Helpgiving practices offered to families in Early Intervention programs in Specialized Rehabilitation Centers

Abstract:

Research points out the benefits of the Family-Centered Early Intervention practice, which proposes that it is essential to offer support to the needs of family members. This paper aims to analyze the helpgiving practices offered to family members in three public centers of early intervention, located in Baixada Santista-SP, Brazil. The study was conducted with nine relatives of children aged zero to three years, with delayed neuropsychomotor development and other diagnoses, and with 15 professionals. Semi-structured interviews were conducted through two scripts, one for family members and one for professionals. The data were analyzed from the perspective of content analysis, in the thematic analysis modality. As a result, it was possible to identify more relational than participatory helpgiving practices; however, both were little identified in the participants' statements. In addition, the support offered by the service is more focused on the needs of children, and only in some cases it is directed to the needs of family members. This paper aims to emphasize the importance of providing support to the needs of family members in early childhood intervention services through helpgiving practices.

Resumo

Pesquisas apontam os benefícios da prática da Intervenção Precoce Centrada na Família, a qual propõem que é imprescindível oferecer apoio às necessidades dos familiares. O objetivo deste artigo é analisar as práticas de ajuda oferecidas aos familiares em três serviços públicos de intervenção precoce, localizados na Baixada Santista-SP. O estudo foi realizado com a participação de nove familiares de crianças de zero a três anos, com atraso no desenvolvimento neuropsicomotor e outros diagnósticos, atendidas nos serviços e de 15 profissionais. Foram realizadas entrevistas semiestruturadas através de dois roteiros, um para familiares e outro para profissionais. Os dados foram analisados sob a perspectiva da análise de conteúdo, na modalidade de análise temática. Os resultados indicaram mais práticas de ajuda relacional do que participativa; contudo, ambas são realizadas com baixa frequência e por apenas alguns profissionais. Além disso, o apoio oferecido nos serviços pelos profissionais está mais voltado às necessidades das crianças, e em apenas alguns casos são direcionados aos familiares. Espera-se com este artigo salientar a importância de práticas de ajuda relacional e participativa, bem como a oferta de apoio aos familiares em serviços de intervenção precoce.

Palavras-chave:
Intervenção Precoce; Família; Centro de Reabilitação; Primeira Infância

Introduction

Increasingly, research and practices on Early Childhood Intervention (ECI) point to the need and importance of support for family members with the proposal of a paradigm shift in the way of acting, stopping the focus only on the child, according to the traditional model of action, and shift the focus on to the family. This paradigm shift is currently represented by the Family-Centered Early Intervention approach (FCEI), which advocates individualized, flexible practices and prioritizes the active participation and protagonism of family members throughout the intervention process, in order to strengthen the family and promote new capacities (ALMEIDA, 2011; CARVALHO et al., 2016; DUNST, 2000; DUNST; TRIVETTE, 2009; DUNST; TRIVETTE; HAMBY, 2007; FRANCO, 2015; PEREIRA; SERRANO, 2014; MCWILLIAM; WINTON; CRAIS, 2003). Pereira and Serrano (2014) affirm that directly or indirectly the support offered to the family has a great impact on the child, being more powerful than those exclusively centered on the child.

The FCEI, which represents the theoretical and practical approach on which this study is based, proposes to professionals a new look and a new way of acting. In the family-centered approach, professionals are invited to carry out a change of roles, where the family begins to actively participate as a protagonist, has autonomy in decision-making and for this receives information from professionals according to all their demands. For this change in the logic of action, and for the family-centered practice to actually happen, the intervention needs to have as its main objective the support of family members (CARVALHO et al., 2016; DUNST, 2000; FRANCO, 2015; MCWILLIAM; WINTON; CRAIS, 2003).

Carvalho et al. (2016), Division for Early Childhood (2014), Dempsey and Dunst (2004), Dunst (2000), Dunst, Trivette and Hamby (2007), Dunst and Trivette (2009), and García-Sánchez et al. (2014) point out that support for family members should be carried out through effective helpgiving practices, seeking to strengthen existing parental capacities, identify family concerns and priorities, identify supports and resources that can be used, promote opportunities that allow the acquisition of new knowledge and skills, as well as strengthen the confidence and feeling of selfefficacy of parents, so that they can cope with their responsibilities in care and promote learning opportunities for children. The FCEI proposes two types of helpgiving practices to provide the necessary support for families, relational and participatory.

The practice of relational helpgiving is based on building and strengthening relationships, promoting active and reflective listening, empathy, authenticity, credibility, understanding, collaboration, mutual trust, with warm and interested attitudes. Relational practices are the basis for the professional to recognize and validate existing strengths and thus be able to use the family's capabilities to improve its functioning (CARVALHO et al., 2016; DEMPSEY; DUNST, 2004; DUNST; TRIVETTE, 2009; DUNST; TRIVETTE; HAMBY, 2007).

Participatory helpgiving practice supports informed choice, family participation, and essentially enhances family competencies rather than creating dependencies. It refers to the professional's behaviors in search of the involvement of family members in the therapeutic process, the strengthening of the family to develop new capabilities and the incentive to increase the degree of control that parents have in family functioning. Examples of participatory helpgiving practices are: the involvement of family members in decision-making and in the execution of objectives; the promotion of autonomy to family members; assistance so that they can identify their priorities; the development of capacities so that they make informed choices; and the sharing of intervention strategies (CARVALHO et al., 2016; DEMPSEY; DUNST, 2004; DUNST; TRIVETTE, 2009; DUNST; TRIVETTE; HAMBY, 2007).

Studies claim that although relational practices are a necessary condition to qualify the relationships between family and professionals, they are not sufficient to strengthen the family or promote new capacities, for this, it is essential that they have participatory practices, which aim at a more active involvement of the family in the entire intervention process. Therefore, for an effective action in supporting family members, the two helpgiving practices, relational and participatory, must be carried out simultaneously (CARVALHO et al., 2016; COSTA et al., 2017; DEMPSEY; DUNST, 2004; DUNST, 2000; DUNST; TRIVETTE; HAMBY, 2007).

In the literature review carried out by Dempsey and Kenn (2008) it is demonstrated that services that offer the practice of participatory helpgiving are more strongly associated with the achievement of the results desired by the family, as well as the family members consider themselves more satisfied with the support received. The research of Wade, Mildon and Matthews (2005), points out that parents consider family-centered practices more beneficial than professional/childcentered practices, and even more beneficial when offered through relational and participatory helpgiving practices.

American, Australian, Portuguese and Spanish researches also sought to identify, analyze and compare the helpgiving practices offered to family members, among them: Dunst et al. (2002) analyzed the relationship between the different types of ECI programs (professional-centered and family-centered), and point out that family-centered programs offer more relational and participatory helpgiving practices; Campos (2018) pointed out that relational and participatory practices promote quality in the support provided to families in ECI; Carvalho (2015) and Pinto and Serrano (2017) identified a higher frequency of relational practices than participatory ones, among other factors. Other results and research will be pointed out in the discussion section of this article.

In Brazil, the most recent research on ECI shows a strong prevalence of practices aimed at stimulating skills, based on deficits, with a child-centered focus and structured from a rehabilitative model of care (FERNANDES; SERRANO; DELLA BARBA, 2016; FERREIRA et al., 2019; MARINI; LORENZO; DELLA BARBA, 2017; MARINI; LORENZO; DELLA BARBA, 2018).

It should be noted that until 2012, ECI care in Brazil was predominantly provided by philanthropic institutions. Only after creation, by the Federal Government, of the "Network of Care for People with Disabilities" for the implementation of rehabilitation actions, which Specialized Rehabilitation Centers (SRC) were created in several Brazilian cities, making the ECI service offer official in the Unified Health System (SUS) (Brazil, 2013).

In 2016, the first ordinance directly related to ECI was launched, being an Ordinance of the Ministry of Health No. 355, of April 8th, 2016, which includes as a procedure offered by SUS early stimulation for the neuropsychomotor development of children up to three years of age (BRASIL, 2016b) and the “early stimulation guidelines for children from zero to 3 years with delayed neuropsychomotor development” (BRASIL, 2016a). Although these documents seek to substantiate and direct the actions and services offered, it is not possible to clearly identify how in practice these actions in ECI should be carried out.

Based on what has been shown in the international literature on the importance of changing the offer of support in ECI programs, no longer focusing on children only, transforming it into family-centered action through helpgiving practices, this article aims to analyze the support offered to family members through relational and participatory helpgiving practices in ECI programs of three public services located in Baixada Santista-SP, based on the perception of family members and professionals, and to propose reflections correlating the data found to the assumptions of the FCEI approach.

Method

This article is part of a master's dissertation. This is a descriptive and exploratory study with a qualitative approach. The choice of the ECI programs to be studied was defined by the following eligibility criteria: be a municipal Public Health Service located in the region of Baixada Santista-SP care for children aged 0 to 3 years at risk of delayed neuropsychomotor development, and/or with delayed neuropsychomotor development and/or with a defined diagnosis and have a team that worked with this age group, including the following professionals: Occupational Therapist, Speech Therapist, Physiotherapist, Psychologist and Social Worker. Thus, the research took place in the municipal services of the cities of Santos, São Vicente and Praia Grande and therefore, the collection of information was carried out in three public services. The services of Santos and Praia Grande are Specialized Rehabilitation Centers (SRC) created in mid - 2017, and in São Vicente, the municipal service exists for over 17 years.

Participants

Participated in the study: 9 mothers of children aged zero to three years. Although the study was open to the participation of mothers and fathers, only mothers participated, their age ranged from 22 to 44 years. 15 health professionals also participated, being 1 man and 14 women, with the ages ranging between 27 and 62 years. In each service, 3 mothers and 5 professionals were interviewed, one professional from each profession described above.

Instruments

For data collection, two semi-structured interview scripts were developed, one for family members and the other for the professionals. The elaboration of the scripts was carried out according to the literature studied on the practice of FCEI and based on two instruments: Family FOCAS - experimental version translated by Isabel Chaves de Almeida (ALMEIDA, 2007) and Evaluation of Family-Centered Practices in Early Intervention - BRASS TACKS - Experimental version, translated and adapted by Ana Paula da Silva Pereira (PEREIRA, 2009).

Both interview scripts were tested through a pilot study with the participation of three family members and three professionals from other institutions, who gave their opinions on the comprehensibility, quality and adequacy of the scripts to the theme of the study.

Data collection procedures

First, the approval of the Municipal Health Departments of each municipality was requested, and after approval, the managers of each service were asked to indicate family members and professionals who met the inclusion criteria of the study. Then, professionals and family members were approached and invited to participate in the research.

Interviews were conducted in rehabilitation centers, according to the availability of professionals and family members. All interviews were recorded and transcribed for further analysis.

Ethical procedures

This study was approved by the Ethics Committee in Research With Human Beings of the Federal University of São Paulo, opinion number 0339.0016.04/2018, CAAE number 86600218.1.0000.5505. In the data collection, the Informed Consent Form was delivered, read and signed by the participants.

The identity of the participants was preserved, using as identification of the family the acronym “FA” followed by the numbering from 0 to 9, according to the number of participants, and of the professionals using as identification the acronyms: “AS” which corresponds to the Social Workers; “FT” for Physiotherapists; “FO” for Speech Therapist; “PS” for Psychologists and “TO” for Occupational Therapists, and the acronyms were followed by the numbers 1 to 15, composing the total number of participating professionals.

Data analysis procedures

According to Bardin (2016), Content Analysis is a set of communication analysis techniques that allows the inference of common knowledge and whose primary function is the critical unveiling of a theme. The data collected from the interviews were organized and analyzed from the perspective of content analysis, in the modality of thematic analysis, following the assumptions of Bardin (2016) and Gomes (2009), through the inductive approach, and the categories emerged from the reading and rereading of the data, with groupings of common themes found in the participants' speeches and data coding.

The content analysis enabled the interpretative synthesis of the information, enabling the dialogue of the themes, objectives and theoretical assumptions of the study. The theme related to the practices of relational and participatory helpgiving, which this article deals with, falls into two of the categories defined in the master's research. The analyses result, therefore, from a progressive and analogical systematization process, with the problematization of explicit and implicit ideas in the participants' statements, in order to create dialogues between the problematized ideas, with information from other studies related to the family-centered approach.

Results and Discussion

The presentation of the results and discussion with the literature aims to make a reading of the speeches of the participants seeking to understand the current context of existing relational and participatory helpgiving practices in relation to the needs of children and families and encourage reflections based on what is recommended by the family-centered approach, in order to highlight which support practices found and the challenges to be overcome in relation to offering support to families.

Relational helpgiving practices

One of the relational helpgiving practices addressed with the professionals in this study was the recognition of children's strengths. Carvalho et al. (2016) and McWilliam, Winton and Crais (2003) report that enhancing the capacities associated with the areas of strengths, in addition to compensating for limitations in other areas of development, allows families to observe results of their efforts and feel proud of their child's progress. However, it seems to be an aspect that is sometimes neglected, because most ECI professionals are taught to recognize and improve developmental deficits and focus their efforts on the aspects that children have the greatest delay. When asking the professionals, some say they try to highlight the capabilities of children to their families, however, part of the professionals mention that it is also necessary to show the difficulties of children to parents, presenting a traditional performance that is based on deficits as planning:

I try to emphasize what the child can do, but [...] I need to say that the child has a delay, because it is based on what the child has a delay on and cannot do that we will elaborate the intervention, right? The planning. (PS10)

Another relational helpgiving practice mentioned was the recognition of family members' efforts and praise. On this topic, McWilliam, Winton and Crais (2003) state that recognizing the efforts of parents is very important and making it a habit to say something positive about parents whenever you meet them, can greatly helpgiving in the relationship between parents and professionals, as well as increase parents' self-confidence and self-esteem.

Of the data collected, only a few professionals and one of the mothers comment on the existence and importance of this practice of helpgiving:

I think I should always praise, but sometimes we're rushing and don't talk. Even to value the work they are doing at home (FT5)

They always compliment me. They give me exercises, and they see the difference and congratulate me. And it's very important because I strive." (FA3)

Another practice of relational helpgiving pointed out was listening. For Carvalho et. al (2016), Dunst, Trivette and Hamby (2007) and McWilliam, Winton and Crais (2003), listening is an essential professional capacity to identify family priorities, to show families that one is interested, that one accepts and respects their opinions. When asked to report on that, half of the professionals mentioned that they always offer space for listening, another half that only sometimes, and only one professional reported not offering it. However, some professionals point out greater importance to guide rather than listen:

I listen, but I also need to question, we meet halfway, if not, I can't guide. (PS10)

No, no, there's no listening. It's about 10 minutes at the end of the service, and if we have a lot of guidance to give, we call them before and it's all over. (FT6)

According to some statements, it seems that listening often happens spontaneously from a demand exposed by family members, informally on a day-to-day basis, and listening does not seem to be considered as part of the therapeutic planning of professionals and the team, as recommended in the family-centered approach:

[...] we plan what to do in therapy, but they ask one question and others come, then we end up not even doing the service and doing this listening. (FO9)

In addition to listening to questions related to children, professionals are also expected to listen to questions related to their own family members, as explained by Carvalho et al. (2016) and McWilliam, Winton and Crais (2003), who state that when receiving families many questions and needs may arise, often these are more related to family members, personal problems, family dynamics and financial problems, among others. When this topic was raised with professionals, some mentioned that only some families cite issues that are not related to the care of their child.

McWilliam, Winton and Crais (2003) explain that parents generally do not automatically talk about what they feel, what worries them and about recent events that have occurred within the family, because many politely believe that they should not occupy the time of professionals, unless in some way, the professional demonstrates that he is willing to listen and invites parents to talk.

Only one mother reported having already taken issues beyond the needs of her child:

I have already brought problems beyond my son, and it was very good because they listened to me, talked, cherished. (FA8)

The other mothers report bringing only matters related to their children. According to their statements, the visits happen to be directed to issues related to children, and that other demands of the family are not the purpose of the services. Some professionals report being open and listening when families need to talk about other issues. On the other hand, other professionals point out that for issues brought beyond the child's need, they try to refer to the psychologist and/or social worker, from the service itself, or from outside the service, as well as guide the search for support in their own support network and community, as demonstrated in the following speech:

[...] but also they bring a lot that has nothing to do with the child, so we have the social worker, the psychologist, so when I see that the conversation runs away from the child, I direct it. (TO13)

The excerpt cited above seems to point to a perspective of a more traditional approach which focuses only on the child, as well as points to the lack of practice of relational helpgiving, which promotes listening to the demand brought. These data also meet the results indicated in a survey carried out in a service in Baixada Santista by Valverde and Jurdi (2020), in which they affirm that there is a path taken by families through referrals to specialized services in a disarticulated way, with little space for listening, appreciation, dialogue, discussion and exchanges between professionals and family members.

McWilliam, Winton and Crais (2003) report that some professionals fear that the conversation may lead to issues that are beyond their scope of competence, as well as fear that families expect help in needs that are beyond the traditional ones offered by the service. However, if the professional's role is seen as that of a support network worker, willing to help families create their own solutions or direct community resources related to their concerns, it may make it easier for the professional to be more receptive.

Deepening even more about the partnership developed between professionals and family members, the mothers were invited to talk about whether throughout the therapeutic process they choose a professional as a reference. Part of the mothers reported that yes, and explained that one ends up being chosen for presenting listening, openness to conversations, empathy, affinity, for passing security and trust, that is, for offering support through relational helpgiving practices.

According to Carvalho et al. (2016) and McWilliam, Winton and Crais (2003), the perceptions and forms of relationships between families and professionals can be determined by a set of variables such as: past experiences, values, expectations and personal interaction styles. With this, a professional is expected to be sensitive and understanding of possible family needs, adapt their interaction to different situations, and avoid making hasty and unjustified judgments about the family. The practice of relational helpgiving requires more than specific technical knowledge, but is related to posture and empathy built in the professional and family relationship.

Participatory helpgiving practices

Among the participatory helpgiving practices, the most mentioned was guidance. According to the interviews, professionals give a lot of importance to guidance, and for family members to follow their guidance at home, different strategies are created seeking the participation and understanding of parents, such as allowing parents to attend the service, or doing some maneuvers and exercise simulations on the family members themselves so that they learn how to do it, asking the family to record what they have done with the child for later conversation, or even asking family members to carry out the guidance given in front of them.

I call the father and mother here together and do the orientation, I show how to do it in the child, I do it in them too, the stretches I do in the parents to show how to hold, how it has to be done. (TO15)

From the above, it is possible to observe that this practice of participatory helpgiving of professionals in relation to families is related to offering them information about what they should do with their children through guidelines, which seem to focus on children, and the family is seen as minimally capable of implementing and developing the guidelines prescribed and decided by professionals.

The results are in line with the research of Almeida (2010), Dias and Cadime (2019) and the bibliographic research carried out by Marini, Lourenço and Della Barba (2017), which indicate an advance in the process of inserting the family into care from the recognition of the child as part of a context that influences its development, however, the most frequent practices are centered on providing information/guidance to the family in relation to the needs of children, especially about strategies to deal with and teach the child, and are not responsive to the needs of the family. Although the family is encouraged to be involved and participate, professionals still appear at the center of care, as responsible for the interventions, as holders of knowledge, being that the needs of the children and the choices of the professionals that guide the intervention.

It is also considered a practice of participatory helpgiving to answer parents' questions, involve them in the planning and execution of objectives, and share intervention strategies, so that they understand what they want to achieve with their children (CARVALHO et al., 2016; DUNST; TRIVETTE, 2009; DUNST; TRIVETTE; HAMBY, 2007), most of the mothers in this study mentioned the absence of this type of support.

Some mothers also pointed out that they would like to better understand the prognosis of their children and what is intended to be achieved with targeted stimuli:

[...] 'where can I get, why is this being done?’ [...], I thought she was moving her arm, but no, they are involuntary movements, and I was understanding this because I was asking, I was looking for this information. (FA9)

As in this study, the mothers indicated that they felt a lack of answers to their demands, in the research carried out by Almeida (2010), mothers also expressed some dissatisfaction related to the need for information about their child's problems and to have a prognosis.

One mother directly points out that she would like professionals to delve more individually to know the particularities of families, that is, issues beyond the needs of children:

I think this question of delving more individually, knowing if they have someone to take care [of the child], knowing the family as well, and not exactly just the child, because you perceive it that way, [...] the professional must first reach the caregivers and parents, because this will reflect directly on the child (FA7)

It should be noted here that in the practice developed in the services studied, in some cases, the professionals end up not answering the questions and needs of the family, and the action performed seems to be always similar, centered on the child, regardless of the demands of the family. In a family-centered perspective, Carvalho et al. (2016) emphasize that each family is unique, so the importance of individualized actions, directed to the needs of each family. Therefore, they explain that it is crucial to identify the family's priorities and respond to their demands so that the intervention happens in order to help the family to conquer and respond to what is important to them, and not what professionals think is important.

Another point addressed with family members was in relation to how they feel for the care of their children in the future, as in the study by Almeida (2011), most families seem to feel anguish and insecurity when it comes to the future, both in relation to the difficulties of their children, as well as about their own abilities to stimulate them.

When asking if the future is a topic addressed within the ECI programs, some mothers report that the professionals' speech is always related to waiting to understand what the future will be like:

I'm afraid of the future, because just like that, everything I ask, the doubts I bring, it is always 'let's wait', it is all I hear [from the professionals], let's wait, let's wait, let's wait, I have no answers. (FA9)

Additionally, professionals were also asked about the strategies used to prepare and empower families for the future. Some professionals report that the orientations carried out already prepare families, however, some professionals claim that it is not a topic generally discussed. From these data it is possible to verify that the future is not a subject much addressed, and it seems that the work offered in the services studied seeks to guide family members to the demands of the present, and do not worry about empowering them so that they feel capable to guide the lives of their children in the future without the need for support from a formal network.

In relation to support on issues more related to the demands of the family members themselves, psychologists and social workers were the professionals who most demonstrated to offer this participatory helpgiving with the indication of community resources so that they can take care of their own psychological health, however, these helpgiving practices also do not seem frequent and neither recommended by the services:

[...] many bring in that they are psychologically exhausted, battered, and I say ‘you need to take care of yourself, take a walk, go to the garden, go to some activity, [...] the question of her own health and the question of a generation of income, what she does to earn some money. (AS2)

Despite the above, mothers mention missing the support of social services:

[...] I didn't know about the transportation voucher, and I often came here on foot, the women that also bring their children here told me, she also told me about his retirement (FA2)

This fact of lack of knowledge and lack of information on the part of family members may be associated with the issue that the social worker is only requested on demand, and thus, in some situations, the demands and needs of the family go unnoticed by the team, given that the survey of complaints and family priorities are not objectives stipulated by the programs offered in the services studied. This encourages reflection on the importance of the social worker as an active member of the team to provide information to family members of all their rights and support possibilities, as well as the importance of a more in-depth medical history and initial assessment of the socioeconomic conditions and contexts in which families live, including transportation, employment, housing, income and formal and informal support network.

Corroborating the above and found in this study, in Almeida's research (2011) a group of families also revealed that given their concerns and dissatisfaction with their housing conditions, economic conditions and unavailability of time to be with their child, the ECI program does not seem to have offered support.

However, when mentioned about improving support for the priorities and needs of their own family members, most mothers reported that they do not feel the need for greater support:

I don't miss any assistance for myself. (FA5)

Such data also meet the research of Almeida (2011), which points out that although there are gaps in the support offered to family members, families are satisfied with the services they received, and this is apparently because what families want in the first place is a work directed to the development of their child and this is the practice that usually professionals who work based on a traditional approach are well trained to perform.

However, in a study by McWilliam et al. (2000), when a mother was aware of the possibilities of support with family-centered practices, she pointed out that she was happy with the practices she received until then because she was unaware of the possibility of extended support to the family. McWilliam, Winton and Crais (2003) point out that for the helpgiving to the family to apply, it is necessary to make it clear to the family members that addressing their own issues is also an option within the ECI service.

This fact also happened in this research, and throughout the interview some participants, both professionals and family members, made comments signaling situations that did not happen and that they believed to be relevant to happen, mainly related to the participation of family members in the construction of therapeutic objectives and reassessments, as well as in relation to offering more listening space, recognizing the strengths of family members and supporting the needs of family members themselves:

I think we are looking for more and more direct contact with the family, trying to provide more and more this moment of listening, to provide moments that they can share with us the moments of anguish. (FO8)

[...] I'm reviewing my performance like that, everything. [...] studying the theme [family-centered approach] I understand that there is no point in seeing what the child needs and not seeing what the family needs, that the father is unemployed, and that the mother works even at night (AS1)

Given the above, it should be pointed out that according to the results, the three services studied are far from the FCEI approach, their intervention practices are more related to the needs of the child, than to the needs of the family and structured from a rehabilitative model of care, as pointed out by other Brazilian studies (FERNANDES; SERRANO; DELLA BARBA, 2016; FERREIRA et al., 2019; MARINI; LOURENÇO; DELLA BARBA, 2017; MARINI; LOURENÇO; DELLA BARBA, 2018).

Valverde and Jurdi (2020) report the need for support and actions aimed at family members, considering that the discrepancy in the perception of the support received for the child and the family can influence the participation of family members, in the care of their children, and consequently in the development of children.

In general, the results of this research indicate that the performance in the services studied is child-centered and does not prioritize helpgiving practices through relational and participatory practices. This is because, although some relational and participatory helpgiving practices are mentioned punctually, they happen without professionals realizing and valuing the importance of them happening constantly. Thus, the helpgiving practices do not seem to be considered necessary and recommended as a basis in the performance of the professionals participating in this research, in the same way there seems to be no requirement or directivity on the part of the services in relation to the type and form of helpgiving practice to be offered by the professionals.

These data also corroborate the results from the study by Almeida (2004) and Dunst et al. (2002), who point out that professionals who are not integrated in family-centered programs report a greater focus of their work exclusively on the child, whereas family-centered programs have greater participation of family members because the professionals involved develop relational and participatory helpgiving practices and have better conditions in terms of training and supervision.

Another important factor to be emphasized, among the helpgiving practices mentioned in this study, relational helpgiving practices, although not performed by all professionals, were mentioned more frequently than participatory helpgiving practices.

These data are in line with the results presented by Dunst, Trivette and Hamby (2007), Almeida (2010), Almeida (2011), Carvalho (2015) and Pinto and Serrano (2017) which indicate that relational helpgiving practices are more commonly performed and build authentic relationships with families; however, professionals have greater difficulties in developing participatory helpgiving practices and are still beginning their implementation through the promotion of choices, decision-making and family involvement. Almeida (2010) complements by stating that participatory practice depends not only on changes in the performance of professionals themselves, but also on changes in the attitudes of families, who are already used to a secondary and more passive role during the intervention.

Other recent studies have shown an increase in participatory helpgiving practices in relation to previous studies, and these practices are more consolidated by professionals aiming at appropriate work with families, and this fact has been correlated with the training, professional development and supervision of professionals in ECI services, this data is pointed out by Costa et al. (2017), Campos (2018), García-Sánchez et al. (2014), and in the study of Dunst, Espe-Sherwindt and Hamby (2019).

In the Brazilian services studied in this research, the practice of FCEI is not prioritized and there is evidence of low reference of relational practices and even less of the participatory ones. Thus, the support offered to family members presents gaps, mainly related to the needs of the family members themselves. This fact reveals the need for changes in ECI performance in Brazil and training of professionals to be able to transform their practices, offering greater support to families and using the family-centered approach as a basis. In this sense, it is also necessary to have a wellfounded and directive Brazilian legislation on good practices and conducts in ECI.

Final considerations

Given the purpose of analyzing the support offered to families in three public services that have early intervention programs in childhood, it seems that professionals understand the importance of supporting the needs of families, however, the predominance of the work developed in day-to-day practice is directly related to intervention with the child and based on the needs of the child, which in most cases are determined by the professional. The support offered to family members is primarily related to the practice of orientations, with the purpose of training them to perform stimuli on their children, these are also determined by professionals, without taking into account the priorities, needs and possibilities of the family.

In this way, it is possible to reflect on the importance of changing the attitudes of professionals and family members, favoring the implementation of helpgiving practices, not only relational, but mainly participatory helpgiving, thus promoting opportunities for family members to be protagonists in the process of ECI of their children. In order to transform traditional actions into effective helpgiving practices, a set of skills on the part of professionals is necessary, and therefore, it is essential to reflect on the need to train professionals and supervisors to act based on family-centered practices, as well as a change in the organization of services and the creation of public policies, so that they advocate, encourage and value practices to support families in the ECI process.

It is hoped that this article may awaken in ECI professionals an interest in the family-centered approach and relational and participatory helpgiving practices, encouraging them to offer families according to their current realities: opening listening spaces; demonstration of compassion, empathy and respect during practices; strengthening of parents' confidence and feeling of self-efficacy; emotional support; strengthening of relationships between professionals and family members; help to strengthen the capacities of existing family members and develop new necessary skills; opportunities that allow the acquisition of new knowledge; offer of information; involvement of family members in the therapeutic process, including evaluation, planning and execution of objectives, reassessments and care; involvement of family members in decision-making; sharing of intervention strategies; and therefore, offering individualized, flexible and responsive helpgiving practices to the family's concerns and priorities.

It is believed that this theme needs to be further explored in Brazilian services through new research, in order to study ways to operationalize family-centered practice in ECI programs.

Therefore, this study aims to highlight the importance of providing support to the needs of family members within ECI programs in Brazil, and thus advance the adoption and deepening of the family-centered approach among ECI professionals and services, transforming child-centered action to family-centered support practices.¹

Acknowledgements

We thank the Coordination for the Improvement of Higher Education Personnel - Brazil (CAPES) for funding this research.

Referências

• ALMEIDA, I. C. A intervenção centrada na família e na comunidade: O hiato entre as evidências e as práticas. Análise Psicológica, v. 1, n. 29, p. 5-25, 2011.
• ALMEIDA, I. C. Estudos sobre a intervenção precoce em Portugal: Ideias dos especialistas, dos profissionais e das famílias. 2007. Tese (Doutoramento em Psicologia) - Universidade do Porto Faculdade de Psicologia e de Ciências da Educação, Porto, 2007.
• ALMEIDA, I. C. Intervenção Precoce: Focada na criança ou centrada na família e na comunidade? Análise Psicológica, v. 1, n. XXII, p.59-66, 2004.
• ALMEIDA, I. C. O Modelo de Intervenção centrado na família: da teoria à prática. Revista Diversidades, v. 27, p. 12-16, 2010.
• BARDIN, L. Análise de Conteúdo Tradução de Luís Antero Reto e Augusto Pinheiro. São Paulo: Edições 70, 2016.
• BRASIL. Ministério da Saúde, Secretaria de Atenção à Saúde. Diretrizes de estimulação precoce: crianças de zero a 3 anos com atraso no desenvolvimento neuropsicomotor. Brasília: MS, 2016a.
• BRASIL. Ministério da Saúde, Secretaria de Atenção à Saúde. Portaria do Ministério da Saúde nº 355, de 8 de abril de 2016. Inclui o procedimento de estimulação precoce para desenvolvimento neuropsicomotor para atendimento na Atenção Básica na Tabela de Procedimentos, Medicamentos, Órteses, Próteses e Materiais Especiais do SUS. Diário Oficial da União, seção 1, p. 63. Brasília, 2016b.
• BRASIL. Secretaria de Direitos Humanos, Secretaria Nacional de Promoção dos Direitos da Pessoa com Deficiência. Viver sem Limite - Plano Nacional dos Direitos da Pessoa com Deficiência Brasília, 2013.
• CAMPOS, C. M. Competências relacionais e participativas do profissional de intervenção precoce: perspectivas de mães e de profissionais da zona norte de Portugal. 2018. Tese (Doutoramento) - Universidade do Minho, Braga, 2018 .
• CARVALHO, J. C. Estudo das ELI dos distritos de Braga e Bragança: um contributo para a avaliação das práticas centradas na família. 2015. Tese (Doutoramento). Universidade do Minho, Braga, 2015.
• CARVALHO, L. et al Práticas recomendadas em Intervenção Precoce na infância Um guia para profissionais. Coimbra: Associação Nacional de Intervenção Precoce, 2016.
• COSTA, C. M. F. et al Práticas centradas na família e os resultados familiares: avaliação de práticas de intervenção precoce na perspectiva da família. Revista de Estudios e Investigación en Psicología y Educación Vol. extr 11, p. 274-278, 2017.
• DEMPSEY, I.; DUNST, C. J. Helpgiving styles and parent empowerment in families with a young child with a disability. Journal of Intellectual and Developmental Disability, v. 29, n. 1, p. 40-51, 2004.
• DEMPSEY, I.; KEEN, D. A review of processes and outcomes in family-centered services for children with a disability. Topics in early childhood special education, v. 28, n. 1, p. 42-52, 2008.
• DIAS, P. C.; CADIME, I. Child and family-centered practices in early childhood education and care services: An empirical study with families and practitioners in Portugal. Child and Adolescent Social Work Journal, v. 36, n. 3, p. 285-294, 2019.
• DIVISION FOR EARLY CHILDHOOD(DEC) . DEC recommended practices in early intervention/early childhood special education, 2014. Disponível em: Disponível em: http://www.dec-sped.org/recommendedpractices Acesso em: 11 nov. 2019.
  » http://www.dec-sped.org/recommendedpractices
• DUNST, C. J.; BOYD, K.; TRIVETTE, C. M.; HAMBY, D. W. Family‐oriented program models and professional helpgiving practices. Family relations, v. 51, n. 3, p. 221-229, 2002.
• DUNST, C. J.; ESPE-SHERWINDT, M.; HAMBY, D. W. Does Capacity-Building Professional Development Engender Practitioners’ Use of Capacity-Building Family-Centered Practices? European Journal of Educational Research, v. 8, n. 2, p. 515-526, 2019.
• DUNST, C. J. Revisiting “Rethinking early intervention”. Topics in Early Childhood Special Education, v. 20, n. 2, p. 95-104, 2000.
• DUNST, C. J.; TRIVETTE, C. M. Capacity-building family systems practices. Journal of Family Social Work v. 12, p.119-143, 2009.
• DUNST, C. J.; TRIVETTE, C. M.; HAMBY, D. W. Meta-analysis of family-centered helpgiving practices research. Mental retardation and developmental disabilities research reviews, v. 1, p. 370-378, 2007.
• FERNANDES, P. R. S.; SERRANO, A. M. S. P. H; DELLA BARBA, P. Diálogos sobre a Intervenção Precoce. Journal of Research in Special Educational Needs, v. 16, n. s1, p. 373-377, 2016.
• FERREIRA, T.S. et al Intervenção precoce e a participação da família: relato de profissionais de APAES. Revista Educação Especial, v. 32, n. 47, p. 1-20, 2019.
• FRANCO, V. Introdução à Intervenção Precoce no desenvolvimento da criança, com a família, na comunidade e em equipe Edições Aloendro, 2015.
• GARCÍA-SÁNCHEZ, F. A. et al Atención temprana centrada en la familia. Siglo Cero, v. 45, n. 3, p. 6-27, 2014.
• GOMES, R. Análise e Interpretação de dados de pesquisa qualitativa. In: MINAYO, M. C. S. (org.). Pesquisa social: teoria, método e criatividade. 28. ed. Petrópolis, RJ: Vozes, 2009. p. 79-108.
• MARINI, B. P. R.; LOURENÇO, M. C.; DELLA BARBA, P. C. S. Perspectiva brasileira das ações de intervenção precoce na infância. In: FUERTES, M. et al (org.). Teoria, práticas e investigação em intervenção precoce Lisboa: CIED, p. 27-49, 2018.
• MARINI, B. P. R.; LOURENÇO, M. C.; DELLA BARBA, P. C. S. Revisão sistemática integrativa da literatura sobre modelos e práticas de intervenção precoce no Brasil. Revista Paulista de Pediatria, v. 35, n. 4, p. 456-463, 2017.
• MCWILLIAM, P. J.; WINTON, P.; CRAIS, E. (Eds.). Estratégias práticas para a intervenção precoce centrada na família Porto: Porto Editora, 2003.
• MCWILLIAM, R. A. et al Professionals’ and families’ perceptions of Family-Centered Practices in Infant-Toddler Services. Early Education and Development, v. 11, n. 4, July, 2000.
• PEREIRA, A. P. Práticas centradas na família em intervenção precoce: Um estudo nacional sobre práticas profissionais. 2009. Tese (Doutoramento) - Universidade do Minho, Instituto de Estudos da Criança, Braga, 2009.
• PEREIRA, A. P.; SERRANO, A. M. Early intervention in Portugal: Study of professionals’ perceptions. Journal of Family Social Work, n. 17, v. 3, p. 263-282, 2014.
• PINTO, M. J. S.; SERRANO, A. M. Caracterização da participação das famílias no apoio pelas equipas locais de intervenção. Revista de Estudios e Investigación en Psicología y Educación, v. extr., n. 11, 2017.
• VALVERDE, B. B. D. R.; JURDI, A. P. S. Análise das Relações entre Intervenção Precoce e Qualidade de Vida Familiar1. Revista Brasileira de Educação Especial, v. 26, n. 2, p. 283-298, 2020.
• WADE, C. M.; MILDON, R. L.; MATTHEWS, J. M. Service delivery to parents with an intellectual disability: Family‐centred or professionally centred? Journal of applied research in intellectual disabilities, v. 20, n. 2, p. 87-98, 2007.

Note

• ¹
  C. P da C. Vida: text design; data collection and analysis; source organization. C. C. B. da Silva: orientation and critical review of the study

Publication Dates

• Publication in this collection
  06 Jan 2023
• Date of issue
  2022

History

• Received
  10 July 2021
• Reviewed
  26 Oct 2021
• Accepted
  05 Jan 2022