Secondary Logo

Share this article on:

The Family Burdens and Hopelessness of Turkish Parents of Adolescents With Intellectual Disabilities

Karayagiz Muslu, Gonca, PhD, RN1; Coskun Cenk, Sibel, PhD, RN1

doi: 10.1097/rnj.0000000000000081
CURRENT ISSUES

Purpose This study was conducted to determine the hopelessness and family burden levels of parents who have children with intellectual disabilities.

Design This was a descriptive correlational study.

Methods The study was conducted at a specialized education and rehabilitation center in Fethiye, Turkey, using the Sociodemographic Data Form, the Beck Hopelessness Scale, and the Burden Assessment Scale for Families of Children With Intellectual Disabilities, and the study sample included a total of 95 parents of children with intellectual disabilities.

Findings A positive relationship was found between the total scores for hopelessness and the family burden including economic burden, perception of inadequacy, social burden, physical burden, emotional burden, and the required time (p < .05). The study found that the higher the level of family burden on parents, the more hopeless families felt.

Conclusion This study’s findings may help rehabilitation nurses to understand the hopelessness of parents and help them find appropriate resources to cope with their burden.

Clinical Relevance Nurses should be specialized in the field of rehabilitation and, as rehabilitation nurses, be included in providing integrated care, family education, and counseling services for disabled people in Turkey.

1 Nursing Department, School of Health, Mugla Sitki Kocman University, Fethiye, Mugla, Turkey

Correspondence: Gonca Karayagiz Muslu, Department of Nursing, Fethiye School of Health, Mugla Sitki Kocman University, Calica Mevkii, Karaculha, 48300 Fethiye, Mugla, Turkey. E-mail: goncamuslu@mu.edu.tr

Cite this article as: Karayagiz Muslu, G., & Coskun Cenk, S. (2018). The family burdens and hopelessness of turkish parents of adolescents with intellectual disabilities. Rehabilitation Nursing, 43(6), 351–362. doi: 10.1097/rnj.0000000000000081

Back to Top | Article Outline

Introduction

Intellectual disability (ID) is the most common developmental disability, and it is characterized by significant limitations both in intellectual functioning and adaptive behaviors that cover many social and practical skills for daily activities. Adaptive skills refer to daily life tasks, such as communicating with others or being able to take care of one’s own needs (Carulla et al., 2011). The severity of the condition ranges from mild to profound. Individuals with levels of IQ between 50 and 69 are considered to have mild intellectual disabilities, those with levels of IQ between 36 and 49 are considered to have moderate intellectual disabilities, and those with levels of IQ between 20 and 35 are considered to have severe intellectual disabilities (Boat & Wu, 2015). The World Health Organization (n.d.) reported that over one billion people live with any type of a disability, which corresponds to approximately 15% of the world’s population. Turkey Population and Housing Census 2011 revealed that, of the overall population, 6.9% have at least one type of disability (Nüfus ve Konut Araştirmasi, 2011). According to the Turkish Statistical Institute’s 2002, Turkish Disability Survey, the total disability proportion in the overall population is 12.29% and the proportion of people with orthopedic, seeing, hearing, speaking, and intellectual disability is 2.58%. No recent national study was found in the literature (Turkish Statistical Institute-TurkSTAT, [n.d.] ; World Health Organization & World Bank, 2011).

Disabilities affect not only children but also families in physical, emotional, and social aspects. The birth of a child with an ID, particularly while a healthy infant was expected and all hopes and plans for the future were based on this expectation, causes the family members to experience major changes in their social circles, expectations, plans, work lives, and financial conditions (Akandere, Acar, & Baştuğ, 2009 ; Dereli & Okur, 2008 ; Kirbaş & Özkan, 2013 ; Manor-Binyamini, 2011 ; Şahin, 2010 ; Zembat & Yildiz, 2010). A study conducted in 11 European countries found that families of children with disabilities were more unstable, were afraid to have another child, and had many economic problems. Having a child with disability can lead to the adoption of traditional gender roles by parents not only because the caregiver role cannot be easily and effectively implemented but also because the amount of care that should be provided to a child with disability is usually higher. The percentage of mothers who are reported to be employed is smaller if there is a child with disability in the family, and the percentage of women who look after their family is higher (Giulio, Philipov, & Jaschinski, 2014).

The uncertainty about the future of the child, the permanence of the disability, and the intense stress can lead parents to feel pessimistic and hopeless (Ceylan & Aral, 2007 ; Karadağ, 2009). Hope means having positive thoughts for the future. Hope supports patients’ improvement and strengthens their coping skills. It is associated with their psychosocial and physical well-being. On the contrary, hopelessness is characterized by the “negative feelings and expectations for the future” and “loss of motivation.” Hopelessness leads to negative perceptions of new situations and reduces the effectiveness of coping strategies, which results in the loss of meaning in life (Ceylan & Aral, 2007). Abramson, Alloy, and Metalsky (1989) advanced the theory of hopelessness depression. In this theory, hopelessness is considered to be the state in which undesirable results rather than those that are desirable are expected and nothing can be done to change these results. Increased hopelessness and despair along with the expectation of negative results and generalization of these negative feelings to all aspects of life lead to learned hopelessness, which results in the emergence of depression symptoms (Şahin, 2010). Previous studies emphasized that parents of children with disabilities faced many negative emotions, such as depression, stress, emotional burnout, and anxiety (Coşkun & Akkaş, 2009 ; Dereli & Okur, 2008 ; Duygun & Sezgin, 2003 ; Keskin, Bilge, Engin, & Dülgerler, 2010 ; Softa, 2013 ; Uğuz, Toros, İnanç, & Çolakkadioğlu, 2004 ; Yildirim, Aşilar, & Karakurt, 2012). Although hopelessness levels of parents who have children with disabilities are known to be high and Karadağ (2009) and Ceylan and Aral (2007) described the negative effects on families in their studies, little is known about the effects on family burden in Turkey.

Turkey is a developing country, and the legal framework that governs the accessibility, employment, care, and social security of disabled people was identified in the Constitution and in the Turkish Disability Act. The goal of this act is to facilitate disabled people’s development in all aspects of life and promote their full involvement in social life. Organizations that were required to coordinate these services were established within this act. The education and rehabilitation procedures are planned and implemented by special education institutions of the government or special education institutions that are available to people depending on their disability levels (Şişman, 2011). In Turkey, there are 262,818 people with disabilities at special education and rehabilitation centers, 20,108 students in private schools of special education, and 211,763 students in public schools (Meral & Turnbull, 2014). Nurses are not present in specialized education and rehabilitation centers now in Turkey. Although some institutions and organizations are responsible for the socialization, education, and rehabilitation of children with ID, families, as caregivers, assume most of the responsibilities on this issue (Şişman, 2011). However, having a child with ID and being responsible for taking care of them can lay multiple burdens on families (Datta, Russell, & Gopalakrishna, 2002). Here, family burden refers to “all difficulties and challenges experienced by families as a consequence of someone’s illness” (Sales, 2003, p. 34). The idea of burden covers emotional, physical, social, and economic problems of caregivers that result from the provision of care (Chou, 2000). Mothers are more affected by the burden laid on by families due to having a child with disability, therefore having to bear more responsibility than fathers to meet the child’s needs. This is also because they have to spend most of their time and energy on caring about the child’s health problems and coping with the stigmas attached to having a child who is considered by the society to be disadvantaged and needy (Irazábal et al., 2012). This case is related to various factors, such as children’s problematic behavior, disability levels and the presence of coexisting diseases (Irazábal et al., 2012), the families’ income levels (Ghandour, Hirai, Blumberg, Strickland, & Kogan, 2014 ; Parish, Rose, Dababnah, Yoo, & Cassiman, 2012 ; Xiong et al., 2011), the quality of their life, social support (Carona, Crespo, & Canavarro, 2013), and the expectations (Kausar, Jevne, & Sobsey, 2003).

Cultural and ethnic factors determine the perception of burden and adaptive responses of families toward a child with disability, and this case varies from one country to another (Datta et al., 2002). In Turkey, no studies were found that analyzed the family burden and hopelessness levels of the parents who had children with ID. The determination of family burden and hopelessness levels and the affecting factors will contribute in maintaining family-centered care for children. Because rehabilitation nurses have an important role in the lives of people with disabilities, they play a role in ensuring their psychosocial adaptation to disability, increasing the coping skills of their parents, reducing hopelessness, and improving their functionality and the quality of their life (Mauk, 2012). Implementing a planned nursing process for the areas stated above and defining the family burden in a way that fosters hope for the future will contribute to this care and complement the ongoing family-centered care for children with ID (Sari, 2007). With this in mind, the present study aimed to determine the levels of hopelessness and family burden on parents of children with ID, and therefore, the following questions were asked:

  • Which factors affect the family burden levels of parents with ID children?
  • Which factors affect the hopelessness levels of parents with ID children?
  • Is there a relationship between the levels of hopelessness levels and family burdens of the parents who have children with ID?
Back to Top | Article Outline

Method

Design

This study was conducted to determine the levels of hopelessness and family burden on parents with ID children using a descriptive survey design.

Back to Top | Article Outline

Study Population

This study was carried out between January and May 2012 at one of the specialized education and rehabilitation centers in the Fethiye District of Muğla Province, where, according to the Fethiye Counseling and Research Centre data, there are 1,624 people with disabilities ranging from intellectual, physical, and learning disabilities to hyperactivity, attention-deficit, sensory disorder and autism (http://www.fethiye.bel.tr/dosya/2015_2019_stratejik_plan.pdf), three Specialized Education and Rehabilitation Centers for people with disabilities, and a government primary school that provides special education to such people. The research was conducted in one of the Specialized Education and Rehabilitation Center in Fethiye. A total of 300 people with intellectual, physical, or physical-mental deficiency, pervasive developmental disorder, speech disorder, hearing disability, visual disability, or learning disability receive service in the specialized education and rehabilitation center. Half of them have intellectual or physical-intellectual disability. The inclusion criteria were being caregivers of children with intellectual disabilities whose IQ levels were found to be less than 70 and voluntarily participating in the study. The exclusion criterion was having any psychiatric morbidity. Of those 150 parents, 105 (70%) completed the survey forms. Ten forms were incomplete, and therefore, they were excluded from the study. There were no differences in terms of sociodemographic characteristics between the parents who were included in the study and those who were not. As a result, the forms of 95 parents (70 mothers, 25 fathers) were analyzed. The mean age of the children with ID was 15.44 ± 9.12 (min–max = 2–24). Both parents of a child were not eligible for the study. Thus, one parent per family was allowed to participate.

Back to Top | Article Outline

Data Collection

The Sociodemographic Data Form, the Beck Hopelessness Scale (BHS), and the Burden Assessment Scale for Families were used as data collection tools in the study.

Sociodemographic Data Form was developed by the researchers to collect the sociodemographic data from the child and the family. The form is used to inquire about sociodemographic characteristics of individuals with ID, such as age, gender, comorbidity, parental age, educational levels, occupation, number of children, and family income. Levels of disability were learned by asking the children’s parents about their children’s medical reports.

BHS was developed by Beck, Weissman, Lester, and Trexler (1974) to measure the expectations adolescents and adults have about the future. The scale has 20 yes or no questions. Questions 2, 4, 7, 9, 11, 12, 14, 16, 18, and 20 are given 1 point if they are answered affirmatively, and Questions 1, 3, 5, 6, 8, 10, 13, 15, and 19 are given 1 point if they are answered negatively. The scale yields scores between 0 and 20, indicating the levels of hopelessness. Higher scores indicate higher levels of hopelessness or negative expectations for the future. The Turkish validity and reliability study was carried out by Seber (1991) and Durak (1994). The original factor structure of the scale included three subscales: expectations and feelings for the future, loss of motivation, and hope. The Turkish validity and reliability study supported the use of the original three factors. In this validity and reliability study, the Cronbach’s alpha value was found to be .78 for the “expectations and feelings for the future” factor, .72 for the “loss of motivation” factor, and .72 for the “hope” factor. The questions on the scale are categorized into three subscales. Questions 1, 3, 7, 11, and 18 refer to feelings and expectations for the future, Questions 2, 4, 9, 12, 14, 16, 17, and 20 refer to loss of motivation, and Questions 5, 6, 8, 10, 13, 15, and 19 refer to hope. The total score yields the hopelessness score (Durak, 1994).

The Burden Assessment Scale for Families of Children With Intellectual Disabilities (BASF-ID) was developed to determine the family burden on families who have children with intellectual disabilities. The scale was developed in Turkish language, and it was psychometrically tested by Sari and Başbakkal (2008). The scale has 43 items in six subscales: economic burden (6 items), perception of deficiency (8 items), social burden (6 items), physical burden (5 items), emotional burden (11 items), and time required (7 items). The items of the Likert-type scale are scored as never (1), rarely (2), sometimes (3), often (4), and always (5). The total scale score ranges from 43 to 215. Higher numbers indicate greater burden for each subscale. Cronbach’s alpha reliability coefficients of the subscales of the Burden Assessment Scale for Families were found to be .89 for the economic burden subscale, .84 for the perception of deficiency subscale, .85 for the physical burden subscale, .82 for the social and emotional burden subscales, and .72 for the time required subscale. The Cronbach’s alpha coefficient of reliability of the scale was found to be .92, the repeat test correlation value was found to be .98, and the cutoff was 97 points. On the basis of these results, people who obtained a score higher than 97 on the Burden Assessment Scale for Families were considered to have a burden and those who obtained a score of 97 or lower were considered not to have a burden Sari and Başbakkal (2008).

Back to Top | Article Outline

Procedure

The parents who participated in the research were informed about the aim of this research. Because of the fact that fathers were at work during the day, mothers were largely responsible for taking the children to the centers and bringing them back home. Therefore, the researcher went to the centers on the days specified by the education centers and met the disabled children’s parents who had agreed to participate in the study and complete the survey forms. The aim of the research and instructions for the surveys were explained to the parents who were ensured that the research data would be kept confidential and used only by the researchers. Data collection forms were distributed to the parents in the waiting room while their children were receiving service, and the parents answered all questions in 15–20 minutes. The data collection forms were mostly completed by the mothers, even in the questions regarding the sociodemographic characteristics of both parents. Mothers also entered the sociodemographic information about the fathers.

Back to Top | Article Outline

Data Analysis

The data were assessed using the SPPS 15.0 software package. In the assessment of the variables that showed normal distribution, the Student’s t test was used for binary variables, and the analysis of variance (ANOVA) was used for multiple variables. When the variables did not have a normal distribution, the Mann–Whitney U test was used for binary variables, and the Kruskal–Wallis ANOVA was used for multiple variables. The threshold for significance was .05. In cases where a significant difference was found in the Kruskal–Wallis ANOVA for the multiple comparisons, the Mann–Whitney U test with Bonferroni correction was applied to determine the groups from which this difference was derived. Using the Bonferroni correction meant that the Mann–Whitney U test results were assessed using a significance level of .016. Pearson’s correlation coefficient was used to examine the correlations between hopelessness and family burden.

Back to Top | Article Outline

Ethical Approval

Prior to the study, written permission was obtained from the Scientific Ethics Committee of a university and from the institution where the study was conducted. Verbal consent was obtained from the parents for the data collected. Data collection forms did not include personal information, and the identity information of the participants was kept confidential.

Back to Top | Article Outline

Findings

Sociodemographic Characteristics of Children With ID and Their Families

The sample consisted of 70 mothers and 25 fathers of 95 children. The mean age of the mothers in the study was 41.70 ± 10.75. Most of them had completed primary school and were housewives. It was found that 83.2% of the fathers had completed primary school and 88.4% were employed. Of the parents, 53.7% stated that their economic status was poor, 21.1% had four or more children, and 11.6% had more than one child with disability. The characteristics of the sample are shown in Table 1.

Table 1

Table 1

The mean age of the children with ID was 15.44 ± 9.12 (min–max = 2–24). It was found that 61.1% of the children with ID were male, and 53.7% had both intellectual and physical disabilities. Of them, 24.2% had mild ID, 45.3% had moderate ID, and 30.5% had severe ID. The characteristics of the children are shown in Table 2.

Table 2

Table 2

Back to Top | Article Outline

Variables Affecting the Family Burden for Families of Children With ID

The mean score of the parents was found to be 136.11 (SD = 36.71; min–max = 43–215) for the total BASF-ID. The scores were 19.30 (SD = 6.23; min–max = 6–30) for the economic burden subscale, 31.76 (SD = 7.78; min–max = 8–40) for the perception of deficiency subscale, 16.01 (SD = 7.11; min–max = 6–30) for the social burden subscale, 15.89 (SD = 6.24; min–max = 5–25) for the physical burden subscale, 30.30 (SD = 12.05; min–max = 11–55) for the emotional burden subscale, and 22.83 (SD = 7.16; min–max = 7–35) for the time required subscale. Higher number indicates greater burden for each subscale. A total of 83.2% of the parents had perceived a high family burden (total BASF-ID score was higher than 97).

The sociodemographic characteristics and BASF-ID scores of the parents are shown in Table 3. A statistically significant difference was found between the disability level of children and the mean score of the total BASF-ID and social burden, physical burden, and time required subscales. The Mann–Whitney U test with Bonferroni correction showed no difference between the mean scores of the parents of children with moderate ID and the parents of children with severe ID. However, it showed a statistically significant difference between the parents of children with mild ID and the parents of children with moderate ID (p < .002) and between the parents of children with mild ID and the parents of children with severe ID (p < .002). The levels of social and physical burden and the required time of the parents of children with mild ID were lower than those of the parents of children with moderate and severe ID. The parents’ gender differences were also examined. The mean social and emotional subscores were statistically higher for mothers than for fathers, whereas no difference was found between mothers and fathers on the other BASF-ID subscales (p > .05). The mean scores on the social and physical burden subscales and total levels of family burden of parents who had more than one children with ID were higher than those of parents who had one child with ID (p < .05). A negative relationship was found between the age of the children with ID and mean scores on the economic burden, physical burden, and time required subscales. As the age of the children with ID increased, the levels of their parents’ economic and physical burden and time required were found to decrease. No statistically significant differences were found in scores on the BASF-ID and its subscales according to the demographic variables including parent’s age, children’s gender, family income level, and type of disability (p > .05).

Table 3

Table 3

Back to Top | Article Outline

Variables Affecting the Hopelessness of the Families of Children With ID

The BHS score and subscale scores of the parents are shown in Table 4 based on the parents’ sociodemographic characteristics. The Mann–Whitney U test indicated that the hopelessness level was significantly higher for parents who had more than one child with ID than for those who had only one child with ID (p < .05). No significant difference was found between the total and subscale mean scores of the parents according to characteristics of the children with ID, such as their gender, age, disability level, and disability type (p > .05). No significant differences were also found between the total and subscale mean scores of the parents according to their sociodemographic characteristics, such as their age, gender, and income level (p > .05).

Table 4

Table 4

Back to Top | Article Outline

Relationship Between Family Burden, Family Burden Subscales, and Hopelessness

The relationship between the Burden Assessment Scale for Families and the Hopelessness Scale was examined using Pearson correlation analysis. A positive significant relationship was found among total scores of hopelessness and economic burden, perception of inadequacy, social burden, physical burden, emotional burden, and time required (Table 5). The higher the levels of parents’ economic, social, physical, and emotional burden as well as the time they required and perception of inadequacy, the more they felt hopeless.

Table 5

Table 5

Back to Top | Article Outline

Discussion

Most of the studies demonstrated that the levels of burden on families of children with disability are greater than those of burden that are on families who have a child showing normal development (Xiong et al., 2011). In cases where the ID is irreversible and irrecoverable, the reasons for this burden include the limitations placed on the social lives of families, social stigmas, economic difficulties, and the physical care requirements of the child (Sari, 2007). There are also studies that showed the positive aspects of being the caregiver of a child with disability. In these studies, particularly those that are of a qualitative type, the parents stated that they felt a greater capacity to achieve their goals, an increased ability to see life from other people’s points of view, and a greater degree of compassion and strength (Green, 2007 ; Kausar et al., 2003). In Turkish society, especially in which there is a “fatalist” outlook on life, parents may believe that having a child with disability is the will of God, and in the afterlife, they would enjoy ease after undergoing a suffering period in this life with these children (Meşe, 2013). Because they regard the condition of their children as something inevitable, considering it to be the will of God, but yet something afflictive, this fatalist outlook may allow them to come into terms with the condition of their children and not consider them as burdens. Despite all this, this study found that 83.2% of the parents perceived high levels of family burden. Many factors, such as families’ acceptance of their children with ID, strength to cope, sociocultural pressure, guilt, sense of failure, or feelings of embarrassment can increase family burden.

This study found that demographic variables, such as the gender of the child with ID and the ages of the parents, did not influence the levels of hopelessness and family burden on the parents. The previous studies showed that the educational levels of the parents affected hopelessness and family burden more than age. It is believed that a higher educational level leads to an increase in awareness of the situation and the competencies/deficiencies of the children and better enables parents to access the governmental and social support that serves to facilitate their child’s acceptance, which, in turn, decreases their hopelessness levels (Konukbay & Arslan, 2015). It was surprising in our study to find that the level of hopelessness and family burden did not change according to the gender of the child and the ages of parents, as in traditional societies whereas (in Turkey), different expectations often surround the birth and raising of female and male children. In Turkish society, having a “male” child is important for the continuity of the lineage. Therefore, families find it more difficult to accept disabilities in male children because this situation is considered to be a threat that can continue, and therefore, it has the potential to negatively impact the families’ hopes for the future. If the family member with disability is a “female,” then the families are more worried and anxious about the issues, such as sexual abuse and rape. All of these issues increase the levels of social and emotional burden of families (Meşe, 2013). The previous studies indicated that family members experienced greater stress and anxiety as their children grew up due to the increase in their expectations and the beginning of new developmental stages, such as sexual development or starting school (Konukbay & Arslan, 2015). In the present study, the decrease in the economic and physical burden and time required by the caregiver as the age of the child increased could be connected to the idea that the children received educational and social support as a result of attending a private teaching and rehabilitation center and did show signs of success in reaching some developmental stages.

It was determined in the present study that the levels of hopelessness and family burden did not change according to the income level of the family. However, most of the previous studies showed just the opposite, and it was stated that, as the level of income of the family decreased, the family burden, and especially the economic burden, correspondingly increased (Ghandour et al., 2014 ; Keskin et al., 2010 ; McManus et al., 2011 ; Parish et al., 2012 ; Ramisch, Pavkov, Negash, & Wetchler, 2009 ; Xiong et al., 2011). Xiong et al. (2011) reported that in China the healthcare expenses of children with disabilities were higher than those of children with normal development. The provision of financial support for these kinds of expenses is a frequently implemented policy measure in many countries. Family benefits for families of children with disability are supplemented with a diverse set of other financial aids. The absence of a significant difference in the income levels of the families in the present study could be attributed to the fact that their income levels were close to each other and they received money from the government to care for their children with disability.

The present study found that levels of hopelessness and the parents’ family burdens did not change according to the individual’s type of disability. A previous study showed that behavior or communication problems of the children led to difficulties in adaptation to social life and they could increase the amount of stress and anxiety families experienced (Akandere et al., 2009 ; Wei & Yu, 2012). A study by Irazábal et al. (2012) revealed that the family burden of caregivers was greater for those with individuals who had ID along with other mental health problems due to the fact that the functional deficiencies of individuals were greater. The levels of family burden on parents who have a child with ID as well as a physical disability was considered to be greater than those of the family burden on parents of a child with ID only. The reason why no difference was found in the present study could be that the families accepted their children’s condition and the government provided the children with education at a rehabilitation center and financial support.

Although no significant difference was found in the present study between the levels of hopelessness of parents according to the severity of ID, the levels social and physical burden and time requirement of parents who had a child with mild ID were found to be lower. Datta et al. (2002) reported that the age of the children was more determinative than their disability or their levels of intelligence. This finding was based on the results showing that the families’ expectations of the child increased with age. When the child could not meet these expectations, the family burden increased significantly. Irazábal et al. (2012) found that there was a relationship between the family burden and functional deficiency. The lower the level of intellectuality, the lower the participation of the individual in society. When the individual’s capacity to act independently and their ability to participate in and communicate within the society are assumed to decrease, the task of meeting the special care requirements of each specific individual becomes more difficult as the level of their intelligence decreases. In this situation, the caregiver’s burden increases, and this affects their social life since they are required to spare more time for the physical care of the children with disability.

The present study determined that the levels of social and emotional burden on fathers were lower than those that were on mothers. In Turkish culture, it is generally the mother’s primary responsibility to take care of children. Although mothers fulfill duties of care at home, fathers are responsible for earning the family income. Most of the fathers in the present study were working. Fathers’ working is important in terms of the continuity of social life, whereas mothers’ role in assuming the ongoing home care of a child with disability increases her experience of social isolation, and thereby, her social burden becomes greater.

The levels of parents’ physical burden, social burden, total family burden, and hopelessness were found to increase as the number of their children with ID increased. When the number of children with ID increases, parents’ physical burden increases, and social life becomes restricted due to their increased childcare responsibilities, which increases their social isolation. Parents may become more concerned about their children’s future and more pessimistic. They may ask themselves what will happen to their children when they become unable to take care of them. Because of increased care burden, having more than one child with ID is more difficult.

The present study revealed that, as the levels of the parents’ hopelessness increased, their perceptions of deficiency; time requirements; and economic, social, physical, and emotional burdens also increased. Similarly, Sivrikaya and Tekinarslan (2013) found that, as the economic burden, emotional burden, and time requirement of mothers increased, their pessimism also increased. The study conducted by McConkey, Truesdale-Kennedy, Chang, Jarrah, and Shukri (2008) on Northern Irish, Syrian, and Taiwanese mothers of children with disability showed that the mental health of mothers was poor, the stress related to the child was excessive, and the family functions were disrupted. They concluded that social support would possibly improve the well-being of the mothers. Şahin (2010) found a significant relationship between the levels of depression and hopelessness in mothers of children with disability and observed that, as the mothers’ feelings of depression increased, their feelings of hopelessness also increased. The increase in the family burden can be attributed to the fact that a child who has disabilities does not have sufficient independent life skills, has communication difficulties, and is not able to benefit sufficiently from societal resources. For families, particularly those who are unable to receive social and professional support, the increase in this burden can be the cause of a decrease in hope for the future of the family.

The present study had some limitations. It included only the parents of children with ID; no comparisons could be made between the levels of hopelessness and family burden experienced by the parents of the normal, healthy children and by the parents of children with ID. Furthermore, only one of the parents was able to be assessed in this study because it was not possible to include both the mothers and the fathers of the children with ID. Including both parents in this study could give results that would guide and be associated with different kinds of support provided to parents with different social gender roles. The results are limited by cross-sectional design, which precludes inferences about causality. Longitudinal data are required to evaluate the effect of these risk factors on caregiver burden over time. The clinical sample of the present study was collected at only one rehabilitation center, which could be related to some selection bias and lack of heterogeneity in socioeconomic status. Furthermore, this sample mainly included mothers (as primary caregivers) that were selected nonrandomly. Finally, because the sample size was small, repeating the study with a larger sample could increase its generalizability.

Back to Top | Article Outline

Key Practice Points

  • Families play a fundamental role in supporting and ensuring the development of their children with intellectual disability.
  • Mothers of younger children with more severe intellectual impairment and mothers who had more than one child with ID perceived greater levels of burden than those of the others.
  • While the levels of family burden on parents increased, their levels of hopelessness also increased.
  • Mothers had greater burdens than fathers.
  • Rehabilitation nurses should be aware of the psychosocial requirements of parents who have a child with ID.
Back to Top | Article Outline

Conclusion and Recommendations

Families play a fundamental role in supporting and ensuring the development of their children with ID. A crucial element of the development of all children is to be part of family life and to interact with other children. This study found that mothers of younger children with more severe intellectual impairment and mothers who had more than one child with ID perceived greater levels of burden than those of the others. Moreover, as the levels of family burden on parents increased, their levels of hopelessness also increased.

The nurse’s role in the rehabilitation of people with ID is crucial. The goal of rehabilitation nursing is to assist individuals with disabilities and/or chronic diseases to achieve maximum functionality and maintain it. Rehabilitation nurses also help patients adapt to an altered lifestyle and provide a therapeutic environment for these patients’ and their family’s development (Mauk, 2012). Counseling and supportive services for the parents of children with disabilities are limited. Today, no nurses are available at specialized education and rehabilitation centers in Turkey. In Turkey, nurses should be specialized in the field of rehabilitation and, as rehabilitation nurses, be included in providing integrated care, family education, and counseling services for disabled people. Rehabilitation nurses should be aware of the psychosocial requirements of parents who have a child with ID who is in need of continuous health care. These parents’ burdens should be identified at all stages of primary, secondary, and tertiary health services and taken into consideration in all practices.

This study showed that mothers had greater burdens than fathers. The creation of family support groups at rehabilitation centers to ensure the participation of other family members in the care and education of children with ID and the inclusion of relatives along with all family members may reduce mothers’ burdens. These support groups can be managed by nurses. The organization of social activities such as film screening, theater, and sports activities for the families of children with severe ID or for the families who have more than one child with ID and the inclusion of all healthcare professionals may reduce the levels of families’ social burden and time requirement. Nurses can affect the psychosocial requirements of families by providing counseling services for coping techniques and for the care or treatment of children with ID. Monitoring the state of mind of the families of children with ID and encouraging them to receive psychological counseling and guidance when necessary may help to reduce their hopelessness.

Back to Top | Article Outline

References

Abramson L. Y., Metalsky G. I., & Alloy L. B. (1989). Hopelessness depression: A theory-based subtype of depression. Psychological Review, 96, 358–372.
Akandere M., Acar M., & Baştuğ G. (2009). Zihinsel ve fiziksel engelli çocuğa sahip anne ve babalarin yaşam doyumu ve umutsuzluk düzeylerinin incelenmesi [Investigating the hopelessness and life satisfaction levels of the parents with mental disabled child]. Selçuk Üniversitesi Sosyal Bilimler Enstitüsü Dergisi, 22, 23–32. (In Turkish)
Beck A. T., Weissman A., Lester D., & Trexler L. (1974). The measurement of pessimism: The hopelessness scale. Journal of Consulting and Clinical Psychology, 42, 861–865.
Boat T. F., & Wu J. T. (2015). National Academies of Sciences, Engineering, and Medicine. Mental disorders and disabilities among low-income children. Washington, DC: The National Academies Press.
Carona C., Crespo C., & Canavarro M. C. (2013). Similarities amid the difference: Caregiving burden and adaptation outcomes in dyads of parents and their children with and without cerebral palsy. Research in Developmental Disabilities, 34, 882–893.
Carulla L. S., Reed G. M., Vaez-Azizi L. M., Cooper S. A., Leal R. M., & Bertelli M. (2011). Intellectual developmental disorders: Towards a new name, definition and framework for “mental retardation/intellectual disability” in ICD-11. World Psychiatry, 10, 175–180.
Ceylan R., & Aral N. (2007). Hopelessness levels of mothers with and without disabled children. Pakistan Journal of Social Sciences, 4, 746–750.
Chou K. R. (2000). Caregiver burden: a concept analysis. J Pediatr Nurs, 15, 398–407.
Coşkun Y., & Akkaş G. (2009). Engelli çocuğu olan annelerin sürekli kaygi düzeyleri ile sosyal destek algilari arasindaki ilişki [The relation which between anxiety level of the mothers who have disabled children and social support]. Ahi Evran Üniversitesi Kirşehir Eğitim Fakültesi Dergisi (KEFAD), 10, 213–227.
Datta S. S., Russell P. S. S., & Gopalakrishna S. C. (2002). Burden among the caregivers of children with intellectual disability: Associations and risk factors. Journal of Learning Disabilities, 6, 337–350.
Dereli F., & Okur S. (2008). Engelli çocuğa sahip olan ailelerin depresyon durumunun belirlenmesi [Determination of the depression level of families having a handicapped child]. Yeni Tip Dergisi, 25, 164–168. (In Turkish)
Durak A. (1994). Beck Umutsuzluk Ölçeği (BUÖ) geçerlik ve güvenirlik çalişmasi [A study on the validity and reliability of the Beck’s Hopelessness Scale]. Türk Psikoloji Dergisi, 9, 1–11. (In Turkish)
Duygun T., & Sezgin N. (2003). Zihinsel engelli ve sağlikli çocuk annelerinde stres belirtileri, stresle başaçikma tarzlari ve algilanan sosyal desteğin tükenmişlik düzeyine olan etkisi [The effect of stress symptoms, coping styles and perceived social support on burnout level of mentally handicapped and healthy children’s mothers]. Türk Psikoloji Dergisi, 18, 37–52. (In Turkish)
Ghandour R. M., Hirai A. H., Blumberg S. J., Strickland B. B., & Kogan M. D. (2014). Financial and nonfinancial burden among families of CSHCN: Changes between 2001 and 2009–2010. Academic Pediatrics, 14, 92–100.
Giulio P. D., Philipov D., & Jaschinski I. (2014). Families with disabled children in different European countries. Retrieved from http://www.familiesandsocieties.eu/wp-content/uploads/2014/12/WP23GiulioEtAl.pdf
Green S. E. (2007). “We’re tired, not sad”: Benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64, 150–163.
Hosseinkhanzadeh A. A., Esapoor M., Yeganeh T., & Mohammadi R. (2013). A study of the family cohesion in families with mentally disable children. Procedia—Social and Behavioral Sciences, 84, 749–753.
    Irazábal M., Marsà F., García M., Gutiérrez-Recacha P., Martorell A., Salvador-Carulla L., & Ochoa S. (2012). Family burden related to clinical and functional variables of people with intellectual disability with and without a mental disorder. Research in Developmental Disabilities, 33, 796–803.
    Karadağ G. (2009). Engelli çocuğa sahip annelerin yaşadiklari güçlükler ile aileden algiladiklari sosyal destek ve umutsuzluk düzeyleri [Hardships undergone by mothers with handicapped children, hopelessness and social support from family]. TAF Preventive Medicine Bulletin, 8, 315–322. (In Turkish)
    Kausar S., Jevne R. F., & Sobsey D. (2003). Hope in families of children with developmental disabilities. Journal on Developmental Disabilities, 10, 35–45.
    Keskin G., Bilge A., Engin E., & Dülgerler Ş. (2010). Zihinsel engelli çocuğu olan anne-babalarin kaygi, anne-baba tutumlari ve başa çikma stratejileri açisindan değerlendirilmesi [The evaluation of anxiety, parental attitude and coping strategy in parents of children with mental retardation]. Anadolu Psikiyatri Dergisi, 11, 30–37. (In Turkish)
    Kirbaş Ö., & Özkan H. (2013). Down sendromlu çocuklarin annelerinin aile işlevlerini algilama ve sosyal destek düzeylerinin değerlendirilmesi [Assessment of the family function perception and social support levels of mothers of the children with Down syndrome]. İzmir Dr. Behçet Uz Çocuk Hast. Dergisi, 3, 171–180. doi:10.5222/buchd.2013.171. (In Turkish)
    Konukbay D., & Arslan F. (2015). The analysis of hopelessness levels and problem solving skills of parents with the disabled children. International Journal of Caring Sciences, 8, 344–355.
    Manor-Binyamini I. (2011). Mothers of children with developmental disorders in the bedouin community in Israel: Family functioning, caregiver burden, and coping abilities. Journal of Autism and Developmental Disorders, 41, 610–617.
    Mauk L. M. (2012). Rehabilitation nursing: A contemporary approach to practice. Sudbury, MA: Jones & Bartlett Learning.
    McConkey R., Truesdale-Kennedy M., Chang M. Y., Jarrah S., & Shukri R. (2008). The impact on mothers of bringing up a child with intellectual disabilities: A cross-cultural study. International Journal of Nursing Studies, 45, 65–74.
    McManus B. M., Carle A., Acevedo-Garcia D., Ganz M., Hauser-Cram P., & McCormick M. (2011). Modeling the social determinants of caregiver burden among families of children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 116, 246–260.
    Meral B. F., Turnbul H. R. (2014). Analysis of special education policy in Turkey and United States: Improving Turkey's policy for students with intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 11, 165–175.
      Nüfus ve Konut Araştirmasi. (2011). [Population and housing census]. Retrieved from http://www.tuik.gov.tr/Kitap.do?metod=KitapDetay&KT_ID=11&KITAP_ID=276
        Parish S. L., Rose R. A., Dababnah S., Yoo J., & Cassiman S. A. (2012). State-level income inequality and family burden of U.S. families raising children with special health care needs. Social Science & Medicine, 74, 399–407.
        Ramisch J. L., Pavkov T., Negash S., & Wetchler J. (2009). Parental burden among families with children having disabilities: The role of ADHD and mental health disorders. NADD Bulletin, 12, 67–73.
        Şahin C. (2010). Examination of the correlation between depression and hopelessness levels in mothers of children who attend rehabilitation centers. Procedia—Social and Behavioral Sciences, 2, 5100–5103.
        Sales E. (2003). Family burden and quality of life. Quality of Life Research, 12(Suppl. 1), 33–41.
        Sari H. Y. (2007). Zihinsel engelli çocuğu olan ailelerde aile yüklenmesi [Family burden on families of children with intellectual disability]. Cumhuriyet Üniversitesi Hemşirelik Yüksekokulu Dergisi, 11, 1–7. (In Turkish)
        Sari H. Y., & Başbakkal Z. (2008). Zihinsel yetersiz çocuğu olan aileler için aile yükü değerlendirme ölçeğinin geliştirilmesi [Developing a “Family Burden Assessment Scale” for the families of children with intellectual disability]. Atatürk Üniversitesi Hemşirelik Yüksekokulu Dergisi, 11, 86–95. (In Turkish)
        Seber G. (1991). Beck umutsuzluk ölçeğinin geçerliği ve güvenirliği üzerine bir çalişma [A study on the validity and reliability of the Beck’s Hopelessness Scale] (Master’s thesis). Anadolu University, Faculty of Medicine, Department of Psychiatry, Eskişehir Turkey. (In Turkish)
        Şişman Y. (2011). Türkiye’de özürlülere yönelik yasal düzenlemeler [Disabled people oriented legal regulations in Turkey]. Sosyal Siyaset Konferanslari, 60, 169–221. (In Turkish)
        Sivrikaya T., & Tekinarslan İ. Ç. (2013). Zihinsel yetersizliği olan çocuğa sahip annelerde stres, sosyal destek ve aile yükü [The stress, social support and burden of mothers of children with intellectual disabilities]. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi, 14, 17–31. (In Turkish)
        Softa H. K. (2013). Engelli çocuğa sahip ebeveynlerin depresyon düzeylerinin incelenmesi [Examination of parental depression levels of children with disabilities]. Kastamonu Eğitim Dergisi, 21, 589–600. (In Turkish)
        Turkish Statistical Institute. (2002). Turkey disability survey 2002. TurkSTAT, Ankara. Retrieved from http://www.turkstat.gov.tr/Kitap.do?metod=KitapDetay&KT_ID=11&KITAP_ID=14
        Turkish Statistical Institute. (n.d.). Disability statistics. Retrieved from http://www.turkstat.gov.tr/PreTablo.do?alt_id=1017
        Uğuz Ş., Toros F., İnanç B. Y., & Çolakkadioğlu O. (2004). Zihinsel ve/veya bedensel engelli çocuklarin annelerinin anksiyete, depresyon ve stres düzeylerinin belirlenmesi [Assessment of anxiety, depression and stress levels of mothers of handicapped children]. Klinik Psikiyatri, 7, 42–47. (In Turkish)
        Wei X., & Yu J. W. (2012). The concurrent and longitudinal effects of child disability types and health on family experiences. Maternal & Child Health Journal, 16, 100–108.
        World Health Organization. (n.d.). Disability and health. Retrieved from http://www.who.int/mediacentre/factsheets/fs352/en/
        World Health Organization & World Bank. (2011). World report on disability. Geneva, Switzerland: World Health Organization. Retrieved from http://www.who.int/disabilities/world_report/2011/report.pdf
        Xiong N., Yang L., Yu Y., Hou J., Li J., Li Y., … Jiao Z. (2011). Investigation of raising burden of children with autism, physical disability and mental disability in China. Research in Developmental Disabilities, 32, 306–311.
        Yildirim A., Aşilar R. H., & Karakurt P. (2012). Engelli çocuklarin annelerinin ruhsal durumlarinin belirlenmesi [Determination of psychological status of mothers with disabled children]. İstanbul Üniversitesi Florence Nightingale Hemşirelik Dergisi, 20, 200–209. (In Turkish).
        Zembat R., & Yildiz D. (2010). A comparison of acceptance and hopelessness levels of disabled preschool children’s mothers. Procedia—Social and Behavioral Sciences, 2, 1457–1461.
        Keywords:

        Disability; family caregiving; child

        © 2018 Association of Rehabilitation Nurses.