Needs assessment for behavioral parent training for ADHD in Brazil

Introduction: Attention-Deficit/Hyperactivity Disorder (ADHD) is a debilitating condition affecting children and their families worldwide. Behavioral parent training is a recommended form of empirically supported non-pharmacological intervention for young children with mild to moderate ADHD. However, access to such treatment is limited in many countries. Here we identify the treatment needs of Brazilian families with children demonstrating symptoms of ADHD, and the barriers families face in accessing behavioral treatment.

Methods: A qualitative needs assessment was undertaken with parents (n = 23), educators (n = 15), and healthcare providers (n = 16). Semi-structured telephone interviews were conducted, and common themes were identified through inductive coding of participants’ responses.

Results: Participants reported a lack of accessible behavioral treatment, and delays in accessing treatment when available. The majority of parents had not received behavioral parent training, despite it being a recommended form of treatment. Parents, educators and healthcare providers strongly endorsed a need for practical tools to manage the behavior of children with ADHD.

Conclusion: Existing services might not meet the needs of children with ADHD and their families in Brazil. Easily accessed behavioral parent training programs are recommended to address the identified treatment gap for Brazilian children with ADHD and their families.

1. Introduction

The availability of mental health treatment for children is limited worldwide, especially in low and middle-income countries (1). This is certainly the situation in Brazil. A recent study showed that in two large cities in southern Brazil, 80% of children who need mental health interventions do not receive them (2); the rate is likely even higher in other parts of the country with fewer resources. A lack of trained professionals and infrastructure has been identified as the main reasons for such unmet needs (3, 4). These figures reflect institutional service use across the range of neurodevelopmental and psychiatric disorders. Little is known about the individual experiences of families using or attempting to access support for their children.

Such unmet treatment needs are exemplified by Attention Deficit and Hyperactivity Disorder (ADHD), a common neurodevelopmental disorder with a reported prevalence ranging from 2% to 7.6% (5–9). Recommended treatments include medication and psychosocial interventions. In Brazil, the most readily available treatment is pharmacotherapy; however, the published research indicates that less than 20% of children with ADHD are prescribed medication for symptom management (10). Little information is available regarding access to, and use of, empirically supported non-pharmacological interventions for ADHD (11).

Internationally, empirically supported behavioral parent training (BPT) (12, 13) alone, or in combination with other psychosocial treatments, e.g., classroom management or child skills groups (14), is recommended in the management of mild to moderate ADHD in children. A tiered approach is available and recommended in some countries; for example, group parent-training (for young children) and the provision of information about ADHD (causes and impact) together with parenting guidance and school liaison (for school-aged children), prior to more intensive individualized BPT.¹ BPT teaches parenting strategies to encourage appropriate behavior and reduce undesired behaviors in children (15). Strategies include communicating with children in ways to increase behavioral compliance, and when and how to reward children for desired behavior to increase the likelihood of it being repeated (16). To the best of our knowledge, access to BPT in Brazil is currently very limited, with the most commonly available non-pharmacological intervention being psychoanalysis, especially in public health services (11). It is also unclear whether Brazilian parents would be motivated to take part in BPT if available.

Missing from the literature on the management of ADHD in Brazil is an understanding of the self-reported needs of families of children with ADHD. To address this gap, we undertook a qualitative needs assessment with the aim of identifying barriers to Brazilian families accessing psychosocial interventions, especially behavioral treatment, as well as the desired content of such support and the preferred mode of delivery. The current study focused on the first-hand experiences of adults who care for children with ADHD (17) to inform the development of an accessible BPT program, delivered online. Semi-structured interviews were conducted with parents of children with ADHD, as well as educators and healthcare providers working with these families. Interviews explored (1) experiences of seeking/providing support for children with ADHD to understand the barriers to accessing treatment and (2) information and support families currently have, need, or want. Based on their responses, common themes were identified. By incorporating the voices of parents and professionals (18), we hoped to determine whether behavioral management training would be appropriate for, and accepted by, Brazilian families and how such skills could be delivered (19, 20).

2. Methods

The project was reviewed and approved by the IDOR ethics committee (CAAE: 39967020.8.0000.5249). All participants were volunteers and provided written consent.

2.1. Participants

2.1.1. Parents

Participants were parents of children previously diagnosed with ADHD by their physicians (78%) or demonstrating elevated symptoms of ADHD. The presence of comorbid conditions in the children did not exclude participation. The final sample comprised 23 parents (19 mothers, 4 fathers) with children aged 4 to 16 years, 30% girls. Most of the children received education (74%) and healthcare (78%) from the private sector. The participating families were mostly middle-class (ABEP classes B and C) (21), with the parents’ years of education ranging from 10 to 20 years.

2.1.2. Educators and healthcare providers

Professionals participating in the study included 15 educators [6 education specialists (usually referred as pedagogues in Brazil), 5 teachers, 2 school principals, 2 school counselors/psychologists; 6 working in private, 6 in public and 3 in both settings], and 16 healthcare providers (5 psychiatrists, 5 psychologists, 3 speech therapists and 3 pediatricians, 7 working in private, 3 in public and 6 in both settings).

2.2. Procedures

Participating parents were recruited through three websites.² This sampling method was chosen to mirror the recruitment strategies for the planned online BPT program; i.e., participants in the current study would be similar to those expected to enroll in the online intervention. Parents expressing interest in participating were asked to complete the SNAP-IV, a widely used ADHD rating scale (22, 23), prior to taking part. Those reporting that their child frequently displays 6 or more symptoms of inattention and/or hyperactivity/impulsivity were invited to participate.

Professional participants (educators and healthcare providers) were recruited via existing professional contacts of the researchers, making sure that they represent diverse disciplines and those working in private and public sectors and serving socioeconomically diverse families. No screening procedures were included for professionals wishing to participate.

Prospective participants were sent an online consent form via Whatsapp. Upon completion of the consent form, they were contacted by the researchers to schedule a phone interview. Interviews were conducted from January to June 2021, by a team of three post-doctoral and -masters researchers, under the supervision of a senior psychiatrist (PM). The interviews lasted from 30 min (with professionals) to 1 h (with parents). Interviews were recorded and later transcribed.

Interviews with parents and professionals included questions addressing: (1) experiences of, and barriers to, families accessing psychosocial, in particular behavioral, treatment for ADHD; (2) parents’ level of knowledge about ADHD, comorbid conditions and treatment options (for professionals, this referred to the knowledge of the parents they interact with); and (3) information and support parents want and need to better assist their children and manage their children’s ADHD symptoms. Parent interviews also included questions about the parenting strategies they currently use, difficulties experienced in managing their children’s behavior, challenges experienced during the COVID-19 pandemic, and sources of information they access to learn about ADHD and parenting. Interview questions are presented in the Supplementary material.

An inductive coding strategy was used to explore narratives emerging from the data. Two rounds of coding were carried out using Delve software.³ One of the researchers (PB) completed initial coding using a combination of in vivo coding (using participants’ own words) and structural coding (codes limited by the topics introduced in the interview questions). Consistent with the goals of the study, the coder looked for words and phrases that indicated (1) experiences of and barriers to families accessing behavioral treatment, (2) information parents currently have, difficulties they and their children experience, and strategies they use, and (3) information and support families need and want, and the preferred modality for accessing them. Given the interviews were conducted during the COVID-19 related restrictions, the researcher separately coded pandemic specific responses, in terms of the difficulties families experienced with their child’s behavior and accessing care. The codes generated through this process were organized into main categories and subcategories. Two additional researchers (RC, CB) subsequently reviewed the data. The three researchers discussed edits and additions to the codes until they reached consensus (see Supplementary material for the categories and main categories identified). Next, the primary coder carried out thematic analysis to identify common themes based on the codes that were frequently referenced in participants’ responses. Research team members (PB, RC, CB, EF) discussed these themes until they reached consensus. There was no criteria as to the minimum number of participants mentioning a theme for the theme to be identified. Rather, efforts were made to create themes that are inclusive of participants’ responses. These themes are presented in narrative form in the Results.

3. Results

Table 1 presents participant characteristics. While efforts were made to recruit parents of children receiving healthcare from the public and private sectors, with diverse socioeconomic backgrounds, the participants were mostly middle class and accessed healthcare from the private sector. This likely reflects the fact that the parents learned about the current study online and volunteered to participate; thus they were parents with greater access to resources. Efforts to recruit professional participants in different roles, who work in public and private sectors servicing diverse families, were more successful.

TABLE 1

Table 1. Participant characteristics.

Qualitative narratives, generated based on the common themes identified via inductive coding, are presented below. The percentages of participants whose individual responses fit within these themes, and final codes and exemplar responses associated with the themes are presented in the Table 2.

TABLE 2

Table 2. Codes and exemplar responses associated with the final themes generated from the needs assessment interviews, and the percentage of participants whose individual responses referenced each theme.

3.1. Barriers to accessing psychosocial interventions

Two major barriers to access were identified: (1) difficulty obtaining a diagnosis prior to accessing psychosocial interventions, and (2) a lack of availability of behaviorally oriented treatments, in particular BPT.

Many parents (57%) reported that school personnel initially raised concerns about their child’s behavior, with parents seeking a diagnostic evaluation prior to receiving any treatment. Parents (74%) noted a long delay, and/or needing to see multiple professionals, before obtaining a diagnosis. The reports of educators (93%) and healthcare providers (35%) also reflected delays in children receiving a diagnosis, but also in parents seeking and then accepting their child’s diagnosis. The responses of both parents and professionals were indicative of perceived stigma contributing to the delay in obtaining a diagnosis and subsequent treatment. Healthcare providers noted that parents are often afraid of their child receiving a diagnosis, believing that ADHD is like severe Autism Spectrum Disorder and their child would be excluded from regular education.

The responses of parents (52%) and professionals (86% educators and 100% healthcare providers) also indicated a lack of quality and affordable non-pharmacological services. Among the parents interviewed, while almost half reported their child had received some form of psychotherapy, most indicated no or minimal parental involvement in the treatment (i.e., treatment consisting of a child meeting with a psychologist/psychoanalyst alone). One parent indicated learning behavioral management strategies from professionals involved in the child’s care, and another reported meeting regularly with the child’s psychologist. Two parents reported they received, or were planning to participate in, behavioral management training. Both educators and healthcare providers raised concerns that parents often do not recognize the need for treatment or lack knowledge regarding appropriate treatment for ADHD.

While parents and professionals generally agreed that barriers to treatment access exist and are problematic, parents’ responses focused on the lack of availability while professionals’ responses focused on parents’ reluctance in seeking and accepting support.

3.2. Information parents have and want/need to better support their children

The responses of both parents (52%) and professionals (58% educators and 70% healthcare providers) indicated that parents would benefit from having a better understanding of ADHD and its comorbid conditions. In particular, while correctly identifying the symptoms of ADHD and listing behaviors associated with the disorder (96%), parents struggled to identify which of their children’s behaviors are due to ADHD, a comorbid condition, the child’s personality or a lack of motivation. They reported a wide range of difficulties (43% emotional, 74% learning/school, 61% social difficulties, 30% non-compliance, and 65% daily routines). Healthcare providers further reported that many parents believe ADHD is a learning problem and look for a diagnosis and assistance from educational specialists, rather than doctors or psychologists. Educators reported confusion amongst parents regarding their child’s difficulties and needs, also noting some avoidance by healthcare providers to use diagnostic labels.

The majority of parents (70%) referenced the need for information on how to manage their child’s behavior, as well as their own behavior and emotions when interacting with their child (60%). They elaborated that their child’s behavior negatively affected family relationships and that they experienced significant stress. They wanted to know how to make everyday routines easier and more pleasant, with fewer arguments and less frustration. Parents (78%) also noted wanting information on how to assist their child’s learning and organizational difficulties, how to communicate their concerns to their child’s school, and how to prevent their child from experiencing future hardships and being discriminated against. Educators (67%) identified the importance of providing parents with practical strategies on how to assist their child at home. Healthcare providers (47%) reported that families would especially benefit from support to increase structure and to improve communication in the home.

Overall, parents and professionals seemed to agree on the need for parents to have a clearer understanding of factors that contribute to the child’s behavioral difficulties and how to address them. However, even amongst professionals, there may not be consensus as to the specific nature of these difficulties.

3.3. Current parenting strategies employed

Parents were also asked about how they currently manage their children’s behavior. One parent was well informed about behavior management techniques consistent with those taught in BPT programs, but others reported having very little knowledge about how to support their children beyond common, generic parenting strategies (e.g., being positive with my child). Many parents reported using rewards, such as praise (78%), food and toys (17%), for good behavior. However, the use of praise was usually non-specific, and some parents questioned the appropriateness or effectiveness of such rewards for behavior management (4% reporting selective use of positive reinforcement for appropriate behavior). Other strategies reported included talking to the child about their behavior (56%) and implementing consequences, e.g., taking things away (26%), and using time out (13%) or grounding (26%). Raising voices (yelling/screaming) was not uncommon (34%), while some reported hitting their child (13%). Many parents noted continued difficulties in managing children’s behavior despite trying multiple strategies.

3.4. Difficulties during COVID-19

Interviews took place during the COVID pandemic when most schools were closed. Treatment and evaluation services were also interrupted during this time (30%). Parents reported increased behavioral and emotional difficulties in their children (57%). They also worried about their children spending more time on screen and not having opportunities for social interaction. Many parents (70%) reported increased stress for themselves, due greater demands on them, often juggling work, childcare and assisting with their children’s online schooling.

3.5. Online information sources

As we were aware that many parents seek information about children’s behavioral difficulties and parenting strategies online, we included questions about where and how parents seek such information. Parents (61%) reported using popular online platforms such as Instagram and Whatsapp parent groups, as well as accessing professional websites such as ABDA (Brazilian Association for Attention Deficit). All parents (100%) reported accessing such information using their cell phones. While able to access information on the nature of ADHD from these sites, many parents (74%) reported difficulty finding practical information on how to manage their children’s difficulties in everyday life.

4. Discussion

A qualitative needs assessment was carried out to understand the experiences and behavioral treatment needs of families with children demonstrating ADHD symptoms. Semi-structured interviews were conducted with parents, educators, and healthcare providers. Common themes were identified via inductive coding of the interview responses. Given these themes are presented in a narrative form in the results, here we highlight those that are most relevant to the study aims.

Many of the parents who volunteered to take part in this study had sought some form of psychosocial treatment, in addition to medication. Among those whose children participated in psychotherapy, the majority reported their child meeting alone with the therapist with little parental involvement in the intervention. A small number of parents reported learning behavioral management strategies from healthcare providers. When parents were probed for the information and support they desired, many reported wanting practical information on how to manage their children’s behaviors in everyday life. They also reported experiencing significant stress and wanting to know how they could better manage their own reactions when their child does not follow their directions. Healthcare providers and educators noted that many families would benefit from learning how to create structure and develop routines in the household, and how to assist and interact with their children with ADHD at home. Some parents and professionals reported that families would also benefit from learning more about ADHD generally. However, many parents reported that information about ADHD can be found online, but that it is more difficult to find information about practical parenting strategies that work with children with ADHD. This highlights the need for demonstrations of such strategies via easily accessible formats, such as short videos.

The need for a formal diagnosis delayed treatment access for many families. This was partly due to the lack of providers offering diagnostic services. However, parents’ hesitancy in seeking and receiving a diagnosis also contributed to this delay. Many parents reported that they only sought out a diagnosis after their child’s school asked them to do so. They noted that it was challenging for them to accept that their child’s difficulties qualified for a diagnosis, or they were worried that having a diagnosis would result in discrimination and loss of educational opportunities. The responses of educators and healthcare providers confirmed that families are reluctant or afraid of seeking a diagnosis. Their responses also indicated that families are not usually aware of treatment options, with many thinking medication is the only choice. Other families prefer homeopathic treatment or educational assistance. Consistent with the literature (2, 3), educators and healthcare providers also described limited availability of accessible non-pharmacological treatment for ADHD.

These data highlight the need for increased availability of accessible non-pharmacological interventions for ADHD. These interventions should have empirical support to reduce commonly reported behavioral difficulties of children with ADHD and parental distress. Behavioral parent training fits this criteria. A pre-diagnostic, and/or post diagnosis, early behavioral intervention might be appropriate for Brazilian communities. Behavior management strategies can be useful for parents who have concerns about their child’s behavior, but have not sought or received a diagnosis for the child. Such early intervention programs have been disseminated successfully in other countries (24–26); for example, specific treatment recommendations, or treatment itself, are provided at regular developmental check-ups and through schools. While a careful diagnostic evaluation is important in developing individually tailored treatment plans, it is also important to reduce delays in families accessing accurate information about ADHD and behavioral strategies to help manage children’s behavior.

Ease of access is critical in the uptake of such early intervention programs. One way to disseminate behavioral management strategies for free or at low cost to families may be via online platforms. Such an approach is foreshadowed in calls for tiered child mental health care involving digital tools in Brazil (27). BPT programs have been offered online in other countries with emerging empirical support (28–30). Many Brazilians access information online with cell phones, which are widely available even amongst low-income communities (31, 32). Phone-based digital platforms could be considered for dissemination of behavioral parent training for families of children with mild to moderate ADHD.

The current study provided an opportunity to hear directly from parents, and those working with families, what is needed to better support families of children with ADHD in Brazil, albeit with a relatively small sample. In recruiting parents, we relied on their reports of their children’s symptoms. Thus, the sample includes those with a formal diagnosis of ADHD as well as those demonstrating elevated symptoms of ADHD, increasing the generalizability of the findings. The parents learned about the current study online and volunteered to participate; thus they were likely a sample of motivated parents with resources to access the study information and are not representative of the entire Brazilian population needing treatment for their children with ADHD. While this sampling method mirrored the recruitment strategy planned for the online program in development, this may have impacted the findings. Among the lower-resourced families, the availability of affordable treatment is likely even more scarce, and the acceptance and knowledge about behavioral disorders and treatment is likely more limited (33, 34). As a counterpoint, responses from educators and healthcare providers working in both private and public sectors provided diverse perspectives. As in all qualitative research, the influence of the researchers’ viewpoints and experiences needs to be acknowledged. However, we used consensus among three researchers from different professional backgrounds (psychiatrist, psychologist, neuroscientist) in coding the data, which were then reviewed by two senior researchers (GT, PM) who were not involved in data collection.

The in-depth interviews with the stakeholders of a planned online BPT program provided important insights regarding necessary content and possible delivery strategies. The themes emerging from the current study, and the literature on psychosocial treatment for ADHD, also suggest behavioral parent training programs would be an important addition to child mental health services in Brazil. Such programs should be easily accessible, offer practical strategies for dealing with everyday life challenges, and provide support for parents. The dissemination of such programs would help address existing treatment gaps for Brazilian children with ADHD and their families. To support such dissemination, community wide educational programing may also be needed. Helping parents, educators, and healthcare providers understand the importance of recognizing ADHD and receiving caregiver-focused therapy would increase the acceptability of parent training programs. Given that school personnel are usually the first to raise concerns about the child’s behaviors and act as facilitators for help seeking, schools may be particularly suited for such educational programming and for reaching the families who may benefit from an online BPT program.

Data availability statement

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

Ethics statement

This study involving human participants was reviewed and approved by the D’Or Institute for Research and Education Ethics Committee (CEP #5249). The participants provided their written informed consent to participate in this study.

Author contributions

GT, PM, and EF contributed to the conception and design of the study. PB, RQ, and CB organized the database and performed the qualitative analysis. PB and EF wrote the first draft of the manuscript. All authors contributed to the manuscript revision, read, and approved the submitted version.

Funding

This study was supported by a joint research agreement between Okinawa Institute of Science and Technology (OIST) and D’Or Institute for Research and Education (IDOR).

Conflict of interest

PM has received research grant and speaker honoraria from Takeda in the last 3 years.

The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher’s note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Supplementary material

The Supplementary material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpsyt.2023.1191289/full#supplementary-material

SUPPLEMENTARY DATA SHEET 1 | Interview questions.

SUPPLEMENTARY DATA SHEET 2 | English translation of interview questions.

SUPPLEMENTARY DATA SHEET 3 | Categories and subcategories for initial coding.

Footnotes

1. ^https://www.nice.org.uk/guidance/ng87/chapter/Recommendations#managing-adhd

2. ^www.habitepais.com.br; https://www.rededorsaoluiz.com.br/instituto/idor; https://tdah.org.br/

3. ^https://delvetool.com/

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