FAMILY BURDEN AND CHILDREN WITH AUTISM SPECTRUM DISORDERS : PERSPECTIVE OF CAREGIVERS Sobrecarga familiar e crianças com transtornos do espectro do autismo : perspectiva dos cuidadores

(1) Departamento de Fonoaudiologia da Universidade Estadual Paulista Júlio de Mesquita Filho, Marília, São Paulo, Brasil. (2) Universidade Estadual Paulista Júlio de Mesquita Filho, Marília, São Paulo, Brasil. (3) Prefeitura Municipal de Pompéia, Pompéia, São Paulo, Brasil. (4) Instituto de Psicologia da Universidade de São Paulo, São Paulo, São Paulo, Brasil. Conflict of interest: non-existent Some authors consider that changes in family structure, such as the increased participation of women in the labor market and the increase in divorce rates, bring more difficulties concerning caring demands for people with severe chronic diseases 3. In this context, the literature highlights the autism spectrum disorders (ASD) as childhood developmental disorders which can cause intense stress on caregivers, especially mothers, who may present as one of its consequences, the development of maternal depression , which can negatively affect both, the mother and the child4. ASD can be described as conditions with varying severity levels and symptomatologies, characterized by social interaction and communication disorders and the presence of restricted interests and stereotyped and repetitive behaviors5. Researchers reported that the development impairment, presented by children with autism spectrum disorders, may have several implications for the family dynamics6-9, from the physical and mental burden arising from daily life assignments8,9, high  INTRODUCTION


INTRODUCTION
Burden on caregivers concerning people with chronic diseases is described as a disorder resulting from dealing with physical dependence and mental incapacity of the person, in need of attention and care 1 .By assuming the role of guardian or caregiver, responsible for the welfare and care of a dependent family member, the caregiver is subjected to stressor agents, as well as feeling satisfaction and wellness for helping the person 2 .be responsible for the child with autism spectrum disorders or language disorders, playing the role of main caregiver.The description of the characteristics of the participants are shown in Table 1.
The ages of children and pre-adolescents ranged from three to ten years (mean = 5.8) and should be attending speech therapy twice a week for at least three months and maximum two years, in therapeutic process of the same clinic-school, in a midsize city of São Paulo state.The diagnoses of children with autism spectrum disorders were established by a psychiatrist, according to specific criteria 4,19 .Children with language disorders underwent speech evaluation in the clinic-school and their families were selected matching age, sex and education of children.
To collect data about the subjects in this study, a questionnaire was elaborated specifically for this research.Data relating to children comprised age, gender, education, medical diagnosis and length of speech therapy.Regarding the caregivers, data comprised age, gender, relationship, number of children, marital status, education, occupation and family income, calculated on minimum wages.
For assessing the burden of family caregivers, the Brazilian version of the Scale Burden Interview 20 , which verifies the burden on caregivers who take care of people with mental and physical disabilities, was employed.The scale includes 22 questions that cover the areas of health, social and individual life, financial status, emotional stability and interpersonal relationships.
For the application of the scale of caregiver burden, interviews were conducted in groups with caregivers in the clinic-school, during hours of speech therapy for children.The examiner first explained the purpose of the questionnaire and caregivers who wished to participate signed a consent form.Afterwards, instructions were given, concerning completion of burden questionnaires and characterization of participants.The instruction states that the questionnaire is a list of statements that reflected how people felt when they took care of another person.After each statement, the participant should indicate how often he/she felt that way: never, rarely, sometimes, often, or always in questions 1-21 and: even a little, a little, moderately, very or extremely, in question 22, and there are no right or wrong answers.levels of stress and low levels of quality of life for the family members 10 , to the possibility of developing adaptability and resilience 7 .Changes are reported in daily activities and psychological functioning of its members, heavy workloads and specific demands 11 .These aspects may interfere in aspects referring to family, work, social and personal life and may predispose the caregiver to conflicts 12,13 .
In order to provide health care for the child, more interaction with the family and life story of the child is necessary 14 .Assessment of the caregiver burden, according to his/her own perception, contributes to the analysis about the real impact, which this condition determines in their lives, and constitutes an important factor in promoting health and wellness 15 , therefore, health and education professionals should give special attention.
Tasks assigned to the caregiver, often without proper guidance and support from the institutions which attend the family member under care, impact on their quality of life 16 .Thus, understanding the interactions of family members with the disease, allows the professionals to realize that family caregivers also need care and help, guidelines and strategies for stress relief.Thus, they may have better living conditions and hence may provide better care to the sick family member 17 .The performance along with such issues, constitues a challenge for health and education professionals, which demands intersectorial attention 18 for promoting overall health of families and communities 14 .According to this perspective, this study aimed to assess the burden of family caregivers of children with autism spectrum disorders, according to the report of caregivers.

METHODS
This is a cross-sectional study, approved by the Ethics Committee of the Faculty of Philosophy and Sciences, São Paulo State University, Campus of Marília, Protocol n ° 2048/2009.All participants were asked about their agreement to participate in the study and signed an informed consent.
A total of 20 families were evaluated; ten family members of children with autism spectrum disorders (G1), aged between 22 and 65 years (mean = 32.6).To compose the control group, ten family members of children with language disorders (G2) participated.Inclusion criteria for family members were: to be literate; have a degree of kinship; live and scored and the final score, which can range from 0 (lowest overhead) to 88 (more overhead), was obtained from the total sum of all responses, ranging from 0-88.The higher the final score, the greater the caregiver burden, as follows: <than 21 -no burden; 21-40 -moderate burden; 41-60 -ranging from moderate to severe and> or equal to 61 -severe burden.
In analyzing the data, each individual was scored at first.For this, the responses of each subject were scored on a scale ranging from 0 to 4, according to the presence or intensity response.Issues relating to items 1-22 were scored as: 0 -never; 1 -rarely; 2 -sometimes; 3 -often; 4 -always; and item 22 as: 0 -not a bit; 1, a little; 2 -moderately; 3 -and 4 very -extremely, this last question assesses the intensity of the caregiver burden.All questions were

INSTRUCTIONS:
The following questionnaire is a list of statements which demonstrate how people sometimes feel when taking care of other people.After each statement, indicate how often he/she feels that way: never = 0; rarely = 1; sometimes = 2; frequently = 3; always = 4.There are no right or wrong answers. 20atistical analyses of the data, employing Mann Whitney Test was realized in order to check if there was a significant difference between both groups surveyed.In order to check the degrees of relationship between variables: education, minimum wage, age of children and length of therapy with the burden value, the Spearman Correlation Test was employed.The adopted significance level was 5% (p <0.05) for the statistical tests.

Figure 1 -Brazilian version of the Scale of Caregiver Overload -. (Burden Interview-BI)
was no significant difference when comparing the burden rates of G1 with G2 (Table 2).Table 3 presents the results for the degree of relationship between the burden of G1 and G2 and the variables: education, minimum wage, age of children and length of therapy .
As it can be observed in Table 3, the analysis of correlations between the burden of family and schooling variables: minimum wages, age of children and length of therapy showed statistically significant results.

RESULTS
Table 2 shows the mean and the standard deviation of the scores obtained from the Burden Interview Scale of caregiver.In addition, Table 1 shows the results for the comparative analysis of G1 and G2.
G1 and G2 had score 28, indicating moderate burden.The comparison between the individuals in the different groups (G1 and G2) was performed using the Mann-Whitney test.It was found that there

DISCUSSION
The results observed in this study made it possible to analyze aspects of the burden for families of children with autism spectrum disorders and children with language disorders who received speech therapy in a clinic-school.These data illustrate how the family members of this study reported their feelings, when caring for kids with autism spectrum disorders, and constitute an important element for planning interventions targeting children with autism spectrum disorders and their families.
Regarding the participants, it was observed that the majority (85%) of caregivers responsible to take care of children were females 12 and 80% were mothers; only two of them were fathers and one grandfather, corroborating data from other studies 21,22 .Concerning the occupation of mothers, 40% worked out and the remaining (40%) worked as teachers maids and industry workers.In another study, the authors found that mothers of autistic children had difficulty in pursuing their professional careers, due to excessive time demand for caring the child 23 .
The aspects investigated relate to implications for the personal life of family members, satisfaction with caring demands and financial burden, related to the child.From these findings it was found that the average rate of caregiver burden in both groups was the same, score 28, therefore, they were moderately overloaded.These findings corroborate descriptions of the literature on impairments in quality of life of families of children with disorders of the autism spectrum disorders 10,24 .The consequences and limitations on personal life of the caregiver comprises many situations, which may cause changes and impact on personal life, such as reduced time available, affected health, and also the necessity of changing many habits, in order to support the needs of the children 12 .
When comparison G1 and G2, data show that the burden for families caring for children with autism spectrum disorders is similar to the burden for families of children with other chronic developmental disorders, such as occurs in some cases of language alterations.Furthermore, in this study, correlations between the burden of family and schooling variables, minimum wages, age of children and length of therapy were not statistically significant.These results are consistent with the statements of other authors who observed significant difference in family burden, due to the type of diagnosis of chronic patients with other psychiatric and behavioral disorders 25 .On the other hand, some authors have described significant differences concerning the burden upon families of people with different chronic diagnoses and correlations between sociodemographic variables of the family members 26 .In this research, the sample size may have influenced the non-significant difference, in relation to sociodemographic variables.Moreover, specifically in cases investigated, the support offered by the speech therapy could have mitigated such differences, so, additional studies are necessary.
In the present study, the fact that both groups had a moderate burden index, may be related to social support which helps coping strategies and can positively influence the perception of burden 27 , since caregivers studied here attend an orientation group every week, for parents of the clinic-school where children receive care.
of longitudinal studies and analyzes which compare data from families of children with autism spectrum disorders and data from families of children without any development complaints.

CONCLUSION
The observed results showed no difference in mean index of burden for family caregivers of children with ASD and children with language disorders.Also, the data showed that both groups were moderately overloaded.Thus, the findings of this study suggest that caring for children with autism spectrum disorders can overwhelm their family members, similarly to families of children with other developmental disorders.
Finally, it is emphasized that acknowledging the factors which influence the burden of caregivers, constitutes another factor to be added into the care planning and intervention and can assist in developing strategies for guidance and assistance to patients and their caregivers.
As observed by other authors 28 , it is important to consider the possibility that this study may have been influenced by the fact that the interviewed respondents felt some kind of apprehension or were even embarrassed to answer honestly about their relationship in reference to the task of caring for children with language and autism spectrum disorders.In addition, other variables may be related to the quality of life of participants in this study, as the intensity of behavioral problems presented by the child 8,29 , the support of other family members 29 and professionals, offered to the children and their families 6-8,10,29,30.Another aspect shows that the instrument used in this study proved to be effective in raising important data on the burden of children caregivers with autism spectrum disorders and language disorders.However, it should be considered the relevance of other studies with a higher amount of participants, in order to confirm whether or not there statistically significant differences between the populations studied.It is suggest the development RESUMO Objetivo: avaliar a sobrecarga de familiares cuidadores de crianças com transtornos do espectro do autismo, segundo a percepção dos próprios cuidadores.Métodos: participaram 20 sujeitos, de ambos os gêneros, com idades entre 22 e 60 anos (Média= 32,6), sendo dez familiares de crianças com transtornos do espectro do autismo e para compor o grupo controle dez familiares de crianças com transtornos de linguagem.As crianças apresentavam entre três e dez anos de idade (Média= 5,8).O grupo controle foi selecionado a partir do pareamento de idade, escolaridade e gênero das crianças.Todas as crianças encontravam-se em atendimento fonoaudiológico.Para avaliar a sobrecarga dos cuidadores foi utilizada a Escala Burden Interview e foram coletados dados sociodemográficos dos participantes.A análise estatística dos dados foi realizada a partir do teste de Mann-Whitney e da análise da Correlação Spearman (p< 0,05).Resultados: a média do índice de sobrecarga do familiar cuidador de ambos os grupos foi 28, portanto, não foi observada diferença estaticamente significante e indicou que os G1 e G2 estavam moderadamente sobrecarregados.As características dos participantes também não foram significantes no índice de sobrecarga.Conclusão: cuidar de crianças com transtornos do espectro do autismo pode sobrecarregar seus familiares de modo semelhante ao de familiares de crianças com outros transtornos do desenvolvimento.DESCRITORES: Autismo; Criança; Família; Qualidade de vida; Fonoaudiologia