Maladjustment in Families with Disabled Children

Available online at www.sciencedirect.com

ScienceDirect Procedia - Social and Behavioral Sciences 237 (2017) 863 – 868

7th International Conference on Intercultural Education “Education, Health and ICT for a Transcultural World”, EDUHEM 2016, 15-17 June 2016, Almeria, Spain

Maladjustment in families with disabled children Vargas-Muñoz, M.E.ª*, López-Liria, R.b, Rocamora-Pérez, P.b, Aguilar-Parra, J.M.c, Díaz-López, M.P.a & Padilla-Góngora, D.c b

a Department of Education and Science of Andalusia, 04006, Almería, Spain Department of Nursing and Physiotherapy, University of Almería, 04120 Almería, Spain c Department of Psychology, University of Almería, 04120 Almería, Spain

Abstract The birth of a child having a disability requires a period of adaptation for the family. When parents are maladjusted, their mental health will be negatively affected, interfering with their day to day lives. This document attempts to determine the degree of maladjustment in 36 parents (23 mothers and 13 fathers) of children with distinct disabilities as well as its relationship with certain sociodemographic variables. Results reveal values for these families that are above the cut-off point for a scale (> 12) of a series of variables affecting adaptation to their child’s specific case. © 2017 2016The TheAuthors. Authors. Published Elsevier © Published by by Elsevier Ltd.Ltd. This is an open access article under the CC BY-NC-ND license Peer-review under responsibility of the organizing committee of EDUHEM 2016. (http://creativecommons.org/licenses/by-nc-nd/4.0/). Peer-review under responsibility of the organizing committee of EDUHEM 2016. Keywords: maladjustment; disability; families; parents

1. Families with disabled children For disabled individuals, the role of the family is quite significant, given that it serves significant functions such as offering diverse opportunities for these individuals to acquire necessary skills and abilities (Puig & Reguera, 2004 in Álvarez et al., 2004; Sarto, 2004). When a child is born with a disability, this comes as a shock to the family, affecting its entire structure (Cruz, 2011). Clearly, the family’s expectations for this baby are turned upside down upon knowledge of the disability (Hallas, Fraser & McGillivray, 1978; Sarto, 2004; Sola-Carmona, López-Liria, PadillaGóngora, Daza & Sánchez-Alcoba, 2013).

* Corresponding author. E-mail address: [email protected]

1877-0428 © 2017 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Peer-review under responsibility of the organizing committee of EDUHEM 2016. doi:10.1016/j.sbspro.2017.02.184

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The birth of a child with a disability is immediately perceived by the parents as an exceptional, unexpected and senseless event (Guevara & González, 2012), requiring a period of adaptation by all family members, as is the case with any other grieving process. Sarto (2004) affirms that acceptance depends on many factors, including: personal and emotional characteristics of the parents, family dynamics, the couple relationship, external social support of the family, birth order of the disabled child, sociocultural and economic level, etc. According to Seguí, Ortiz & De Diego (2008), the parents of disabled children experience a series of disorders that are directly related to the type and degree of the child’s disability. These disorders include: fatigue, depression, low self-esteem and interpersonal dissatisfaction. The way in which each person carries out his/her desires, aspirations, hopes, feelings, etc. make up an essential aspect in their mental health, being closely related to how it unfolds in the distinct contexts of their life: home, family, work, school, friendships, etc. (Echeburúa et al., 2000). If the person is not adapted to his/her daily life, his/her mental health shall be negatively affected, coming to interfere with his/her day to day life (Echeburúa et al., 2000). Therefore, it is necessary to assess how a child’s disability may come to interfere with the family’s daily life, in order to determine the evolution of the family nucleus and the acceptance of the child’s characteristics. 2. Objectives The objectives of this study are to determine the degree of maladjustment in the daily lives of families with disabled children in the province of Almería (Spain), and to identify the sociodemographic variables that influence said family adaptation. 3. Method 3.1. Participants The mothers and fathers participating in this study were recruited based on the following selection criteria: being the mother or father (no couples; only one parent from each family group) of at least one boy or girl having a disability according to the WHO (2001) for the experimental group and without a disability for the control group; being over the age of 18; living in the same home as the disabled child and agreeing to participate in the study. Exclusion criteria were having any conditions that may hinder or impede assessment (cognitive impairment, illiteracy, etc.) and/or participation in any sort of individual or group psychological intervention. The final sample consisted of 23 mothers (63,9%) and 13 fathers (36,1%). Their ages ranged from 37 to 44 (with the mean age being 40.75 ± 2.075 years). All of the participants (100%) were married. As for education level, 75% of the subjects had higher level studies, while 25% were only primary school graduates. Of the subjects, 83.3% were employed and 16.7% were housewives. As for the children, 30 were boys (83,3%) and 6 were girls; 41,7% had intellectual disabilities, 30,6% suffered from disorders of the Autism spectrum (TEA), 16.7% had sensory disabilities and 11.1% had physical disabilities. The mean age was 9.75 ± 2.116 years. 3.2. Instrument The Maladjustment Scale was used (Echeburúa et al., 2000). This is a brief, 6-item scale that assesses the degree of maladjustment to everyday life, dividing it into five areas of functioning (work, social life, free time, couple relationship, family life), as well as a general estimation of the severity of impact on their life (0-none, 5-a lot). Higher scores indicate a higher degree of affectation or maladjustment in the different areas of the daily life. Validated with the clinical and normative Spanish population, and sensitive to therapeutic change, the scale has an adequate internal consistency, with a Cronbach alpha of 0.94. It has a cut off point of 12, differentiating between adaptation and maladjustment, obtaining a specificity of 86% and a sensitivity of 100%. At the same time, for each of the six sub-scales, a cut off point of 2 implies a diagnostic efficiency equal to or above 90% (Echeburúa et al., 2000).


3.3. Procedure A descriptive transversal scale was created with data collected from individual questionnaires. Families were recruited from various associations and public schools in the province of Almería (Spain). First, the different associations for disabled individuals were contacted in order to inform them of this project, sending them information for individuals who may have an interest in participating. Later, subjects wishing to participate were convened to explain the project objectives and to deliver the questionnaires along with informed consent for participation. 3.4. Statistical analysis A descriptive analysis was conducted on the variables by obtaining the mean (M) and standard deviation (SD) of the quantitative variables. In order to determine intragroup differences based on gender, non-parametric tests were conducted, analysing the Mann Whitney U, along with the effect size. For intergroup comparison, in relation to the different sociodemographic variables, non-parametric tests were applied for unrelated K samples: Kruskal-Wallis and Mann Whitney U, with both having significance levels of 0.05. These data were obtained using the SPSS V. 22 statistics package. 4. Results Scores of the parents participating in the study exceeded the cut off point (> 12) for the maladjustment scale (Table 1). Table 1. Results from the maladjustment questionnaire

EI Maladjustment

N

M

DT

Mín

Máx

36

14,50

7,081

6

25

No statistically significant differences were found between the mothers and fathers participating in the study, although in Table 2 it may be seen that the latter scored higher in the maladjustment scale (M= 15.23) as compared to the mothers (M= 14.09). Table 2. Intragroup differences by gender Gender

N

M

SD

Male

13

15,23

8,258

Female

23

14,09

6,487

U

W

Z

p

r

136

412

-0,453

,650

-.075

According to the Mann-Whitney U test (Table 3), the following variables were found to have significant differences: Fathers/mothers having only primary school education had higher maladjustment scores (U=27; p 12), but the mean was higher for those who cared for their children for less than 80 hours weekly (M= 13.55) as compared to those caring for the children for more hours per week (M= 25). Parents having no other family members with disabilities revealed higher levels of maladjustment (U= 54; p = .002, r= -.513), with a large effect size and with the scores falling outside of the clinically significant values (> 12).

865

866


Mothers and fathers without the support of another family member scored the highest on the maladjustment scale (U= 63; p = .029), with a large effect size (r= .692). In the same way, parents without the support of some friendship had the lowest scores on the maladjustment scale (U= 22.5; p< .001, r= .692), with a large effect size. Furthermore, parents having the support of some friendship were those situated outside of the clinically significant values (> 12). According to the Kruskal-Wallis test, statistically significant differences existed between the types of disability (X2= 7,89; p= .048) although the effect size was low (r= .270). Parents of children having intellectual disabilities had better adaptation levels (M= 11,80), than parents of children suffering from disorders of the Autism spectrum (TEA) who had higher rates on this scale (M= 18,09). Table 3. Relationship of the sociodemographic variables with the score in the maladjustment questionnaire Sociodemographic variables

N

M

SD

9

22,00

2,59

27

12,00

6,28

Active

30

14,50

6,991

Housewife

6

14,50

8,216

Male

30

13,00

6,823

Female

6

22,00

,000

< de 80 hours/week

3

25,00

,000

> de 80 hours/week

33

13,55

6,601

No

24

16,75

5,951

Yes

12

10,00

7,236

No

9

18,00

8,352

Yes

27

13,33

6,355

No

24

17,75

6,081

Yes

12

8,00

3,618

No

12

16,50

4,462

Yes

24

13,50

7,978

N

M

SD

Intellectual

15

11,80

7,418

Physical

4

12,50

1,732

Autism spectrum

11

18,09

4,571

Sensory

6

16,00

9,859

Primary school graduate Education level

High school degree/ Higher level studies

Labour status

Gender of child

Hours of care for child Other family members with disability Family member support

Support from friend

Institutional support

Disability group of child

U

W

Z

p

r

27

-3,51

405

,000

-.586

81

-0,38

546

,697

-.064

27

492

-2,726

,006

-.454

0

561

-2,888

,004

-.481

54

132

-3,078

,002

-.513

63

441

-2,178

,029

.300

22,5

100, 5

-4,156

,000

.692

112, 5

412, 5

-1,077

,281

-.179

X2

Gl

p

r

7,89

3

,048

.270

Kruskal-Wallis

5. Discussion and conclusions The birth of a child with a disability creates a huge impact on the family, as revealed by numerous studies, the majority of which have focused on the psychological adaptation of the parents (Dolger-Hafner, Bartsch, Trimbach, Zobel & Witt, 1997; Turner, Rumsey & Sandy, 1998; Strauss, 2001; Pelchat, Lefebvre, Proulx & Reidy, 2004; Synder, Bilboul, & Pope, 2004; Weigl, Rudolph, Eysholdt & Rosanowski, 2005; Brent & Matthew, 2006; Limiñana, Corbalán & Patró, 2007). The importance of this issue lies in the adaptation difficulties existing in families with a disabled child.


The mothers/fathers in this study revealed scores that were above the cut off point established for the scale, with these scores being higher for the fathers, although statistically significant differences were not found based on gender. This data relates to that obtained by other researchers (Knussen & Sloper, 1992) who demonstrated that mothers were especially affected by the child’s behaviour issues, whereas fathers, in addition to communication problems, were most affected by the disability and the presence of other stressful life events (family economics, labour situation, etc.), with fathers having more difficulty with the adaptation process as compared to mothers. As for the sociodemographic variables studied, parents with a lower education level (only primary school studies) scored higher on the maladjustment scale, leading us to believe that increased education offers families more resources in order to face this situation. Prior research (Churchill, Villareale, Monaghan, Sharp & Kieckhefer, 2010; Raphael, Zhang, Liu, & Giardino, 2010; Streisand, Mackey, & Herge, 2010), has affirmed that the care of a disabled child requires greater attention and increased time, with the understanding that this situation affects the adaptation of families with disabled children. However, in this study, it was found that those parents who cared for their children for a fewer number of hours tended to have higher scores on the maladjustment scale. However, the fact that some other family member also had a disability tended to decrease the effects of the impact of the child’s disability. Likewise, various studies have confirmed that the presence or lack of social support affects the health of the individuals (Dean & Lin, 1977; Gore, 1978). Thus, those having more support (family, friends, couple, etc.), tend to have fewer health and mental issues (Cohen & Wills, 1985; Thoits, 1982), as corroborated by our study which revealed that those having the support of a friend or family member had lower levels of maladjustment. Finally, parents of children suffering from disorders of the Autism spectrum revealed higher rates of maladjustment as compared to the other disability groups, with this data being explained perhaps by the seriousness of the symptoms associated with TEA (Faso, Neal-Beevers & Carlson, 2013), leading to higher rates of anxiety and depression (Carter, MartínezǦPedraza & Gray, 2009; Estes et al., 2009; Ingersoll & Hambrick, 2011; Johnson, Frenn, Feetham, & Simpson, 2011; Lecavalier, Leone & Wiltz, 2006; Phetrasuwan & Miles, 2009), thereby affecting the family’s adaptation. 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