FAMILY ADAPTATION IN THE CARE OF CHILDREN WITH AUTISM SPECTRUM DISORDER: SYNTHESIS OF QUALITATIVE EVIDENCEABSTRACT
Objective: To summarize qualitative scientific evidence regarding family adaptation for children with Autism Spectrum Disorder.
Method: A qualitative systematic review of the meta-aggregation type, following the Joanna Briggs Institute guidelines. Five databases were consulted, and the Rayyan - Intelligent Systematic Review software was used to organize and select the studies. JBI-QARI guided the articles critical appraisal. The sample consisted of 10 studies. Data extraction and meta-aggregation were supported by the MAXQDA software.
Results: Meta-aggregation revealed (1) Experiences favorable to family adaptation and (2) Experiences unfavorable to family adaptation.
Conclusion: Factors that promote family adaptation include planning and reorganizing routines, having a support network, dividing tasks and responsibilities, acquiring knowledge about the disorder, and adopting coping strategies for problem-solving. Experiences of maternal overload, feelings of neglect from neurotypical siblings, lack of a support network, and social isolation hindered adaptation and compromised self-care among family members.
DESCRIPTORS:
Systematic Review Qualitative research; Psychological adaptation; Family; Autism spectrum disorder; Childcare
RESUMO
Objetivo: Sumarizar evidências científicas qualitativas acerca da adaptação familiar de crianças com Transtorno do Espectro Autista.
Método: Revisão sistemática qualitativa do tipo meta-agregação conforme orientações do Joanna Briggs Institute. Foram consultadas cinco bases de dados e adotado o software Rayyan - Intelligent Systematic Review para a organização e seleção dos estudos. O JBI-QARI orientou a avaliação crítica dos artigos. Amostra composta por 10 estudos. A extração e meta-agregação dos dados foi apoiada pelo software MAXQDA.
Resultados: A meta-agregação evidenciou (1) Experiências favoráveis à adaptação familiar e (2) Experiências desfavoráveis à adaptação familiar.
Conclusão: Favorecem a adaptação familiar a presença de planejamento e reorganização da rotina, a presença de rede de apoio, divisão de tarefas e de responsabilidades, a aquisição de conhecimento sobre o transtorno e adoção de estratégias de coping para resolução de problemas. Experiências de sobrecarga materna, sentimento de negligência por parte de irmãos neurotípicos, ausência de uma rede de apoio e o isolamento social desfavoreceram a adaptação e comprometeram o autocuidado dos integrantes das famílias.
DESCRITORES:
Revisão sistemática; Pesquisa qualitativa; Adaptação psicológica; Família; Transtorno do espectro autista; Cuidados da criança
RESUMEN
Objetivo: Resumir la evidencia científica cualitativa sobre la adaptación familiar para niños con trastorno del espectro autista.
Método: Una revisión sistemática cualitativa del tipo meta-agregación, siguiendo las directrices del Instituto Joanna Briggs. Se consultaron cinco bases de datos y se utilizó el software Rayyan - Intelligent Systematic Review para organizar y seleccionar los estudios. JBI-QARI guió la valoración crítica de los artículos. La muestra constó de 10 estudios. La extracción y la meta-agregación de datos se realizaron con el apoyo del software MAXQDA.
Resultados: La metaagregación reveló (1) Experiencias favorables a la adaptación familiar y (2) Experiencias desfavorables a la adaptación familiar.
Conclusión: Los factores que promueven la adaptación familiar incluyen la planificación y reorganización de rutinas, la presencia de una red de apoyo, división de tareas y responsabilidades, adquisición de conocimientos sobre el trastorno y adopción de estrategias de afrontamiento para la resolución de problemas. Las experiencias de sobrecarga materna, los sentimientos de abandono por parte de hermanos neurotípicos, la falta de una red de apoyo y el aislamiento social dificultaron la adaptación y comprometieron el autocuidado entre los miembros de la familia.
DESCRIPTORES:
Revisión sistemática; Investigación cualitativa; Adaptación psicológica; Familia; Trastorno del espectro autista; Cuidado del niño
INTRODUCTION
Autism Spectrum Disorder (ASD) is classified, according to the eleventh International Classification of Diseases (ICD-11), as a neurodevelopmental disorder characterized by persistent difficulties in the ability to initiate and maintain communication and reciprocal social interactions. The deficits of this condition manifest themselves through restricted, repetitive, and inflexible patterns of behavior and interests1. Its etiology is not fully understood, and research suggests a combination of genetic and environmental factors2-3. The Centers for Disease Control and Prevention (CDC) state that approximately 1 in 36 eight-year-old children may be diagnosed with the disorder, with the prevalence being four times higher in males4.
ASD triggers repercussions for the family that are initially difficult to cope with, as they involve changes in family dynamics and relationships, in the interaction of this group with society, and can generate overload on caregivers and family crises5-7. The exposure of these families to additional stressful situations, such as financial problems, anxiety and hopelessness related to the child's future, lack of support, social exclusion, and demands related to health conditions, constitute complex challenges that may be present in the family system8.
In the family context, it should be considered that ASD brings about a significant transformation in the dynamics of this group, requiring adjustments to meet the demands presented9-10. In this sense, family members who experience these stressful situations can seek to resolve them by adopting actions, communication strategies, and resources that make the process manageable, thus contributing to an adaptive experience11.
It is understood that the family experience of caring for a child with ASD is intertwined with meanings and significance, making it opportune to understand how the adaptive process occurs and what the repercussions are on the dynamics of these families. Given the demands and challenges presented in situations involving children with this diagnosis, studies have focused on researching how families manage and cope with these situations, and indicate that high levels of stress, an overload of responsibilities, and the disruption of common social activities are everyday difficulties that have to be studied12-16.
Considering the challenges and complexities these families face, healthcare professionals and researchers have been seeking evidence and knowledge to support practices that promote family adaptation to situations involving the care of a child on the autism spectrum17-19.
We have identified that evidence from qualitative syntheses can contribute to individual- and family-centered care, responding to their needs and respecting their decisions in the face of the different transitions that the person or the family itself experiences throughout life20. In this sense, it can be inferred that family experiences in situations involving children with ASD are rich in singularities, intersubjectivities, and are contextually determined, that is, experiences that are explored in qualitative studies.
The relevance of this work lies in the need to produce evidence, based on qualitative syntheses presenting experiences of family adaptation to situations involving the care of a child with ASD. The synthesis of this study can support professional health practices that promote family adaptation and points to situations in which they will need to intervene to make the care of this child group a constructive family experience; furthermore, this summary fills knowledge gaps that need to be explored5,9,13.
We clarify that, in a preliminary search, in Cochrane Database of Systematic Reviews, Joanna Briggs Institute (JBI) Evidence Synthesis, Open Science Framework (OSF), and Online System for Search and Analysis of Medical Literature (MEDLINE) we did not find a qualitative systematic review similar to the one reported in this article.
Considering the above, this study aimed to summarize qualitative scientific evidence regarding family adaptation of children with ASD.
METHOD
A systematic review of qualitative evidence that followed the steps recommended by the Joanna Briggs Institute (JBI)21 and adopted an adapted form of the flowchart Preferred Reporting Items for Systematic Review and Meta-Analyses Extension (PRISM)22 to represent the search stages, selecting, and including articles until reaching the final sample.
To this end, the review was carried out as follows: development of the research question; definition of inclusion and exclusion criteria; search for studies; selection of studies; critical appraisal and application of the JBI QARI; data extraction; meta-aggregation of data; presentation of results and interpretation. The protocol for this systematic review has been registered in the Open Science Framework repository23.
The question for the review was formulated using the mnemonic PICO24 (Population, Phenomenon of interest, and Context) in which the population corresponds to the family of a child with Autism Spectrum Disorder (ASD); the phenomenon of interest is adaptation, and the context is the community. From this perspective, the question arose: What qualitative scientific evidence has been produced regarding the adaptation of families of children with ASD in the community?
There are different understandings of the term and family composition. In this study, we identify the family as a grouped system of affective, social, and economic bonds, which are part of a specific trajectory. This trajectory needs to be adaptable to changes at various points in life, seeking ways to give new meaning to momentary or long-term situations25.
The research was conducted in the following databases: Medical Literature Analysis and Retrieval System Online (MEDLINE), EBSCO, EMBASE, SCOPUS, and Web of Science. The initial step consisted of searching for controlled descriptors compatible with the databases, using the Health Sciences Descriptors (DeCS) and Medical Subject Headings (MeSH), connected by the Boolean operators AND OR. Subsequently, uncontrolled descriptors were used to broaden the search, with terms characteristic of the review topic. Finally, a list was compiled with the preferred descriptors for each database.
The data search strategy in MEDLINE via PUBMED, EBSCO - including ACADEMIC SEARCH and PREMIER, EMBASE, and Web of Science - consisted of using the terms “Autism Spectrum Disorder” AND “Child” AND “Family” AND “Adaptation Psychological”. For the Scopus database, the same strategy described above was followed, with the addition of the Boolean operator OR and the descriptor “Emotional Adjustment”.
The article search and selection period took place between April 10 and June 15, 2023.
Among the inclusion criteria for the review, qualitative studies in English, Portuguese, and Spanish were selected that included as participants families who had children on the autism spectrum under their care, up to 18 years of age, the age range established by the United Nations Convention on the Rights of the Child25-26, regardless of family structure, and that they answered the question of this review.
Exclusion criteria included articles unavailable in full, copies of duplicate materials, and studies that, during critical analysis using the Checklist for Qualitative Research (QARI), proposed by JBI (JBI-QARI), received a negative (no) response to one of the questions in this instrument. Two researchers independently conducted the critical analysis using the JBI-QARI. Discrepancies in the analysis were evaluated by a third researcher, and consensus was reached in a meeting.
In the first phase, the selection of studies retrieved from the databases was carried out independently by two researchers, with the support of the software Rayyan- Intelligent Systematic Review, in which the titles and abstracts of the materials were examined, excluding those that did not meet the inclusion criteria and those that were duplicates. This was followed by a second selection stage, which consisted of two reviewers reading the texts in their entirety, again independently, and excluding studies that did not meet the established criteria. For these two stages, a third reviewer carried out the selection analysis process, and any disagreements were resolved jointly in a meeting.
For critical evaluation of the selected articles, the JBI-QARI was adopted, with the aim of assessing the quality of the materials. The critical checklist, consisting of 10 questions, was applied to the articles and consisted of evaluating characteristics related to research methodology and data (congruence with philosophical perspective, study objectives, data collection methods, data analysis, and interpretation of results), context (researcher location, influence on the research, adequate representation of participants), ethical aspects, and conclusions (compliance with ethical legislation and conclusions aligned with data analysis and interpretation)27. The JBI QARI does not define a scoring system to determine whether an article is of low quality or not, but the authors of this review have determined by consensus that a negative response (no), that is, failure to meet one of the items listed in this checklist, would be sufficient to exclude the article from the final sample.
The data extraction process was carried out after in-depth readings of the material and relied on the support of the MAXQDA software, version 2022, to organize the following information: population/participants; context; study methods; main findings for the purpose of the review, and answer to the research question. Following this organization, the meta-aggregation process was carried out, which facilitated the synthesis of the results and their presentation according to two categories. Subsequently, the findings were interpreted using the premise of establishing the reliability of the synthesis.
RESULTS
The results of the search and selection were reported in full and presented in a flowchart adapted from the PRISMA model (Figure 1). According to database searches, 1,083 studies were initially found, with 496 in PubMed/MEDLINE; 225 in EBSCO; 76 in EMBASE; 38 in Web of Science; and 248 in Scopus. Eventually, articles that did not fit within the languages proposed by the review, that did not have full free access, and those that did not fit the type of study proposed for the review were excluded. After these steps were completed, 43 publications were excluded due to duplication. The final sample for this review consisted of 10 studies, as shown in the flowchart in Figure 1.
Study selection process flowchart (adapted from Preferred Reporting Items for Systematic Review and Meta-Analyses Extension - PRISMA22).
The articles included are presented in Chart 1. Among the studies analyzed, the publication occurred between 2012 and 2023, and the predominant language of the manuscript was English (n=10). Regarding the region where the studies were conducted, we identified that 5 occur in the Asian continent, 1 in the European continent, 1 in Oceania, 2 in North America, and 1 in South America.
The synthesis of the results found, which answered the question of this investigation, is presented in Chart 2. Data analysis allowed us to identify aspects that are both favorable and unfavorable to family adaptation.
With regard to the former, the adaptive strategies consisted of: Family planning and restructuring; Division of tasks and existence of a support network; Strategies for coping and knowledge about ASD. It became evident that experiences with negative outcomes for adaptation are marked by the presence of family overload, job abandonment, increased working hours, lack of a support network, intra-family conflicts, and social isolation.
DISCUSSION
Family planning and reorganization were present in situations where there was a change and a need to incorporate new routines, which fostered alterations to implement greater predictability in daily life28-30,36. These adaptive measures emerged in response to the demands for the child and family members to meet deadlines, such as submitting schoolwork, providing services, and being punctual for certain appointments, which was essential for family functionality36 .
There were also situations where the family budget had to be reorganized, requiring a reduction in expenses to prioritize the cost of basic survival items and providing therapies for the child with ASD. This adaptation contributed to family well-being by providing the child with a sense of better living conditions and the possibility of balancing professional and personal life, with more limited financial resources but a fairer distribution of tasks29-30.
The changing and reorganization of parents' relationship with paid work was evident in the studies. We identified a reduction in working hours or a change of job to one that offered greater flexibility in balancing work with childcare routines28-30. Furthermore, the move to safer geographical locations was seen as a facilitator for family adaptation28.
The presence of a support network and the division of tasks were considered essential mechanisms for family adaptation28-30,32-33,35. The division of responsibilities and childcare with the spouse has been highlighted in various studies, demonstrating that joint decision-making, communication about the challenges of parenthood, and strengthening of the marital relationship can contribute to family adjustment28,30,35.
Families with couples composed of parents who supported each other equally showed lower indicators of burnout and distress compared to those in which one spouse had a greater burden of childcare, as evidenced by emotional well-being, better household management, personal development, and improved parenting skills30.
Family support also helped parents of children with ASD to better manage their children's care routine, reducing the negative consequences of stressful situations29. From this perspective, grandparents frequently emerged as a support network for adaptation, often being considered the first line of support, as they helped in the division of tasks and childcare, reducing the family burden28-29,33.
Assistance from family friends proved to be a timely adaptive strategy, considering that help from close people reduced family stress, especially regarding the marital relationship, by allowing time for the couple and social interaction27.
The network that favors family adaptation33 consists of educators and school staff, who are responsible for providing temporary care, allowing parents to have a break29-30,32; healthcare professionals, capable of providing information, treatment, and assistance to the child30,32-33; the church, capable of contributing with support and spiritual comfort to the family.
Coping strategies are presented as actions and thoughts that contributed to reframing and re-signification, conscious adjustment, active avoidance, spirituality and religious sustenance, positive readjustment, time for self-care; socialization and leisure27-36.
Reframing and re-signification were seen in situations where family members decided to deal with new challenges in a more positive way. Re-signification can commonly be seen after a child is diagnosed with ASD, through acceptance, acting as a precursor to resilience which, combined with adjustment of expectations for the child's future, contributes to family functionality and hope31,34.
Active avoidance, often present in the initial stages of ASD diagnosis, is identified as a coping strategy to minimize, avoid family suffering34. In this sense, families often minimize their own emotions, normalizing the experience of caring for a child with ASD and denying or omitting the child's condition, a fact that was observed more frequently in these children’s fathers compared to mothers27,30-31,34.
Conscious adjustment and positive readjustment are coping strategies in which families have stopped focusing on the idea of illness or the understanding that there is something wrong with the child, and have begun to understand and accept the condition that the child presents. This allowed for the establishment of long-term goals, the development of appropriate responses to challenging behaviors, and the creation of more realistic treatment plans for the children31-32.
Spirituality and religious sustenance are coping strategies identified and shown to be suitable for family adaptation27,33,36. Religious activities were able to contribute to a sense of peace on the part of the parents and became a source of strength to cope with the challenges of raising a child27. There are indications that family routines, adjusted to the child's needs, were able to reflect the beliefs, values, and needs of its members, contributing to the fostering and enhancement of their own spirituality36.
The need for caregivers to have time for themselves is a factor that promotes family adjustment28. Among the strategies used for self-care, the following were identified: maintaining outings to work, seeking religious support, and socialization27. Family members consider having time for themselves essential for their health and well-being, as it consists of the time they have to be free from their responsibilities with the child35-36.
Socialization and leisure activities were identified as opportune strategies for the well-being of families and children with ASD28. Although reduced socialization was common, the adoption of strategies to integrate parents and children into social life reduced feelings of exclusion and isolation, contributing to family adaptation29-30,35.
After a diagnosis or signs of the disorder, it is common for the family to seek information to learn about and understand autism28,30,34. The following sources of information were identified: healthcare professionals, books in libraries, the internet, and family members of other children on the autism spectrum28,30,34. It became evident that knowledge about the disorder and its lifelong repercussions allowed families to make more assertive and realistic choices regarding the child's care30,34.
Conversely, there are unfavorable situations that have hindered family adaptation. They consist of maternal overload27-31, neglect and overburdening of siblings of children with ASD27,35, having difficulty accessing support networks and living in social isolation27-30. We also found that family members abandoning their professional lives28-32, the increase in paternal working hours to supplement family income28,30,31, and marital conflicts are predictors of family maladjustment28,30.
Maternal overload in caring for a child with ASD occurs when the mother becomes the primary caregiver, accumulating responsibilities for the child, the family, and household maintenance28. This can occur considering active paternal avoidance, which is a coping strategy frequently used by some fathers who seek to increase their work outside the home and occupy their free time with leisure activities, measures used to avoid the daily situation experienced in their homes, potentially intensifying the maternal burden29.
Furthermore, studies reveal that mothers commonly leave their jobs, reduce social interaction, interrupt friendships, and become socially isolated to deal with childcare responsibilities when they are the primary caregiver30,27-28,31.
Neglect and overburdening of neurotypical siblings of children with ASD, especially older siblings who share caregiving responsibilities with their parents, prove to be a significant family stressor27. In some situations, these children may be neglected, since their families devote more time and attention to the child on the autism spectrum, affecting family interaction35. Although families use strategies to create intimate interactions with neurotypical children, such as setting aside time to devote individual attention to them, feelings of injustice on the part of these children have been reported in some studies27,35. It is recognized that moments of family conflict can arise in response to this perception, which usually includes the sibling distancing from the child with ASD as a way of expressing their distress with the situation35.
The difficulty in accessing a support network also creates an unfavorable experience for adaptation. Families who lack support in childcare are often unable to participate in social activities28. Families lacking a support network, friends, or the means to pay for caregivers experience social exclusion and invisibility, distancing themselves from activities that were once routine for the family27-29.
Regarding family members leaving their professional lives, this is more frequent among mothers28. In the studies analyzed, some mothers needed to adapt their work schedule, either by reducing their working hours or changing shifts. Others had to quit their jobs and dedicate themselves entirely to caring for the child with ASD28-29. There are situations in which fathers have had to assume the financial expenses of the household alone, which has implied an increase in working hours, job transfers, and a reduction in time for family life, and this has altered the dynamics and interaction of its members28-32.
Finally, marital conflicts represent challenges to family adjustment28,30. The need for continuous care for children with ASD has been considered a precursor to conflicts between spouses, responsible for increasing difficulties between parents and other children, leading to tense relationships, usually associated with the absence or insufficiency of support28. In two studies analyzed, the excessive time and effort spent by the mother caring for a child on the autism spectrum, and the lack of support in the division of tasks by the father, were considered precursors to marital conflicts and a contributing factor to divorce29-30. Neglect with the spouse and neurotypical children was also seen as a challenge to family adjustment28.
In this regard, stressful effects tend to harm social activities, exposing families to extensive care and long periods of dedication to the child31.
Difficulties in regaining coping strategies for the disorder can generate feelings of loss regarding dreams and expectations built up for their children throughout their lives, interfering with family adaptation and causing emotional impact and changing family dynamics27.
The diversity of studies, in terms of objective, methodology, and participants, hinders the comparison of findings among the studies that make up the bibliographic sample. The geographical dispersion and the cultural context in which the research was conducted affect the transferability of the findings to other contexts. There are also limitations, such as the restrictions placed on language and free access to a full text, with some articles probably being excluded a priori, despite meeting the inclusion criteria.
Despite these limitations, the results synthesized qualitative evidence on experiences favorable to family adaptation, which can support professional practices that promote adaptation, as well as highlighting unfavorable situations that deserve intervention.
CONCLUSION
The results of this qualitative synthesis indicate that there are aspects both favoring and hindering family functionality with a view to adaptation in the context of caring for a child with ASD.
We have identified that maternal overload, due to inequalities in the division of parental responsibilities, marks the experiences of families with greater challenges to adaptation. The feelings of being overwhelmed and neglected by neurotypical siblings, and their implications for family adjustment, require further scientific exploration. The absence of a support network seems to intensify family burden, social isolation, and the inability to participate in leisure activities, compromising self-care.
Experiences that indicated adaptive family processes are marked by the presence of planning and reorganization to meet the child's needs, the presence of a support network, the division of tasks and responsibilities for the child, knowledge about ASD, and the adoption of coping strategies for problem solving. Families that adopted coping strategies presented more constructive experiences that were favorable to adaptation.
Based on the qualitative evidence analyzed, it is recommended that nurses, in their clinical practice, actively work to strengthen the coping strategies identified by families, such as seeking support networks, reorganizing routines, and accessing information about ASD. Upon identifying signs of emotional overload, social isolation, or family conflict, the nurse should intervene with the family system, providing guidance on available resources such as support groups, specialized services, and self-care practices, thus promoting family-centered care to make the experience of living with a child with ASD more welcoming, constructive, and sustainable.
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NOTES
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ORIGIN OF THE ARTICLE
Extracted from the thesis - Functionality of families of children on the autism spectrum in the pre- and trans-pandemic period of Covid-19, presented to the Graduate Program in Nursing, at the Universidade Federal de São João del Rei, Minas Gerais, in 2024.
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FUNDING INFORMATION
To the Minas Gerais Research Support Foundation (FAPEMIG) for funding through process “APQ-03978-22”. Support from the Coordination for the Improvement of Higher Education Personnel (CAPES) in funding modality “001”
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TRANSLATED BY
Denise Costa Rodrigues
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DATA AVAILABILITY
The dataset supporting the results of this study is available upon request from the corresponding author.
Edited by
The dataset supporting the results of this study is available upon request from the corresponding author.
