the study was conducted. It is well understood that age is a significant determinant in an individual’s conceptualization of more abstract phenomena such as mental health. Some of the studies approached only one age group but most included a wide age range, making it difficult to say anything specific about a particular age. Similar concerns are valid for gender. Regarding socioeconomic status, only one study reported this as a finding. However, this could be an outcome of the choice of methods we had — i.e., qualitative methods, where the aim seldom is to investigate differences between groups and the sample is often supposed to be a variety. It could also depend on the relatively small number of participants that are often used in focus groups of individual interviews- there are not enough participants to compare groups based on gender or socioeconomic status. Finally, we chose studies from countries that could be viewed as having similar development and perspective on mental health among adolescents. Despite this, cultural differences likely account for many youths’ conceptualizations of mental health. According to Meldahl et al. [ 56 ], adolescents’ perspectives on mental health are affected by a range of factors related to cultural identity, such as ethnicity, race, peer and family influence, religious and political views, for example. We would also like to add organizational cultures, such as the culture of the school and how schools work with mental health and related concepts [ 56 ].

Conclusions and implications

Based on our results, we argue that there is a need to establish a common language for discussing mental health. This common language would enable better communication between adults and children and youth, ensuring that the content of the words used to describe mental health is unambiguous and clear. In this endeavor, it is essential to actively listen to the voices of children and youth, as their perspectives will provide us with clearer understanding of the experiences of being young in today’s world. Another way to develop a common language around mental health is through mental health education. A common language based on children’s and youth’s perspectives can guide school personnel, professionals, and parents when discussing and planning health interventions and mental health education. Achieving a common understanding through mental health education of adults and youth could also help clarify the boundaries between everyday challenges and problems needing treatment. It is further important to raise awareness of the positive aspect of mental health—that is, knowledge of what makes us flourish mentally should be more clearly emphasized in teaching our children and youth about life. It should also be emphasized in competence development for school personnel so that we can incorporate knowledge about mental well-being in everyday meetings with children and youth. In that way, we could help children and youth develop knowledge that mental health could be improved or at least maintained and not a static condition.

Availability of data and materials

All data generated or analyzed during this study are included in this published article [and its supplementary information files].

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Linda Beckman & Sven Hassler

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L.B and L.H conducted the literature search and scanned the abstracts. L.B drafted the manuscript, figures, and tables. All (L.B, L.H., S.H.) authors discussed and wrote the results, as well as the discussion. All authors reviewed the manuscript.

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Beckman, L., Hassler, S. & Hellström, L. Children and youth’s perceptions of mental health—a scoping review of qualitative studies. BMC Psychiatry 23 , 669 (2023). https://doi.org/10.1186/s12888-023-05169-x

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Children’s Mental Health Research

• Mental health in the community
• Different data sources
• National data sets

Research on children’s mental health in the community

Project to learn about youth – mental health.

The Project to Learn About Youth – Mental Health (PLAY-MH) analyzed information collected from four communities. The focus was to study attention-deficit/hyperactivity disorder (ADHD)  and other  externalizing and internalizing  disorders, as well as  tic disorders  in school-aged children. The purpose was to learn more about public health prevention and intervention strategies to support children’s health and development.

Read about the results of the Play-MH study

Study questions included:

• What percentage of children in the community had one or more externalizing, internalizing, or tic disorders?
• How frequently did these disorders appear together?
• What types of treatment were children receiving in their communities?

This project used the same methodology as the original Project to Learn about ADHD in Youth (PLAY) project.  Read more about the original study approach here .

Other research

Read more about research on

• Tourette syndrome

CDC and partner agencies are working to understand the prevalence of mental disorders in children and how they impact their lives. Currently, it is not known exactly how many children have any mental disorder, or how often different disorders occur together, because no national dataset is available that looks at all mental, emotional, or behavioral disorders together.

Research on prevalence

What is It and Why is It Important?

Using different data sources

Healthcare providers, public health researchers, educators, and policy makers can get information about the prevalence of children’s mental health disorders from a variety of sources. Data sources, such as national surveys, community-based studies, and administrative claims data (like healthcare insurance claims), use different study methods and provide different types of information, each with advantages and disadvantages. Advantages and disadvantages for different data sources include the following:

• National surveys have large sample sizes that are needed to create estimates at the national and state levels. However, they also generally use a parent’s report of the child’s diagnosis, which means that the healthcare provider has to give an accurate diagnosis and the parent has to accurately remember what it was.
• Community-based studies offer the opportunity to observe children’s symptoms, which means that even children who have not been diagnosed or do not have the right diagnosis could be found. However, these studies are typically done in small geographic areas, so findings are not necessarily the same in other communities.
• Administrative claims are typically very large datasets with information on diagnosis and treatment directly from the providers, which allows tracking changes over time. Because they are recorded for billing purposes, diagnoses or services that would not be reimbursed from the specific health insurance might not be recorded in the data.

Using different sources of data together provides more information because it is possible to describe the following:

• Children with a diagnosed condition compared to children who have the same symptoms, but are not diagnosed
• Differences between populations with or without health insurance
• How estimates for mental health disorders change over time

Read more about using different data sources.

National data on children’s mental health

A comprehensive report from the Centers for Disease Control and Prevention (CDC), Mental Health Surveillance Among Children — United States, 2013 – 2019 , described federal efforts on monitoring mental disorders, and presented estimates of the number of children with specific mental disorders as well as for positive indicators of mental health. The report was developed in collaboration with the Substance Abuse and Mental Health Services Administration (SAMHSA ), the National Institute of Mental Health (NIMH ), and the Health Resources and Services Administration (HRSA ). It represents an update to the first ever cross-agency children’s mental health surveillance report in 2013.

Read a summary of the findings for the current report using data from 2012-2019

Read a summary of the findings for the first report using data from 2005-2011 .

The goal is now to build on the strengths of federal agencies serving children with mental disorders to:

• Develop better ways to document how many children have these disorders,
• Better understand the impacts of mental disorders,
• Inform needs for treatment and intervention strategies, and
• Promote the mental health of children.

This report is an important step on the road to recognizing the impact of childhood mental disorders and developing a public health approach to address children’s mental health.

Holbrook JR, Bitsko RB, Danielson ML, Visser SN. Interpreting the Prevalence of Mental Disorders in Children: Tribulation and Triangulation. Health Promotion Practice. Published online November 15, 2016 https://www.ncbi.nlm.nih.gov/pubmed/27852820 .

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A Children's Health Perspective on Nano- and Microplastics

Affiliations.

• 1 Centre for Digital Life Norway, Norwegian University of Science and Technology (NTNU), Trondheim, Norway.
• 2 Centre for Global Health Inequalities Research (CHAIN), NTNU, Trondheim, Norway.
• 3 Ergonomics and Aerosol Technology, Lund University, Lund, Sweden.
• 4 Centre for Healthy Indoor Environments, Lund University, Lund, Sweden.
• 5 Arctic Health, Faculty of Medicine, University of Oulu, Oulu, Finland.
• 6 Department of Pesticides, Menoufia University, Menoufia, Egypt.
• 7 Institute of Environmental Assessment and Water Research, Barcelona, Catalonia, Spain.
• 8 Department of Materials Science and Engineering, NTNU, Trondheim, Norway.
• 9 School of Health Systems and Public Health, Faculty of Health Sciences, University of Pretoria, Pretoria, South Africa.
• 10 Environment and Health Research Unit, Medical Research Council, Johannesburg, South Africa.
• 11 Department of Occupational Medicine and Public Health, Faroese Hospital System, Faroe Islands.
• 12 Department of Public Health and Nursing, Faculty of Medicine and Health Science, NTNU, Trondheim, Norway.
• 13 Laboratoire Biogéochimie des Contaminants Organiques, Institut français de recherche pour l'exploitation de la mer, Nantes, France.
• 14 Department of Biotechnology and Nanomedicine, SINTEF Industry, Trondheim, Norway.
• 15 Arctic Health, Thule Institute, University of Oulu and University of the Arctic, Oulu, Finland.
• 16 Department of General Hygiene, I.M. Sechenov First Moscow State Medical University, Moscow, Russia.
• 17 Department of Biology, NTNU, Trondheim, Norway.
• PMID: 35080434
• PMCID: PMC8791070
• DOI: 10.1289/EHP9086

Background: Pregnancy, infancy, and childhood are sensitive windows for environmental exposures. Yet the health effects of exposure to nano- and microplastics (NMPs) remain largely uninvestigated or unknown. Although plastic chemicals are a well-established research topic, the impacts of plastic particles are unexplored, especially with regard to early life exposures.

Objectives: This commentary aims to summarize the knowns and unknowns around child- and pregnancy-relevant exposures to NMPs via inhalation, placental transfer, ingestion and breastmilk, and dermal absorption.

Methods: A comprehensive literature search to map the state of the science on NMPs found 37 primary research articles on the health relevance of NMPs during early life and revealed major knowledge gaps in the field. We discuss opportunities and challenges for quantifying child-specific exposures (e.g., NMPs in breastmilk or infant formula) and health effects, in light of global inequalities in baby bottle use, consumption of packaged foods, air pollution, hazardous plastic disposal, and regulatory safeguards. We also summarize research needs for linking child health and NMP exposures and address the unknowns in the context of public health action.

Discussion: Few studies have addressed child-specific sources of exposure, and exposure estimates currently rely on generic assumptions rather than empirical measurements. Furthermore, toxicological research on NMPs has not specifically focused on child health, yet children's immature defense mechanisms make them particularly vulnerable. Apart from few studies investigating the placental transfer of NMPs, the physicochemical properties (e.g., polymer, size, shape, charge) driving the absorption, biodistribution, and elimination in early life have yet to be benchmarked. Accordingly, the evidence base regarding the potential health impacts of NMPs in early life remains sparse. Based on the evidence to date, we provide recommendations to fill research gaps, stimulate policymakers and industry to address the safety of NMPs, and point to opportunities for families to reduce early life exposures to plastic. https://doi.org/10.1289/EHP9086.

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• Research Support, Non-U.S. Gov't
• Child Health
• Environmental Exposure
• Microplastics*
• Tissue Distribution
• Microplastics

The DHS Program

• Childhood Mortality
• Family Planning
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• MORE TOPICS
• Alcohol and Tobacco
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What child health-related data does The DHS Program collect?

DHS surveys routinely collect data on vaccination of children, prevalence and treatment of acute respiratory infections (ARI) and fever , and diarrhea . Prevention and treatment of malaria in children is usually presented in the malaria chapter of DHS final reports.

What are the DHS indicators related to child health?

• Vaccinations by source of information
• Vaccinations by background characteristics
• Prevalence and treatment of acute respiratory infection and of fever
• Diarrhea prevalence
• Hand-washing materials and facilities
• Disposal of child's stools
• Knowledge of diarrhea care
• Treatment of diarrhea
• Feeding practices during diarrhea

DHS surveys routinely collect data on infant and child mortality.

What are the SPA indicators related to child health?

SPA surveys collect a large range of child health service provision indicators. The SPA is designed to assess the availability of preventive services (such as immunization and growth monitoring) and outpatient care for sick children.

• Measuring Immunizations: The SPA examines adherence to the Expanded Program of Immunization (EPI) which includes one dose of TB (BCG) and measles vaccines and three doses of DPT and polio vaccines.
• Growth Monitoring: The SPA includes weighing of children and plotting the weight against standards to identify nutritional problems.
• Quality of Care for the Sick Child: The SPA assesses the availability of equipment, supplies and health system components necessary to provide quality outpatient care for sick children. Observation of the provider-patient interaction allows for evaluation of counseling and treatment, as well as adherence to IMCI (Integrated Management of Childhood Illness) protocols .

What is child health?

Child health refers to the period between birth and five years old when children are particularly vulnerable to disease, illness and death. From one month to five years of age, the main causes of death are pneumonia, diarrhea, malaria, measles and HIV . Malnutrition is estimated to contribute to more than one third of all child deaths. Pneumonia is the prime cause of death in children under five years of age. Nearly three-quarters of all cases occur in just 15 countries. Addressing the major risk factors – including malnutrition and indoor air pollution – is essential to preventing pneumonia, as are vaccination and breastfeeding. Diarrheal diseases are a leading cause of sickness and death among children in developing countries. Breastfeeding helps prevent diarrhea among young children. Treatment for sick children with oral rehydration salts (ORS) combined with zinc supplements is safe, cost-effective, and saves lives. Though it is preventable with immunization, measles still kills an estimated 164,000 people each year – mostly children less than five years of age. A major factor contributing to child mortality is malnutrition, which weakens children and reduces their resistance to disease. About 20 million children under five worldwide are severely malnourished.

Photo credit: © 2007 Leah Gilbert, Courtesy of Photoshare. An Inca child in the Andes Mountains of Peru.

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• Immunization Summary: a statistical reference containing data through 2009
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Pediatric Nursing Research Topics for Students: A Comprehensive Guide

This article was written in collaboration with Christine T. and ChatGPT, our little helper developed by OpenAI.

Pediatric nursing is a rewarding and specialized field that focuses on the care of infants, children, and adolescents. Research in pediatric nursing plays a crucial role in advancing knowledge, improving patient outcomes, and informing evidence-based practice. This article aims to provide a comprehensive guide on pediatric nursing research topics for students, offering examples and tips to help you select the perfect topic for your project.

Common Areas of Pediatric Nursing Research

Pediatric nursing research encompasses a wide range of topics aimed at improving the health and well-being of children. Find below some of the most common areas of research.

Neonatal and Infant Care

This area of research focuses on the health and development of newborns and infants, as well as the interventions and strategies that can enhance their well-being. Studies may investigate the impact of skin-to-skin contact on neonatal outcomes, the role of breastfeeding in infant nutrition and health, and the efficacy of various interventions for premature infants, such as music therapy, to reduce stress and improve development.

Topic Examples to Explore:

• The impact of skin-to-skin contact on neonatal bonding and breastfeeding success
• The role of kangaroo care in improving outcomes for preterm infants
• Strategies for managing neonatal abstinence syndrome in infants exposed to opioids in utero
• The effectiveness of different neonatal resuscitation techniques
• The impact of maternal mental health on infant development and attachment
• The role of probiotics in preventing necrotizing enterocolitis in preterm infants
• The benefits of human milk fortifiers for premature infants
• The long-term effects of neonatal intensive care unit (NICU) environments on infant development
• The impact of neonatal jaundice on infant health and development
• The role of early intervention in improving outcomes for infants with congenital heart disease
• The benefits of non-invasive ventilation techniques in neonatal care
• The impact of delayed cord clamping on infant health
• The role of family-centered care in the NICU
• The effectiveness of developmental care interventions in the NICU
• The impact of neonatal hypoglycemia on long-term outcomes
• The role of therapeutic hypothermia in the management of hypoxic-ischemic encephalopathy
• The impact of various feeding methods on growth and development in preterm infants
• The effectiveness of music therapy for reducing stress and promoting development in the NICU
• The role of antibiotics in preventing early-onset neonatal sepsis
• The impact of antenatal corticosteroids on neonatal respiratory outcomes
• The effectiveness of non-pharmacological interventions for neonatal pain relief
• The role of parental involvement in infant care in the NICU
• The impact of noise and light reduction strategies on infant outcomes in the NICU

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Child Development and Growth

Research in this area examines the various factors that influence a child’s physical, cognitive, and emotional development. Topics may include the effects of parenting styles on children’s behavior, the role of nutrition in growth and development, and the impact of early intervention programs on cognitive and language development.

• The effects of parenting styles on children’s cognitive and emotional development
• The impact of screen time on children’s language and social skills
• The role of play in promoting cognitive, social, and emotional development
• The impact of early literacy interventions on children’s reading skills and academic achievement
• The effects of childhood nutrition on cognitive development and school performance
• The role of sleep in children’s growth and development
• The impact of early intervention programs on language development in children with hearing loss
• The effectiveness of physical activity interventions for promoting motor development in children with disabilities
• Bridging the gap: tackling maternal and child health disparities between developed and underdeveloped countries
• The role of attachment and bonding in early childhood development
• The impact of adverse childhood experiences on cognitive and emotional development
• The role of cultural factors in shaping children’s development and socialization
• The effects of poverty on children’s cognitive, social, and emotional development
• The impact of preschool and kindergarten programs on children’s school readiness
• The role of creativity in promoting cognitive and emotional development in children
• The impact of bilingualism on children’s cognitive development and academic achievement
• The effects of parental involvement on children’s academic success and social development
• The role of nutrition in preventing stunted growth and promoting healthy development
• The impact of early exposure to music on children’s cognitive and social development
• The effectiveness of interventions for promoting resilience in children exposed to trauma
• The role of sports and physical activity in promoting children’s mental health and well-being
• The impact of bullying on children’s social and emotional development
• The role of peer relationships in children’s social and emotional development
• The effects of parental mental health on children’s development and well-being

Pediatric Mental Health

With increasing awareness of mental health issues in children, research in this area is crucial to understanding and addressing the mental health needs of young patients. Studies may explore the prevalence and risk factors of various mental health disorders, such as autism, ADHD, and depression, as well as the effectiveness of interventions, such as cognitive-behavioral therapy and psychopharmacological treatments.

• The prevalence and impact of anxiety disorders in children and adolescents
• The effectiveness of cognitive-behavioral therapy for treating childhood depression
• The role of early intervention in preventing and treating childhood trauma and post-traumatic stress disorder (PTSD)
• The impact of bullying on the mental health of children and adolescents
• The relationship between autism spectrum disorders and mental health challenges in children
• The effectiveness of play therapy in addressing emotional and behavioral issues in children
• The role of family therapy in promoting positive mental health outcomes for children and adolescents
• The impact of substance abuse on the mental health of adolescents
• The effectiveness of school-based mental health interventions for children and adolescents
• The role of peer support in promoting positive mental health outcomes in children and adolescents
• The impact of social media on the mental health of children and adolescents
• The effectiveness of mindfulness-based interventions for promoting mental health in children and adolescents
• The role of resilience in protecting children’s mental health
• The impact of adverse childhood experiences on the development of mental health disorders in children and adolescents
• The effectiveness of early intervention programs for children at risk of developing mental health disorders
• The role of cultural factors in shaping children’s mental health and well-being
• The impact of parenting styles on children’s mental health outcomes
• The effectiveness of pharmacological interventions for treating mental health disorders in children and adolescents
• The role of sleep in promoting mental health and well-being in children and adolescents
• The impact of chronic illness on the mental health of children and adolescents
• The effectiveness of art therapy in promoting mental health and well-being in children and adolescents
• The role of sports and physical activity in promoting mental health and well-being in children and adolescents
• The impact of parental mental health on children’s mental health and well-being

Childhood Chronic Illness

Research in this area investigates the management, treatment, and long-term outcomes of chronic conditions in children, such as asthma, diabetes, and cystic fibrosis. Studies may examine the effectiveness of different management strategies, the role of family support in disease management, and the impact of these conditions on children’s quality of life.

• The impact of chronic illness on children’s growth and development
• The role of family-centered care in the management of childhood chronic illnesses
• The effectiveness of transition programs for adolescents with chronic illnesses moving to adult healthcare services
• The impact of school-based interventions for children with chronic illnesses
• The role of psychosocial interventions in promoting positive outcomes for children with chronic illnesses
• The impact of chronic illness on children’s mental health and well-being
• The effectiveness of telehealth interventions for managing childhood chronic illnesses
• The role of nutrition in the management of chronic illnesses in children
• The impact of chronic illness on children’s academic achievement and school performance
• The role of parent and caregiver support in managing childhood chronic illnesses
• The effectiveness of pain management strategies for children with chronic illnesses
• The impact of chronic illness on children’s social and emotional development
• The role of peer support in promoting positive outcomes for children with chronic illnesses
• The effectiveness of exercise and physical activity interventions for children with chronic illnesses
• The impact of chronic illness on the family system and sibling relationships
• The role of cultural factors in shaping the experiences of children with chronic illnesses
• The effectiveness of community-based programs for supporting children with chronic illnesses
• The impact of chronic illness on children’s quality of life
• The role of healthcare coordination in the management of childhood chronic illnesses
• The effectiveness of integrative medicine approaches for managing chronic illnesses in children
• The impact of chronic illness on children’s self-concept and identity development
• The role of health literacy in promoting positive outcomes for children with chronic illnesses
• The effectiveness of technology-based interventions for managing childhood chronic illnesses

Pediatric Pain Management

Pain is a common issue faced by children in various healthcare settings, and research in this area seeks to better understand and manage pain in pediatric patients. Topics may include the assessment of pain in children, the use of pharmacological and non-pharmacological interventions for pain relief, and the impact of pain management strategies on children’s recovery and well-being.

• The effectiveness of non-pharmacological interventions for managing pediatric pain
• The role of pharmacological interventions in pediatric pain management
• The impact of pain on children’s growth, development, and well-being
• The effectiveness of alternative and complementary therapies in pediatric pain management
• The role of family-centered care in the management of pediatric pain
• The impact of pediatric pain on children’s mental health and quality of life
• The effectiveness of cognitive-behavioral strategies for managing pediatric pain
• The role of age-appropriate pain assessment tools in guiding pediatric pain management
• Pediatric oncology: working towards better treatment through evidence-based research
• The impact of chronic pain on children’s school performance and social functioning
• The role of healthcare professionals in providing education and support for pediatric pain management
• The effectiveness of interdisciplinary pain management teams for children with complex pain needs
• The impact of pediatric pain on the family system and sibling relationships
• The role of cultural factors in shaping pediatric pain management practices
• The effectiveness of technology-based interventions for managing pediatric pain
• The impact of pediatric pain on children’s self-concept and identity development
• The role of pain management in promoting positive outcomes for children undergoing surgery or medical procedures
• The effectiveness of integrative medicine approaches for managing pediatric pain
• The impact of pain on children’s sleep and daily functioning
• The role of preventive strategies in reducing pediatric pain associated with common childhood conditions
• The effectiveness of early intervention programs for children at risk of developing chronic pain
• The impact of pain on children’s physical activity levels and participation in sports
• The role of peer support in promoting positive outcomes for children with chronic pain
• The effectiveness of parent and caregiver support interventions for managing pediatric pain

Health Promotion and Disease Prevention

This area of research aims to identify and implement strategies to promote health and prevent illness in children. Topics may include the effectiveness of vaccination programs, the role of physical activity and nutrition in childhood obesity prevention, and the impact of health education programs on children’s health behaviors.

• The role of childhood immunizations in preventing infectious diseases
• The impact of school-based health promotion programs on children’s health behaviors and outcomes
• The effectiveness of nutrition education interventions for promoting healthy eating habits in children
• The role of physical activity interventions in preventing childhood obesity and promoting healthy growth
• The impact of dental health promotion programs on children’s oral health outcomes
• The effectiveness of sun safety education for preventing skin cancer in children and adolescents
• Pediatric nursing: caring for children and fostering a healthy future
• The role of parental involvement in promoting health behaviors and preventing disease in children
• The impact of community-based health promotion programs on children’s health and well-being
• The effectiveness of early intervention programs for preventing and managing childhood asthma
• The role of mental health promotion interventions in preventing mental health disorders in children and adolescents
• The impact of anti-bullying programs on children’s mental health and well-being
• The effectiveness of substance abuse prevention programs for children and adolescents
• The role of sexual health education in preventing sexually transmitted infections and promoting healthy relationships in adolescents
• The impact of environmental interventions on reducing children’s exposure to allergens and pollutants
• The effectiveness of sleep hygiene education for promoting healthy sleep habits in children and adolescents
• The role of injury prevention programs in reducing the incidence of childhood injuries and accidents
• The impact of tobacco, alcohol, and drug prevention programs on children’s health and well-being
• The effectiveness of child passenger safety education for preventing motor vehicle-related injuries in children
• The role of health literacy interventions in promoting healthy behaviors and preventing disease in children and adolescents
• Combating health care-associated infections: a community-based approach
• The impact of culturally sensitive health promotion programs on improving health outcomes for diverse pediatric populations
• The effectiveness of school-based mental health promotion programs for preventing suicide in children and adolescents
• The role of family-centered health promotion interventions in supporting overall child health and well-being
• The impact of public health policies on reducing health disparities and promoting health equity among children and adolescents

These topic examples should provide a comprehensive starting point for students interested in pediatric nursing research. By exploring various aspects of pediatric health, students can contribute to the growing body of knowledge and help improve care for children and their families.

Tips for selecting a pediatric nursing research topic

Choosing the right pediatric nursing research topic is an essential step in ensuring a successful research project. Here are some tips to help you select a topic that will be both engaging and valuable:

• Consider Your Interests:

Selecting a research topic that genuinely interests you will make the entire research process more enjoyable and motivating. Passion for your topic can lead to more in-depth research and better quality work.

• Scope and Feasibility:

Make sure your chosen topic is not too broad or too narrow. A topic with a manageable scope will allow you to explore it in-depth without becoming overwhelmed with information. Ensure that you have access to the necessary resources, such as literature, research tools, and study participants, to conduct your research effectively.

Choose a topic that is relevant to current pediatric nursing practice and has the potential to contribute to the field. Research that addresses current challenges and gaps in knowledge will be more likely to make a meaningful impact.

• Consult with Mentors and Colleagues:

Discuss your potential research topics with your professors, mentors, or fellow students to gain insights and feedback. They may provide valuable suggestions or help you refine your topic further.

• Review Existing Literature:

Conduct a thorough literature review to identify existing research in your area of interest. This will help you understand the current state of knowledge and identify gaps or areas that need further exploration.

• Ethical Considerations:

Ensure that your research topic adheres to ethical guidelines and does not pose any harm to your study participants or their families. Obtain any necessary ethical approvals from your institution or relevant governing bodies.

• Practical Implications:

Consider the potential practical implications of your research topic. Will your findings contribute to improving pediatric nursing practice or lead to the development of new interventions or policies?

• Align with Your Career Goals:

If possible, choose a research topic that aligns with your long-term career goals. This can help build a foundation for your professional development and establish expertise in your chosen area.

• Stay Updated with Current Trends:

Keep up-to-date with the latest trends and developments in pediatric nursing to ensure your research topic remains relevant and timely. Subscribe to relevant journals, attend conferences, and engage with professional organizations to stay informed.

• Be Flexible:

Remember that it’s okay to modify or refine your research topic as you progress. Be open to feedback and new ideas, and don’t be afraid to pivot your focus if necessary.

By following these tips, you can select a pediatric nursing research topic that is both engaging and valuable, contributing to the advancement of the field and your personal growth as a researcher.

Selecting a pediatric nursing research topic is an essential step in the research process. By exploring various areas of pediatric nursing and considering a wide range of topic examples, you can find the perfect subject for your project. Remember to choose a topic that interests you, is relevant and feasible, and consult with experts to ensure a successful research experience.

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• Published: 01 February 2021

Evidence for similar structural brain anomalies in youth and adult attention-deficit/hyperactivity disorder: a machine learning analysis

• Yanli Zhang-James   ORCID: orcid.org/0000-0002-2104-0963 1 ,
• Emily C. Helminen 2 ,
• Jinru Liu 3 ,
• The ENIGMA-ADHD Working Group ,
• Barbara Franke   ORCID: orcid.org/0000-0003-4375-6572 4 , 5 , 6 ,
• Martine Hoogman 4 , 5 &
• Stephen V. Faraone   ORCID: orcid.org/0000-0002-9217-3982 1 , 7  

Translational Psychiatry volume  11 , Article number:  82 ( 2021 ) Cite this article

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• Predictive markers
• Psychiatric disorders

Attention-deficit/hyperactivity disorder (ADHD) affects 5% of children world-wide. Of these, two-thirds continue to have impairing symptoms of ADHD into adulthood. Although a large literature implicates structural brain differences of the disorder, it is not clear if adults with ADHD have similar neuroanatomical differences as those seen in children with recent reports from the large ENIGMA-ADHD consortium finding structural differences for children but not for adults. This paper uses deep learning neural network classification models to determine if there are neuroanatomical changes in the brains of children with ADHD that are also observed for adult ADHD, and vice versa. We found that structural MRI data can significantly separate ADHD from control participants for both children and adults. Consistent with the prior reports from ENIGMA-ADHD, prediction performance and effect sizes were better for the child than the adult samples. The model trained on adult samples significantly predicted ADHD in the child sample, suggesting that our model learned anatomical features that are common to ADHD in childhood and adulthood. These results support the continuity of ADHD’s brain differences from childhood to adulthood. In addition, our work demonstrates a novel use of neural network classification models to test hypotheses about developmental continuity.

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Machine learning in attention-deficit/hyperactivity disorder: new approaches toward understanding the neural mechanisms

Attention-deficit/hyperactivity disorder

Predicting childhood and adolescent attention-deficit/hyperactivity disorder onset: a nationwide deep learning approach

Introduction.

Attention-deficit/hyperactivity disorder (ADHD) is a common disorder affecting 5% of children and 3% of adults 1 . It is associated with injuries 2 , traffic accidents 3 , increased health care utilization 4 , 5 , substance abuse 6 , 7 , criminality 8 , unemployment 1 , divorce 9 , suicide 10 , 11 , AIDS risk behaviors 12 , and premature mortality 13 . The cost of adult ADHD to society is between $77.5 and $115.9 billion each year 14 .

ADHD is highly heritable (76% heritability) 15 . A role for brain dysfunction in the etiology of ADHD was suspected for some time by the mechanism of action of the medications that treat ADHD 16 , as well as supported by findings from genome-wide association studies (GWAS) 17 , 18 . Although many prior magnetic resonance imaging (MRI) studies had suggested structural and functional differences between the brains of children with ADHD and those without 19 , 20 , 21 , 22 , 23 , 24 , 25 , machine learning (ML) MRI diagnostic classifiers for ADHD have reported inconsistent results. We and others have examined this body of literature and reported large variations in choices of MRI modalities, ML models, cross-validation and testing methods, and sample sizes. Notably, many prior studies risked data leakage and accuracy inflation by using cross-validation methods without an independent test set 26 . In addition, the largest dataset that ML classifiers have used thus far was the ADHD-200 Global Competition dataset consisting of 776 children, adolescents, and young adults (7–21 years old 27 ). Only a few studies examined classifiers for adults with ADHD and they all used extremely small datasets (<100 subjects 28 , 29 , 30 ).

The Enhancing Neuro Imaging Genetics Through Meta-Analysis (ENIGMA) ADHD Working Group created a large collaborative dataset with sufficient power to detect small effects. The ENIGMA-ADHD working group found small, statistically significant sub-cortical volumetric reductions 31 , cortical thinning, and reduced surface area 32 to be associated with ADHD in children but not adults. Two-thirds of youth with ADHD will continue to have impairing symptoms of the disorder into young adulthood and that persistence continues to decline with age 33 . The term adult ADHD refers to childhood onset ADHD that has persisted into adulthood, which is how it is defined in DSM 5 and in the ENIGMA-ADHD studies. The ENIGMA-ADHD study found small but significant ADHD vs. control differences in regional volumes and cortical thicknesses for children but not adolescents or adults 19 , 34 , 35 . Other studies show that ADHD participants whose brains become more neurotypical were more likely than others to show remission of symptoms 36 , 37 . But, although these longitudinal studies show reductions in case vs. control differences, they also suggest that those differences should be evident to some degree in cases that persist into adulthood.

Although the expectation of finding substantial continuity between childhood and adult ADHD has been widely accepted 33 , 38 , 39 and recently confirmed by a large GWAS 40 , this idea has been challenged 41 . Thus, given these prior data and the controversy about the continuity of ADHD into adulthood, we sought to test the idea that the ADHD-associated volumetric reductions seen in children with ADHD would be detected in adults with ADHD by applying ML algorithms. Given that symptoms and impairments persist into adulthood for most children with ADHD 42 , 43 , we hypothesized that ADHD-related brain structure differences in adults would be consistent with those observed in children.

Materials and methods

Mri samples.

The current study was approved by all contributing members of the ENIGMA-ADHD Working Group, which provided T1-weighted structural MRI (sMRI) data from 4183 subjects from 35 participating sites (by Aug. 2019). Each participating site had approval from its local ethics committee to perform the study and to share de-identified, anonymized individual data. Images were processed using the consortium’s standard segmentation algorithms in FreeSurfer (V5.1 and V5.3) 31 . A total of 151 variables were used including 34 cortical surface areas, 34 cortical thickness measurements, and 7 subcortical regions from each hemisphere, and intracranial volume (ICV). Subjects missing more than 50% of variables were removed. Remaining missing values and outliers (outside of 1.5 times the interquartile range (iqr 1.5)) were replaced with imputed values using multiple imputation with chained equations in STATA15. The final ML dataset consisted 4042 subjects from 35 sites, among which 45.8% were non-ADHD controls ( n  = 1850, male to female ratio (m/f) = 1.42) and 54.2% ADHD participants ( n  = 2192, m/f = 2.79). Ages ranged from four to 63 years old; 60.7% were children (age <18 years, n  = 2454) and 39.3% were adults (age ≥18 years, n  = 1588). ADHD diagnosis was significantly biased by sex (X 2 (1)  = 66.9, p  < 0.0001), sites (X 2 (1)  = 146.73, p  < 0.0001), and age (X 2 (1)  = 4.28, p  = 0.04).

To balance the confounding factors, we took the following steps. First, we randomly assigned samples to training (~70%), validation (~15%), and test (~15%) subsets within each diagnosis, sex, age subgroup (child vs. adult), and site to ensure that the train/validation/test subsets have the same composition of these variables. Twelve sites that provided only cases or only controls (total 203 subjects) were excluded during the initial train/validation/test split because their samples cannot provide an unbiased learning during the training and validation steps. These samples were added to the test set for final test evaluation. Supplementary Table 1 shows the sample splitting from each site. Next, we balanced the training set for the case and control groups within each sex, age, and site subgroup by random oversampling of the under-represented diagnostic group, a procedure commonly used to deal with class imbalance. The resulting balanced training set is described in Table 1 . The validation and test sets were not balanced by age, sex, and site, however due to our sample splitting procedures, they contain the same demographic samples as the training set. In addition, the test set also contains samples from sites that had been excluded from the training set due to not having a site-specific control group.

Feature preprocessing

The high correlation among the 151 MRI features suggested the need for feature dimension reduction. Many prior studies have opted for feature selection in which the most important features were retained rather than using all MRI features. Although this approach reduces the numbers of input features, it does not remove the highly correlated relationships among the selected features. As prior MRI studies also suggested small but widespread differences between children with and without ADHD, we chose to use principal factors factor analysis (PFFA) for dimension reduction. With varimax rotation, PFFA on sMRI features of the training set identified 46 factors that explained >90% of the variance. This means that the reduced numbers of 46 non-correlated factors were able to represent majority (>90%) of the variance within the training dataset. We then computed factor scores for subjects in the validation and test sets based on the training set PFFA. We compared the original MRI and PFFA features in a screening pipeline for nine different ML models (see below) to determine which set of features were better for the classifiers.

Machine learning framework

Our ML framework starts with a screening pipeline in which nine different ML models were thoroughly evaluated. We used only training and validation sets for this purpose and we also compared the results of the original MRI features and the PFFA factors. Children and adults were combined for the screening analysis. The screening pipeline utilized Scikit‐Learn’s grid search algorithm 44 to search a large hyperparameter space for each of the models (see Supplementary Fig. 1 for details on these models and their hyperparameter spaces). We then compared both the training and validation scores of all the possible combinations of the hyperparameter sets. We used the area under the receiver operating characteristic (ROC) curves (AUC) as a measure of accuracy. To avoid overfitting, we chose the model having the highest validation AUC and smaller training AUC. Because multilayer perceptron (MLP) neural network models were found to be better than other models in meeting this criterion, we used MLP in the following analysis.

More detailed hyperparameter tuning for MLP was carried out using the Keras API (version 2.3.1), the TensorFlow library (version 1.14.0), and HyperOpt 45 . The neural network hyperparameters and their spaces are: the numbers of layers (1–3, model deteriorates quickly when more than 3 layers were used), numbers of units in each layer (4–500) and dropout rates in each layer (0.1–0.9), learning rate (0.00001–0.01) and batch normalization size (4–256). These hyperparameters were chosen for the HyperOpt tuning because of their important role in effective learning, avoiding local minimum and overfitting. The numbers of layers and units determines the complexity of the model. The ideal complexity of the neural network ensures a converging model that was able to learn the predictive features but not overfit the training examples. Early stopping was also implemented to avoid overfitting. We tested different activation functions (relu, selu, tanh), and optimizers (Adam, SGD, RMSprop, Adagrad, Adamax, Nadam). We used binary cross entropy as the loss function. Best model architecture and hyperparameters were chosen based on the lowest total validation loss. Final test scores were obtained on the test set with ensemble learning approach 46 . All ML algorithms were written in Python 3.5.

Analysis pipelin e

Our main analysis pipeline starts with two base models that used data from the corresponding age groups during the model training and validation phase and tested also on data from their corresponding age groups. The child model used only child samples during model training, validation, and hyperparameter optimization, and tested on child test set. The adult model, similarly, was trained and validated on the adult samples and tested on the adult test set. We examined models using MRI features only, as well as those included age and sex information. We also trained a combined model that uses all the training data from both child and adult groups and compared the performance with the age-specific models.

Next, we sought to determine if the model trained and validated on the adult samples, the adult model, could be used to predict child ADHD, and vice versa. We hypothesized that if the ADHD vs. control sMRI differences seen in children are also present in adult ADHD brains, then the base models for each age group should be able to predict ADHD in the other age group. To create the largest test sets possible, we tested the child model on all the adult samples, and the adult model on all the child samples.

Model ev a luation

The sigmoid function in the output layer of the neural network generates a continuous score that assesses the probability for each individual to be classified as ADHD. We name this continuous output the brain risk score. Using the brain risk scores, we calculated Cohen’s d effect sizes for child and adult test sets. We computed ROC curves and used the area under the ROC curve (AUC) as our primary measure of accuracy. The AUC and its confidence intervals were calculated in Stata 15 using the empirical method and compared with nonparametric approach by DeLong et al. 47 . We also computed precision-recall (PR) curves and reported the area under the PR curves, as well as the Brier loss for the final models as measures of accuracy and goodness of fit.

The screening results (Supplementary Fig. 1 ) showed that principal factors as input features greatly improved the classifiers’ performance compared with original MRI features, as demonstrated by higher validation AUCs achieved in many models. Using principal factors, MLP outperformed all other models and was chosen as the base model and used in the following main analysis after additional fine-tuning the hyperparameters. The final MLP models’ hyperparameters were listed in Supplementary Table 2 .

Figure 1A (top portion) shows the test set AUCs (as dots) and their 95% confidence intervals (as horizontal lines) for the base models using only MRI factors. The model trained and validated on child data predicted child ADHD with a significant AUC 0.64 (95%CI 0.58–0.69). In contrast, the model trained and validated on adult data was not significant AUC (0.56, 95%CI 0.49–0.62, p  = 0.057). ROC curves for the two base models are in Supplementary Fig. 2A . The difference between the two base models’ AUCs was not significant (X 2 (1)  = 3.4, p  = 0.065). The areas under the precision-recall curve (AUPRC) were higher for the adult model (AUPRC = 0.74) than the child model (AUPRC = 0.68). Using the model predicted brain risk scores, we calculated the Cohen’s d effect sizes in the test set to be 0.47 for child samples (95%CI: 0.27–0.68) and 0.15 (−0.08–0.39) for the adult samples.

Area under the receiver operating characteristic curve (AUC) accuracy statistics for the held-out test results were plotted (as dots) with their 95% confidence intervals (as horizontal lines). The vertical line at an AUC of 0.5 indicates a chance level of diagnostic accuracy. If the 95%CI does not overlap with the 0.5 vertical line, it indicates significant predictive accuracy. A AUC comparison of the models using only MRI features. A AUC comparison of the models using MRI features plus age and sex. In both A and B , the Top portion shows the base models, where models were trained and validated in child or adult samples and tested on their corresponding age groups; Bottom portion tests the hypotheses that if model trained/validated on child samples can also predict adult ADHD and vice versa. Note that test sample consists of combined training, validation, and test sets from the other age group because they are not used in the model optimization and training.

After adding age and sex as predictors, the adult model (Fig. 1B , top) increased the AUC to 0.62 (95%CI 0.56–0.69, p  = 0.002). Although prediction AUC was now significant, the increase from the base model without age and sex was not statistically significant (X 2 (1)  = 2.01, p  = 0.15). The AUPRC for the adult model also slightly increased to 0.79. Adding age and sex as predictors to the child model did not affect either the AUC, nor the AUPRC. ROC curves of two models are plotted in Supplementary Fig. 2B . The Cohen’s d effect sizes in the test set were 0.48 for children (95%CI: 0.27–0.69) and 0.39 (0.15–0.63) for adults. All above models had similarly small Brier scores (0.25).

The combined model with MRI features produced an overall test AUC of 0.60 (95%CI 0.55–0.64). The test AUC was 0.64 (95%CI 0.58–0.69) on the child subset and 0.54 (95%CI 0.47–0.60) on the adult subset, comparable to those from the age-specific models. Similarly, the combined model with MRI, age, and sex features produced an overall AUC of 0.63 (95%CI 0.59–0.67). The subset test AUC was 0.65 (95%CI 0.60–0.71) on the child subset and 0.56 (95%CI 0.49–0.63) on the adult subset, also statistically comparable to those of the age-specific models.

Because the training samples had been balanced for age and sex, these variables are not predictive of ADHD for either the child or adult test sets. To verify this, linear regression using only age and sex and their interactions to predict ADHD in the child and adult samples resulted in non-significant AUCs (child AUC 0.51, 95%CI: 0.45–0.57; adult AUC 0.46, 95%CI: 0.39–0.53).

Tests of hypotheses

For models using only MRI features, neither the adult nor child models were successful at predicting ADHD in the other age group (Fig. 1A , bottom). However, the adult model that used both MRI features and age and sex was able to predict the child samples significantly (AUC = 0.60, 95%CI: 0.58–0.62, Fig. 1B bottom). The Cohen’s d effect size for children, based on the adult model predictions, was 0.17 (95%CI: 0.10–0.24), smaller than those predicted by their age-corresponding models. The child model that used both MRI features and age and sex did not significantly predict ADHD when applied to the adult samples (AUC = 0.53, 95%CI: 0.49, 0.56, Fig. 1B bottom). ROC curves of both models tested on the different age groups are plotted in Supplementary Fig. 2C .

Consistent with previous ENIGMA ADHD findings 31 , 32 , we found that the ability of sMRI data to discriminate people with and without ADHD is much stronger for children than adults, which is consistent with a broader literature showing that ADHD-associated structural brain differences diminish with age 19 , 34 , 35 , 36 , 37 . While the ENIGMA ADHD study did not find any significant differences between ADHD and control subjects for adults, our adult model did achieve a significant AUC 0.62 (95%CI 0.56–0.69) and a high area under the PR curve (AUPRC = 0.79). Consistent with the ENIGMA findings, our model-predicted brain risk scores had a larger effect size for the children than adults in both the models using MRI features and those with age and sex added. Notably, our effect sizes were two times greater than the largest of those individual regions reported in prior ENIGMA ADHD studies for both children (Cohen’s d  = −0.21) and adults (Cohen’s d  = −0.16) 31 , 32 .

Only a handful of prior ML studies attempted to classify ADHD from controls using only sMRI data. Most used resting-state functional MRI (rs-fMRI), or rs-fMRI in combination with another MRI modality, sometimes including cognitive measurements such as IQ. Many prior studies reported model performance on a cross-validation dataset without using an independent test set. We and many others have warned about the risk of data leakage and model overfitting when using only cross-validation without an independent test set 26 , 48 , 49 , 50 , 51 . Among those that reported independent test results, classification accuracies varied from 37 to 93%, with an average of 68% (ref. 26 ). Notably, it is difficult to directly compare the accuracy scores with our AUC scores since many of these studies used imbalanced datasets. Nevertheless, one study, among those, reported classifiers built with only sMRI features. In that study, Yoo and colleagues examined various combinations of fMRI, sMRI features, and genetic data from a balanced cohort of 94 children and adolescents. The unimodal sMRI classifier, using the cortical thickness and volumes, achieved an accuracy of 69.4% and AUC 0.65 in a small independent test set (18 ADHD and 18 typically developing children) 52 . Although the AUC is comparable to our child model, it is not clear how well this model would generalize to other samples given the extremely small sample sizes in both training and test sets. Nevertheless, the authors reported a better AUC (0.70) with a multimodal classifier built with features from both diffusion tensor imaging and sMRI data 52 .

Although our results from the child and adult base models show that sMRI data are not sufficiently predictive to be useful in clinical practice, they provide crucial pieces of evidence that will be useful in future attempts at predictive modeling. We are the first to confirm in the largest possible adult ADHD MRI sample available, that adults with ADHD differ significantly from adults without ADHD on sMRI features. Only a few prior studies attempted to classify adult ADHD from controls, but all used extremely small dataset (<100 (refs. 28 , 29 , 30 )). Although these studies reported higher accuracies (74%–80%), all were based on cross-validation results and none reported prediction performance on independent test sets. The improvements we found by adding age and sex to the adult model indicate that these demographic variables must moderate the predictive ability of sMRI features. These demographics moderate the sMRI effects because our regression models show that the demographic variables on their own have no predictive utility (which was fixed in advance by balancing the case and control training samples by age and sex). It is possible that there are different age subgroups within the adult dataset that demonstrate different patterns of MRI features. For example, many regions of the brain, including prefrontal cortex, do not fully mature until early adulthood, around age 25 (ref. 53 ). Perhaps the age group “adults” should not include developing brains prior to age 25. However, we cannot assess for such age effects due to the sample sizes of more refined age groups. Future work should recruit more MRI data particularly for under-represented adolescent and older adult age groups. We have also shown that ML methods dramatically increase the ADHD vs. Control effect size compared with the prior univariate ENIGMA analyses.

The results from our hypothesis testing provide further information that is useful in understanding the continuity of child and adult ADHD. Consistent with our hypothesis, the adult model, trained only on adult samples, significantly predicted ADHD in the child samples. This suggests that the adult model learned combinations of structural features relevant for discriminating the sMRI scans from children with and without ADHD. This implies that some of ADHD’s sMRI differences that are relevant for persistent cases are also relevant in childhood (only some of which will be persistent into adulthood). This conclusion must, however, be considered equivocal because the child model did not successfully predict ADHD in the adult samples. To resolve this issue, future studies will need to find a way to better discriminate sMRI features associated with the onset of ADHD and those associated with the persistence of ADHD.

Our work should be interpreted in the context of several limitations. First, because we combined data across many sites, we inherit all the limitations of the original studies. Heterogeneity of methods across studies may have added noise to the combined dataset that made it difficult to discriminate the data from people with and without ADHD. Second, we only used structural imaging data. Incorporating other imaging modalities might provide clearer results and conclusions. Third, we used pre-defined structures from ENIGMA standard image processing pipeline as features. It is possible that other methods such as one using 3D images as input features, in a convolutional neural network, would uncover useful features leading to increased classification accuracy. However, the 3D images are not available. Finally, our use of neural networks makes it difficult to clarify the importance of each brain region in the model’s algorithm.

Despite these limitations, we have shown that a neural network approach is able to detect case-control sMIR differences in adults with ADHD that could not be detected with standard analyses. We have also provided some evidence for the continuity of sMRI findings from childhood into adulthood.

Code availability

The machine learning codes were freely accessible from the GitHub repository ( https://github.com/ylzhang29/ADHD_MLP ) for research purposes.

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Acknowledgements

Dr. Faraone is supported by the European Union’s Seventh Framework Programme for research, technological development and demonstration under grant agreement no. 602805, the European Union’s Horizon 2020 research and innovation programme under grant agreement nos. 667302 & 728018, and NIMH grants 5R01MH101519 and U01 MH109536-01. Dr. Franke is supported by a personal Vici grant (016-130-669) and Dr. Hoogman from a personal Veni grant (91619115), both from the Netherlands Organization for Scientific Research (NWO). The ENIGMA Working Group gratefully acknowledges support from the NIH Big Data to Knowledge (BD2K) award (U54 EB020403 to Paul Thompson). We thank Margaret Mariano and Patricia Forken for administrative assistance and proofreading the manuscript.

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LEAD Graduate School, University of Tübingen, Tübingen, Germany

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Correspondence to Stephen V. Faraone .

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Conflict of interest.

Dr. Barbara Franke has received educational speaking fees from Shire and Medice. Dr. Stephen V Faraone received income, potential income, travel expenses continuing education support and/or research support from Takeda, OnDosis, Tris, Otsuka, Arbor, Ironshore, Rhodes, Akili Interactive Labs, Enzymotec, Sunovion, Supernus, and Genomind. With his institution, he has US patent US20130217707 A1 for the use of sodium-hydrogen exchange inhibitors in the treatment of ADHD. He also receives royalties from books published by Guilford Press: Straight Talk about Your Child’s Mental Health, Oxford University Press: Schizophrenia: The Facts and Elsevier: ADHD: Non-Pharmacologic Interventions. He is Program Director of www.adhdinadults.com . Dr. Asherson has served as a consultant and as a speaker at sponsored events for Eli Lilly, Novartis, and Shire, and he has received educational/research awards from Eli Lilly, GW Pharma, Novartis, QbTech, Shire, and Vifor Pharma. Dr. Banaschewski has served in an advisory or consultancy role for Actelion, Eli Lilly, Hexal Pharma, Lundbeck, Medice, Neurim Pharmaceuticals, Novartis, Oberberg GmbH, and Shire; he has received conference support or speaking fees from Eli Lilly, Medice, Novartis, and Shire; he has been involved in clinical trials conducted by Shire and Viforpharma; and he has received royalties from CIP Medien, Hogrefe, Kohlhammer, and Oxford University Press. Dr. Bellgrove has received speaking fees and travel support from Shire. Dr. Biederman has received research support from AACAP, Alcobra, the Feinstein Institute for Medical Research, the Forest Research Institute, Genentech, Headspace, Ironshore, Lundbeck AS, Magceutics, Merck, Neurocentria, NIDA, NIH, PamLab, Pfizer, Roche TCRC, Shire, SPRITES, Sunovion, the U.S. Department of Defense, the U.S. Food and Drug Administration, and Vaya Pharma/Enzymotec; he has served as a consultant or on scientific advisory boards for Aevi Genomics, Akili, Alcobra, Arbor Pharmaceuticals, Guidepoint, Ironshore, Jazz Pharma, Medgenics, Piper Jaffray, and Shire; he has received honoraria from Alcobra, the American Professional Society of ADHD and Related Disorders, and the MGH Psychiatry Academy for tuition-funded CME courses; he has a financial interest in Avekshan, a company that develops treatments for ADHD; he has a U.S. patent application pending (Provisional Number #61/233,686) through MGH corporate licensing, on a method to prevent stimulant abuse; and his program has received royalties from a copyrighted rating scale used for ADHD diagnoses, paid to the Department of Psychiatry at Massachusetts General Hospital by Ingenix, Prophase, Shire, Bracket Global, Sunovion, and Theravance. Dr. Brandeis has served as an unpaid scientific consultant for an EU-funded neurofeedback trial. Dr. Buitelaar has served as a consultant, advisory board member, and/or speaker for Eli Lilly, Janssen-Cilag, Medice, Roche, Shire, and Servier. Dr. Coghill has served in an advisory or consultancy role for Eli Lilly, Medice, Novartis, Oxford Outcomes, Shire, and Viforpharma; he has received conference support or speaking fees from Eli Lilly, Janssen McNeil, Medice, Novartis, Shire, and Sunovion; and he has been involved in clinical trials conducted by Eli Lilly and Shire. Dr. Dale is a founder of and holds equity in CorTechs Labs, Inc., and has served on the scientific advisory boards of CorTechs Labs and Human Longevity, Inc., and he receives funding through research grants with GE Healthcare. Mr. Earl is co-inventor of the Oregon Health and Science University Technology #2198 (co-owned with Washington University in St. Louis), FIRMM: Real time monitoring and prediction of motion in MRI scans, exclusively licensed to Nous, Inc., and any related research. Any potential conflict of interest has been reviewed and managed by OHSU. Dr. Fair is a founder of Nous Imaging, Inc.; any potential conflicts of interest are being reviewed and managed by OHSU. Dr. Haavik has received speaking fees from Biocodex, Eli Lilly, HB Pharma, Janssen-Cilag, Medice, Novartis, and Shire. Dr. Hoekstra has received a research grant from and served on the advisory board for Shire. Dr. Karkashadze has received payment for article authorship and speaking fees from Sanofi and from Pikfarma. Dr. Konrad has received speaking fees from Eli Lilly, Medice, and Shire. Dr. Kuntsi has received speaking honoraria and advisory panel payments for participation at educational events sponsored by Medice; all funds are received by King’s College London and used for studies of ADHD. Dr. Lesch has served as a speaker for Eli Lilly and has received research support from Medice and travel support from Shire. Dr. Mattos has served on speakers’ bureau and/or as a consultant for Janssen-Cilag, Novartis, and Shire and has received travel awards from those companies to participate in scientific meetings; the ADHD outpatient program (Grupo de Estudos do Déficit de Atenção/Institute of Psychiatry) chaired by Dr. Mattos also received research support from Novartis and Shire. Dr. Mehta has received research funding from Lundbeck, Shire, and Takeda and has served on advisory boards for Lundbeck and Autifony. Dr. Ramos-Quiroga has served on the speakers bureaus and/or as a consultant for Almirall, Braingaze, Eli Lilly, Janssen-Cilag, Lundbeck, Medice, Novartis, Shire, Sincrolab, and Rubió; he has received travel awards for taking part in psychiatric meetings from Eli Lilly, Janssen-Cilag, Medice, Rubió, and Shire; and the Department of Psychiatry chaired by him has received unrestricted educational and research support from Actelion, Eli Lilly, Ferrer, Janssen-Cilag, Lundbeck, Oryzon, Psious, Roche, Rubió, and Shire. Dr. Reif has received honoraria for serving as speaking or on advisory boards for Janssen, Medice, Neuraxpharm, Servier, and Shire. Dr. Rubia has received speaking fees form Shire and Medice and a grant from Eli Lilly. Dr. Thompson has received funding support from Biogen. Dr. Van Erp has served as consultant for Roche Pharmaceuticals and has a contract with Otsuka Pharmaceutical, Ltd. Dr. Walitza has received lecture honoraria from Eli Lilly and Opopharma, support from the Hartmann Müller, Olga Mayenfisch, and Gertrud Thalmann foundations, and royalties from Beltz, Hogrefe, Kohlhammer, Springer, and Thieme. Dr. Yanli Zhang-James is supported by the European Union’s Seventh Framework Programme for research, technological development, and demonstration under grant agreement no. 602805 and the European Union’s Horizon 2020 research and innovation programme under grant agreement no. 667302. Emily C Helminen, Jinru Liu, Dr. Martine Hoogman, and other contributing members of the ENIGMA-ADHD Working Group declare no conflict of interest.

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Zhang-James, Y., Helminen, E.C., Liu, J. et al. Evidence for similar structural brain anomalies in youth and adult attention-deficit/hyperactivity disorder: a machine learning analysis. Transl Psychiatry 11 , 82 (2021). https://doi.org/10.1038/s41398-021-01201-4

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Do epilepsy medications taken during pregnancy affect a child's creativity?

While older drugs for epilepsy, taken while pregnant, have been shown in previous research to affect the creative thinking of children, a new study finds no effects on creativity for children born to those taking newer epilepsy drugs. This study is published in the May 29, 2024, online issue of Neurology ® , the medical journal of the American Academy of Neurology.

Overall, the study found no effects on the children's creative abilities or their executive function, which is a person's ability to plan, focus, and manage multiple tasks. However, when researchers looked only at children with higher concentrations of these medications in the mother's blood during the third trimester, the study found an association with poorer performance in tests of children's executive function, but no effect on their creative abilities.

"Our findings highlight that even for epilepsy medications that are generally considered to be safe in pregnancy, dose adjustments should be made with a goal of reaching an optimal balance between controlling seizures and the minimizing negative effects on the developing child," said study author Kimford Meador, MD, PhD, of Stanford University in Palo Alto, California and a Fellow of the American Academy of Neurology.

The study involved 251 children of female participants with epilepsy and 73 children of female participants without the disease.

Of those with epilepsy, most were taking just one epilepsy medication. Of this group, 81 people were on lamotrigine and 68 people were on levetiracetam.

The children were evaluated at age four and a half with a test of creative thinking where they were provided with a shape or figure and responded by completing or adding their own illustrations. This test assesses fluency, flexibility and originality abilities.

After adjusting for mothers' IQ and education, researchers found no differences in the creativity scores between the children born to mothers with epilepsy and those born to mothers without the disease.

In addition, they found no differences in creativity between the children of mothers with epilepsy that could be linked to different levels of antiseizure medications found in mothers' blood samples during the third trimester.

However, researchers found higher third trimester blood concentrations of these medications were associated with poorer performance on tests of executive skills. This link was mainly associated with exposure to levetiracetam.

"There is still so much to learn about the impact of a mother's epilepsy medications on their child's creative development," said Meador. "More studies are needed, especially in older children, to assess the full effect of these medications on childhood development."

A limitation of the study was that cognitive tests at age four and a half are not as accurate at predicting creativity and thinking skills in the teenage and adult years as tests taken at older ages.

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Materials provided by American Academy of Neurology . Note: Content may be edited for style and length.

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• Kimford J. Meador, Morris J. Cohen, David W. Loring, Abigail G. Matthews, Carrie A. Brown, Chelsea Robalino, Andrea Carmack, Sarah Sumners, Angela K. Birnbaum, Laura A. Kalayjian, Evan Gedzelman, Paula E. Voinescu, Elizabeth E. Gerard, Julie Hanna, Jennifer Cavitt, Maria Sam, Sean T. Hwang, Alison M. Pack, Jeffrey J. Tsai, Page B. Pennell. Association of Prenatal Exposure to Antiseizure Medications With Creative and Executive Function at Age 4.5 Years . Neurology , 2024; 102 (12) DOI: 10.1212/WNL.0000000000209448

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Insurance often denies GLP-1 medications for teens with type 2 diabetes, obesity

by The Endocrine Society

Health insurance companies often deny coverage for new medications that treat children and teens with obesity and type 2 diabetes, meaning many patients who need treatment are unable to afford it, according to a study presented at ENDO 2024 , the Endocrine Society's annual meeting in Boston, Mass.

The medications, called GLP-1 receptor agonists (GLP1Ra), are often denied despite being approved by the U.S. Food and Drug Administration, especially if children do not have type 2 diabetes , the researchers found.

GLP1Ra drugs include liraglutide (Victoza, Saxenda). The researchers wanted to evaluate the real-world prescription outcomes of these medications at a large children's hospital. They studied 599 children, with an average age of 15, who were prescribed a GLP1Ra. Three-quarters had type 2 diabetes, and 58% had public insurance .

"We found insurance denied the GLP1Ra prescriptions in 64% of patients with obesity and 32% of patients with type 2 diabetes," said lead researcher Gabriel Castano, M.D., of Texas Children's Hospital Baylor College of Medicine in Houston, Texas. "The lack of insurance approval severely limits GLP1Ra use in the children who truly need the medications."

In patients with type 2 diabetes, private insurance denied 54% of the prescriptions, while Medicaid denied 27%. In patients without type 2 diabetes, private insurance denied 55%, and Medicaid denied 69% of prescriptions.

Patients taking liraglutide start at a lower dose and gradually increase until they reach the full prescribed dose, a process called titration. The study found that in children with type 2 diabetes, 33% took longer than recommended to reach the prescribed treatment dose, and 17% never reached the treatment dose. For patients with obesity, less than half were able to reach their prescribed dose.

"This has significant clinical implications since the expected improvements with the use of GLP1Ra in weight or glucose control are likely dose-dependent," Castano said. "If patients are unable to reach the prescribed dose, they will likely not experience the full beneficial effects of the medication."

Most patients had no or mild side effects. However, two patients developed severe pancreatitis while on liraglutide, a side effect that has not been reported before, Castano added.

"Our research shows that GLP1Ra medications are difficult to get for the patients who need them, patients may not be able to follow the recommended titration regimen when starting a GLP1Ra, and additional side effects may be possible than what has been reported previously," he said.

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Julia thome is first author of public health reports paper.

Posted by duthip1 on Wednesday, May 29, 2024 in News .

Congratulations to PhD candidate Julia Thome on the publication of Reporting of Child Maltreatment During the COVID-19 Pandemic in a Southern State in the United States in  Public Health Reports last week, online ahead of print. The paper was co-authored by associate professor Rameela Raman and colleagues at the Vanderbilt Center of Excellence for Children in State Custody, which is within the Vanderbilt Department of Psychiatry & Behavioral Sciences. Thome, Raman, and the other members of this team studied how COVID-19 stay-at-home orders may have affected trends in child maltreatment allegations across different socioeconomic groups.

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Original research

Effects of the maternal and child health handbook and other home-based records on mothers’ non-health outcomes: a systematic review, rogie royce carandang.

1 Department of Community and Global Health, The University of Tokyo Graduate School of Medicine Faculty of Medicine, Bunkyo-ku, Tokyo, Japan

2 Department of Public Health Sciences, University of Connecticut Health Center, Farmington, Connecticut, USA

Jennifer Lisa Sakamoto

Mika kondo kunieda.

3 Faculty of Policy Management, Keio University, Fujisawa-shi, Kanagawa, Japan

Akira Shibanuma

Ekaterina yarotskaya.

4 National Medical Research Center for Obstetrics, Gynecology and Perinatology named after Academician V.I. Kulakov of the Ministry of Health of the Russian Federation, Moscow, Russian Federation

Milana Basargina

5 Department of Neonatal Pathology, National Medical Research Center for Children’s Health, Moscow, Russian Federation

Masamine Jimba

Associated data.

bmjopen-2021-058155supp001.pdf

bmjopen-2021-058155supp002.pdf

bmjopen-2021-058155supp003.pdf

bmjopen-2021-058155supp004.pdf

bmjopen-2021-058155supp005.pdf

bmjopen-2021-058155supp006.pdf

bmjopen-2021-058155supp007.pdf

bmjopen-2021-058155supp008.pdf

bmjopen-2021-058155supp009.pdf

All data relevant to the study are included in the article or uploaded as online supplemental information.

This review aimed to investigate the effects of the maternal and child health (MCH) handbook and other home-based records on mothers’ non-health outcomes.

Systematic review.

Data sources

PubMed, Web of Science, CINAHL, Academic Search Complete, PsycArticles, PsycINFO, SocINDEX, CENTRAL, NHS EED, HTA, DARE, Ichuushi and J-STAGE through 26 March 2022.

Eligibility criteria for selecting studies

Original research articles examining home-based records and mothers’ non-health outcomes published in English or Japanese across various study designs.

Data extraction and synthesis

Two independent reviewers extracted relevant data and assessed the risk of bias. We assessed the certainty of evidence for each study using the Grading of Recommendations Assessment, Development, and Evaluation approach. Due to the heterogeneity of the included studies, we conducted a narrative synthesis of their findings.

Of the 4199 articles identified, we included 47 articles (20 in Japanese) in the review. Among the different types of home-based records, only the MCH handbook provided essential information about the mother–child relationship, and its use facilitated the mother–child bonding process. Mothers reported generally feeling satisfied with the use of home-based records; although their satisfaction with health services was influenced by healthcare providers’ level of commitment to using these records. While home-based records positively affected communication within the household, we observed mixed effects on communication between mothers/caregivers and healthcare providers. Barriers to effective communication included a lack of satisfactory explanations regarding the use of home-based records and personalised guidance from healthcare providers. These records were also inconsistently used across different health facilities and professionals.

Conclusions

The MCH handbook fostered the mother–child bond. Mothers were generally satisfied with the use of home-based records, but their engagement depended on how these records were communicated and used by healthcare providers. Additional measures are necessary to ensure the implementation and effective use of home-based records.

PROSPERO registration number

CRD42020166545.

Strengths and limitations of this study

• This systematic review examined a relatively large number of studies that were published in English or Japanese and encompassed several study designs, to highlight the effects of the MCH handbook and other home-based records on mothers’ non-health outcomes.
• Unlike past reviews, this systematic review focuses on non-health outcomes as a measure of the effectiveness of these records.
• The majority of the studies were observational and qualitative, which leads to potential biases and low certainty of evidence.
• Due to marked heterogeneity across studies regarding the study designs, intervention types and comparator groups, a narrative synthesis was conducted.

Introduction

Over 163 countries worldwide have made use of home-based records to improve maternal, newborn and child health (MNCH). 1 Home-based records are handheld records used by mothers or caregivers in households to record essential information related to MNCH, including visits to a healthcare provider, vaccination history and the child’s developmental milestones. 1 The design and content of these records vary considerably across countries and regions. While their use is nearly universal in some countries, it tends to be limited in others. 1 The records are available in paper or electronic format, complement facility-based records, and can be either single focus or multifocus. Single-focus records contain information relevant to one health topic or population group (eg, antenatal care notes, vaccination-only cards, growth charts), while multi-focus records consist of chronologically ordered information pertaining to more than one health topic and can be used for an extended period. 2 The difference in focus as per health topic or population group resorted to policy debates on whether home-based records should be developed and distributed per mother or child. 3 Due to problems encountered in full integration (eg, poor coordination across stakeholders), most countries prefer to implement program-specific, stand-alone home-based records for MCH services. 3

The Maternal and Child Health (MCH) handbook is an example of multifocus records. Its use originated in Japan in 1948 and it is known to be the first integrated home-based record covering the entire spectrum of pregnancy, childbirth, infancy and childcare until 6 years of age. 4 The integration may have facilitated the continuum of care 5 and might help achieve the Sustainable Development Goal (SDG) 3—ensuring healthy lives and promoting well-being for all at all ages. 6 As part of universal healthcare, this handbook is distributed to pregnant women in Japan when they register their pregnancy. 7 This record is shared between mothers and healthcare providers and contains educational messages related to MNCH. Mothers bring it when receiving MNCH services and healthcare providers complete the medical charts in the handbook. 8 Following decentralisation in 1991, Japanese municipalities started distributing the handbook and may add more information from the 48-page national version to meet their local needs and socioeconomic changes. 4 8 It has been theorised to contribute to Japan’s decreased infant mortality, which may have encouraged several countries to adopt the handbook. 7 To date, more than 50 countries worldwide have used the MCH handbook and found it to be useful. 4 This is especially true for countries where access to healthcare services is restricted. 9

Previous systematic reviews have evaluated the impact of home-based records on MNCH and reported improvements in the uptake of antenatal care services, childhood vaccinations and newborn and childcare practices. 5 10 11 Studies in Myanmar and Palestine also showed a positive association between using the MCH handbook and receiving high-quality maternal health services. 8 12 These are considered essential indicators for evaluating the effectiveness of home-based records for MNCH. However, these reviews have failed to offer any insights related to non-health outcomes, such as communication within the household, communication between mothers/caregivers and healthcare providers, mother–child bonding, and satisfaction with health services and home-based records. 1 This is despite the WHO’s (WHO) recommendation regarding the use of non-health outcomes for evaluating the effectiveness of home-based records for MNCH. 1 For example, a systematic review by Magwood et al suggested that home-based records could empower women and children and act as a point of commonality between patients and healthcare providers. 13 While they presented compelling results, they did not find any evidence pertaining to mother–child bonding and there was a lack of in-depth discussion about communication and satisfaction with these records. Exploring these non-health outcomes can be crucial for providing a more holistic picture of the effectiveness of home-based records and result in insights of theoretical and practical relevance. 14–17 This would capture the user experience to help improve the implementation of home-based records. Moreover, non-health outcomes may impact health outcomes, 14 although more studies need to be conducted to clarify this effect.

The review mentioned above by Magwood et al included only qualitative studies available in English, without taking into consideration essential findings resulting from quantitative studies. The lack of data saturation or richness is a limitation of qualitative studies and will affect the certainty of evidence. 18 Quantitative studies may bring evidence on real-life outcomes of records as they provide more information on actual adherence. Furthermore, given that Japan developed and popularised the use of the MCH handbook, the inclusion of studies published in Japanese can lead to an enhanced understanding of how users perceive home-based records.

In light of these gaps left unaddressed by existing literature, this study aimed to investigate the effects of the MCH handbook and other home-based records on mothers’ non-health outcomes, through a review of studies published in English and Japanese. This systematic review was conducted as part of a larger systematic review aimed at exploring the roles of the MCH handbook and other home-based records on MNCH.

Patient and public involvement statement

Patients and/or the public were not involved in this review.

The protocol was ( online supplemental file 1 ) conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guidelines. 19

Supplementary data

Selection criteria, study inclusion criteria.

This review included research studies published in English or Japanese and conducted using various study designs, such as randomised controlled trials (RCTs), observational studies (quasi-experimental, cohort and cross-sectional), case studies and qualitative studies. We excluded books, conference abstracts, editorials, letters, protocols and systematic reviews. We defined the inclusion criteria based on the Population, Intervention, Comparator, Outcome framework.

Participants

We included studies conducted with parents, including mothers or other caregivers of newborns and children. Both health and community settings were considered in this review.

Intervention

The intervention consisted of home-based records managed or kept by mothers or caregivers in the form of hard copies. These records included women-held maternity records, child health books, vaccination-only cards and integrated MCH books (ie, the MCH handbook). We excluded patient diaries, mobile health interventions (apps, text messages) and provider-held records, such as electronic medical records and web-based summaries of patients’ appointments.

The comparator included standard care provided to mothers or caregivers before or after childbirth, conventional information or the absence of any home-based records. We also included studies that did not include a comparison group.

We followed the WHO guidelines for defining non-health outcomes. 1 These included communication within the household, communication with healthcare providers, satisfaction with home-based records and satisfaction with services/provider performance. 1 Communication within the household refers to how home-based records improved partner/family members’ involvement in pregnancy and childcare, while communication with healthcare providers covers counselling sessions using the records and mothers’ engagement. Satisfaction with home-based records refers to mothers’ perceived agreement with its content (eg, health or recording information). In contrast, satisfaction with services/provider performance refers to mothers' perceived use of the records to deliver MCH services. As an additional outcome, we included mother–child bonding based on the assumption that the integration of the mother’s and child’s records in the MCH handbook can foster a stronger mother–child bond. We defined ‘mother–child bonding’ as the development of a core relationship between mother and child. 20 This bond is unidirectional (from mother to child), shapes during pregnancy and continues developing until early childhood. 21–23

Search strategy

Two authors (RRC and JLS) developed a search strategy using Medical Subject Headings terms and keywords ( online supplemental file 2 ), without restrictions on date. Electronic databases were searched for articles published in English and Japanese until 26 March 2022. For articles published in English, RRC and JLS searched the following databases: MEDLINE, CINAHL, Web of Science, PsycArticles, PsycINFO, SocINDEX, Academic Search Complete, Cochrane Central Register of Controlled Trials, NHS Economic Evaluation Database, Health Technology Assessment database and the Database of Abstracts of Reviews of Effects.

A different set of authors (JLS and MKK) searched Japanese databases, including Igakuchuo-zasshi (Ichushi; https://search.jamas.or.jp/ ) and J-STAGE ( https://www.jstage.jst.go.jp/ ), to search for articles published until March 26, 2022. Both these databases publish over 300 000 articles annually from 2500 Japanese biomedical journals.

Furthermore, three authors (RRC, JLS and MKK) searched grey literature using the WHO databases, United Nations Children’s Fund, the European Centre for Disease Prevention and Control, the US Center for Disease Control and Prevention and the Japan International Cooperation Agency. The authors also manually searched the reference lists of articles, whose full texts had been retrieved, to identify additional relevant articles. All records identified through the search were uploaded to a reference-managing software package (Endnote V.X9) to facilitate the identification and selection of articles eligible for inclusion in this review.

Evidence retrieval

The search strategy yielded 4199 articles from both English and Japanese databases; additionally, 36 articles were identified through manual searching. Of these, 854 were articles published in Japanese. After removing duplicate entries, a total of 3315 articles remained. Subsequently, RRC and JLS assessed the English articles to determine their eligibility, while MKK and JLS assessed the Japanese articles. This was done by screening the titles and abstracts of the studies in a blinded, standardised manner. Any disagreements were resolved through discussion among the three authors until a consensus was reached or by consulting a fourth author (MJ or AS). A total of 3097 articles were excluded following the initial screening.

In the next stage of screening, the three authors obtained the full texts of the remaining 218 articles from the University of Tokyo Library System, National Diet Library Online and Keio University KOSMOS System. Consequently, 171 articles were excluded for the following reasons ( online supplemental file 3 ): intervention unrelated to the use of home-based records (n=56), intervention involving provider-held records and mobile health (n=41) and outcomes not pertaining to communication, satisfaction and mother–child bonding (n=74). Finally, 47 articles (including 20 Japanese articles) were deemed eligible for inclusion in the narrative synthesis. Figure 1 shows the PRISMA flow diagram of the screening process.

PRISMA flow diagram of the screening process. MCH, maternal and child health; PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Data extraction

The three authors (RRC, JLS and MKK) created a library using the Endnote referencing software consisting of PDF versions of the included articles. We extracted and independently entered the following data in a Microsoft Excel sheet: citations (ie, name of the first author, publication year, title, and journal name), study design, country and settings, population and sample size, type of home-based records used, comparator and relevant outcomes ( online supplemental file 4 ). The same authors discussed the strategies and presentation of the results throughout the data extraction process.

Quality appraisal

The authors (MKK and JLS for Japanese articles; RRC and JLS for English articles) independently assessed the risk of bias in the included studies. For RCTs, we used the revised Cochrane Risk of Bias Tool (RoB 2) to evaluate the overall risk of bias based on five domains: randomisation process, deviations from the intended intervention, missing outcome data, outcome measurement and selective reporting of results. 24

For non-RCTs, we used the following risk of bias assessment tools: Risk Of Bias in Non-randomized Studies - of Interventions for non-randomised studies, 25 Critical Appraisal Skills Programme checklist for qualitative studies, 26 National Institutes of Health quality assessment tool for observational cohort and cross-sectional studies, 27 and the mixed-methods appraisal tool for mixed-method studies. 28 Disagreements were discussed and resolved through a consensus between the authors. Additionally, we used the Grading of Recommendations Assessment, Development and Evaluation (GRADE) framework to assess the certainty of the evidence in quantitative studies, 29 and the GRADE-CERQual (confidence in the evidence from reviews of qualitative research) framework for qualitative studies. 30

Synthesis of findings

All the authors participated in the data analysis. We conducted a narrative synthesis owing to the heterogeneity of study designs among the included studies and the lack of pooled data for a meta-analysis. Therefore, we followed the synthesis without meta-analysis reporting guidelines ( online supplemental file 5 ) for the narrative synthesis of findings, 31 instead of the PRISMA guidelines ( online supplemental file 6 ). To evaluate the effects of the intervention (home-based records), we conducted a detailed examination of the numeric and textual summary of the findings and conclusions of the included studies. We coded the outcomes as having a positive, mixed or no effect. We considered an outcome to have a ‘positive effect’ if the home-based record showed a statistically significant effect (eg, women experienced more partner involvement) and narrative findings indicated positive results (eg, healthcare providers explained what is being recorded). We coded an outcome to have a ‘mixed effect’ when it showed some evidence of the usefulness of the record but not necessarily a significant effect. When there was no significant effect and narrative findings reported negative results (eg, perceived lack of communication with healthcare providers), we considered the outcome as ‘no effect.’ We grouped the studies for synthesis based on the following research questions:

• Do home-based records (intervention) improve communication, satisfaction and mother–child bonding, as opposed to the non-use of home-based records (control)?
• Does a different type of home-based record (intervention) improve communication, satisfaction and mother–child bonding, compared with a standard home-based record (control)?

We presented the direction and magnitude of the effect (effect sizes that cannot be meta-analysed) in the GRADE table ( online supplemental file 7 ). We also presented the qualitative evidence profile in the GRADE-CERQual table ( online supplemental file 8 ). We ordered the heterogeneity of the included studies according to the participants, methods and outcomes reported. We prioritised studies based on their study design, risk of bias assessment and relevance to the research question.

Study characteristics

Online supplemental file 4 presents a summary of study characteristics.

Study designs

Among the included studies, there were 4 RCTs, 4 quasi-experimental studies (open, non-randomised trials), 6 cohort studies, 17 cross-sectional studies, 3 mixed-method studies (pre–post intervention and qualitative evidence), 9 qualitative studies and 4 case studies.

We used the World Bank definition to categorise countries according to income levels. 32 Thirty-three studies were conducted in high-income countries (HICs): Japan (n=18), the UK (n=7), Australia (n=4), the USA (n=2), New Zealand (n=1) and Norway (n=1). Fourteen studies were conducted in low-income and middle-income countries (LMICs): two studies in South Africa, one each in Ethiopia, Palestine, Iran, Bosnia and Herzegovina, Thailand, Indonesia, Vietnam, Bangladesh, Mongolia, Brazil, and Dominican Republic, and one multicountry study.

Study participants

We noted differences in the inclusion criteria for the study participants. Across studies, mothers were enrolled at different points in time either during pregnancy, childbirth or postbirth. One multicountry study targeted both literate and illiterate mothers who lived in communities with easy or low access to healthcare services. 33 Other studies targeted women from an ethnic minority group, 34 women who had experienced miscarriages, 35 36 as well as parents of children with special educational needs. 37 Studies were primarily conducted in health facilities, although a few were conducted in community settings. The sample sizes also varied greatly (range: 1–250 000) among included studies.

Types of interventions

We identified differences in the type of home-based records used by mothers or caregivers. Among the 47 studies included in the review, 25 involved the use of the MCH handbook. The remaining studies used other types of home-based records, including plunket books, road-to-health (RTH) booklets, maternity case notes, child personal health records, speaking books and patient passports. Some studies did not include a comparison group (n=33) when evaluating the intervention, while others compared users of home-based records with non-users of records or standard care groups. Thus, the studies considered home-based records as a single intervention when reporting their findings. We have presented the findings from the English and Japanese articles separately ( tables 1–2 ).

English articles included in the review

Mixed effect — home-based record showed some evidence of usefulness but not necessarily a significant effect.

MCH, maternal and child health; RCT, randomised controlled trial.

Japanese articles included in the review

MCH, maternal and child health.

Risk of bias in included studies

The risk of bias varied among the included studies. Online supplemental file 9 shows the risk of bias assessment of RCTs, observational studies, qualitative studies and mixed-method studies. Based on the RoB 2 algorithm, the four RCTs showed a high overall risk of bias, mainly because of concerns in the randomisation process and challenges with the blinding/masking of assessors owing to the nature of the intervention. For non-RCTs, we observed methodological issues and a lack of information and adjustment for potential confounding variables.

Communication within the household

Four studies published in English reported the effects of home-based records on communication within the household ( table 1 ). 38–41 Of these, three reported positive effects, but one did not. In Palestine and Indonesia, women who shared the MCH handbook with their husbands experienced greater involvement from their partners during pregnancy, delivery and childcare (GRADE certainty of evidence: very low). 38 39 Husbands expressed support by way of saving money for the delivery (OR=1.82, 95% CI 1.20 to 2.76), keeping their babies warm (OR 1.58, 95% CI 1.02 to 2.46), and providing developmental stimulation (OR 1.62, 95% CI 1.06 to 2.48). 39 Moreover, pregnant women in Australia found handheld maternity records to be beneficial because they could go through the records at home with their husbands and could share information with their grandparents and friends (GRADE-CERQual certainty of evidence: very low). 40 In Palestine, such sharing of information helped reduce misconceptions related to pregnancy and child care among family members. 38

Communication between mothers/caregivers and healthcare providers

Nineteen studies reported the effects of home-based records on communication between mothers/caregivers and healthcare providers. 33 34 37 38 40–54 Of these, eleven reported positive effects, five showed mixed effects, and three showed no effect. One RCT conducted in the UK reported that women having access to their complete records found it easier to talk to doctors and midwives (RR 1.73, 95% CI 1.16 to 2.59, GRADE certainty of evidence: very low) than the other group comprising cooperation card holders. 41 Similarly, few qualitative studies also found home-based records to be an effective tool for communication and relationship building with healthcare providers (GRADE-CERQual certainty of evidence: low). 40 42 47 49 51 In Ethiopia, pregnant women and mothers had the opportunity to ask questions related to a child’s development during ‘speaking book’ sessions and received solutions to throat and tooth related problems experienced by infants. 49

However, other studies reported mixed or no effects of home-based records on communication with healthcare providers. In a study in the UK, some parents (22%) indicated that they had not been given a satisfactory explanation on how to use the personal child health record (PCHR) when it was issued. 46 Additionally, health visitors were more likely to make use of PCHRs than other healthcare providers. 46 In South Africa, there were marked differences in the usage of RTH cards between private and public clinics; relatively few mothers in private clinics (31% vs 74% in public clinics) received an explanation regarding the RTH card, and the interpretation of the weight chart tended to be ignored in private clinics (92% vs 42% in public clinics). 43 A qualitative study conducted with ethnic minority women in Vietnam suggested healthcare providers’ reliance on written information (MCH handbook) over interpersonal communication. 34 The participants further indicated that the health information they received (verbally and in written) was often non-specific and not adjusted for their personal circumstances. 34

Satisfaction with the information provided by the home-based records

Nineteen studies reported on mothers’ satisfaction with the information provided by home-based records. 33 43–46 49 53 55–66 Among these, 12 reported positive effects, 6 reported mixed effects and 1 showed no effect. One RCT conducted in Norway reported that 65% parents were satisfied with the use of parent-held records and 92% were in favour of making it available permanently. 44 Satisfaction and support were particularly high among parents of children with chronic diseases. 44 In Japan, observational studies have reported the usefulness of the MCH handbook in providing information regarding the child’s health, growth and vaccination history. 61 62 However, one study highlighted the following recommendations made by parents to make the MCH handbook more ‘user-friendly’: an appropriate size, easy-to-understand expressions, and better and more relevant information for parents. 64 In a study conducted in Mongolia, an MCH handbook user suggested the handbook should leave space for the doctor to offer some advice, especially for the father (such as showing support and information on tobacco and alcohol use), instead of only providing information. 53

Satisfaction with the services/provider performance

Nine studies reported on mothers’ satisfaction with health services received through home-based records. 51 67–74 While four studies reported positive effects, five reported mixed effects. In Japan, interest in the MCH handbook was higher at the time of a check-up, as opposed to a consultation, among both healthcare providers and parents. 71 For mothers, the pages filled out by healthcare providers were the most useful, such as delivery records, vaccination records and neonatal records. 74 The section that was least useful to mothers was the one related to child and maternal oral hygiene. 72 In Australia, most parents and the community health staff liked personal health records and used them frequently, while most private doctors did not find them useful. 67

Mother–child bonding

Eight studies published in Japanese reported on the positive impact of the MCH handbook on mother–child bonding (GRADE certainty of evidence: very low). 35 36 74–79 In Japan, mothers who used the MCH handbook were found to be more likely to pass on the handbook to their children at the time of their marriage or pregnancy. 74 75 The handbook offered guidance on some healthy behaviours (eg, self-care, disease management) that could be passed on to future generations, 75 and could also predict the course of pregnancy and delivery for the next generation of daughters. 76 For mothers who had experienced neonatal death, the MCH handbook served as an aide-memoire because it had the newborn’s footprint and handprint, as well as words of gratitude for the mother had written at the time of the child’s birth. 35 36 For mothers who had experienced a natural disaster (eg, earthquake, tsunami), losing their MCH handbook, and hence, all pregnancy and child health records, was painful. 77 Nurses also introduced the MCH handbook to reduce adoptive parents’ anxiety and foster good parent–child relationships. 78 Furthermore, children of mothers who wrote at least one record of being worried or anxious in the MCH handbook, were more likely to develop maladaptive behaviour at school compared with children of mothers who wrote nothing or did not receive the handbook (p<0.05). 79

This systematic review provided evidence of the effects of the MCH handbook and other home-based records on mothers’ non-health outcomes. We found positive effects of these records on communication within the household and on mother–child bonding, but mixed effects on mothers’/caregivers’ communication with healthcare providers. Mothers were generally satisfied with the content of the record, but they suggested making it more user-friendly. Their satisfaction with healthcare services, following the use of these records, was associated with providers’ commitment to use or refer to records during check-ups and consultations. However, we noted inconsistency in the use of home-based records across health facilities and professionals.

Of the different types of home-based records, only the MCH handbook may have fostered mother–child bonding. This finding is new and is only found in Japanese articles. Various ways could explain how the use of the MCH handbook facilitated mother–child bonding. First, the handbook was considered a special gift, filled with parental love and mothers’ messages for their children, given to children during their marriage or pregnancy. 74 75 Mothers in Japan wrote down their worries, joy, and expectations from pregnancy and child rearing in the handbook, along with some healthy behaviours that could be passed on to the next generation. 75 80 Losing these handbooks to a natural disaster was a painful experience for Japanese mothers, as it meant losing all their pregnancy and child health records. 77 Second, the handbook could be used to predict the child’s school adaptation, 79 and the possible course of pregnancy and delivery for the daughter. 76 That is, school maladaptation was evident among children whose mothers had recorded at least one incident of worry or anxiety in the MCH handbook. This can be attributed to the fact that the emotional bond with the mother is critical for the child’s social, emotional and cognitive development. 81–83 Thus, the mother’s worry or anxiety is likely to hinder the development of such a bond, leading to difficulties in adaptation for the child. Third, it served as an aide-memoire for mothers who had experienced neonatal death. 35 36 Mothers’ words of gratitude written in the handbook served as evidence of the bonds formed during pregnancy. Finally, the handbook served as a tool to help reduce parental anxiety and build good parent–child relationships, even among adoptive parents. 78 Overall, the findings showed that the MCH handbook is an essential source of information to learn more about the mother–child relationship. The bonding formation may be attributed to the integration of MCH records and how mothers in Japan use the handbook.

Mothers were generally satisfied with home-based records and were in favour of making them available permanently. Satisfaction and support were exceptionally high among parents of children with chronic diseases. 44 However, several issues were noted regarding the design and content of these records. Accordingly, participants in one study suggested making the MCH handbook more user-friendly by choosing an appropriate size, using easy-to-understand expressions, and including more relevant content for parents. 64 In Mongolia, users suggested the inclusion of blank space for doctors’ notes, advice for fathers, and information on tobacco and alcohol use. 53 Such feedback from end-users and communities should be incorporated into the design and content of home-based records to ensure that these records align with the local context and individual needs, and are, therefore, more likely to be adopted and used in the long term.

Healthcare providers’ commitment to using home-based records was found to influence mothers’ satisfaction with health services. For Japanese mothers, the information (pertaining to delivery, vaccination, neonatal health, etc) in the handbook filled out by healthcare providers was the most useful. 74 Alternately, information related to child and maternal oral hygiene in the handbook was least useful. 72 Thus, mothers were more satisfied with health services when they received health information directly from their healthcare providers. Furthermore, in South Africa, mothers were unsure of what to do with the weight-for-age chart, immunisation schedule and milestone section. 43 Unused sections may be perceived as being unnecessary and may undermine the value of the entire record. Hence, it is crucial that both mothers and healthcare providers be encouraged to fully use these records.

However, we observed inconsistencies in the use of records across health facilities and professionals, which might discourage mothers from using home-based records. Private clinics and hospitals were less likely to use the records than public and primary care settings. 43 46 67 Moreover, doctors (eg, general practitioners, paediatricians) were less likely to use and refer to home-based records than nurses and health visitors during check-ups and consultations. 57 67 69 This finding is consistent with that from a previous systematic review. 11 Generally, community nurses are the most likely professionals to use/refer to the home-based records in the health facilities. 11 Such reluctance from doctors to fill out a home-based record may arise if they are not properly oriented to see the benefits of using these records for themselves and their patients.

Home-based records were regarded as being effective tools for communication and relationship building between mothers/caregivers and healthcare providers. 40 42 47 49 51 However, the healthcare provider’s attitude towards home-based records acted as a barrier to communication. While some providers did not provide a satisfactory explanation for using the records when they were issued to mothers, 46 others relied primarily on the written information in the MCH handbook and neglected interpersonal communication. 34 Furthermore, ethnic minority women in Vietnam reported receiving health information from providers that was non-specific and not relevant to their context. 34 For instance, they were not given specific dietary advice and told to eat from all food groups and take iron supplements when they ‘lack blood,’ which is unclear how they would assess this themselves. 34 This finding is new and requires special attention. That is, it is imperative that the handbook offers personalised guidance, especially for women with lower education and from minority populations. This can help build trust and strong partnerships between mothers and healthcare providers and reduce barriers for women in accessing healthcare. 38 84 85

Lastly, home-based records provided a mechanism to improve communication within the household and clarify pregnancy-related and child care-related misconceptions among family members. For instance, in Palestine and Indonesia, women who shared the MCH handbook with their husbands experienced greater involvement from them during pregnancy, delivery and childcare. 38 39 In Australia, home-based records provided opportunities for pregnant women to share their journeys with their husbands, grandparents and friends. 40 These findings are consistent with a review conducted by Magwood et al . 13 Given that previous studies have identified the influence of mothers-in-law and gender roles as barriers to husbands’ involvement in childcare, 86–88 use of home-based records may help overcome these barriers to increase husbands’ involvement.

This systematic review, however, has several limitations. First, we obtained our results primarily from observational and qualitative studies, as only four RCTs were available for this review. The Cochrane Handbook recommends including observational studies if RCTs cannot completely answer the research question. 89 While the findings from observational and qualitative studies provide evidence necessary to answer our research question, these findings should be interpreted with caution owing to potential biases and low certainty of evidence according to the GRADE and GRADE-CerQUAL criteria. Second, we could not perform a subgroup analysis to compare HIC and LMIC or a network meta-analysis to compare different types of home-based records due to an insufficient number of studies. Thus, we only summarised the data based on the country where the study was conducted and the types of home-based records used. Third, we observed marked heterogeneity across studies regarding the study designs, intervention types and comparator groups, all of which may have modified the study outcomes. Hence, we conducted a narrative synthesis, and evaluated the risk of bias and certainty of evidence for all included studies.

Despite these limitations, this systematic review had its own strengths in that it examined a relatively large number of studies that were published in English or Japanese and encompassed several study designs, to highlight the effects of home-based records on mothers’ non-health outcomes.

The effectiveness of home-based records can be measured using mothers’ non-health outcomes. Among them, the MCH handbook fostered mother–child bonding. This outcome could be added to the WHO’s recommendations on home-based records for MNCH. Healthcare providers may choose to refer to the mothers’ notes in the MCH handbook to address issues in the bonding process. Mothers were generally satisfied with the use of home-based records, but their engagement depended on how these records were communicated and utilised by healthcare providers. Thus, various types of training must be conducted at the local level across health facilities and for all healthcare professionals to orient them to the use and benefits of home-based records and, therefore, help them provide patient-centred care. Moreover, we should monitor and evaluate the use of the MCH handbook and other home-based records to ensure their effective implementation. Policymakers need to consider the non-health-related value of home-based records and ensure that mothers and their children are not left behind in the era of SDGs.

Supplementary Material

Contributors: Conceptualisation: RRC, JLS, MKK, AS, EY, MB and MJ; data curation: RRC, JLS and MKK; formal analysis: RRC, JLS, MKK and AS; funding acquisition: AS and MJ; investigation: RRC, JLS and MKK; methodology: RRC, JLS, MKK, AS, EY, MB and MJ; project administration: AS and MJ; supervision: MJ; validation: AS, EY, MB and MJ; visualisation: RRC and AS; writing-original draft: RRC; writing-review and editing: RRC, JLS, MKK, AS, EY, MB and MJ; Guarantor: MJ. All authors critically reviewed and approved the manuscript.

Funding: This research was funded by the Program of Bilateral Health and Medical Cooperation between Japan and the Russian Federation, Ministry of Health, Labour and Welfare, Japan.

Competing interests: None declared.

Patient and public involvement: Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review: Not commissioned; externally peer reviewed.

Supplemental material: This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

Data availability statement

Ethics statements, patient consent for publication.

Not applicable.

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Item of Interest: NICHD Leads Summer Workshops on Women’s Health

The month of May 2024 includes notable women’s health-related observances, including Women’s Health Month, National Women’s Health Week, Preeclampsia Awareness Month, and Menstrual Hygiene Day. NICHD has a more than 60-year history of leading and supporting research on women’s health.

As May concludes, we invite you to continue prioritizing health topics that are unique to women. In June and July, NICHD is co-hosting several workshops and virtual meetings. Please consider registering to participate in discussions and to help shape future research and care.

Workshop on Placenta Accreta Spectrum (PAS): Present and Future

June 10-11, 2024.

PAS, a condition when the placenta fails to detach from the uterine wall during delivery, poses a serious risk of morbidity and mortality for pregnant individuals. Timely and accurate diagnosis of PAS, along with effective management strategies such as determining the right time for delivery, preoperative planning, intraoperative approach, and postoperative care, are essential steps to improve maternal outcomes. This workshop convenes experts, health care providers, and stakeholders, including representatives from the American College of Obstetricians and Gynecologists, the American Institute of Ultrasound in Medicine, the Pan-American Society for the Placenta Accreta Spectrum, the Society of Gynecologic Oncology, and the Society for Maternal Fetal Medicine, to collaborate on shaping future research in the field of PAS.

For more information, visit https://www.nichd.nih.gov/about/meetings/2024/061024 .

Third Annual Gynecologic Pain Research Virtual Meeting

June 13, 2024.

This virtual meeting will bring together investigators in the field of gynecology and pain research to facilitate collaboration and networking. Participants will share ideas and discuss emerging trends within gynecologic pain research and within the wider field of chronic pain. Additionally, staff from the U.S. Food and Drug Administration (FDA) will provide an overview of the FDA review of gynecological devices and investigational new drug processes.

For more information, visit https://www.nichd.nih.gov/about/meetings/2024/061424 .

Envisioning the Future of HIV/Sexually Transmitted Infections (STI) Prevention and Contraception

June 24-25, 2024.

Multipurpose prevention technologies (MPTs) are innovative products designed to deliver combinations of HIV and STI preventatives, as well as contraception. Currently, there are two dozen MPTs in development, using a range of delivery platforms, such as intravaginal rings, films, gels, and implants. Despite the complexities and challenges faced by the MPT field, these products hold promise in revolutionizing women's health by offering multiple uses in single products. The MPT Summit will build on the work accomplished over the past 15 years to advance the field of MPTs and explore what is needed to help ensure MPTs reach the hands of users.

Implementing a Maternal health & PRegnancy Outcomes Vision for Everyone (IMPROVE) Initiative Connecting the Community Research Showcase

July 11, 2024.

IMPROVE is an NIH-wide initiative led by NICHD, the Office of Research on Women’s Health, and the National Institute of Nursing Research that was established in response to the rising U.S. rates of pregnancy-related deaths. This multipronged, innovative research effort is designed to address maternal mortality and morbidity, including severe maternal morbidity, and improve maternal health before, during, and after pregnancy. This showcase will spotlight the efforts of eight local community organizations taking part in IMPROVE’s Connecting the Community for Maternal Health Challenge. This challenge’s goal is to help nonprofit organizations overcome structural barriers and enhance their capabilities, infrastructure, and experience to compete for federal funding and conduct research projects to improve maternal health outcomes in their communities.

For more information, visit https://www.nichd.nih.gov/about/meetings/2024/071124 .