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Brazilian law establishes that the family is the main organism of society and that, in partnership with the State, it must guarantee the fundamental rights of every child and adolescent, including the right to family life. It is understood that every child and adolescent, without discrimination, for example, by birth, age, sex, economic condition and disability, has the right to grow up in its family of origin or extended family, and, exceptionally, in a substitute family, always emphasizing the importance of the family for their development (Brazil, 1988, 1990).
The family environment is essential for human development, that takes place in the relationships between the growing individual and the environment in which they are inserted (Bronfenbrenner, 1996). These relationships occur throughout the life cycle and tend to become increasingly complex over time. This complexity is due to the action of multiple factors, among them the environments in which the subject is inserted stands out, especially the family.
The family environment is the first and the main environment in which the child establishes its activities, relationships and roles, being considered the most important microsystem (Bronfenbrenner, 1996). It is in the family that the main proximal processes of the child occur that, according to Bronfenbrenner (2011), are the engines of development, since they activate the changes that take place over time. Thus, the family occupies a privileged place for analysis, allowing us to understand the human development process, hence the importance of identifying the risk and protection factors that influence its functioning (Bastos & Trad, 1998). Risk factors are those situations that make it likely that there will be negative outcomes in the course of development (Reppold et al., 2002), such as neglect, poverty, physical, psychological and sexual violence, among others. On the other hand, protective factors are those that alter the individual’s response to some environmental risk, causing no negative results (Rutter, 1985).
In cases where the family environment is exposed to risk factors, legal provisions must be taken, as the protective measure of institutional care (Brazil, 1988, 1990). In large part, these factors are related to the absence or ineffectiveness of public policies for family care, and the lack of support and guidance suffered by this group (Rizzini et al., 2006). Thus, children and adolescents whose family ties are weakened or broken must find in institutions not only a protection space conducive to good human development, but also the promotion and viability of the right to family (Corrêa, 2016).
Institutional care is a temporary and exceptional measure applied to children and adolescents who are at personal and/or social risk in the family environment. This is a measure that must take place only after all other possibilities that have been exhausted in the family environment of origin (Brazil, 1990). Additionally, the current legislation advises that the child or adolescent has their situation reassessed every three months, and that the maximum stay in the institution is 18 months (Brazil, 2017).
In this sense, the reality of institutional care has caused, in recent years, intense concerns and reflections in professionals and scholars of human development, who have sought to understand the influences of this environment in the life trajectory of their foster children (Fernandes & Monteiro, 2016; Zappe & Dell’Aglio, 2016). For this, it is necessary to consider the role of the care institutions, since the empirical evidence indicates that the longer the period in an institutional care environment, the greater the risks to their development (Cavalcante et al., 2007; Goffman, 1974).
Thus, it is understood that for family reintegration or adoption to be successful, it is necessary for the institutional care technical team to follow up on families and for this to be effective (Rocha et al., 2015). This is a challenge that seems to be even more complex when dealing with children and adolescents with disabilities (Souza, 2020; Silva, 2019; Vale Pinheiro, 2020).
The fact is that children and adolescents with disabilities remain for more than half of their lives in these institutions, whether specific for people with disabilities or not. In various situations the social value historically imposed on people with disabilities is one of the main reasons for institutional confinement and devastating silence for this public (Rizzini, 2008). Thus, in addition to the disability, the welcoming situation can be double excluded, both because of the welcoming situation that is still quite stigmatized in Brazil, and due to the person’s disability condition (Souza, 2020).
As noted in recent studies (França, 2015; Cunha et al., 2018; Bezerra et al., 2019; Silva et al., 2019; Souza et al., 2018). Brazilian families of children with disabilities are, to a large extent, exposed to a great precariousness in access to the services necessary for both the child and the family. It appears, then, that social vulnerability, surrounded by a series of factors such as unemployment, violence and others, is the reality found by many teams from host institutions. Thus, disability ends up being a factor that goes beyond the family’s capacities and resources to take care of the child in a society little prepared to deal with their demands (Lima, 2016).
First, it is important to highlight that family reintegration consists of the process of returning the child to the family of origin, whether it be the nuclear family (father and mother), single-parent family or extended family. This process tends to happen when the family is available and able to provide care (Siqueira, 2012). Adoption, in turn, consists of inserting the child into a foster family, which is the last measure to be taken, which occurs when the process of family reintegration is not feasible, and the child is deprived of family power (Brazil, 1990). Despite being different processes, both presuppose the feasibility of the right to family life for children and adolescents.
In this sense, it can be observed that few children and adolescents with disabilities in institutional care are reinserted in the family environment. There are many reasons for this fact, such as: lack of basic material resources, violence, abuse, among other risk situations, as well as the diagnosis of disability. In addition, in many cases, family ties are weakened or broken after the application of the institutional care measure, further elevating the segregation of these subjects to family and community life (Rizzini, 2008).
The results of an investigation carried out by Ribeiro et al. (2016) demonstrated that several families choose to leave their children with disabilities in foster care institutions because they believe that these institutions are the best way to promote their children’s well-being. Some of the main reasons are the difficulty in accessing services and the fragility of a policy system that does not serve them effectively.
The study by Campos and Araújo (2018) investigated the educational situation of 35 children and adolescents with disabilities admitted to 11 care institutions in Belo Horizonte. The results showed that several children and adolescents had a high degree of functional impairment, which implied family abandonment and decreased chances of adoption.
Thus, it is understood that the biggest challenge in this area is to protect children and adolescents whose rights are threatened, and yet guarantee them the right to family and community coexistence (Rizzini & Rizzini, 2004). In addition, according to Child and Adolescent Statut (Brazil, 1990), children and adolescents with disabilities have priority in the processes of family reintegration and adoption, therefore, the monitoring of families must occur even more efficiently. Keeping the child or adolescent as short as possible at institutional care is a synonym for good articulation of public policies in favor of the family on the part of the institution, however, when it comes to children and adolescents with disabilities the situation can be much more complex (Souza, 2020).
Thinking about the realization of the right to family life for children and adolescents advocated by the legislation, as well as taking into account the impacts that the long stay in foster care institutions can cause, as well as observing the scarcity of studies that address the institutional care of children with disabilities, the present study aimed to describe the perception of caregivers and the role of professionals in the process of family reintegration and adoption of children and adolescents with disabilities in an care institution. The work of accompanying families in the institution was carried out through the execution of the Pontes Project. This project was developed in a host institution in the state of Pará and aims to enable experiences that contribute to the process of family reintegration and adoption of children and adolescents with disabilities.
Method
The Ponte Project was implemented in 2016, and its purpose is to promote the experience of family life for foster children and adolescents in the institution. Therefore, it has four specific objectives: a) relate theoretical reflections of the team with care practices and family life directed to families; b) provide the strengthening of bonds between children/adolescents and their families based on previously scheduled visits and with monitoring and guidance from the technical team; c) promote the insertion of the family in the network of social assistance services; and d) to instruct and train the family regarding health care, specific knowledge of the disability and actions necessary to enhance the development of the person with a disability, thus enabling their return in the safest possible way to the family of origin.
The project is carried out twice a week, and in the analyzed period (six months) five families participated in the project. By families, in this study, it is understood the members of the family group, whether they are family of origin, extended or intending to adopt. Initially, the families of the five children go together to the Social Service room, where they meet the project’s technical team, made up of a Social Worker, a Psychologist and an Occupational Therapist. From there, a series of dialogues begins between families and professionals, in order to understand the processes experienced by families, providing guidance, support, etc.
More specific issues for each child are also addressed, for example: what they did during the week, evolution in motor skills, behavior and other, and about the adoption processes in progress. During the entire meeting, there are multiple dialogues between families, and the importance of family life is always reinforced by the team. In the second moment, the family must go to the dependencies of the care space where children and teenagers are waiting for them, and then the interaction of families with children occurs, with a view to maintaining affective bonds. To use the data, the proposal was submitted and approved by the Ethics and Research Committee of the Federal University of Pará, with favorable opinion No. 3.001.607.
The field diary technique was used to record the meetings held in the Project. The field diary is a technique that allows the description of facts and events immediately after they have occurred, allowing for a more accurate reflection (Lima et al., 2017). The field diary was always prepared after the end of each meeting, allowing a more accurate description of the events, being elaborated in digital form, in Microsoft Word 2016.
Data análisis
Ten sessions of project execution, carried out between September 2017 and February 2018, were analyzed. The data recorded in the field diary were analyzed using content analysis (Bardin, 2011) and then using the Iramuteq software (Interface de R pour les Analysis Multidimensionnelles de Textes et de Questionnaires). Iramuteq has different types of analysis and in this study, we chose to use the dendrogram, which generated six textual classes, which were later named after data analysis, as will be observed in the results section.
Results
Table 1 shows the age of the child/adolescent, the disability and the family members who participated in the meetings. Fictitious names were also established for both children and family members.
In addition to the children’s relatives, the professionals were also part of the study, since they performed a series of activities with the families, which aims at family reintegration. Thus, Table 2 presents the participating professionals, and their respective fictitious names.
The use made by the text set software was good, since of the 186 textual segments, 153 (82.86 %) were used, being classified and combined in 6 groups. The analyzed corpus generated a dendrogram containing six classes, and it was possible to observe homogeneity in the percentage of words in the corpus in each of them, as shown in the Figure 1.
Class 1. Strengthening of bonds between families and children/adolescents
This first class corresponds to 15.7 % of the textual body analyzed, with the most prominent words being: lose, child, new and wish, other words can also be mentioned, as is the case of responsibility, relationship, caring and contributing. The terms of this class are related to the novelty of reestablishing or establishing ties with the foster children and adolescents, to the desire that the whole process can occur and end in a positive way, with the return or insertion of the individual in the family environment. Also refers to the reflection about the responsibility assumed by the families in relation to the children/adolescents, always emphasized by the team that accompanies them, having as main objective their well-being, and the strengthening of bonds aiming at family reintegration or adoption.
I work in Benevides, but I live in Terra Firme, and my husband is a carpenter. I work from 8 in the morning until 6 in the afternoon, I’ll ask my boss to see if she releases me a few times to come here, but I can’t confirm it (Sandra - Emily’s grandmother)
I really want to take Emily home, and my husband agrees, but we earn little, and the house is not very good, it is made of wood. We want to start coming to visit her, so she can feel us present (Sandra - Emily’s grandmother).
After these statements, the Social Worker stressed the importance of the grandmother’s interest in establishing bonds with her granddaughter, and that this is a fundamental factor, and that from that moment on, the team will be able to work on ways to improve the housing situation of the family, through referrals and enabling the implementation of public policies that meet this need. In addition, she encouraged the grandmother to report the entire situation to her employer so that she could check the possibility of getting time off, and that if this is not possible, weekend visits can be scheduled, in view of the child’s well-being and the importance of establishing links with the family, aiming at a future family reintegration.
I want to take Marcos home. This is my biggest expectation and goal for this year, that’s why I’m here (Maria - Applicant to adopt Marcos).
It’s very good to come every week to visit Emily because she gets used to us, seeing that we care about her, and I can’t wait to take her home (Sandra - Emily’s grandmother).
It was possible to observe that the more families attended the institution, the more expectations were created in relation to taking the child/adolescent to their homes. It was identified that as the bonds with the child/adolescent were strengthening, more families expressed their desire to have the child/adolescent in the family environment.
Class 2. Importance of family life for the development of the child/adolescent
Class 2 refers to 18.9 % of the text corpus and presents itself as the class with the highest percentage, whose highlighted words are to emphasize, family, importance, coexistence, social worker and find. Other words such as visit, development and reception are also highlighted. In this class, the importance of family life for the development of children and adolescents is emphasized. During the meetings of the families with the team, family life is a highly debated aspect, considering that both legislation and researchers in the area point out that the bond with the family is fundamental for the development of anyone, especially children and adolescents. As good as it is, the host institution is not the most suitable environment for a child and/or teenager to develop.
I really want to take Emily home, but I know that my home still needs to be better organized for that. I know that here is a good shelter and that she is being well taken care of, but the people who take care are not her family, she sees one in the morning, and in the afternoon, there is another one with her, and she doesn’t have that kind of family affection (Sandra - Emily’s grandmother).
Our goal here is to help you in this process of getting closer to the child, so that reintegration happens, and this will happen through the accompaniment that we will do with you, guiding, listening, thinking together ways to make the child’s time in the shelter as short as possible, and also for reintegration or adoption to happen as safely as possible (Luísa - Psychologist).
In several situations, the team provides guidance to families about the importance of family life for the development of children and adolescents. In addition, families demonstrate awareness of the need for the child to be in a family environment. Thinking about possibilities for family reintegration and adoption of children in institutional care is often challenging. It can be said that family reintegration and the adoption of children who have a disability requires even more effort, considering that the challenges established for families are redoubled due to the presence of the disability.
Class 3. Commitment of family members
Class 3 comprises 12.4 % of the corpus, and the most prominent words are arrive, inform, achieve and time. It is possible to observe aspects such as the importance of commitment to weekly visits, arriving at the scheduled time, and if you need to be late or miss inform the team. These are fundamental aspects in the process of developing the bond between the child and the family, as well as reinforcing the need for the families to be committed.
When you need to be absent, it’s important to let them know, because the child is expecting to see you, and when you don’t come, they suffer a lot. It is a matter of emotional responsibility, letting us to know we can sit down and talk to them about why you are not coming, and help them understand that (Sílvia - Social Worker).
It is important to remember that they are in a care situation, and because they are distant from the family, a series of feelings are awakened, so the suffering of an unexplained lack can be much greater than one imagines (Luísa - Psychologist).
It can be observed that the team always seeks to reiterate the fact that being always present, notifying when they need to be absent, not delaying, among other aspects, are part of the family members’ commitment to the children/adolescents. This is a fundamental aspect considering that in many situations some family members had to miss the meetings and did not inform the team, which caused some children to undergo a suffering that could be alleviated if the reason for the absence was explained. In addition, the child creates expectations in relation to living with family members, which makes visits to the institution serve to strengthen bonds.
Class 4. Professional performance
Class 4 corresponds to 16.3 % of the text corpus, and it is highlighted words are reason, occupational therapist, knowing, wanting and when. One aspect to be emphasized in this class is the presence of the word occupational therapist, just as in Class 2 was the presence of the word social worker. The emphasis to those words refers to technical aspects of the performance of these professionals in making the rights of children/adolescents and families viable. At each meeting, the professionals reaffirm the importance of the relationship both between families and between families and the team, considering that the main objective of the team is to contribute so that the right to family and community coexistence is guaranteed.
I wanted to know when I can start taking him home, to spend the weekends for example, because I can’t stand being away from my boy anymore (Maria - Applicant to adopt)
I have to know how to take care of him at night, because the two times he went home he cried a lot. I don’t know if he misses here, I wanted to know how he spends the night here (Roberta - Grandmother)
Any type of doubt that you have you can always ask us, as well as the team of caregivers which are available to answer questions, clarify and help. Our goal is to make this experience of bringing families closer to children as healthy as possible (Luciana - Occupational Therapist).
An aspect always emphasized by the team during meetings was that all doubts and questions could be presented in that space. For several moments, it was possible to observe the team clearing doubts and contributing to the families having more and more resources (in terms of knowledge of childcare, knowledge about access to the service network, among others) to receive the child.
Class 5. Possibilities for enabling family reintegration or adoption
Class 5 comprises 18.3 % of the corpus, being one of the classes with the highest percentage, and the words family and possibility are the most prominent. The word possibility is closely related to the reflections made by the team, together with the families.
My father made a bed for Vinícius, I was even surprised, it seems that he is accepting more now, because in the beginning he did not want to (Jane - Pretend to adopt Vinícius).
Our family really wants Emily at home soon (Sandra - Grandmother)
My house is already well adapted for a child with a disability because of my son who passed away a few years ago, so that’s okay (Maria - Pretend to adopt Marcos).
Family life is fundamental to this process of child development. It is important to remember that a person is born to live with the family, and institutional care is just a curve in the path, and that it needs to last a short time, and for that to happen, the family needs to be committed to the possibility of family reintegration or adoption (Silvia - Social Worker).
The caregivers’ meetings with the team members were marked by speeches highlighting the real possibility of family reintegration, thinking about aspects such as opposing reflections related to the emotional preparation of the caregivers, the quality of the physical environment of the house, the financial situation and the acceptance of the child/adolescent by other family members. With regard to the child’s acceptance by the family, the team always seeks to think together about the possibility of participating in the group of other members, even those who will not live with the child/adolescent on a daily basis but who can take a more active role in the process of reintegration or adoption.
It is observed, in some cases, that families are highly motivated for family reintegration to take place, however sometimes there is a lack of resources, especially financial and structural, to receive the child. In this sense, the team seeks to guide and refer to services that can contribute to the viability of an adequate structure for the child. In addition, the team assumes, as can be seen in class 4, a welcoming and understanding position in the face of feelings and emotions such as fear and which can mark the process of family reintegration or adoption.
Class 6. Integration of families in the family reintegration process
Finally, Class 6 also corresponds to 18.3 % of the text corpus, and the words father, intend, ask and demonstrate stand out. The emphasis given to the word father, in this class, is important since six of the families that accompany children/adolescents in the institution, in only one of them the father is an active participant, as the other families are composed only of mothers without a partner, grandparents and uncles. It is important to highlight that the presence of the father of one of the children is due to the fact that the child’s grandmother has sought to enter the institution and encourage the child to participate in this process as well.
I wanted him to care more about coming to visit Emily, he is the father, sometimes it seems that he only comes because I insist, he has to have more responsibility with her (Sandra - Grandmother).
It would be good for him to show more willingness to bond with his daughter, he needs to take responsibility (Sandra - Grandmother).
Even so, the greatest interest in reintegration is reaffirmed by the grandmother, who at various times emphasized how much she would like the child’s father to be more interested in establishing ties with his daughter.
The prominence of words like asking and demonstrate refers to the fact that families are always seeking to understand several aspects related to childcare, the process of family reintegration and adoption, among other issues.
Whenever you have doubts, you can ask, as we always say, our goal here is to make the conditions as much as possible for this process to occur in the best possible way (Luciana - Occupational Therapist).
I would like to know more about when I can start taking Marcos home to spend the weekend, and what is the progress of the process in the Court, and how do you here at the shelter help in their decision (Maria - Applicant to adopt the Marcos).
Discussion
When thinking about family reintegration or adoption, an important aspect to be highlighted are the difficulties that some specific groups of children and adolescents encounter, as it is the case of children with disabilities. In the families monitored by the project team, some difficulties stood out, among them the lack of financial resources for some families to meet the child’s needs and the initial reluctance of some members of the extended family due to the child’s disability.
This characteristic results in a longer stay in institutions, and a great difficulty in finding people willing to adopt or members of the family group interested in family reintegration (Rizzini, 2008). It is noteworthy that the host institution where the study was carried out, during the data collection period, had more than 30 children and adolescents sheltered. However, only six children were living the experience of family life. This data corroborates the literature since the long stay in the institution is the reality of the majority.
The insertion of a child or adolescent in an institutional environment causes their main development environment to be modified, since the activities, roles, and relationships developed in the institutional environment are different from those present in the family environment. The structure at home is informal, caregivers are amateurs and have other motivations for taking care of children; whereas, in institutions, the structure is formal, and they are professionals who exercise the function of caring, which can hamper the solid and lasting emotional attachment that is an important factor in development (Bronfenbrenner, 1996).
A common aspect emphasized in the meetings promoted by the Pontes project is how essential the family is for the development of every child and adolescent (Bronfenbrenner, 1996; Fonseca, 2017, Souza, 2020).
The literature points out that in some situations there is enough interest in the family that family reintegration is carried out, however this cannot occur due to failures in the implementation of public policies and the disarticulation of the social network (Penso & Moraes, 2016).
Thus, the need for families to understand their role as being fundamental to the development of the child is reiterated, as well as the need for the team involved to develop actions that stimulate the capacities of families and allow the process to happen in the healthiest way possible. These aspects are of utmost relevance since the adaptation to the movement of reintegration of the child/adolescent into the family context must take into account continuity as one of the main components.
As highlighted by Bronfenbrenner (1996), continuity of care is a key factor in the process of human development. In this sense, family coexistence over space and time, as recommended by the project’s actions, added to joint participation with children and adolescents, in addition to strengthening bonds in the short, medium and possibly long term, contribute to the development of children and adolescents.
In this study, aspects such as the notion of the importance of the family’s presence in weekly meetings, the affective responsibility with the child’s wait for the visit, the guidelines regarding health care and activities of daily living, as well as the guidelines and referrals to the network of services are aspects that contributed to the development of the family’s abilities and skills in child/adolescent care. In general, the team always tried to point out that all follow-up and guidance aimed at preparing the family so that it could take care of the child/adolescent in the family environment, always paying full attention to their health and development.
That being said, the limitations in the operationalization of the Pontes project should be examined, such as the difficulties derived from the agenda of professionals who need to combine various activities that make up their institutional routine with the demands of the project, which in turn need to be organized considering in a special way the lives of the families involved. It is essential that there is an agreement between the technical team and the institution’s coordination in order to guarantee synchronized actions that prioritize the execution of the Pontes project with a view to favoring family reintegration and adoption of children/adolescents with disabilities.
Final considerations
It was possible to observe the importance of professionals and the perception of caregivers in the process of family reintegration and adoption. It is noteworthy that the understanding, by the family members, of the importance of family life for the development of the child/adolescent was a fundamental aspect in the process of establishing bonds. The contributions of the present work reveal the importance not only of the people involved in this project, but also their existence, since the monitoring of the five families culminated in the conclusion of the adoption process in two families and the reintegration into the family of origin of a child.
After the data collection period, the other two participating families continued to be monitored by the team, with the aim of completing family reintegration as soon as possible. These two families had less financial and structural resources, as well as more difficulties in dealing with the children, and needed more follow-up time so that the reintegration could occur as safely as possible.
In this sense, it is reiterated that, in addition to the importance of monitoring by the technical team, the family’s commitment to the child/adolescent and to the bonding process is fundamental for reintegration. This aspect is fundamental, since this commitment contributes to the family being present, having emotional responsibility and being willing to experience the process even if, in some situations, it takes longer than expected.
With regard to the limitations of the study, the low number of participants is pointed out, given that a greater number of family members would have further enriched the discussions. For future studies, it is proposed to compare data on family reintegration and adoption in institutions of children with and without disabilities.
