Family and therapist perception of child evolution in an interdisciplinary approach on early intervention

ABSTRACT

Purpose:

to analyze and to compare parents and therapists perceptions regarding of early intervention effects in developing of their children, as well as child's development and future outlook.

Methods:

this research studied nine individuals from Early Intervention Clinic. Parents and responsible were interviewed. They were recorded and literately transcribed. The information was analyzed qualitatively and confronted considering the following child development aspects: linguistic, motor, social and psychic.

Results:

seven out of nine individuals analyzed showed similar parental and therapeutic perception concerning the development characteristics analyzed. In two cases, there was disagreement between family members and therapists regarding children development, when family members expressed different expectations from the therapists about the future of their child. Regarding communication advances, all parents and therapist realized improvements.

Conclusions:

the perception of therapists and parents demonstrated positive effects of interdisciplinary early intervention as manifested in the concordance between therapists and parents views in seven out of nine individuals analyzed. This study also reinforced the importance of conducting a qualified monitoring of family difficulties regarding to limitation of their children and guide them appropriately depending on the disease or disorder presented.

Keywords:
Child Development; Early Intervention (Education); Child Language

RESUMO

Objetivo:

analisar e comparar a percepção dos pais e dos terapeutas referente aos efeitos da intervenção precoce no desenvolvimento de seus filhos, bem como acerca da evolução da criança e perspectivas futuras.

Métodos:

participaram deste estudo nove sujeitos, incluídos na clínica de Intervenção Precoce. Para a coleta dos dados realizaram-se entrevistas com os pais e/ou responsáveis pelas crianças e com os terapeutas de referência, as quais foram gravadas em áudio e transcritas literalmente. As informações foram analisadas qualitativamente e confrontadas, considerando os aspectos do desenvolvimento linguístico, motor, social e psíquico das crianças.

Resultados:

dos nove sujeitos analisados, sete apresentaram percepção parental e terapêutica semelhante para as questões do desenvolvimento abordadas e em dois casos houve divergência entre a visão dos familiares e dos terapeutas acerca do desenvolvimento das crianças, em que os familiares demonstram expectativas muito distintas das dos terapeutas quanto ao futuro dos filhos. Em relação à comunicação, todos os pais percebem avanços como as terapeutas.

Conclusão:

a percepção das terapeutas e pais demonstrou efeitos positivos da intervenção precoce interdisciplinar, manifestada na concordância de pontos de vista em relação aos sete dos nove sujeitos analisados. O estudo reforçou, ainda, a importância de se realizar a escuta qualificada das dificuldades da família quanto à limitação de seus filhos e orientá-las adequadamente a depender da patologia e/ou distúrbio apresentado.

Descritores:
Desenvolvimento Infantil; Intervenção Precoce (Educação); Linguagem Infantil

Introduction

For many years, the hypotheses of language acquisition, motor and cognitive development, and psychic constitution of babies were the main focus on the theoretical discussion involved with early development and had as a central unit of analysis the behaviors of babies. Currently, there is clarity about the importance of baby's relationship with those who exercise the parental function, considering that development is a process of constitution in which the biological and the psychic are dependent in a complex relationship between baby and their environment^1),(2.

Therefore, one can imagine that a desired baby and a mother with mental health are constituted in a dyad very early, offering field for their development. However, when the baby is born with any evident biological limit such as syndromes or neurological damage, or present evident language disorders without an evident lesion, as the Specific Language Impairment (SLI), characterized by several studies^3),(4, the imagery that the family has on child while good speaker may rupture and endanger also the parental bond with baby. Some studies show that this rupture in the parental bond with baby may have effects on the mother-child dialogue that turn out hamper the child insertion into routines in which dialogue allows exposure to language ⁵.

It is known that babies with syndromes or evident neurological lesions are diagnosed early, but individuals with language specific disorders may have access to speech therapy only at the end of the second year of life when they are not talking ³. Therefore, the parent-baby relationship may be compromised and psychosocial difficulties may be added to the biological limits of the baby during their development. Furthermore, some research on development risk factors^6)-(9) show that psychosocial and socio-demographic may predispose to the onset of developmental disorders ^6),(7),(9) , among which, the language is frequent factor, since babies with psychic and /or developing risk have lower initial speech production than babies without this risk⁹⁾ , besides important qualitative language difficulties in the first two years of life ^3),(10. Therefore, it is fundamental detect any risk or abnormal development and be offered family support as well as early intervention, considering both the brain plasticity as minimize the effects of the condition that the baby presented at parent-infant relationship^10)-(13) .

In this context, early intervention is an important provision of health care, as it can both prevent the pathology installation, as to minimize secondary effects as the psychopathology establishment in cases of syndromes or organic damage such as Down Syndrome or Encephalopathy Not Progressive Motor, by type of support that is provided to parents to exercise their functions with this son who is different from the imagined¹⁴. However, is necessary be especially careful regarding to the modality of attendance these babies and their families, once that it works with the psychic constitution during the first years of life¹³⁾ . Such attendance should not be disciplinary and multiple, it may endanger the performance of parenting functions when the family is without a professional reference.

It is known that simultaneous introduction of different professionals may generate a dissociative effect on the parental function exercise, damaging the baby development. For that reason, the arrangements for Interdisciplinary and Single Therapist were inserted in the clinical practice for care infants and children¹³. The Interdiscipline is configured as creation of a common space in which knowledge is not limited to professional identity of the therapist who serves, it is necessary that the therapist has a broader knowledge of predicted in their discipline to children's development, in another words, a speech pathologist need to have in addition to the knowledge of the language, swallow and hearing commonly respondents in early intervention cases, a minimum knowledge of cognitive and psycho-affective development, in general studied by psychologists, and psychomotor aspects, these deeper by physiotherapists and occupational therapists. This knowledge shared on an interdisciplinary view allow to happen in many cases, a single therapist approach that corresponds to the action of an expert on early intervention, with specific training in child development and not with partial knowledge of a discipline on it. Also, should prioritize the presence of parents, which is signified by the therapist, so that they can perform their parental functions so crucial for babies ^10),(13. On the program in which it operates this research, the family inclusion strategies are created in the therapeutic process, such as parents-baby set sessions and the possibility of psychological support to parents. In the set session articulate scenes that range during the session, namely: parent-therapist; baby-parent; baby-therapist and baby-parent-therapist ¹³. In the moments when the scene is parent-therapist, there are many aspects of parents' perceptions of the development of their children, or even doubts about the therapeutic process ¹³. In case of children older than three years, depending on their clinical status, the intervention with the child in individual session and continued interviews with parents can be the most appropriate intervention^15),(16. However, this space is not always enough to access the parents' perception; covered more thoroughly, for this reason the operating group of parents and continued interview are involved strategies. The evolutionary perception that the therapist has to each baby, in addition to being comparative to own baby, is related to their sample, in another words, the therapist tends to compare to the performance of similar cases treated, even if it adopts a singular perspective intervention ^10),(13, which may require new intervention devices to work with parents and supervision of therapists. Thus, the goals of this study are to analyze and compare the parents and therapists perceptions about the early intervention effects in developing of their children, as well as, their perceptions regarding the children evolution and future perspectives.

Methods

This study was approved by the Research Ethics Committee of the Federal University of Santa Maria (CEP / UFSM) under the protocol number 0284.0.243.000-09 and used the mandatory ethical standards for research involving human (Resolution 196 / 96 of the National Health Council - CNS). All subjects in the study were informed about the goals and procedures and, after reading the Informed Consent and Informed (IC), have signed even though according to this research and the dissemination of its results while maintaining anonymity of the participants. The research was developed at Speech Therapy Service (SAF), from the home institution. This study is part of the research project entitled "Parental Roles and Risk Factors for Language Acquisition: speech therapy interventions." The study was consisted of nine children aged 2 years and 1 month and 4 years and 7 months, three girls and six boys, with language disorders associated or not with developmental disorders, and who were in therapy for a minimum of six months in the early intervention program or in the language therapy at internship clinical. The therapy may or not be unique to the program. Some cases presented therapy in single therapist modality and others cases presented concomitant therapies at other institutions, particularly the cases of non-progressive chronic encephalopathy (NPCE), commonly identified as cerebral palsy, with physiotherapy intervention. In the case of single therapist, there was a support of the interdisciplinary team in order to sustain the necessary knowledge in each case. The single therapists in language disorder cases were speech language pathologist, physiotherapists for cases of NPCE and occupational therapists for Down Syndrome (DS) cases. The frequency of sessions within the program was twice a week, as well as, the sessions provided outside the institution, in physiotherapy, with this the possibility of a higher frequency in some cases. The group meetings to anchor the interconsultation occurred every two weeks. Also, there was weekly supervision of the case by Professional speech language pathologist and occupational therapy.

To collect the data, semi-structured (with attached script) interviews were conducted, with those responsible for children, as well as with reference therapists in order to identify the perception of the case and their evolution, and compare with the initial parental perceptions. Also, diagnosis issues and future perspectives envisioned by parents or their substitutes were discussed. Therefore, the aspects that guide the questions were if the parents has clarity about the biological son limits and / or psychic, the acceptance level of difficulty and the relationship between the imagined and the real son, as well as how the therapy mode there was or there was not given support to dealing with challenges that were emerging in the relationship with child.

The interviews were conducted and recorded on audio for later analysis. Posteriorly, the recordings were literally transcribed. The data were analyzed qualitatively through analysis content¹⁷⁾ in order to confront the parents and / or guardians and therapists perceptions, considering the evolutionary aspects of language development, motor, social and psychic of the child. For this purpose, the interviews were read and reread countless times, trying to identify the themes that emerged from the parental discourse.

One of the interviews focus was about the progress in the development and care provided to children by family members. Therefore, the interviews were conducted after a minimum of six months of treatment and focusing on feelings and parental perceptions of the child evolution, not necessarily in their therapeutic methodology perceptions. The interviews conducted in this study were confronted with initial interviews answers conducted by the therapist's case, when early intervention began. Such confrontation was possible because there were initial interviews investigated aspects in the script of this research.

Results

Figure 1 presents general aspects of identification, clinical and therapeutic history of the nine subjects in the study.

Figure 1:
Identification, clinical and therapeutic history

All subjects present language impairment, S8 and S9 presented maternal deprivation. Regarding to S8, the mother died when he was three years old, generating such deprivation. Also, prior this trauma, the family report suggests difficulties for the mother to waive emotional care to the child. About S9, the mother cannot perform her function, which leads to important psychic risk. Another fact to be noted in Figure 1 is that despite the indication for initial therapy program with single therapist, the family resorted occasionally to other therapies by medical indication. This is a city reality which the program has to deal with, because many times ethical confront emerge by the therapeutic approach which indicates the family needs choice as in the S4 case.

Figure 2 are analyzed the history of pregnancy and delivery, as well as the clinical status and family feelings by receiving the diagnosis.

Figure 2:
History pregnancy, childbirth and family feelings by receiving a diagnosis

In previous reports is interesting to note that, except for S9 case, all mothers felt distressed by the diagnosis and, in some cases as S1, even denied it. Only S8 grandmother was relieved with language impairment diagnosed and psychic risk, because doctors had autism suspected, unlike the EI team. Also, is curious to note that S5 and S7 whose children have been diagnosed with less gravity (restricted to language expression) are presented very anxious for the suppression of the children difficulty. The exacerbated anxiety presented in S3 is related with syndrome rarity, and cannot assimilate as would be the son`s development from such genetic confirmation. The diagnostic effect in the S5 case was worse than S7, because the first one does not realize the son's difficulty in all its extension as S7. It is noticed that the reaction of these two mothers differs from the S2's mother, whose knowledge of the Down Syndrom, presented by her daughter, brought relief because it is a known pathology.

Figure 3:
Family perception of the development

Figure 4 presents the therapists perceptions on the progress of cases.

Figure 4:
Therapists Perception on development

When confronting the families responses (Figure 3) with the therapists (Figure 4) about the children evolution in aspects of language development, motor, social and psychological, it is clear that in regard to communication and general aspects of behavior, all mothers recognize the children evolutions, especially in terms of comprehension and oral expression, and refer desire and possibilities for the child participation in the family daily activities. This perception corresponds with therapists' perception, except in S1, when the dysphagia discussion presented difficulties in acceptance daughter`s deficiency and said that not realize evolution in her daughter, because, at the time, their expectation was that she walked and speak. Such aspect becomes evident in the daughter future perception, exposed in Figure 3, in which the goal for the child is too difficult to perform, once running is an unrealistic expectation for a tetraplegia child. In this sense, it is also interesting to note that the S5 expectation is that his son sings and S7 that be a good speaker, just focusing on aspects whose base is currently deficient: speech. Also the S6 case draws attention, which the family believes that this is only the blindness and in the other aspects will be a child with normal development. Still on the future expectations, S2 realizes her daughter from the comparison with other children with Down Syndrome, older than S2 and have a worse development than her. Realizes that she has potential and accepts that will not necessarily academic. The same is seen in S3 and S4, which relate know the academic impossibility of their children, but believe they can always progress. Already the S8's grandmother seems to realize that the boy's difficulty lies in the subjective and inter-subjective areas, which creates a greater expectation to child engage well in different social environments.

About the effects of early intervention in the family environment and child, some mothers identify the therapist entrance, be a speech therapist or other reference professional, as a milestone in the child development and important as support for the family, both in general aspects of development, and specifically regarding communication (S1, S2, S3, S6, S7, S8). Interestingly, S4, S5 and S9 not cite familiar effect in particular, especially S5 and S9, which are cases where mothers do not seem to realize their difficulties in interacting with sons. While S5 has difficulty to let her son grows and become independent, S9 presents contrary difficulty, in caring the child and realize their necessity.

The S4's mother presented questions about the effects of EI with ludic focus, such as the program, according on the neurologist indication by behavioral therapy, which could not be in the session with her daughter. Gave up this because the child cried a lot during that intervention and she realized that the program approach include her in the process, unlike behavioral approach. Although the EI was not directly cited, she affirms perceive constant evolution in her daughter. The same is noticeable in S5 and S9.

Discussion

In the present study was observed concordance between parental and therapist perceptions about the children evolution aspects in the language, motor, social and psychic development in all cases, but not in completely mode in S1, where there is maternal denial about the daughter disability, which also emerges in M6's discourse on S6 where the psychic difficulty is not realized by the family. According to some studies, the main reactions expressed by parents against the child's disability diagnostic pass with shock at the news, followed by denial and feelings of guilt, sadness, anger and anxiety about the baby until it reaches the equilibrium stage and acceptance ^18).(19. It was observed that in S5 and S7 anxiety is the most evident symptom. Mothers of S5 and S9 do not realize their difficulties in interacting with their children, for opposite behaviors. While the excessive attachment S5, S9 for lack thereof. In the S5 case, there was a common situation in the language clinic disorders, the absence of the paternal function, common element in reports cases in the literature ^20),(21.

Some authors affirm that pregnancy is configured as an important step on the woman's identity structuring process and the representations that this builds on their child. Throughout this process, the suspicion or confirmation of the physical and mental integrity of the future child can become an obstacle to the establishment of the dynamic mother-baby ^22),(23, once the family experiences feeling the loss of their desired and idealized son, leading to an existential and emotional conflict that requires them to review all the dreams and expectations for the child. This initial difficulty, however small, increases over time and can be cured or permanently installed depending on the family conduct adopted before this reality and the significance that this event will have for each ^24),(25.

Therefore, it becomes paramount importance, the way in which parents explain the difficulty / limitation of their children, in another words, the way they understand the significance of the problem once that according to overcome the deficiency, create expectations, both positive and negative, ranging from the full development of the child to complete incredulity regarding the child's situation. From this perspective, is interesting the S7 case, in which the mother associates the son's communication difficulties, verbal dyspraxia, with one episode of burn. It is known that this kind of explanation attributed by the mother, who has no basis in scientific knowledge, presents her hypothesis based on concepts of popular culture, since they need a concrete explanation that satisfies specific association ²⁶. It is interesting that this type of explanation related to trauma, throws into question something external, almost magical that focuses on the child, which seems to play a role in eliminating any genetic biological cause or psych - environmental therefore exempt family of any responsibility or blame for the child's disorder. In regard to children with syndromes and evident physical disabilities / sensory, such as S1, S3, S4 and S6, several studies claim the difficulty of dealing with the presence of a biological limit ^27),(28, even leading to false beliefs about the son evolution ²⁸, which is evident in S1 and S6, which correspond to two of the most biologically compromised children of the sample. These results brings question about the ethical difficulties that early demand clinic, once that dealing with expectations that will not happen is presented as a common challenge in the EI clinic, with which the therapist must deal very cautiously, which is in the way between not reinforce false expectations and at the same time, support investment in the potential shown by the child in day-to-day in their interactions. In addition, the family grieving process is continued and devices such as the interview continued seem to be an important space to talk about the difficulties arising out the limits in the child development^15),(16).

Another aspect that is highlighted in the results is that although the research group in which it is inserted, the data collection seeks an interdisciplinary approach and a single therapist strategy, emerge demands for multiple professionals, arising from the difficulty of medicine professionals to understand the importance of psychological factors in family to care the baby. The pressure suffered by the S4's mother, by the neurologist medical, to make a behavioral approach with her daughter without the mother's presence in session and with multiple therapists, demonstrates a lack of understanding of the importance of symbolic register to the legality of child acquisitions. . In this sense, it is worth noting the Cunha ²⁸ and Cauduro²⁹ work about the importance of parental care in the neuroscience context. While the first author explains the basic principles of brain growth in development in connection with the care, the second affirms the importance of care from a rapprochement between Winnicott and neuroscience. Both studies allow supposing that the intervention that considers the infant-caregiver interaction is much more effective in terms of brain registration, once that focuses on the fundamental limbic system memory, and maturing in the first year of life. This system, together with the subcortical and cerebellar structures, will form the basis for the cortical maturation in the second year of life in children with normal development, in another words, a consolidated affective relationship is necessary for purely instrumental interventions can make sense in children's lives and their families. For this research`s children, although the chronological age is greater than the second year of life in all cases, including those with significant neurological limitations (S1, S3, S4, and S6) it is evident that early intervention also focuses on the relationship that underlies the cortical acquisitions in progress, or even about the possible limits to both. It should be noted, among limits, access a fluent verbal expression, which may be impossible in some cases (S1, S3, S4), which may depend on alternative forms of communication.

Conclusion

Considering the proposed initial analysis regarding the comparison of parental and therapists perceptions on the effects of early intervention in the development of their children and care to them, the study showed correlation between parental and therapeutic insights about the evolution aspects of development language and motor in all cases. In social terms and psychic of children, in two cases there was no agreement because the family shows poor perception of the present and difficult expectations to perform in the future of children.

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Publication Dates

• Publication in this collection
  Jan-Feb 2016

History

• Received
  22 Jan 2015
• Accepted
  16 Oct 2015