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Revista Brasileira de Educação Especial

Print version ISSN 1413-6538On-line version ISSN 1980-5470

Rev. bras. educ. espec. vol.24 no.2 Bauru Apr./June. 2018

http://dx.doi.org/10.1590/s1413-65382418000200004 

Research Report

Children with Physical Disability, Down Syndrome and Autism: Comparison of Family Characteristics in the Maternal Perspective in Brazilian Reality2

Cariza de Cássia SPINAZOLA3 

Fabiana CIA4 

Tássia Lopes de AZEVEDO5 

Danielli Silva GUALDA6 

3PhD student at the Graduate Program in Special Education - PPGEEs, Federal University of São Carlos UFSCar, São Carlos - SP, Brazil. carizaspinazola@gmail.com.

4Professor at the Department of Psychology, Federal University of São Carlos - UFSCar, São Carlos - SP, Brazil. fabianacia@ufscar.br.

5PhD student in the Graduate Program in Special Education - PPGEEs, Federal University of São Carlos - UFSCar, São Carlos - SP, Brazil. tassia_to@hotmail.com.

6PhD student in the Graduate Program in Special Education - PPGEEs, Federal University of São Carlos - UFSCar, São Carlos - SP, Brazil. dany_gualda@yahoo.com.br.


ABSTRACT:

This study aimed to identify and compare the family needs and social support of families of children with physical disability, Down Syndrome and Autism from the perspective of the mothers. A total of 60 mothers of children with disability ranging from 7 months to 6 years of age participated and were divided into three groups: G1 (PD) consisting of 20 mothers of children with physical disability, G2 (DS) consisting of 20 mothers of children with Down Syndrome and G3 (A) made up of 20 mothers of children with Autism. Data collection took place in the mothers’ homes and/or on the premises of a university. The instruments used for evaluative measures were: the Family Needs Questionnaire (FNQ) and the Social Support Questionnaire (SSQ). Data analysis was performed by the mean and standard deviation. A t-test was performed to compare the groups. As for results, related to the needs, significant statistical differences were identified, as follows: G1 presented significant differences in relation to G2 and G3 with regard to financial needs. G2 in relation to the needs of support and functioning of family life and G3 with regard to explaining the situation of the child and child development. Regarding social support, G2 presented a greater number of supportive people, followed by G3 and G1, but G1 was more satisfied with the type of support received. It was concluded that the study may contribute to the knowledge of the main needs and support that families of children with different disabilities have.

KEYWORDS: Special education; Disability; Family; Mothers

RESUMO:

O presente estudo teve por objetivo identificar e comparar as necessidades familiares e o suporte social das famílias de crianças com deficiência física, síndrome de Down e autismo, na perspectiva das mães. Participaram da pesquisa 60 mães de crianças com deficiência na faixa etária de 7 meses a 6 anos de idade, que foram divididas em três grupos: G1(DF) formado por 20 mães de crianças com deficiência física, G2(SD) formado por 20 mães de crianças com síndrome de Down e G3(A), com 20 mães de crianças com autismo. A coleta de dados ocorreu nas residências das mães e/ou nas dependências de uma universidade. Os instrumentos utilizados como medidas avaliativas foram: o Questionário de necessidades familiares (QNF) e o Questionário de suporte social (QSS). A análise dos dados foi por meio de média e de desvio padrão. Para comparação dos grupos, foi realizado teste-t. Como resultados, relacionado às necessidades, identificaram-se diferenças estatisticamente significativas, como, por exemplo, o G1 apresentou diferenças significativas em relação ao G2 e G3 nas necessidades financeiras. O G2 frente às necessidades de apoio e de funcionamento da vida familiar, e G3 no que diz respeito a explicar a situação do filho e do desenvolvimento do filho. Com relação ao suporte social, o G2 apresentou maior número de pessoas suportivas, seguido do G3 e G1, porém o G1 mostrou-se mais satisfeito com o tipo de suporte recebido. Conclui-se que o estudo pode contribuir para conhecimento das principais necessidades e do suporte que as famílias de crianças com diferentes deficiências possuem.

Palavras-chave: Educação especial; Deficiência; Família; Mães

1 Introduction

The family, regardless of culture, composition, social class or historical period, consists of the first social group of which human beings are part and establish their contacts (Szymanski, 2011; Glat, 2012). It is through family relationships that children begin to understand the world around them, an aspect that favors their development and the construction of their identity (Glat, 2012). Thus, families become the main model for their children, because, at birth, the child finds a family environment instituted by his/her members (Szymanski, 2011).

When adults become parents, this role allows the transformation of identity, the desire for accompaniment, and the capacity to generate and care for the child, which is associated with the feeling of psychological gratification. In this period, parents restructure themselves for the arrival of the child, as well as the marital relationship and with relatives and community. In this context, the identity of parents and family organization begins a new cycle. However, the parental role and life cycle of these parents may be affected as a result of the characteristics of the child, and possibly an unexpected event may trigger dilemmas, challenges, emotions, and mixed feelings (Alexandre & Felizardo, 2009).

In this way, we highlight the importance that families represent in the development of the human being throughout life, mainly in relation to the proportion of care, stimuli, interactions and teachings. As this context undergoes several transformations, families of children with disabilities may need more support, due to the greater parental involvement required. Research conducted in the Brazilian context has produced data on family variables with respect to families of children with disabilities, as well as the importance of interventions in this theme (Santos, 2014; Spinazola, 2014; Azevedo, 2014; Cia, Gualda, & Christovam, 2015).

To Dunst (2000), helping behavior involves identifying family needs and priorities, as well as their style of functioning and social supports and resources. Thus, it is necessary to recognize the comprehensive and individual needs and also take into consideration that these are constantly changing. So it is important to help families find the resources that fit their lifestyle.

In this sense, Gualda, Borges and Cia’s study (2013) aimed to problematize what the resources and needs of families of children with disabilities actually were. Twelve parents of children with disabilities enrolled in preschool participated in this study, all of whom had medium to medium-low purchasing power. The Family Environment Resource Inventory (FER) and the Family Needs Questionnaire (FNQ) were used. The results revealed that the parents promoted a stimulating environment for their children, especially in regard to school tasks and through being concerned with attendance in the resource room and institution. Regarding family needs, the parents indicated higher indexes in the following items: (a) more information about the services and supports that the child may benefit from in the future, (b) have the support of qualified people who are able to talk about their child’s disability, (c) to be able to explain their child’s situation to friends, children, neighbors, (d) find social and educational services, (e) financial needs, and (f) have space or someone to talk with and find solutions. The studies developed by Azevedo (2014), Santos (2014) and Spinazola (2014) showed that families of children with disabilities at preschool age varied according to the needs and resources present in the family environment, depending on the age of the child. For each age group, it is assumed that families acquire new knowledge and need support and characteristic resources. These studies also problematized that, possibly, the type of disability that the child has an influence on the family environment beyond the age of the child. In these three studies, the majority of the samples consisted of parents, mothers or guardians of children with intellectual disability, physical disability or autism.

In most of the studies of families that worked with at least one of the variables of the present study, there was the prevalence of specific groups, for example, mothers of children with cerebral palsy (Almeida & Sampaio, 2007) and parents of children with intellectual disability (Barbosa, Pettengill, Farias, & Lemes, 2009). In Matsukura, Maturano, Oishi and Borasche’s study (2007) there is a comparison between groups of parents of children with disabilities and typical development. The studies of Spinazola (2014) and Santos (2014) compare different age groups, and the study of Gualda et al. (2013) describes the resources and needs of families of children with different disabilities. None of these studies compared family variables depending on the child’s disability.

Considering the importance of the family for child development and that the knowledge about it can support preventive interventions, the objectives of this research were to identify and compare the needs and the social support of families of children with physical disability, Down Syndrome and Autism from the perspective of the mothers.

2 Method

2.1 Participants

Sixty mothers of children with disabilities from zero to six years old, divided into three groups (G1, G2 and G3) participated in the research. G1 (PD) was formed by 20 mothers of children with physical disability; G2 (DS) consisted of 20 mothers of children with Down Syndrome and G3 (A) was made up of 20 mothers of children with Autism. In G1 (PD) the mean age of the mothers was 33.8 years old. Regarding the level of education, the predominance was graduation from High School (50%) and those graduated from Higher Education (25%). In relation to the children, the mean age was 3.68 years old. The diagnoses of the children were: cerebral palsy (60%), physical disability (20%), arthrogryposis (10%) and myelomeningocele (10%).

In G2 (DS), the mean age of the mothers was 36.1 years old. In relation to the schooling factor, the majority of the mothers of this group were graduated from High School (45%) and Elementary School (30%). The mean age of the children was 3.56 years old. The diagnoses of the children were all Down Syndrome. In G3 (A), the mean age of the mothers was 36.5 years old. The majority of the mothers of this group were graduated from High School (50%) and from Higher Education (25%). In this group, the mean age of the children was 4.72 years old and the diagnosis of all children was Autism. As for the schooling of the children, in the G1 (PD) and G2 (DS) groups, 35% of the children had early intervention. In G3 (A), half of the children attended only preschool.

When comparing the sociodemographic data between the three groups, it was verified that the age of the children presented significant statistical differences or a tendency towards significant statistical difference. The group of children with autism presented a higher age than the other groups (DS = t (38) = 2.02, p <0.05; PD = t (38) = 1.88, p <0.1). In the other sociodemographic data, there were no significant statistical differences between the groups.

2.2 Location of data collection

Data collection took place in the participants’ homes, in a public university, in public schools or in specialized educational institutions.

2.3 Ethical aspects

The present research was approved by the Federal University of São Carlos (UFSCar) Ethics Committee (CAAE: 44754115.2.0000.5504). The mothers received and signed the Free and Informed Consent Form for their participation.

2.4 Evaluation measures for mothers

Family Needs Questionnaire - FNQ - (Pereira, 1996) - It consists of 28 items, distributed in six topics: (a) information needs; (b) need for support; (c) to explain to others; (d) community services; (e) financial needs; (f) functioning of family life. The maximum total of the scale is 84. The answers of the questionnaire can be given between a scale of 1 to 3, being 1 (I do not need this type of aid); 2 (I am not sure whether I need this kind of aid) and 3 (I need this kind of aid).

Social Support Questionnaire - SSQ (translated and validated by Matsukura, Marturano, & Oishi, 2002) - This instrument was constructed to evaluate the social context in which the family is inserted. It consists of 27 questions regarding emotional support or instrumental support. Each question asks for two part answers and provides two scores. In the first part, it relates to the number of people that the respondent perceives as sources of social support, being able to list up to nine possibilities (or the ‘none’ option) and the score is called SSQ-N. In the second part, the individual reports on his/her satisfaction with this support, on a six-point scale, providing the SSQ-S score.

2.5 Data collection procedure

Data collection was conducted in several places, namely: municipal schools, three specialized institutions and a health school unit. First, the research was developed in 34 municipal schools and two specialized education institutions. Data from 15 participants were considered. The other data were collected in two locations. First of all, contact was established with the coordinator of a specialized care center, who authorized the research, providing a list of names and telephone numbers of the parents that fit the profile of the study, so that the researcher could contact them. Then, the researcher contacted a health unit and received a list of parents’ names and telephone numbers that fit the research profile from the people responsible for the early intervention projects. Invitations were also made personally to parents and/or mothers who were waiting for the children to be assisted in the unit.

All the data collections followed the same procedure, being carried out in the form of an interview to fill out the instruments. In order to separate the families into the three groups, the diagnoses of the children made available by the institutions and indicated by the parents in the interviews were considered.

2.6 Data analysis procedure

Through the instruments (Family Needs Questionnaire, Social Support Questionnaire) quantitative data were obtained, which were analyzed by using descriptive methods (measures of central tendency and dispersion). To compare the data of the families of children with physical disabilities, Down Syndrome and Autism, the t-test was used, considering the comparison of two groups separately (Cozby, 2006; Sampieri Collado, & Lucio, 2006). The significance level p <0.1 was used.

3 Results and discussion

3.1 Family needs

Table 1 compares the information needs7 of the mothers, between G1 (PD), G2 (DS) and G3 (A).

Table 1 Mothers' information needs: comparison between G1, G2 and G3 

Scale of information needs Mean SD Mean SD Mean SD
G1 (PD) G2 (DS) G3 (A)
I need more information about the services and supports my child may benefit from in the future. 2.80 0.52 2.65 0.74 2.95 0.22
I need more information about the services and supports that are currently more suitable for my child. 2.70 0.66 2.60 0.82 2.65 0.74
I need more information about how the child grows and develops. 2.40 0.94 2.65 0.74 2.90 0.30
I need more information on how to teach my child. 2.30 0.92 2.70 0.66 2.60 0.68
I need more information on how to deal with my child. 2.25 0.91 2.50 0.76 2.50 0.89
I need more information about my child's disability and specific needs. 2.15 0.99 1.65 0.74 2.40 0.94
I need more information on how to talk to my child. 1.80 0.95 2.30 0.80 2.35 0.93
Subscale total 2.04 0.53 2.25 0.48 2.26 0.48

Source: Elaborated by the authors.

In Table 1, information needs, regarding the comparison between the groups, it was identified that G1 (PD), compared to G2 (DS), showed a statistical higher mean tendency in relation to the need for information on the disability and the specificities of the child (t (35.3) = 1.80, p <0.1).

The data may indicate that due to the fact that children have physical disabilities, mothers needed more specific information regarding handling, positioning and adjustments with equipment. In Fujisawa, Tanaka, Camargo & Sasaki’s study (2009) the mothers of children with physical disabilities reported that they had to learn to deal with the wound care dressings and special care that the children demanded, especially after surgical procedures. In addition, it is believed that, as the child develops, such needs are altered, thinking of developmental stimuli, more specifically regarding autonomy and mobility, which may bring more concerns to parents.

G2 (DS), on the other hand, presented a higher statistical mean tendency than G1 (PD) in the following item: I need more information on how to talk to my child (t (39,9) = 1,79, p <0.1). Children with DS present an intellectual, language delay, and some speech difficulties, thus resulting in reduced vocabulary and difficulties in understanding (Bissoto, 2005). These characteristics require parental skills to maintain higher levels of interactions with the children, such as communicating in a way that children can understand. The use of simple and objective commands would be a strategy that could be given to parents (Millam, Spinazola, & Orlando, 2015).

G3 (A) presented a higher statistical mean (or with a higher statistical tendency), compared to G1 (PD) in the factors: (a) I need more information on how to talk to my child (t = (38) 84, p <0.1), and (b) I need more information on how the child grows and develops (t = (23.0) 2.26, p <0.05). Individuals with autism or Autism Spectrum Disorder (ASD) present difficulties in behavioral, interaction and communication standards (Desen & Braz, 2014). Therefore, it is hypothesized that, just like the mothers of children with DS, those with children with autism may also have greater needs to maintain standards of interactions, hence the need for how to talk to the child, as well as an increased need to know more about child development. Perhaps even for parents of children with physical disabilities and language impairment, also see the issues that permeate the physical development of their children as the greatest need.

G3 (A) presented a higher statistical mean, compared to G2 (DS) in factor: (a) need for more information about the services and supports that my child may benefit from in the future (t = (22.3) 1.76, p <0.1). G3 (A) is formed of mothers with slightly older children, which tends to indicate that the mothers have already begun to worry more about what the child will be able to do, especially when it comes to their schooling.

Table 2 compares the support needs of the mothers, between G1 (PD), G2 (DS) and G3 (A).

Table 2 Support needs of mothers: comparison between G1, G2 and G3 

Scale of support needs Mean SD Mean SD Mean SD
G1 (PD) G2 (DS) G3 (A)
I need more opportunities to meet and talk to the parents of other children with disabilities. 2.45 0.89 2.60 0.82 2.20 0.89
I need more time for myself. 2.40 0.94 2.65 0.74 2.40 0.88
I would like to meet regularly with a counselor (doctor, psychologist, social worker) with whom I could talk about the problems that my child's disability poses. 2.30 0.92 2.25 0.85 2.10 0.97
I need written information about the parents of the children who have the same problems as my child. 2.05 1.00 2.25 0.85 1.95 1.00
I need more time to talk to my child's teachers and therapists. 1.90 1.02 2.10 0.97 1.90 0.97
I need to have more friends to talk to. 1.85 0.99 2.20 0.95 1.65 0.87
I need to have someone from my family with whom I can talk more about the problems that my child's disability poses. 1.70 0.98 2.35 0.87 1.80 0.89
Subscale total 1.79 0.59 2.01 0.48 1.70 0.61

Source: Elaborated by the authors.

In Table 2, support needs, in the comparison between groups, G2 (DS) presented a higher statistical mean than G1 (PD), in the following item: I need someone from my family with whom I can talk more about the problems that my child’s disability poses (t (38) = 2.21, p <0.05).

When comparing G2 (DS) and G3 (A), G2 showed a significant statistical mean in the following items: (a) I need to have someone in my family with whom I can talk more about problems that my child’s disability poses (t = (38)1.96, p <0.1); (b) I need to have more friends to talk to (t = (38)1.90, p <0.1), and (c) in the total support subscale (t = (35.9)1.78, p <0.1).

The results may indicate that G2 (DS), compared to G1 (PD) and G3 (A), should be in need of increased support in several areas, which tends to increase the need for someone to talk to. Henn, Piccinni, and Garcias (2008) emphasize the importance of intervention and prevention programs for families of children with DS, especially in the first years of life. These data may also be related to the need for help in the functioning of family life (see Table 6). G2 (DS) is the group that most need help in relation to the need in this regard, especially in relation to mutual support among family members in difficult situations, which tends to increase the need for support, to have family people to talk to. Table 3 compares the need for help to explain to others about the child’s situation between G1 (PD), G2 (DS) and G3 (A).

Table 3 Needs to explain to others: comparison between G1, G2 and G3  

Scale of needs to explain to others Mean SD Mean SD Mean SD
G1 (PD) G2 (DS) G3 (A)
Factor 3 - To explain to others
I need help to know how to respond when friends, neighbors or strangers ask me questions about my child's situation. 1.90 1.02 1.25 0.64 1.75 0.97
I need help explaining my child's situation to other children. 1.80 1.00 2.00 0.97 2,05 1.00
I need more help on how to explain my child's situation to friends. 1.65 0.93 1.60 0.8 2.15 0.93
My husband needs help to better understand and accept our child's situation. 1.40 0.68 1.70 0.98 1.60 0.82
Subscale total 1.35 0.57 1.26 0.48 1.50 0.55

Source: Elaborated by the authors.

Table 4 Community service needs: comparison between G1, G2 and G3  

Scale of family community service needs Mean SD Mean SD Mean SD
G1 (PD) G2 (DS) G3 (A)
I need help finding a social and educational support service for my child. 2.20 1.00 2.40 0.82 2.05 0.94
I need help finding a service in case I need (rest, go to the movies, a party, etc.) someone to stay with my child for short periods, and to be able to take on that responsibility. 2.10 1.02 2.00 0.97 2.25 0.97
I need help finding a doctor who understands me and understands my child's needs. 2.10 1.02 1.70 0.98 2.20 0.95
Subscale total 1.64 0.55 1.50 0.58 1.71 0.59

Source: Elaborated by the authors.

Table 5 Financial needs: comparison between G1, G2 and G3  

Scale of financial needs Mean SD Mean SD Mean SD
G1 (PD) G2 (DS) G3 (A)
I need more help in the payment of expenses such as: food, medical care, transport, technical aids (wheelchair, hearing aid, Braille machine, etc.). 2.50 0.89 2.00 1.02 2.05 0.94
I need more help to obtain the material or special equipment that my child needs. 2.40 0.94 1.40 0.82 1.30 0.73
I need more help to pay for temporary placement services.1 2.00 1.02 1.95 1.00 2.00 1.02
I need more help to pay for expenses such as: therapists, special education institutions or other services my child needs. 1.90 1.02 1.85 0.99 2.20 0.95
Subscale total 1.82 0.57 1.43 0.58 1.51 0.56

Source: Elaborated by the authors.

1Services mentioned in the second item of Table 4.

Table 6 Family life functioning needs: comparison between G1, G2 and G3  

Scale of family life functioning needs Mean SD Mean SD Mean SD
G1 (PD) G2 (DS) G3 (A)
Our family needs help to discuss problems and find solutions. 1.45 0.82 1.85 0.99 1.80 0.95
Our family needs help to find ways, in difficult times, to support each other. 1.45 0.75 1.95 1.00 1.70 0.92
Our family needs help to decide who will do the housework, who will look after the children, and other family tasks. 1.15 0.49 1.45 0.82 1.25 0.64
Subscale total 1.09 0.50 1.42 0.67 1.30 0.59
Scale total 1.99 0.49 2.07 0.40 2.05 0.47

Source: Elaborated by the authors.

Note: The needs assessment ranged from 1 (I do not need this kind of aid); 2 (I'm not sure whether I need this kind of aid) and 3 (I need this kind of aid).

In Table 3, to explain to others, it was verified that G1 (PD), compared to G2 (DS), showed a higher statistical mean in the following item: I need help to know how to respond when friends, neighbors or strangers ask me questions about my child’s situation (t (31.8) = 2.41, p <0.05). In fact, many children with physical disabilities make use of special equipment or have apparent motor difficulties, which causes frequent questions about their disability and demands parents’ social skills to deal with such situations.

G3 (A) presented a higher statistical mean tendency in comparison to G1 (PD) regarding the need for more help on explaining the situation of the child to friends (t = (38) 1.69, p <0,1). This result may be indicative of the mothers’ concern to explain in a way that friends can understand the characteristic issues of Autism such as stereotyped behaviors and lack of social interaction. In a study conducted by Silva and Chaves (2014), the mothers revealed that they avoided going out with their children because of their behavior, this way they did not have to explain their children’s situation. At this point, we highlight the importance of professional help to these mothers in dealing with the behaviors of the children and increase of social skills to explain when requested. The research of Griffith, Hastings, Nash and Hill (2010), when comparing groups of mothers who had children with Down Syndrome, intellectual disability and Autism, revealed that mothers of children with Autism had a less positive view of their children and a higher level of stress. Lyons, Leon, Phelps and Dunleavy (2010) indicated that the degree of severity of the disability or disorders is a factor that impacts on parental stress. Such a variable was not investigated in the present study, but it may have influenced the results presented.

Table 4 compares aid needs in relation to community services between G1 (PD), G2 (DS) and G3 (A).

Regarding Table 4, community services, it was noted that there were no significant differences between the groups, but G1 (PD), G2 (DS) and G3 (A) presented needs of help to find a social and educational support service for the child and showed need of help to find a service in case they need (rest, go to the movies, a party, etc.) someone to stay with the child for short periods and is able to take on this responsibility. G1 (PD) and G3 (A) also revealed more need for help in finding a doctor who understands the mothers and their children.

The results point to the need to offer support to families. Messa et al. (2005) report that after the birth of children with disabilities, the predominant leisure activities in the family group were: visiting relatives, watching TV and listening to music, and there were few activities in socializing environments, mainly due to the children’s fragile health, restrictions on activities, lack of money and adequate places.

In general, the community service needs may point to the lack of adequate services for parents and children, which generates this increased demand for help in finding them. It is therefore perceived that, in order for these to be supplied, it is fundamental that answers are given in the macro-systemic context, such as public policies that subsidize families in guaranteeing services for all members (Bronfenbrenner, 2011).

Table 5 compares the financial needs of mothers between G1 (PD), G2 (DS) and G3 (A).

Regarding Table 5, financial needs, G1 (PD), compared to G2 (DS), presented a higher statistical mean for the following items: I need more help to obtain the special material or equipment my child needs (t (38) = 3.58, p <0.001) and total of financial needs subscale (t (38) = 2.14, p <0.05). Between G1 (PD) and G3 (A), it was observed that G1 (PD) presented a higher statistical mean than G3 (A) in the following items: I need help to obtain the material or equipment that my child needs (t= (35.8) 4.12, p <0.001) and in the total of financial subscale (t = (38) 1.73, p <0.05). These data show that, due to the needs of wheelchairs, walkers, orthoses and other materials and equipment, the families end up having an increase in financial expenses, since the public system still cannot manage all the demands related to these needs (Sá & Rabinovich, 2006; Fujisawa et al., 2009).

Table 6 compares support needs in the functioning of the mothers’ family life, between G1 (PD), G2 (DS) and G3 (A).

In Table 6, family life functioning, G2 (DS) presented a higher statistical mean tendency than G1 (PD) in the following items: (a) our family needs help to find a way, in difficult times, to support each other (t (38.2) = 1.78, p <0.1), and (b) and in the total of family life functioning subscale (t (35.2) = 1.76, p <0.1). These data may be indicative that these families are going through phases of family readjustment because their children are still young.

Thus, we highlight the importance of psychological support in relation to the acceptance of the children, as they can cause problems in the functioning of family life as observed in G2 (DS). In addition, Down Syndrome has a specific phenotype, which may be a contributing factor to stigmatization. The characteristics of the person, both external and internal, can exert influences in the way other people deal with them; in this way, they affect the context, experiences and relationships that take place over time (Martins & Szymanski, 2004). Therefore, it is hypothesized that families of children with disabilities that have very specific characteristics and greater visibility in society such as DS may have a greater need for help with acceptance of the child, which influence family relationships, especially regarding the couple.

3.2. Social support of families

Table 7 compares the number and the average number of people who offered social support between G1 (PD), G2 (DS) and G3 (A).

Table 7 Number and average number of people who offered social support in various life situations: comparison between G1, G2 and G3 

Social Support
Questionnaire
Total of supportive people Mean Total of supportive people Mean Total of supportive people Mean
G1 (PD) G2 (DS) G3 (A)
To whom you think you are an important part of their life 46 2.30 55 2.75 62 3.10
Who you feel that truly and deeply likes you 43 2.15 56 2.80 56 2.80
Who you really can count on to listen to you when you need to talk 39 1.95 39 1.95 35 1.75
Who you think really appreciates you as a person 37 1.85 43 2.15 43 2.15
Who you can really count on when you need help 36 1.80 36 1.80 34 1,.70
Who accepts you fully, including the best and the worst of you 33 1.65 35 1.75 33 1.65
Who you can count on to worry about you regardless of what is happening to you 32 1.60 34 1.70 32 1.60
Who you can count on to give helpful suggestions that help you not to make mistakes 31 1.55 32 1.60 32 1.60
With whom you can be totally yourself 30 1.50 40 2.00 26 1.30
Who you think could help if a close relative died 29 1.45 43 2.15 33 1.65
Who you really can count on to listen to you when you're really mad at someone 28 1.40 27 1.35 29 1.45
Who you could really count on to help in case you lost your job 27 1.35 27 1.35 29 1,.45
With whom you can really count on to distract you from your worries when you feel stressed 27 1.35 24 1.20 26 1.30
Who helps you feel that you truly have something positive that can help others 27 1.35 35 1.75 31 1.55
Who you think would help you if a good friend of yours had suffered a car accident and was hospitalized in critical condition 27 1.35 27 1.35 33 1.65
Who you can really count on to help you feel better when you are depressed 26 1.30 29 1.45 28 1.40
Who you think could help if you were married and had just split up 25 1.25 26 1.30 32 1.60
With whom you can talk frankly without having to worry about what you say 25 1.25 27 1.35 28 1.40
Who you can really count on to give you support in important decisions you make 22 1.10 34 1.70 25 1.25
With whom you can really count on to help you if a person you thought was a good friend insulted you and said that he/she did not want to see you again 22 1.10 25 1.25 27 1.35
Who will comfort and hold you when you need it 21 1.05 38 1.90 34 1.70
Who you can count on to tell you gently that you need to improve on something 21 1.05 25 1.25 27 1.35
Who could you really count on to help you get out of a crisis even if that person had to leave her own chores to help you 20 1.00 28 1.40 27 1.35
With whom you can really count on to help you become more relaxed when you are under pressure or tense 20 1.00 22 1.10 26 1.30
Who you can really count on to comfort you when you are very upset 20 1.00 20 1.00 27 1.35
With whom you can count on to listen to your innermost feelings openly and without criticizing you 19 0.95 25 1.25 24 1.20
With whom you can really count on to help you feel better when you are very angry or about to be angry at anything 18 0.90 18 0.90 25 1.25
Scale total 751 37.5 870 43.5 864 43.2

Source: Elaborated by the authors.

As shown in Table 7, G1 (DS) presented lower numbers of supportive people, followed by G3 (A) and G2 (PD). In all three groups, the aspects of life to which families presented the highest rates of support were: (a) who you think that you are an important part of their life and (b) who you feel that truly and deeply likes you. In sequence, G1 (PD) presented a higher mean value in the factor that refers to the people that the mothers can really count on to listen to them when they need to talk. G2 (DS) and G3 (A) showed higher mean values in relation to social support in the item of presenting more people who appreciate them. G2 (DS) also showed a high mean value relative to supportive people in the event of death of a close relative.

Comparing G1 (PD) and G2 (DS), G2 (DS) presented a higher statistical mean (or higher statistical tendency) when compared to G1 (PD) in the following factors: (a) who will comfort and hold you when you need it (t (26,4) = 2,28, p <0,05); (b) who you think could help if a close relative died (t (32.6) = 1.71, p <0.05); and (c) who you can really count on to support you in important decisions you make (t (22.7) = 1.80, p <0.1).

Between G1 (PD) and G3 (A), the data indicated that G3 (A), compared to G1 (PD), presented a higher statistical mean in the items: (a) to whom you think you are an important part of their life (t (38) = 1.78, p <0.05); and (b) who will comfort and hold you when you need it (t (38) = 2.89, p <0.05). However, between G2 (DS) and G3 (A), there were no significant differences.

It was noticed that there were not many significant differences in the comparison between the groups. However, it was observed that G2 (DS) and G3 (A) presented a higher number of supportive individuals, as well as a higher statistical mean compared to G1 (PD) in items that presented significant differences. In Almeida and Sampaio’s study (2007), which was conducted only with mothers of children with Cerebral Palsy, social support varied in relation to the mothers’ age, children’s age and the child’s autonomy level. However, the more autonomous the movement of the children, the higher the perception of social support in relation to the social activities the mothers reported, compared to the mothers whose children had lower levels of independent movement. Thus, these results may be indicative of the fact that children, both due to disability and age in G1 (PD), are more dependent on mothers, a fact that causes mothers to have less time to perform social activities and, as a result, they also have fewer people who give them social support. Therefore, it is necessary to maximize social support with these mothers, whether they are professionals, family members, health services or community who can go to the family’s home, as this higher level of child dependence affects the conditions of mothers to maintain social activities frequently.

Table 8 compares the degree of satisfaction with social support received between G1 (PD), G2 (DS) and G3 (A). As the items in the social support scale are contained in Table 7, in full, Table 8 will focus only on items that presented significant statistical differences between groups.

Table 8 Degree of satisfaction of social support received: comparison between G1, G2 and G3 

Social Support Questionnaire Mean SD Mean SD Mean SD
G1 (PD) G2 (DS) G3 (A)
With whom you can be totally yourself 6.00 0.00 5.75 1.12 5.40 1.31
With whom you can really count on to help you feel better when you are very angry or about to be angry at anything 5.90 0.31 5.05 1.60 5.65 1.14
Who you could really count on to help in case you lost your job 5.75 1.12 4.85 2.08 5.40 1.27
With whom you can count on to listen to your innermost feelings openly and without criticizing you 5.50 1.39 4.35 1.81 5.40 1.53
Who you think would help you if a good friend of yours had suffered a car accident and was hospitalized in critical condition. 5.15 1.78 5.95 0.22 5.50 1.28
Scale total 5.63 0.70 5.36 0.95 5.54 0.83

Source: Elaborated by the authors.

Note: Scores ranged from 1 (very dissatisfied), 2 (reasonably dissatisfied), 3 (somewhat dissatisfied), 4 (somewhat satisfied), 5 (reasonably satisfied) and 6 (very satisfied). The mean of 5.90 was considered as a cut-off grade. In the table the questions that presented significant differences between G1, G2 and G3 were maintained.

When comparing the groups with respect to satisfaction with support received, G1 (PD) presented a higher statistical degree of satisfaction (or with a higher statistical tendency), when compared to G2 (DS), in the items: (a) who you could really count on to help you if you lost your job (t (29) = 1.70, p <0.1); (b) who you can count on to hear your innermost feelings openly and without criticizing you (t (35,6) = 2,24, p <0,05); and (c) who you can really count on to help you feel better when you are very angry or about to be angry at anything (t (20,3) = 2,32, p <0,05). G2 (DS), when compared to G1 (PD), presented a degree of satisfaction with a higher statistical tendency in the item: (a) who you think would help you if a good friend of yours had suffered a car accident and was hospitalized in severe condition (t (19.5) = 1.98, p <0.1).

When comparing the degree of satisfaction between the mothers of G1 (PD) and G3 (A), it was verified that G1 (PD) presented a higher statistical mean in the item: with whom you can be totally yourself (t (19,0 ) = 2.04, p <0.05). In the comparison between G2 (DS) and G3 (A), the data showed that G3 (A) presented a higher statistical mean, when compared to G2 (DS) in the following item: who you can count on to listen to your innermost feelings openly and without criticizing you (t (36,9) = 1,97, p <0,05).

The data indicate that, although G1 (PD) has a smaller number of supportive people (see Table 7), it is the group with the highest degree of satisfaction with the support received. These results may indicate that G1 (PD) has a higher quality of support received, however, it was observed that, for example in situations of unemployment, situations of irritation, conversation and intimacy, it presented a higher statistical mean compared to G2 (DS) and G3 (A). G2 (DS) was less satisfied with the social support received. These data can confirm the fact that the parents have more difficulty in relation to the physical characteristics of the child with DS.

Matsukura et al. (2007) emphasize, in their study, the importance of interventions to expand the support networks; they highlight programs that aim at understanding the adequacy and satisfaction with the social support received. Higher quality of social support can lead to an expansion of social network systems, which will influence the development of the child, which often does not maintain a direct relationship with the people who establish the parents’ help (Martins & Szymanski, 2004; Poletto & Koller, 2008).

4 Conclusion

This study revealed that mothers with children with different disabilities presented similar aspects. This fact shows that mothers go through very similar situations and experiences. However, through the comparison between the groups, it was identified, for example, that mothers of children with physical disabilities (G1) have higher financial needs and fewer people with whom they can count on. G2 (DS) presented a need for support as well as an aid in the functioning of family life. G3 (A) presented needs regarding how to explain the situation of the children to society and establish communication with the children. These data provide important subsidies for the implementation of policies and programs to support the variables studied, so that these families can be increasingly supported from the birth of the child, in order to reduce the impacts on all family members.

In addition, ascertaining the needs and social support makes thinking about future studies of families with different diagnoses possible, in order to get them to recognize the resources external to them and the support needed to deal with the difficulties of family life. We believe that this study can contribute to the knowledge about families of children with disabilities, and it may support future intervention research to minimize family needs, increased social support and stimulation and interaction between parents and children of the age group addressed.

As a limitation of the study, we emphasize the importance of expanding the samples in each group, as well as to address the comparison with mothers of children with sensory impairments, developmental delay and different levels of children’s disability.

2Financial support: National Council for Scientific and Technological Development (CNPq).

7The needs assessment in Tables 1 to 5 ranged from 1 (I do not need this type of aid); 2 (I’m not sure whether I need this kind of aid) and 3 (I need this kind of aid).

REFERENCES

Alexandre, S. M., & Felizardo, S. (2009). O impacto do suporte social em famílias de crianças com deficiência. International Journal of Developmental and Education Psychology, 3(1), 267-274. [ Links ]

Almeida, T., & Sampaio, F. M. (2007). Stress e suporte social em familiares de pessoas com paralisia cerebral. Psicologia, Saúde & Doenças, Lisboa, 8(1), 145-151. [ Links ]

Azevedo, T. L. (2014). Programa de intervenção com pais: Impactos no bem-estar familiar e na estimulação infantil (Dissertação de Mestrado). Universidade Federal de São Carlos, São Carlos, SP, Brasil. [ Links ]

Barbosa, M. A. M., Pettengill, M. A. M., Farias, T. L., & Lemes L. C. (2009). Cuidado da criança com deficiência: Suporte social acessado pelas mães. Revista Gaúcha de Enfermagem, Porto Alegre, 3(3), 406-412. [ Links ]

Bissoto, M. L. (2005). Desenvolvimento cognitivo e o processo de aprendizagem do portador de síndrome de Down: Revendo concepções e perspectivas educacionais. Revista Ciência e Cognição, Rio de Janeiro, 4, 80-88. [ Links ]

Bronfenbrenner, U. (2011). Bioecologia do desenvolvimento humano: Tornando os seres humanos mais humanos. São Paulo: Artmed. [ Links ]

Cia, F., Gualda, D. S., & Christovam, A. C. C. (2015). Recursos, suporte social e necessidades de famílias de crianças pequenas público-alvo da educação especial. In E. G. Mendes, & M. A. Almeida (Orgs.), Educação especial inclusiva: Legados históricos e perspectivas futuras (pp. 185-205). São Carlos: Associação Brasileira de Pesquisadores em Educação Especial. [ Links ]

Cozby, P. C. (2006). Métodos de pesquisa em ciências do comportamento (2a ed.). São Paulo: Atlas. [ Links ]

Desen, M. A., Braz, M. P. (2014). Diagnostic and statistical manual of mental disorders (5a ed.). Washington (DC): APA. [ Links ]

Dunst, C. (2000). Apoiar e capacitar as famílias em intervenção precoce: O que aprendemos? In L. M. Correia, & A. M. Serrano (Orgs.), Envolvimento parental em intervenção precoce - das práticas centradas na criança às práticas centradas na família (pp. 77-92). Porto: Porto Editora. [ Links ]

Fujisawa, D. S., Tanaka, E. D. O., Camargo, M. Z., & Sasaki T. (2009). Mielomeningocele: O relato de mães frente ao diagnóstico e suas vivências. In D. S. Fujisawa, M. C. Marquezine, E. D. O. Tanaka, R. M. Busto, & E. J. Manzini (Orgs.), Família e Educação especial (Nº 7, pp. 101-117). Londrina: Associação Brasileira de Pesquisadores em Educação Especial. [ Links ]

Glat, R. (2012). Orientação familiar como estratégia facilitadora do desenvolvimento e inclusão de pessoas com necessidades especiais. In E. G. Mendes, & M. A. Almeida (Orgs.), A pesquisa sobre inclusão escolar em suas múltiplas dimensões teoria, políticas e formação (1a ed., Vol. 1, pp. 315-326). Marília: Associação Brasileira de Pesquisadores em Educação Especial. [ Links ]

Griffith, G. M., Hastings, R. P., Nash, S., & Hill, C. (2010). Using matched groups to explore child behavior problems and maternal well-being in children with Down syndrome and autismo. Journal of Autism & Developmental Disorders, 9(5), 610-619. [ Links ]

Gualda, D. S., Borges, L., & Cia, F. (2013). Famílias de crianças com necessidades educacionais especiais: Recursos e necessidades de apoio. Revista Educação Especial, Santa Maria, 26(46), 307-330. [ Links ]

Henn, C. G., Piccinini, C. A., & Garcias, G. L. (2008). A família no contexto da síndrome de Down: Revisando a literatura. Psicologia em Estudo, Maringá, 13(3), 485-493. [ Links ]

Lyons, A. M., Leon, S. C., Phelps, C. E. R., & Dunleavy, A. M. (2010). The impact of child symptom severity on stress among parents of children with ASD: The moderating role of coping styles. Journal of Child and Family Studies, 19(4), 516-524. [ Links ]

Martins, E., & Szymanski, H. (2004). A abordagem ecológica de Urie Bronfenbrenner em estudos com famílias. Estudos e pesquisas em Psicologia, Rio de Janeiro, 4(1), 63-77. [ Links ]

Matsukura, T. S., Maturano, E. M., & Oishi, J. (2002). O questionário de suporte social (SSQ): Estudos da adaptação para o português. Revista Latino-Americana de Enfermagem, Ribeirão Preto, 10(5), 675-681. [ Links ]

Matsukura, T. S., Maturano, E. M., Oishi, J., & Borasche, G. (2007). Estresse e suporte social em mães de crianças com necessidades especiais. Revista Brasileira de Educação Especial, Bauru, 13(3), 415-428. [ Links ]

Messa, A. A., Araújo, C. O. de, Freitas, C. S., Penna, E. C. G., Yasui, E. M., Aguiar, L. G. ... Blascovi-Assis, S. M. (2005). Lazer familiar: Um estudo sobre a percepção de pais de crianças com deficiência. Programa de distúrbios do desenvolvimento da Universidade de Mackenzie, 5, 12-26. Recuperado em 21 de abril de 2018 de http://www.mackenzie.br/fileadmin/Pos_Graduacao/Mestrado/Disturbios_do_Desenvolvimento/Publicacoes/volume_V/lazer_familiar.pdf. [ Links ]

Millan, A. E., Spinazola, C. C., & Orlando, R. M. (2015). Deficiência Intelectual: Caracterização e atendimento educacional. Revista Educação, Batatais, 5(2), 73-94. [ Links ]

Pereira, F. (1996). As representações dos professores de educação especial e as necessidades das famílias (Tese de Doutorado). Secretariado Nacional para Reabilitação e Integração das Pessoas com Deficiência, Lisboa, Portugal. [ Links ]

Poletto, M., & Koller, S. H. (2008). Contextos ecológicos: Promotores de resiliência, fatores de risco e de proteção. Estudos de Psicologia, Campinas, 25(3), 405-416. [ Links ]

Sá, S. M. P., & Rabinovich, E. P. (2006). Compreendendo a família da criança com deficiência física. Revista Brasileira de Crescimento e Desenvolvimento Humano, São Paulo, 16(1), 68-84. [ Links ]

Sampieri, R. H., Collado, C. H., & Lucio, P. B. (2006). Metodologia de pesquisa (3a ed.). São Paulo: McGraw-Hill. [ Links ]

Santos, S. L. (2014). Comparação das características familiares de crianças com diferentes faixas etárias (Dissertação de Mestrado). Universidade Federal de São Carlos, São Carlos, SP, Brasil. [ Links ]

Silva, R. S., & Chaves, E. F. (2014). Autismo, reações e consequências nas relações familiares. Encontro: Revista de Psicologia, Londrina, 17(26), 35-45. [ Links ]

Spinazola, C. C. (2014). Bem-estar e qualidade da estimulação: Comparando famílias de crianças público alvo da educação especial de zero a três anos e de quatro a seis anos (Trabalho de Conclusão de Curso). Universidade Federal de São Carlos, São Carlos, SP, Brasil. [ Links ]

Szymanski, H. (2011). A relação família/escola: Desafios e perspectivas (2a ed.). Brasília: Liber Livro. [ Links ]

Received: October 09, 2017; Revised: February 23, 2018; Accepted: February 25, 2018

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