INTERPRETING ATYPICAL EATING PRACTICES AND BEHAVIORS AS CONTRIBUTING FACTORS IN FOSTERING FAMILY RESILIENCEABSTRACT
Objective: to understand Atypical Eating Practices and Behaviors as elements of the resilience process in families with children diagnosed with Autism Spectrum Disorder.
Method: a qualitative study using a multiple case study approach. Twenty-five families from five Brazilian states participated. Data were collected between June 2021 and August 2022 through online interviews. A general analytical strategy was employed, processing the data from scratch, along with the cross-case synthesis analytical technique. The analysis enabled the abstraction of a general theoretical explanation.
Results: the following theoretical categories emerged: Atypical Eating Practices and Behaviors and Perceptions of Practices and Strategies. Assigning meaning to Atypical Eating Practices and Behaviors as elements of the family resilience process involves understanding that when families recognize and invest in key processes, share them internally and externally, they begin to normalize their children's needs regarding eating practices and behaviors. Families demonstrate that they do not limit potential based on the condition, thereby promoting the child’s holistic development. The study identifies the child’s autonomy and the family’s organization to provide meaningful support, aiming to implement changes and strategies in daily food-related activities that include the child.
Conclusion: families strive to recognize their beliefs, organization, and communication regarding their children's eating habits, seeking ways to strengthen family functioning and resilience. The theoretical framework developed in this study may be modified; however, once validated, it can be used by professionals working in clinical practice with families and in the development of interventions aimed at promoting family resilience processes.
DESCRIPTORS:
Eating behavior; Child; Family; Psychological resilience; Autism Spectrum disorder
RESUMO
Objetivo: compreender as Práticas e Comportamentos Alimentares Atípicos como elementos do processo de Resiliência de Famílias com Crianças com Transtorno do Espectro Autista.
Método: pesquisa qualitativa do tipo estudo de casos múltiplos. Participaram 25 famílias de cinco estados brasileiros. Os dados foram coletados entre junho de 2021 a agosto de 2022, mediante entrevistas online. Utilizou-se a estratégia analítica geral, tratando seus dados a partir do zero, e a técnica analítica da síntese de casos cruzados. A análise possibilitou a abstração de uma explicação geral teórica.
Resultados: emergiram as categorias teóricas: Práticas e Comportamentos Alimentares Atípicos; Percepções sobre as práticas e Estratégias. Dar significado às Práticas e Comportamentos Alimentares Atípicos como elementos do processo de resiliência familiar, é entender que quando a família reconhece e investe nos processos-chave, os compartilham interna e externamente, passam a normalizar as necessidades dos filhos quanto às Práticas e Comportamentos Alimentares. Revelam não limitar o potencial à condição, promovendo o desenvolvimento integral da criança. Identifica-se a autonomia da criança, a organização para um apoio significativo, a fim de promover mudanças e estratégias nas atividades diárias relacionadas à alimentação incluindo a criança.
Conclusão: as famílias buscam reconhecer suas crenças, organização e comunicação em relação à alimentação de seus filhos, perscrutam meios para fortalecer o funcionamento e resiliência familiar. A estrutura teórica desenvolvida neste estudo pode ser modificada, no entanto, uma vez validada, poderá ser utilizada por profissionais que atuam na prática clínica com as famílias e no desenvolvimento de intervenções voltadas para a promoção dos processos de resiliência familiar.
DESCRITORES:
Comportamento alimentar; Criança; Família; Resiliência psicológica; Transtorno do espectro autista
RESUMEN
Objetivo: comprender las Prácticas y Comportamientos Alimentarios Atípicos como elementos del proceso de resiliencia en familias con hijos diagnosticados con Trastorno del Espectro Autista (TEA).
Método: estudio cualitativo con enfoque de estudio de casos múltiples. Participaron veinticinco familias de cinco estados brasileños. Los datos fueron recolectados entre junio de 2021 y agosto de 2022 mediante entrevistas en línea. Se empleó una estrategia analítica general, procesando los datos desde cero, junto con la técnica de síntesis analítica entre casos. El análisis permitió abstraer una explicación teórica general.
Resultados: surgieron las siguientes categorías teóricas: Prácticas y Comportamientos Alimentarios Atípicos y Percepciones de Prácticas y Estrategias. Asignar significado a las Prácticas y Comportamientos Alimentarios Atípicos como elementos del proceso de resiliencia familiar implica comprender que, cuando las familias reconocen e invierten en procesos clave, los comparten interna y externamente, comienzan a normalizar las necesidades alimentarias de sus hijos. Las familias demuestran que no limitan el potencial en función de la condición, promoviendo así el desarrollo integral del niño. El estudio identifica la autonomía del niño y la organización familiar para brindar apoyo significativo, con el objetivo de implementar cambios y estrategias en las actividades alimentarias cotidianas que incluyan al niño.
Conclusión: las familias se esfuerzan por reconocer sus creencias, organización y comunicación en relación con los hábitos alimentarios de sus hijos, buscando formas de fortalecer el funcionamiento familiar y la resiliencia. El marco teórico desarrollado en este estudio puede ser modificado; sin embargo, una vez validado, puede ser utilizado por profesionales que trabajan en la práctica clínica con familias y en el desarrollo de intervenciones orientadas a promover procesos de resiliencia familiar.
DESCRIPTORES:
Comportamiento alimentario; Niño; Familia; Resiliencia psicológica; Trastorno del espectro autista
INTRODUCTION
Autism Spectrum Disorder (ASD) is a neurodevelopmental condition that manifests in the early years of life1. Some changes caused by ASD in children may include sensory processing manifestations such as hyper or hyposensitivity to auditory, olfactory, gustatory, visual, and tactile stimuli2. Researchers agree that feeding issues commonly expected during child development are amplified in children with ASD3. Studies have emphasized the importance of research to differentiate feeding problems within this population3. These issues may be related to limited food preferences, sensory sensitivities, preference for specific food brands, and also to behavioral aspects, such as ritualistic and/or idiosyncratic eating behaviors. This is because eating and the act of feeding reflect both individual and collective behaviors, which is why they are being revisited by researchers.
Discussing feeding from a psychosocial and cultural perspective means recognizing the people involved in it and those who construct it daily. It considers ideas, images, memories, emotions, and the entire dynamic and multifaceted complexity of the human feeding phenomenon5. Eating practices and behaviors are conceptualized by considering the sociocultural aspects of this process, that is, the individual and collective subjective elements related to the act of eating and to food5.
It is understood that the family is the first group with which the child comes into contact in life, and it is the primary unit that provides socialization6. Faced with signs of ASD in the child, the family begins to experience disruptions in its daily social activities, which hinders relationships among family members and requires reorganization7. This challenging reality for families highlights the need for flexible changes to restore family dynamics, demanding less from traditional family standards in order to promote individual, familial, and social development8-9.
Family resilience is defined by Froma Walsh10 as the processes through which a family adapts more positively in the context of significant adversity. Within this concept, the family is viewed as a system whose organization is structured in levels, expanding from individual resilience to the broader family and relational network. As a functional systemic unit, the family is shaped by both stressful and non-stressful events, occurring in various social contexts. Its aim is to foster positive adaptation among all members and, consequently, strengthen the family unit.
Resilience is shaped by three dynamic key processes that involve strengths and resources families can access and leverage to enhance family resilience. The first key process is the belief system, influenced by how family members perceive adversity and suffering in general10. The second key process involves contemporary family organizational patterns, which encompass diverse structures and resources. Families recognize the need to organize their household and relational networks in varied ways to face life’s challenges. Resilience is reinforced by a flexible structure, strong connectivity, and access to social and economic resources10.
The third key process is communication and problem-solving. These contribute clarity of information during crises, encourage open emotional sharing, and stimulate collaborative and proactive problem-solving. It is important to consider that cultural norms vary widely in how “bad news” are shared and how emotions are expressed. Collaborative problem-solving and readiness are reflected in creative brainstorming, which expands the capacity to overcome adversity. Shared decision-making and conflict management involve negotiating differences with fairness and reciprocity over time10.
Based on the conjunction of the concepts presented, studies with this structure provide theoretical foundations to improve multiprofessional practice. The aim is to contribute to the understanding of different ways to strengthen the holistic and healthy development of children with Autism Spectrum Disorder (ASD), as well as the family resilience processes, offering support for promoting child development and, in the long term, fostering the development of healthy adults11-12. Furthermore, considering that eating practices and behaviors are influenced by different social and cultural contexts, it is essential to understand the realities of families across diverse settings13. Little is known about the eating behavior and patterns of children with ASD, which makes it difficult to identify the key areas to be considered when addressing the nutrition of these children and their families14, as well as the correlation between these factors and the family resilience process15.
In this sense, the guiding research question is: “what are Atypical Eating Practices and Behaviors (AEPB) as elements of the resilience process in families with children diagnosed with Autism Spectrum Disorder?” From this perspective, the objective of the study was to understand Atypical Eating Practices and Behaviors as elements of the resilience process in families with children with Autism Spectrum Disorder.
METHOD
This is a qualitative study of the multiple case study type, descriptive and exploratory in nature, which followed the methodological framework of Yin16 and the theoretical framework of Family Resilience by Froma Walsh10. This type of research allows for an understanding of the subjective dimension of the phenomenon under study, due to the complexity of the problems, relationships, roles, behaviors, feelings, and needs that individuals carry within themselves16.
The study adhered to the criteria established by the Consolidated Criteria for Reporting Qualitative Research - COREQ, which aims to support the reporting of qualitative studies by providing greater detail and transparency. Semi-structured online interviews were conducted with families between June 2021 and August 2022, across five Brazilian states: Ceará, Maranhão, São Paulo, Paraná, and Rio Grande do Sul. Participants were invited through communities and online forums on Portuguese-language (Brazilian) social media platforms, focused on families of children with special needs and specifically on ASD.
Families who expressed interest in participating accessed a Google Forms questionnaire, read and signed the online Informed Consent Form (ICF) and the Authorization for Use of Image and/or Voice Recording for Research, and provided their contact information for the lead researcher to follow up. Interviews were conducted in virtual environments according to the day, time, and preferred platform of each participant (WhatsApp, Google Meet).
The interviews were conducted by the nutritionist researcher pursuing her doctoral studies, who had ten years of experience in conducting qualitative research and had no prior relationship with the study participants.
Inclusion criteria for the study were: being a family member of a child with ASD up to 10 years of age, with a diagnosis confirmed at least three months prior. This age range was defined based on the World Health Organization (WHO) classification, which considers childhood to extend up to 10 years of age17. Family members who were underage, had communication difficulties due to foreign language or biological reasons, or were not directly involved in the care of the child with ASD were excluded from the study.
For this study, the unit of analysis was the family, as family members were considered the interviewees, specifically mothers, grandmothers, and sisters. In this type of study, logical sampling methods are not used to determine sample size16. A non-probabilistic sampling technique known as snowball sampling was employed, in which selected individuals refer new participants from their network of acquaintances, creating a referral chain18. The use of this technique is justified by the geographically dispersed nature of the population and the presence of social stigma16. After each interview, families referred others to participate, continuing this process until theoretical saturation of empirical data was reached19. Eight families were initially recruited through social media, and from their networks, additional families were referred, totaling 26 families within the snowball sampling process. However, five of these families did not meet the inclusion criteria (four were relatives of children older than 10 years at the time of data collection, and one family was still undergoing ASD diagnostic evaluation), and four families withdrew after scheduling. Therefore, the final sample consisted of 25 families of children with ASD.
The interview included questions about family functioning in relation to the child’s and family’s eating practices and behaviors, beginning with the prompt “how does the family manage food, from purchasing to mealtime?” Interviews were recorded (audio and video) and later transcribed and they lasted 51 minutes on average. No interviews were repeated, and field notes were not used in this study. After transcription, the texts were returned to the participating families via WhatsApp or email for review and correction, if necessary. However, no requests for changes were made.
A pilot test was conducted with three families to refine the research instrument and the data collection plan, both in terms of content and the procedures followed during case conduction. The adjustments made were considered minimal by the researchers, and these interviews were not included in the final sample of the study.
For data analysis, an inductive general analytical strategy was used, described as “processing data from scratch.” The interviews were organized into charts, and the statements were analyzed freely, allowing insights to emerge naturally without relying on the guiding research questions. Subsequently, the statements were grouped into theoretical categories. As a deductive analytical technique, the “cross-case synthesis” method was chosen, supported by elements of the family resilience process. Each case was analyzed individually, enabling the identification of whether different cases shared similar profiles and could be considered replications or contrasts16.
The abduction of data led to the development of a general theoretical explanation, represented in Figure 1. This explanation fits each case, even when they present different characteristics. It is similar to the creation of a general scientific explanation for multiple experimental findings16.
Representation of the General Theoretical Explanation of the study - Curitiba, PR, Brazil, 2024.
The evidence was organized and categorized with the support of the Web Qualitative Data Analysis software - webQDA®, collaboratively and online by the researchers involved. This allowed for editing, visualization, interconnection, and organization of the data, as well as collective questioning and validation20. The validation of the analysis occurred during research group meetings, where it was legitimized by experienced researchers in the field.
The research project was approved by the Research Ethics Committee. To ensure confidentiality, each family was identified by the letter “F” followed by an Arabic numeral.
RESULTS
The study consisted of 25 families from three regions of Brazil: Northeast, Southeast, and South, specifically from the states of Ceará (n=7), Maranhão (n=2), São Paulo (n=4), Paraná (n=9), and Rio Grande do Sul (n=3). Two families were represented by the sisters of the child with ASD, while the remaining were represented by the mother. The participants were between 18 and 46 years old, and most were married. Regarding educational background, it ranged from 12 years (completed high school) to 22 years (completed higher education with postgraduate studies at the doctoral level). Family income ranged from less than one to 15 Brazilian minimum wages (minimum wage equivalent to R$1212.00 in the year 2022). The index children totaled 31, including four girls and 27 boys. Five of these families had more than one child diagnosed with ASD (F1, F14, F17, F20, and F23). The age range of the children varied between three and ten years, with an average age of 6.4 years.
Thematic categories
The theoretical categories that emerged from the inductive data analysis were: Atypical Eating Practices and Behaviors (AEPB); Perceptions about Atypical Eating Practices and Behaviors and Strategies for the Child’s Atypical Eating Practices and Behaviors. The first category illustrates the central object of the research, while the others express how the family perceives and incorporates these aspects into their daily lives.
The AEPB category revealed characteristics perceived as part of the child’s identity, the family’s daily organization around food to meet the child’s needs, and the search for solutions to respond to those needs. The following statements illustrate this category:
[...] let’s suppose it might also be related to color, that’s where his selectivity comes in [...] (F3). […] cherry tomatoes, I can’t just buy one tray, I have to buy one for the house and one for him, because he eats it all in one turn (F15). […] if it’s meat with sauce, I have to remove it for him and make it extremely dry before putting it on his plate. That’s something I learned to do to handle his situation (F9).The Perceptions about AEPB category highlights how the family recognizes the child’s autonomy, which can influence their eating practices and behaviors; the boundaries the family sets regarding intervention; the strengthening of dialogue within the family; and how eating difficulties among other family members impact the child’s acceptance. Lastly, it reflects feelings of guilt, perceived difficulty, doubt, and family conflict.
[…] she started eating red sauce on pizza because she prepares it herself. But we always do everything together when it comes to food, and she chooses (F5); […] she (the grandmother) didn’t mind if it stayed on the plate, but I understand and respect their limits during meals (F1); […] look, when we talk to him and change the environment it works because he loves it, like eating while watching TV in the living room, for example (F9); […] so there’s the whole issue of dietary restrictions, both my father and my brother. If it were just my brother, it would be easier. But because my father also has it, it ends up affecting him (F4); […] oh, I feel bad. I wish - like every mother, I suppose - I could see my child eating everything we put on the plate, right? But that’s not how it goes (F20).The final category, Strategies for the Child’s AEPB, broadly exemplifies how families implement actions in their daily routines to support the child’s eating practices and behaviors, the support networks that reinforce them, and the attempts made to create opportunities for the child to explore and try new foods.
[…] when he doesn’t accept anything, I know he’ll eat potatoes (F21); […] because he didn’t go to school, he didn’t have contact with friends during snack time, he didn’t see that imitation thing (F10); […] I think it’s about being something different from what she’s used to. For example, she’s always used to eating at home, with the same plate, the same cutlery, and when she goes somewhere else, she doesn’t want to try what’s different even when we talk and explain it to her (F2).Cross-case synthesis
The deductive analysis is represented by the robust findings of the phenomenon under investigation - namely, the theoretical categories - linked to the concepts of interest: the elements of the Family Resilience process.
System of beliefs
Families recognize that the condition of ASD significantly contributes to the child’s AEPB. This perception is common among families, as they identify specific challenges that ASD imposes on the child’s development, particularly in relation to eating. The resilience-strengthening elements that stand out are linked to families finding meaning in adversity, as they begin to contextualize the stress associated with their child’s needs. From a positive perspective on the resilience process, families manage what is possible within the demands surrounding them, acknowledging that they cannot fully meet all of their child’s needs. They begin to accept the chronic nature of ASD, which cannot be changed. In doing so, they reframe their perception toward change and growth through adversity, normalizing the AEPB with a non-restrictive view of the condition (Chart 1).
Organizational patterns
Families engage in organizational efforts to meet the needs related to AEPB, contributing to its overall functioning. However, they face challenges in implementing this organization, whether due to difficulties in offering healthy foods or resistance from the children. They develop interwoven aspects between formal and informal support networks, which are perceived as strengthening the resilience process when they respect the child’s individual needs, and as vulnerable when there are setbacks in the development of feeding skills, particularly those related to the child’s autonomy (Chart 2).
Communication processes and problem-solving
Families are able to communicate clearly about AEPB, which leads to the integration and normalization of the ASD condition within their belief systems (Chart 3). As a result, they begin to develop more assertive strategies for problem-solving. They face ambiguities and internal conflicts through a collaborative exchange of solutions to overcome their children's feeding-related challenges. Furthermore, they seek a balance between the children's needs and AEPB.
Based on the individual analysis of each case, five families (F6; F9; F10; F12; F15) were selected to represent the synthesis. The characteristics of these families stand out among the 25 participants in the study. Families F9 and F12 presented the most elements considered to be strengthening factors in key resilience processes, while F6, F10, and F15 showed greater vulnerability, as illustrated in Figure 1. It is important to emphasize that for each family, some elements that act as strengths may also represent vulnerabilities, and vice versa.
General Theoretical Explanation - Giving Meaning to Atypical Feeding Practices and Behaviors as Promoting Elements in the Resilience Process of Families of Children with Autism Spectrum Disorder: the general explanation developed in this study contributes to giving meaning to the atypical feeding practices and behaviors of families of children with Autism Spectrum Disorder through the lens of family resilience theory. When families recognize and invest in key processes, sharing them within the family nucleus and beyond, they begin to normalize their children’s needs regarding AEPB. This approach avoids limiting the child’s potential to their condition, instead promoting their holistic development. The child’s autonomy is identified and families begin to organize themselves to provide meaningful support, enabling changes in daily living activities related to AEPB. By finding strategies such as including the child in AEPB-related routines, families begin to build their own resilience process.
In this sense, strengthening and vulnerability elements within families are viewed horizontally flowing from the family to the child and from the child to the family. Resilience is understood as a dynamic process that evolves over time to meet emerging demands. Families construct and adapt these elements in response to the challenges encountered across different phases of the life cycle. In other words, the longer the time since diagnosis, the more assertively families tend to manage the diverse characteristics of their children.
The theoretical framework provides suggestions for interventions. During the diagnostic period, for example, resilience can be fostered by recognizing aspects of vulnerability or by promoting strengthening characteristics according to the key processes of each family. During the health monitoring of a child with ASD, psychosocial support services may be recommended to assist families and help guide the trajectory of family resilience.
The multidisciplinary team can support the resilience process by optimizing communication with the family, thereby helping parents' perceptions of child development and AEPB. Resilience outcomes can be tailored to specific needs as they arise, since it is a dynamic process that unfolds according to demands.
DISCUSSION
Research shows that children with ASD eat differently, regardless of where they fall on the spectrum or how their symptoms are classified. Many of them present with eating disorders that require dietary modifications and distinct eating patterns21.
A study conducted in Los Angeles highlighted that the sensory sensitivities of children, associated with AAC (Augmentative and Alternative Communication), make it difficult to introduce certain foods into their meal routines and to vary the foods offered. Parents of children with ASD often report that their children consume the same foods repeatedly or have sensory preferences that lead them to avoid specific foods22. As a result, these children develop difficulties with feeding skills and, consequently, a limited food repertoire.
As children, they lack the autonomy to make sufficient dietary choices to ensure adequate nutritional status. The family plays a key role in providing proper nutrition to their children23. Certain parental behaviors during mealtimes may influence AEPB, as identified in the results of this study and by other authors24.
First and foremost, it is essential to understand that when discussing feeding issues in ASD, the intention is to highlight the full spectrum of characteristics associated with pediatric feeding disorder (PFD)25symptoms. This is because, when these issues are solely linked to the 'disorder,' there is a tendency to associate them with eating disorders. However, this conceptual overlap exists because addressing such feeding problems reveals an intersection of ASD symptoms3.
This contextualization illustrates the standardization of the family's perception regarding nutritional status, based on diet quality. Parents usually do not recognize this and focus solely on the ASD condition, thereby overlooking the subjective factors related to AEPB. A study conducted in Sweden supports these findings, showing that parents are concerned about unhealthy weight and nutrient deficiencies in their children's diets24.
The fact that parents are deeply immersed in the life of a child with ASD often alters their perception of the impact of atypical eating habits throughout childhood. This, in turn, influences how they perceive the severity of AEPB symptoms. Professionals, on the other hand, are not always familiar with the long-term eating habits of children with ASD and therefore may struggle to help families identify these more subjective aspects. Thus, it is essential that theoretical data addressing these issues be developed and made available so that professionals can offer better support to families.
ASD is a heterogeneous condition, meaning that individuals with the disorder are characterized by a wide range of behavioral symptoms, as well as concurrent health and neurodevelopmental issues21. This explains the difficulty families face in normalizing the condition and the needs associated with their children's AEPB.
When parents or caregivers are informed about AAC-related aspects, they become empowered to provide their children with elements that foster meaningful change23. Therefore, it is understood that families need support to carry out these actions, as they often do not recognize them on their own and are not prepared to manage them. A multidisciplinary professional approach should be established for autistic children with feeding difficulties. Additionally, specialized programs for parents and children are recommended. The findings of this study are supported by research conducted in Malaysia26and in the Chilean region14, highlighting the need to establish guidelines for parents of children with ASD to assist them in developing strategies for healthy eating patterns.
Developmental assessment can serve as a useful method for implementing strategies that help families respond more assertively27. Additionally, professionals who work with these families on a daily basis must be aligned in terms of the approaches and evaluations conducted by the multidisciplinary team. Consequently, family support must also be in harmony with that of the professionals. Mealtime routines at home should be evaluated27.
In line with the general explanation presented in this study, the literature22,27offers important strategies related to AEPB, such as creating a comfortable and accessible environment during meals, preparing foods that reduce anxiety around mealtimes, gradually introducing new foods, preparing ingredients or meals the child prefers while simultaneously developing strategies to encourage interest in trying new foods, being cautious not to satisfy the child’s hunger solely with favorite foods, but instead promoting curiosity about unfamiliar ones, engaging different senses (for example, using touch to explore textures or stimulating taste buds by licking), supporting children based on their individual developmental levels (cognition and social interaction), and encouraging behavioral changes related to food by respecting the child’s willingness to try new foods with the help of preferred people.
It is important to understand that eating practices and behaviors develop throughout the entire course of childhood, beginning in the prenatal period with the nutrition provided by the mother and family28. This becomes especially critical when considered alongside the atypical characteristics of children with ASD, which are identified throughout their growth and development. Therefore, the family's response to this gradual process is vital in establishing their resilience.
Furthermore, when families express their feelings on a daily basis, they begin to communicate more effectively. This provides insight into the processes they experience in their routines, helping them to define expectations, receive external support, and offer support to the child. Atypical Feeding and Communication Behaviors can elucidate how these routines become rituals, and how what is perceived as functional becomes meaningful due to the assertive strategies adopted by families, as identified in this study, across each stage of the family life cycle and the child’s development.
Key processes enable the family system to restructure and recover during difficult times, easing stress, reducing the risk of dysfunction, and supporting optimal adaptation. Moreover, a developmental perspective is essential for understanding and promoting resilience. The impact of adversity varies over time, depending on individual and family transitions throughout the life cycle. For each challenge, it is necessary to understand how families have overcome them10. These findings align with research15conducted in the United States, based on data from the National Survey of Children’s Health, which highlights specific vulnerabilities in families of children with ASD. Interventions for this population may enhance the overall process of family resilience but must be carefully considered.
As limitations of the study, it is important to note the challenges faced during data collection in the context of the Covid-19 pandemic, as well as the sensitivity of the topic for many families already experiencing adversity. The study was conducted with a population segment that had access to social media and lived within diverse social contexts, as reflected in the sociodemographic data presented. To address these limitations, it is recommended that a similar study be conducted in the post-pandemic period to compare data and assess whether significant changes occurred in the research context, thereby validating the general theory.
This recommendation aims to address the limitations of the original study and expand knowledge on the topic, allowing for a broader understanding that supports the elements of the resilience process in different families of children with ASD.
The theoretical framework developed in this study may be modified; however, once validated, it can be used by professionals working in clinical practice with families and in the development of interventions aimed at promoting resilience among relatives of children with ASD.
CONCLUSION
AEPB, as elements of resilience, reveal how feeding challenges experienced by families of children with ASD can be transformed into opportunities for strengthening and adaptation in the face of adversity. This study demonstrates that AEPB is understood not only as a source of difficulty, but also as a catalyst for family reorganization, learning, and growth. By encompassing a relational and adaptive context, AEPB becomes a driving force for the development of family competencies.
Families begin to construct shared meanings, organize themselves to meet their children's needs, and develop creative and affective ways of managing feeding. Thus, resilience emerges as a dynamic and relational process, in which the child’s autonomy and the family’s responsiveness mutually reinforce one another, creating a positive cycle of adaptation. The normalization of AEPB, rather than its pathologization, proves to be a crucial strategy for sustaining family well-being and promoting the child’s holistic development. In this way, feeding practices cease to be sources of stress and become opportunities for connection, learning, and strengthening family bonds.
Through the lived family experience, deep-rooted impressions are formed, imbued with meaning about family dynamics. For a better understanding of the strengthening and vulnerability elements of family resilience, it is important to recognize that these elements may evolve over time and break away from the reproduction of symbolic patterns that shape feeding practices and behaviors misaligned with the child’s condition. By expanding the understanding of elements associated with the subjectivity of feeding within the condition, families are empowered with strategies to address social and behavioral attributes in their daily lives with their child.
In this context, it is evident that both the child and their family should receive care and guidance from multidisciplinary services, as well as benefit from a support network. Therefore, health care, particularly nursing, must go beyond clinical findings and embrace the biopsychosocial dimension of the child with ASD and their family, in order to promote the resilience process and rely on studies like this one to inform practice. The theoretical framework developed in this study highlights resilience elements among parents of children with ASD who face feeding-related adversities. In its current form, it can be used as a guideline for professionals and researchers or as a model to guide future studies. Furthermore, it may assist the scientific research community in designing interventions that foster greater resilience among parents of children with ASD and their families.
REFERENCES
-
1. American Psychiatric Association. Diagnostic and statistical manual of mental disorders: text review (DSM-5-TR) [Internet]. 2022 [cited 2024 Oct 28]; 5ed. Washington, DC; p. 56-68. Available from: https://www.psychiatryonline.org/doi/book/10.1176/appi.books.9780890425787
» https://www.psychiatryonline.org/doi/book/10.1176/appi.books.9780890425787 -
2. Rocha CC, de Souza SMV, Costa AF, Portes JRM. The profile of the child population with suspected diagnosis of autism spectrum disorder attended by a specialized rehabilitation center in a southern brazilian city. Physys [Internet]. 2019 [cited 2024 Oct 28];29(4). Available from: https://doi.org/10.1590/S0103-73312019290412
» https://doi.org/10.1590/S0103-73312019290412 -
3. Baraskewich J, Ranson KMV, McCrimmon A, McMorris C. Feeding and eating problems in children and adolescents with autism: A scoping review. Autism [Internet]. 2021 [cited 2024 Oct 28];25(6):1505-19. Available from: http://doi.org/10.1177/1362361321995631
» http://doi.org/10.1177/1362361321995631 - 4. Amon D. Psicologia Social da Comida. Petrópolis, RJ(BR): Vozes; 2014.
- 5. Poulain JP, Proença RPC, Diez-Garcia RW. Diagnóstico das práticas e comportamento alimentares: aspectos metodológicos. In: Diez-Garcia RW, Cervato-Mancuso AM. Mudanças alimentares e educação nutricional. Rio de Janeiro, RJ(BR): Guanabara Koogan; 2016. p. 149-63.
-
6. Umberson D, Thomeer MB. Family matters: research on family ties and health, 2010 to 2020. J Marriage Fam [Internet]. 2020 [cited 2024 Oct 28];82(1):404-19. Available from: https://doi.org/10.1111/jomf.12640
» https://doi.org/10.1111/jomf.12640 -
7. Ong CSY, Magiati I, Maybery MT, Rodgers J, Uljarevic M, Alvares GA. Parental perspectives of the everyday experiences of uncertainty among young children on the autism spectrum. Res AutismSpectr Disord [internet]. 2023 [cited 2024 Oct 28];101:102087. Available from: https://doi.org/10.1016/j.rasd.2022.102087
» https://doi.org/10.1016/j.rasd.2022.102087 -
8. Soares TM, Bittar S de S, Maynard D da C. Análise do comportamento alimentar de crianças com transtorno do espectro autista. POBS [Internet]. 2022 [cited 2024 Oct 28];12(42):1-17. Available from: https://doi.org/10.25242/8868124220222494
» https://doi.org/10.25242/8868124220222494 -
9. Carmo MA, Zanetti ACG, Santos PL. O ambiente familiar e o desenvolvimento da criança com autismo. Rev Enferm UFPE on line [internet]. 2019 [cited 2024 Oct 28];13(1):206-15. Available from: https://doi.org/10.5205/1981-8963-v01i01a237617p206-215-2019
» https://doi.org/10.5205/1981-8963-v01i01a237617p206-215-2019 -
10. Walsh F. Family resilience: a developmental systems framework. Eur J Dev Psychol [internet]. 2016 [cited 2024 Oct 28];13(3):313-24. Available from: https://doi.org/10.1080/17405629.2016.1154035
» https://doi.org/10.1080/17405629.2016.1154035 -
11. Lai MC, Szatmari P. Resilience in autism: Research and practice prospects. Autism [internet]. 2019 [cited 2024 Oct 28];23(3):539-41. Available from: https://doi.org/10.1177/136236131984296
» https://doi.org/10.1177/136236131984296 -
12. Hashimoto NK . Reclaiming Joy: Finding resilience in families with children with autism [Internet]. 2020 [cited 2024 Oct 28]. (College of Education Theses and Dissertations; 185). Available from: https://via.library.depaul.edu/soe_etd/185
» https://via.library.depaul.edu/soe_etd/185 -
13. Ruthes VBTNM, Mazza VA, Giordani RCF, Trigueiro TH, Canaval GE. Práticas e comportamentos alimentares de famílias de crianças com perturbação do espectro autista. Rev Enferm Ref [internet]. 2022 [cited 2024 Oct 28];6(1):21-55. Available from: https://doi.org/10.12707/RV21055
» https://doi.org/10.12707/RV21055 -
14. Ahumada D, Guzmán B, Rebolledo S, Opazo K, Marileo L, Parra-Soto S, et al Eating patterns in children with autism spectrum disorder. Healthcare. 2022 [cited 2025 May 18];10(10):1829. Available from: https://doi.org/10.3390/healthcare10101829
» https://doi.org/10.3390/healthcare10101829 -
15. Al-Jadiri AMD, Tybor DJ, Mulé C, Sakai C. Factors associated with resilience in families of children with autism spectrum disorder. J Dev Behav Pediatr. 2021 [cited 2025 May 18];42(1):16-22. Available from: https://doi.org/10.1097/DBP.0000000000000867
» https://doi.org/10.1097/DBP.0000000000000867 - 16. Yin RK. Estudo de caso: planejamento e métodos. Porto Alegre, RS(BR): Bookman, 2015.
-
17. World Health Organization (WHO). Advancing early childhood development: from science to scale [internet]. 2016. [cited 2024 Oct 28]. Available from: https://www.thelancet.com/pb-assets/Lancet/stories/series/ecd/Lancet_ECD_Executive_Summary-1507044811487.pdf
» https://www.thelancet.com/pb-assets/Lancet/stories/series/ecd/Lancet_ECD_Executive_Summary-1507044811487.pdf -
18. Vinuto J. A amostragem em bola de neve na pesquisa qualitativa: um debate em aberto. Temáticas [internet]. 2015 [cited 2024 Oct 28];44:201-8. Available from: https://doi.org/10.20396/tematicas.v22i44.10977
» https://doi.org/10.20396/tematicas.v22i44.10977 - 19. Turato ER. Tratado da metodologia da pesquisa clínico-qualitativa. Petrópolis, RJ(BR): Vozes , 6, 2023.
-
20. Webqda. O webQDA [internet] 2024 [cited 2024 Oct 28]. Available from: https://www.webqda.net/o-webqda/
» https://www.webqda.net/o-webqda/ -
21. Önal S, Sachadyn-Król M, Kostecka M. A review of the nutritional approach and the role of dietary components in children with autism spectrum disorders in light of the latest scientific research. Nutrients [internet]. 2023 [cited 2024 Oct 28];15(23):4852. Available from: https://doi.org/10.3390/nu15234852
» https://doi.org/10.3390/nu15234852 -
22. Floríndez LI, Floríndez DC, Price ME, Floríndez FM, Como DH, Polido JC, et al Exploring eating challenges and food selectivity for latinx children with and without autism spectrum disorder using qualitative visual methodology: Implications for oral health. Int J Environ Res Public Health [internet]. 2021 [cited 2024 Oct 28];18(7):3751. Available from: https://doi.org/10.3390/ijerph18073751
» https://doi.org/10.3390/ijerph18073751 -
23. Ismail NAS, Ramli NS, Hamzaid NH, Hassan NI. Exploring eating and nutritional challenges for children with autism spectrum disorder: Parents’ and special educators’ perceptions. Nutrients [internet]. 2020 [cited 2024 Oct 28];12(9):2530. Available from: https://doi.org/10.3390/nu12092530
» https://doi.org/10.3390/nu12092530 -
24. Zakirova-Engstrand R, Hirvikoski T, Allodi MW, Roll-Pettersson L. Culturally diverse families of young children with ASD in Sweden: Parental explanatory models. PLoS One [internet]. 2020 [cited 2024 Oct 28];15(7):e0236329. Available from: https://doi.org/10.1371/journal.pone.0236329
» https://doi.org/10.1371/journal.pone.0236329 -
25. Goday PS, Huh SY, Silverman A, Lukens CT, Dodrill P, Cohen SS, et al Pediatric feeding disorder: consensus definition and conceptual framework. J Pediatr Gastroenterol Nutr [internet]. 2019 Jan [cited 2024 Oct 28];68(1):124-9. Available from: https://doi.org/10.1097/MPG.0000000000002188
» https://doi.org/10.1097/MPG.0000000000002188 -
26. Eow SY, Gan WY, Lim PY, Awang H, Shariff ZM. Factors associated with autism severity among Malaysian children with Autism Spectrum Disorder. Res Dev Disabil [internet]. 2020 [cited 2024 Oct 28];100:103632. Available from: https://doi.org/10.1016/j.ridd.2020.103632
» https://doi.org/10.1016/j.ridd.2020.103632 -
27. Yamane K, Fujii Y, Hijikata N. Support and development of autistic children with selective eating habits. Brain Dev [internet]. 2019 [cited 2024 Oct 28];42(2):121-8. Available from: https://doi.org/10.1016/j.braindev.2019.09.005
» https://doi.org/10.1016/j.braindev.2019.09.005 -
28. Kazek B, Brzóska A, Paprocka J, Iwanicki T, Kozioł K, Kapinos-Gorczyca A, et al Eating behaviors of children with autismo - Pilot study, part II. Nutrients [internet]. 2021 [cited 2024 Oct 28];13(11):3850. Available from: https://doi.org/10.3390/nu13113850
» https://doi.org/10.3390/nu13113850
NOTES
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ORIGIN OF THE ARTICLE
Excerpt from the thesis - Family Resilience in the Context of Autism: Feeding Behaviors and Practices, submitted to the Graduate Program in Nursing at the Federal University of Paraná, in 2024.
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FUNDING INFORMATION
Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES. Social Demand Doctoral Scholarship and Doctoral Sandwich Program - PRINT/CAPES/UFPR; Universal Project - Public Call CNPq/MCTI/FNDCT No. 18/2021. CNPq Research Productivity Fellowship
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APPROVAL OF ETHICS COMMITTEE IN RESEARCH
Approved by the Ethics Committee in Research of the the Universidade Federal do Paraná, opinion no. 4.693.312, Certificate of Presentation for Ethical Consideration (CAAE) no. 42177821.1.0000.0102.
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TRANSLATED BY
Ricardo Giamattey
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DATA AVAILABILITY
The entire dataset supporting the findings of this study is available upon request to the corresponding author [Victoria Beatriz Trevisan Nóbrega Martins Ruthes]. The dataset is not publicly accessible because it contains sensitive information that could compromise the privacy and anonymity of participants.
Edited by
The entire dataset supporting the findings of this study is available upon request to the corresponding author [Victoria Beatriz Trevisan Nóbrega Martins Ruthes]. The dataset is not publicly accessible because it contains sensitive information that could compromise the privacy and anonymity of participants.
