Investigating the Resilience Levels of Parents with Children with Multiple Disabilities Based on Different Variables

This study investigated the resilience levels of parents with children with multiple disabilities by utilizing different variables. The study, conducted with survey model –a qualitative methodincluded a sample composed of a total of 222 voluntary parents (183 females, 39 males) residing in Bolu, Duzce and Zonguldak in Turkey. Parental Information Form and Family Resilience Scale, consisting of 4 sub dimensions (Challenge, Self Efficacy, Commitment to Life and Control) and a total of 37 items, were used in the framework of the study which included reliability and validity studies of the scale as well. Differences between sub groups were not statistically significant for the following variables: gender of children with multiple disabilities; age of children with multiple disabilities; support received for child care by parents of children with multiple disabilities; health problems of parents of children with multiple disabilities; psychological support received by parents of children with multiple disabilities; age of parents of children with multiple disabilities; income levels and education of parents of children with multiple disabilities (p>0.05). However, significant differences were observed in Challenge dimension in terms of gender of the parents and the type of disability.


Introduction
Family is the smallest unit of the society formed by individuals with idiosyncratic manners, beliefs and values who are connected with marriage, blood or children and live together under the same roof, share a common income and interact and communicate with their social roles (Koknel, 1970).Couples opt for children for several reasons.They regard children as a complementary element of their marriage (Gundogdu, 1995).Before having their children, couples have the ideal child image (with healthy and normal developmental patterns).Parents who expect the birth of a child with the same mental and physical developmental patterns with peers lose the concept of ideal child they have been dreaming about and their dreams come to an abrupt end (Caglar, 1979).Akinci and Darica (2000) define disabilities as situations in which it becomes difficult to adapt oneself to the requirements of normal life as a result of continuous loss of function or disabilities in physical, mental, psychological or social characteristics of the individual.According to Turkish Statistical Institute data (2010), 18% of individuals with disabilities have multiple disabilities.Although the education of this group has been neglected in our country (Safak, 2009), studies conducted on individuals with multiple disabilities have increased in number (Eldeniz Cetin, 2013;Sardohan-Yildirim & Akcamete, 2014;Singh, Lancioni, O'Reilly, Molina, Adkins & Oliva, 2003;Spevack, 2006;Safak, 2009;Safak, 2010;Safak, 2012;Safak, Eldeniz-Cetin, & Kot, 2015;Tam, Phillips & Mudford, 2011).While having a disability is a problem in all phases of life, individuals with severe or multiple disabilities face more problems (Cavkaytar & Diken, 2005).While parents who have children with one disability have difficulties dealing with this disability, parents of children with multiple disabilities face more than one disability and experience more difficulties.When they face difficulties in coping with their problems, parents can redress the balance and become more resilient by increasing their efforts and changing the ends and means that they use to meet their needs (Patterson, 2002).The first thing to strengthen the resilience levels of families is to identify the situation.A modern approach to use in this sense is to focus on the positive and strong aspects of individuals rather than focusing on the negative and weak ones (Karairmak & Sivis, 2008).The concept of focusing on the strong aspects of individuals is positive psychology.Positive psychology supports the view that individuals should not regard themselves with only negative aspects and be pessimist, determinist, accusatory, dependant, jealous, selfish and judgmental individuals (Aydin, Yilmaz & Altinkurt, 2013) and it focuses on the strong aspects of individuals (resilience, coping, optimism, self efficacy etc.) (Duckworth, Steen & Seligman, 2005;Sheldon & King, 2001).In this context, the concept of resilience becomes significant.Resilience is defined by Earvolino-Ramirez (2007) as "the ability to recover rapidly when an individual experiences negative or troubling events, to recuperate, to bounce back to normal".Identifying the resilience characteristics of parents of children with multiple disabilities and focusing on their positive potentials may significantly contribute to these parents, the family as an institution and society.
Review of the studies that aim to identify the resilience levels of f parents of children with multiple disabilities show that these studies mainly focus on the resilience levels of parents of children with hearing disabilities (Ahlert & Greeff, 2012), parents of children with mental disabilities (Gerstein, Crnic, Blacher & Baker, 2009;Jonker & Greeff, 2009), parents of children with Down Syndrome (Van Riper, Ryff & Priadham, 1992), parents of children with autism spectrum disability (ASD) (Bayat, 2007;Bekhet, Johnson & Zauszniewski, 2012;Cripe, 2013;Greeff & Walt, 2010); Kapp & Brown, 2011;), parents of children with Rett Syndrome (Retzlaff, 2007), parents of children with behavioral problems (Mcconnell, Savage and Breitkreuz, 2014), parents of children with developmental disabilities (Greeff & Nolting, 2013) and parents of children with chronic illnesses (Lee et. al., 2004).Literature review undertaken to review the studies conducted in Turkey and abroad point to the fact that there are no studies on the resilience levels of parents with children with multiple disabilities although several studies have been identified on resilience of children with various types of disabilities and resilience of their parents.Therefore, this study focused on investigating the resilience levels of parents with children with multiple disabilities by utilizing different variables.Answers to the following questions were sought with this aim in mind: 1.
Do the demographic characteristics of the parents of children with multiple disabilities (gender, age, level of education, income level, receiving support for child care, health problems, receiving psychological support) present significant differences based on the variables listed below?2-Do the demographic characteristics of the children with multiple disabilities (age, gender, type of disability) present significant differences based on the variables listed below?

Research Model
General survey model was used in this study.

Universe and Sample
The universe for the study is the parents of children with multiple disabilities in Turkey.Sample was selected from this universe with availability sampling method.The sample of the study was composed of a total of 222 voluntary parents (183 females, 39 males) residing in Bolu, Duzce and Zonguldak provinces.

Data Collection Tools
Parental Information Form developed by the researcher was used to identify the demographic characteristics of parents with children with multiple disabilities.Family Resilience Scale developed by Kaner and Bayrakli (2010) was utilized to determine the resilience levels of participating families.
Parental Information Form: this form was generated by the researcher and includes questions that aim to collect data related to demographic characteristics of parents with children with multiple disabilities (age, gender, level of education, income level, receiving support in the care of the child, health problems, receiving psychological support) and demographic characteristics children with multiple disabilities such as the age, gender and type of disabilities.
Family Resilience Scale: Family Resilience Scale was developed by Kaner and Bayrakli (2010) to identify resilience levels of parents with children with multiple disabilities.Family Resilience Scale is 5-point Likert type scale with 37 items and parents select the best option that defines their situation (describes it very well: 5; does not describe it at all: 1).The scale has four sub scales: Challenge, Self Efficacy, Commitment to Life and Control.High scores obtained in Family Resilience Scale point to high levels of resilience.Results of item correlation conducted on the 37 items of Family Resilience Scale show the following item total correlations: 0.451-0.689for Challenge; 0.468-0.697for Self Efficacy, 0.387-0.637for Commitment to Life and0.339-0.408for Control.Construct validity for the scale was investigated with the help of exploratory factor analysis followed by confirmatory factor analysis.Goodness-of-fit values obtained as a result of confirmatory factor analysis were found to be chi square 1300.96,sd 620, chi square /sd 2.1, NF1 0.84, NNFI 0.90, cfi 0.91, gfi 0.88, agfi 0.87, rmsea 0.046 and rmr 0.044.Reliability analysis for Family Resilience Scale presented the Cronbach Alpha coefficient for the scale as 0,937.According to this result, the reliability of the scale is good since it is higher than 0,70 (Buyukozturk, 2014).

Data Collection
Required permits were taken from related institutions for the study and the study was conducted on a voluntary basis.

Data Analysis
Prior to the data analysis process, the scores obtained from the participants were subjected to some controls.The statistical test type that would be used for the 10 variables included in the study was decided based on the findings obtained during these controls.The controls used in this process are listed below respectively: a) Defining the category numbers of the variables, b) Controlling and cleaning the missing and extreme values in the data set, c) Testing the normality of the total scores obtained form sub scales and the scale d) Testing the variance homogeneity for the variables with more than two categories, e) Determining the statistical test that would be used The controls undertaken in this respect showed that only the total scores in Resilience Scale presented normal distribution while scores in the subscales did not display normal distribution.According to these results, Unrelated Samples T-Test -a parametric test-was used for Resilience Scale total scores in the comparisons based on gender of the parent, gender of the child, receiving support in taking care of the child, health problems of the parent and receiving psychological support variables while non-parametric Mann Whitney U test was utilized for sub scale scores.
One way ANOVA -a parametric test-was used for comparing the variables with more than two categories.In addition to normality assumption, equality of variances assumption was also controlled for one way ANOVA.The controls showed that the total scores obtained from Resilience Scale met normality and equality of variances assumption while the scores obtained from sub scales met the equality of variances assumption but not the normality assumption.Based on these results, One way ANOVA -a parametric test-was used for the total scores obtained from Resilience Scale since the age of the parents, age of the children with multiple disabilities, income level, type of disability and level of education for parents met both assumptions.Kruskall Wallis H test -a non-parametric test-was used for the analyses on sub scale scores.

Findings
Findings obtained in the study are presented in two categories as findings related to demographic characteristics of parents with children with multiple disabilities and findings related to demographic characteristics of children with multiple disabilities

Findings Related to Demographic Characteristics of Parents with Children with Multiple Disabilities
This section presents the findings regarding the demographic characteristics of parents of children with multiple disabilities based on the following variables: gender, age, level of education, receiving support in taking care of the child, health problems, receiving psychological support.

Findings for Family Resilience Scale sub scale and total scores based on the gender of parents of children with multiple disabilities
Table 1 presents the findings related to the analyses on the four sub scales of the Resilience Scale based on the gender of parents of children with multiple disabilities.1 displays that statistically significant differences exist only between Challenge sub scale scores in terms of the gender of parents of children with multiple disabilities (U = 2185; p< ,05).Arithmetic mans of male parents ( ̅ = 65,462) was found to be significantly higher than the arithmetic mans of female parents ( ̅ = 59,044) in Challenge sub scale.No significant differences were detected for the other subscale scores and Family Resilience Scale total scores.

Findings for Family Resilience Scale sub scale and total scores based on the age of parents of children with multiple disabilities
Table 2 presents the findings related to the analyses on the four sub scales of the Resilience Scale based on the age of parents of children with multiple disabilities.No statistically significant differences were found in the comparisons for the participant scores obtained from the sub scales and from the scale in general based on the age of parents of children with multiple disabilities.

Findings for Family Resilience Scale sub scale and total scores based on the level of education of parents of children with multiple disabilities
Table 3 presents the findings related to the analyses on the four sub scales of the Resilience Scale based on the level of education of parents of children with multiple disabilities.Based on results presented in Table 3, no statistically significant differences were found in the sub groups based on the level of education of parents of children with multiple disabilities.

Findings for Family Resilience Scale sub scale and total scores based on the income level of parents of children with multiple disabilities
Table 4 presents the findings related to the analyses on the four sub scales of the Resilience Scale based on the income level of parents of children with multiple disabilities.Based on results presented in Table 4, No statistically significant differences were found in the comparisons for the participant scores obtained from the sub scales and from the scale in general based on the income level of children with multiple disabilities.

Findings for Family Resilience Scale sub scale and total scores based on whether parents of children with multiple disabilities receive support in taking care of their children
Table 5 presents the findings related to the analyses on the four sub scales of the Resilience Scale based on whether parents of children with multiple disabilities receive support in taking care of their children.Table 5 shows no statistically significant differences between sub groups for Resilience Scale total scores and scores obtained from the four sub scales when family sub groups were compared based on whether parents of children with multiple disabilities receive support in taking care of their children or not.

Findings for Family Resilience Scale sub scale and total scores based on parental health issues
Table 6 presents the findings related to the analyses on the four sub scales of the Resilience Scale based on parental health issues and problems.Table 6 shows no statistically significant differences between sub groups for Resilience Scale total scores and scores obtained from the four sub scales when family sub groups were compared based on whether parents of children with multiple disabilities had health problems or not.

Findings for Family Resilience Scale sub scale and total scores based on whether parents of children with multiple disabilities receive psychological support
Table 7 presents the findings related to the analyses on the four sub scales of the Resilience Scale based on whether parents of children with multiple disabilities receive psychological support.Table 7 shows no statistically significant differences between sub groups for Resilience Scale total scores and scores obtained from the four sub scales when family sub groups were compared based on whether parents of children with multiple disabilities receive psychological support or not.

Findings Related to Demographic Characteristics of Children with Multiple Disabilities
This section presents the findings related to the demographic characteristics of children (age, gender, type of disability) with multiple disabilities.

Findings for Family Resilience Scale sub scale and total scores based on the age of children with multiple disabilities
Table 8 presents the findings related to the analyses on the four sub scales of the Resilience Scale based on the age of children with multiple disabilities.Results of analyses presented in Table 8 show no statistically significant differences between sub groups for Resilience Scale total scores and scores obtained from the four sub scales based on the age of children with multiple disabilities.

Findings for Family Resilience Scale sub scale and total scores based on the gender of children with multiple disabilities
Table 9 presents the findings related to the analyses on the four sub scales of the Resilience Scale based on the gender of children with multiple disabilities.Results of analyses presented in Table 9 show no statistically significant differences between sub groups for Resilience Scale total scores and scores obtained from the four sub scales based on the gender of children with multiple disabilities.

Findings for Family Resilience Scale sub scale and total scores based on the type of disability for children with multiple disabilities
Table 10 presents the findings related to the analyses on the four sub scales of the Resilience Scale based on the type of disability for children with multiple disabilities.Results of analyses for type of disability presented in Table 10 show statistically significant differences only for Challenge sub scale when sun scale and total scale scores obtained from sub groups were compared.No statistical differences were detected between the scores obtained from the other sub scales and the total scale.Mann Whitney U test was conducted to identify which sub groups generated the difference for challenge sub scale.Results of Mann Whitney U test are presented in Table 11.Table 11 shows statistically significant differences in challenge sub scale between these sub groups: physical and mental disabilities/hearing and mental disabilities, physical and mental disabilities/visual and mental disabilities, visual and mental disabilities /physical and hearing disabilities.

Discussion
This study, conducted with the aim of identifying the resilience levels of parents with children with multiple disabilities by utilizing different variables, found that the demographic characteristics of parents of children with multiple disabilities (gender, age, level of education, income level, receiving support in taking care of the child, health problems, receiving psychological support) and variables related to the demographic characteristics of the children with multiple disabilities (gender, age, type of disability) had no impact on the general resilience levels of parents of children with multiple disabilities.However, significant differences were detected in this study on the challenge sub scale of Family Resilience Scale based on the gender of parent and the type of disability.
The study concluded that gender of the parent has no impact on the general resilience levels of parents of children with multiple disabilities.Plump's (2011) study which investigated the level of resilience for the parents of autistic children based on different variables found that gender of parents did not create differences in the general resilience levels of parents.Plump's findings support the findings of the current study.Another study by Kaner, Bayrakli and Guzeller (2011) that utilized the Family Resilience Scale developed by Kaner and Bayrakli (2010) which was used in this study to collect data examined whether the resilience perception of parents changed based on whether the children had mental disabilities and based on gender and age of parents.Results showed no statistical differences in total Family Resilience Scale based on gender of parents.Findings of Kaner, Bayrakli and Guzeller's (2011) study support the findings of the current study.Another study that supports the finding of the current study related to analysis based on gender of parents is the study conducted by Sojo and Guarino (2011).On the other hand, contrary to the findings of this study related to gender; Boyraz and Sayger (2011) and Lee, Chen and Tran (2008) found in their studies that males are more resilient compared to females in terms of general resilience levels.Using a different scale in the current study, cultural differences and different education levels of participants may have caused differences in research findings.
In this study, significant differences were found between the gender of parents with children with multiple disabilities and the challenge sub scale of the Family Resilience Scale.This difference implies that fathers are more resilient compared to mothers.Meral (2006) stated that fathers of children with multiple disabilities have concerns about financial issues and their anxiety increases as their children grow up.Fathers of children with multiple disabilities may display more characteristics related to resilience since they experience anxiety in financial matters.Fathers who provide for their families may think that they need to earn more in order to meet the needs of their children with multiple disabilities related to care and different areas (medicine, education, materials etc.).Hence, the fathers may be more invested in material challenges.
Current study found no significant differences in terms of the gender of parents of children with multiple disabilities in general resilience levels and the three sub scales of Family Resilience Scale (Self Efficacy, Commitment to Life and Control).The study by Kaner, Bayrakli and Guzeller (2011) reported that compared to fathers, mothers have more characteristics related to resilience in the Self Efficacy sub scale of Family Resilience Scale.The fact that no similar finding was obtained in the current study may be related to the regional differences of the sample (cultural upbringing) and differences in parents' level of education.
Current study found no significant differences in terms of the age of parents of children with multiple disabilities in general resilience levels and sub scales of Family Resilience Scale.Kaner, Bayrakli and Guzeller's (2011) study reported that Self Efficacy and Commitment to Life -sub scales of resilience-decreased with age.The findings of Kaner, Bayrakli and Guzeller (2011) do not support the findings of the current study.The difference may be related to the different characteristics of the sample groups used in both studies.
Current study found no significant differences in terms of level of education of parents of children with multiple disabilities in general resilience levels and sub scales of Family Resilience Scale.As a parallel with this study, studies conducted by Kaner, Bayrakli andGuzeller (2011) andTasdemir (2013) also reported no significant differences between parents' level of education and general resilience levels.Whether they are illiterate or highly educated, individuals may or may not cope with rather stressful situations.The education individuals receive may not affect their personal characteristics.It can be argued that resilience is a personal characteristic but may be increased as a result of various factors (social support etc.).There may be some situations that individuals have difficulty to deal with regardless of their level of education.For instance, parents who are university graduates may deeply experience pain upon learning that their children have multiple disabilities and may not be able to cope with this situation.On the other hand, illiterate parents may also experience deep pain about the same situation and may not cope with it either.In this sense, it can be argued that parents' level of education has no impact on general resilience levels of parents and the sub scales of Family Resilience Scale.Tasdemir's (2013) study which investigated the resilience levels of mothers of children with visual disabilities found that mothers' resilience levels increased along with the increase in their income levels and that increase in income levels created a significant increase in challenge sub scale of Resilience Scale.In their study on the parents of autistic children, Greeff and Van Der Walt (2010) reported that high socio-economic status has positive impact on the resilience factor.In their study, Mcconnell, Savage and Breitkreuz (2014) reported that improving financial problems positively affected parental behaviors and their moods.Mullins (1987) found that having a positive and supportive family, social and professional support environment empowered families and made them more resilient even though these families with children with mental disabilities who experienced learning difficulties experienced negative conditions such as low income levels or poverty.This study found no significant differences between income levels of parents of children with multiple disabilities and general resilience levels and sub scales of Family Resilience Scale.Difference in the findings obtained in the current study and the literature may have been the result of different measurement tools.It can also be argued that value judgments and resilience levels of parents who contributed to data were not affected by income levels, in other words; income level was not a determinant factor on resilience levels of parents with children with multiple disabilities.No significant differences were found between parents' general resilience levels and the four subscales of Family Resilience Scale in terms of the following variables: receiving support in taking care of the child, parental health problems, receiving psychological support and the age of children with multiple disabilities.Personal factors in the sample group may have contributed to this finding.
The study concluded that gender of children with multiple disabilities had no impact on parents' general resilience levels and the four subscales of Family Resilience Scale.Tasdemir's (2013) study found that the gender of children with visual disabilities did not affect mothers' general resilience levels however mothers with daughters had more resilience in challenge-commitment to life sub scales.Regardless of gender, children with multiple disabilities have similar needs.Gender does not dictate strength in character of independence.Needs and independent mobility of a female with hearing and speech disabilities and a male with physical and visual disabilities may be quite different from one another.In this sense, as found in this study, it can be argued that gender of children with multiple disabilities have no impact on parents' general resilience levels and the four subscales of Family Resilience Scale.
Current study determined significant differences in the Challenge sub scale of Family Resilience Scale in terms of type of disability.Findings show that parents of children with hearing and mental disabilities have more resilience compared to parents of children with physical and mental disabilities in the Challenge sub scale of Family Resilience Scale.This finding may be related to the fact that the children with hearing and mental disabilities may be physically independent like children with normal developmental patterns therefore children with hearing and mental disabilities are not physically dependent on parents.Hence, these children do not create extra care burden for their families and that may generate more resilience for parents in Challenge sub scale.Another finding of the study shows that compared to parent of children with visual and mental disabilities; parents of children with physical and mental disabilities are more resilient in Challenge sub scale of Family Resilience Scale.We know that human beings acquire a high proportion of information related to the world via their sense of sight.Loss of this sense and existence of mental disability in addition to this loss increase the care burden for the families and compared to parents of children with physical and mental disabilities, these parents become less resilient.It was also found that parents of children with physical and mental disabilities are more resilient in the Challenge sub scale of Family Resilience Scale compared to parent of children with visual and mental disabilities.Physical disabilities can be immediately observed by the environment but visual disabilities are not immediately observed and a high ratio of information about the world is obtained via sense of sight compared to sense of hearing.Having children with mental disabilities in addition to loss of sight increases care burden for families and therefore, compared to parents with children with visual and mental disabilities, parents with children with physical and hearing disabilities are more resilient the Challenge sub scale of Family Resilience Scale.
During one-on-one interviews conducted by the researcher with parents, parents commented on some of the scale questions (Item 6: "I like trying new things", Item 11: I am generally confident that I can carry out my plans when I make them", Item 36: "I do not waste my time") saying they experienced stress since they were not able to participate in social activities, could not make time for themselves and were deprived of many human needs as a result of spending all day with child care.Stress is a factor that can affect parents' resilience levels and it can be argued that opening free day care facilities where parents of children with multiple disabilities can leave their children by the hour to give them some time to spare will help reduce stress levels of these parents and therefore increase their resilience.
It was concluded that differences in sub group were not significant (p>0.05) for the following variables: gender and age of children with multiple disabilities, receiving support in taking care of the child with multiple disabilities, parental health status, receiving psychological support in taking care of the child with multiple disabilities, age, income level and level of education of parents of children with multiple disabilities.However, significant differences were observed in Challenge sub scale in terms of gender of parents and type of disability.In the light of these findings, following suggestions are provided: Studies to compare the resilience levels of parents of children with different type of disabilities can be conducted.
Family Resilience Scale used in this study was conducted on parents.Another study that compares the resilience levels of mothers and fathers can be designed with the scale used in this study.
Study sample was selected from various provinces in the Black Sea region.Studies to investigate whether cultural differences affect parents' resilience can be designed.
Studies can be undertaken to compare parental burnout and resilience levels for parents of children with multiple disabilities.

Table 1 .
Results of analysis for gender of parents of children with multiple disabilities

Table 2 .
Results of analysis for age of parents of children with multiple disabilities

Table 3 .
Results of analysis for level of education of parents of children with multiple disabilities

Table 4 .
Results of analysis for income levels (TL) of parents of children with multiple disabilities

Table 5 .
Analysis of the variance of parental support for the care of a child multiple disabilities.

Table 6 .
Results of analysis for health problems of parents of children with multiple disabilities

Table 7 .
Results of analysis for receiving psychological support in taking care of children with multiple disabilities

Table 8 .
Results of analysis for age of children with multiple disabilities

Table 9 .
Results of analysis for gender of children with multiple disabilities

Table 10 .
Results of analysis for type of disabilities for children with multiple disabilities

Table 11 .
Results of analysis for Challenge Sub Scale based on type of disabilities for children with multiple disabilities