|Year : 2019 | Volume
| Issue : 2 | Page : 66-72
Stress and burden among parents of students in special schools of Mangaluru: A cross-sectional study
Laimayum Nivedita Devi, Mackwin Kenwood D'Mello, Priyanka Dsouza Rent
Department of Public Health, K S Hegde Medical Academy, Nitte (Deemed to be University), Mangalore, Karnataka, India
|Date of Web Publication||24-Jan-2020|
Prof. Mackwin Kenwood D'Mello
Department of Public Health, K S Hegde Medical Academy, Nitte (Deemed to be University), Mangalore - 575 018, Karnataka
Source of Support: None, Conflict of Interest: None
Background: About 15% of the world's population lives with some form of disability; 2%–4% experience significant difficulties in functioning. Parents who are the primary caregivers of a child with a disability face numerous challenges in day-to-day life, which, in turn, affects their psychological health. Objectives: This study was conducted to determine the level of stress and burden among parents of a child with a disability, to identify the coping strategies used by the parents, and to assess the effect of sociodemographic variables on their level of stress and burden. Materials and Methods: This cross-sectional study was conducted in three special schools of Mangaluru taluk; a total of 112 parents whose children were enrolled in these special schools participated. Family Stress and Coping Interview and Zarit Burden Interview scale and a modified questionnaire on coping strategies were used to calculate the stress and burden level. Results: Nearly 47.33% of the parents reported mild-to-moderate stress, whereas 25% of the parents reported high stress, 50.9% of the parents reported mild-to-moderate burden, and 26.8% accounted for moderate-to-severe burden. There was a significant association between the level of stress, level of caregiver burden, and sociodemographic variables such as residents, occupation, education, and rehabilitation services. There is moderate and strong evidence of a positive correlation between the caregiver burden with the age of the child (r = 0.245, P = 0.009) and stress (r = 0.45, P < 0.001). The parents of children with disability undergo stressful events throughout their life; the sociodemographic factors have significant association on the level of stress and burden. Conclusion: The various program measures such as adult day care, improvised home-care, and use of assistive equipment can be undertaken to reduce caregiver burden.
Keywords: Caregiver burden, coping strategies, disability, parents, special school, stress
|How to cite this article:|
Devi LN, D'Mello MK, Rent PD. Stress and burden among parents of students in special schools of Mangaluru: A cross-sectional study. Muller J Med Sci Res 2019;10:66-72
|How to cite this URL:|
Devi LN, D'Mello MK, Rent PD. Stress and burden among parents of students in special schools of Mangaluru: A cross-sectional study. Muller J Med Sci Res [serial online] 2019 [cited 2020 Aug 15];10:66-72. Available from: http://www.mjmsr.net/text.asp?2019/10/2/66/276684
| Introduction|| |
Raising a normally developing child is a tough task in itself and raising a child with a disability has an even more intense impact on the parents, which most of the times results in distress.,,, About 15% of the world's population lives with some form of disability, among which 2%–4% experience significant difficulties in functioning. In India, as per census 2011, out of the 1210 million population, 26.8 million persons are disabled, which is 2.21% of the total population. A large number of individuals are directly or indirectly affected while caring for an individual with some form of disability.
All parents expect their child to be free from any illness or disorder, but as he or she is diagnosed with some form of disability, the parents undergo an emotional trauma. This emotional turmoil remains with the parents and the family for quite a long time or a lifetime. The parents being the primary caregiver are highly impacted positively or negatively while trying to fulfill their duty as a parent. Investigators around the world have reported a significant difference between parents of children with disabilities and parents of children without a disability.
The requirement for different areas of health care such as frequent visits to behavioral therapy/physiotherapy/speech and hearing along with acquiring appliances leads to sacrificing the financial budget of the whole family, and it also leads to compromise of the usual activities, leaving an individual with little time for oneself, partner, and family, which, in turn, has a profound effect on the psychological well-being, finance, social relations, and marital relations and many a times, they are socially isolated.,
Care given to a child with disability often at times is overwhelming for the parents, which leads to a burden on the parents. Parents and family concerned with continuous effort in day-to-day activity related with the child with disability normally show fatigue and changes in behavior. Parents bear the load and many times they prefer not to talk about it, which can lead to anxiety, depression, irritability, feeling of tiredness, sleep deprivation, trouble concentrating, and health issues.,,, Different coping strategies are adopted by different individuals, as mothers' coping strategies may differ from the fathers. Every parent has a unique way of dealing with the situation.,,, Some have a positive way of dealing and some negative, and it differs in every stage of life.
| Methods|| |
This cross-sectional study was carried out to determine the stress and caregiver burden among parents of students with disability enrolled in special schools. The study was carried out for a period of 5 months, from January to May 2019. Assuming the prevalence of parental stress of child with a disability to be 50%, confidence level to be 90%, precision to be 10%, design effect to be 1.5, and nonresponse rate to be 10%, the total sample size arrived at 112. A convenience sampling method was adopted; there were six special schools in Mangaluru taluk, of which permission was granted by four special schools. Out of the four, one special school was excluded due to fewer enrollments of children and because the parents showed no interest. According to the availability and willingness of the respondents, a total of 112 respondents were involved in the study. The parents of children with any disability such as physical disability, intellectual disability, autism spectrum, muscular dystrophy, and immune disorders were approached; the degree and levels of disability were not considered in this study. Parents who are not the primary caregiver of the child were excluded from the study. A pilot study was conducted prior to the original study in a similar study setting to verify the tool and check its feasibility. Cronbach's alpha was used to check the reliability of the tool; the obtained coefficient was 0.895 for stress scale and 0.835 for caregiver burden scale. Ethical clearance was obtained from the institutional ethical committee in the jurisdiction of the study area. Data were summarized as frequency and percentage for categorical items and Chi-square test was performed to find the association. The data were analyzed using SPSS version 20 (released 2011. IBM SPSS Statistics for Windows, IBM Corp., Armonk, NY, USA).
The structured questionnaire had the following four sections:
The demographic section consisted of the characteristics of parents and children such as age, educational attainment, marital status, employment, occupation, number of family members living in the same household, monthly family income, the status of the house, and any insurance. The child's characteristics included age, gender, disability types, the age of diagnosis, details of diagnosis provider, rehabilitation services, and questions about siblings.
Family stress and coping questionnaire – adapted from Family Stress and Coping Interview
Family Stress and Coping Interview (FSCI)
was designed by Minnes and Nachshen and Erin Tehee: it was designed to assess parents' level of perceived stress in 19 areas of their lives. It consists of 25 self-report items using a 4-point Likert scale ranging from 0 (being not stressful) to 3 (extremely stressful).
The Zarit Burden Interview by Zarit
This measurement scale was designed in 1987 to assess the burden of American caregivers of dementia patients. According to Zarit, the burden of carers refers to their physical health, their psychological well-being, their economic factors, their social life, and their relationship with the family member they take care of.
Modified questionnaire on BRIEF-COPE
Questions on coping strategies were asked in three different categories, namely, strategies used to think less about the situation, strategies to make the situation better, and normal strategies to cope.
| Results|| |
The mean age of the respondents was 44.63 ± 8.641 years, while the median was 44.5 years. The minimum age was found to be 28 years and maximum was 62 years. [Table 1] shows that the respondents aged 41–50 years form the largest age group with 44 respondents. The majority (79.5%) of the respondents comprised female, and 55.3% of the populations were residing in urban area. Majority (84.8%) of the respondents were married, followed by widow (11%) and divorced (3.6%). Most of the respondents, i.e., 29.5%, were having a high school certificate, and only 0.9% had a profession or honors degree. One-third of the respondents were unemployed (37%); the occupation of the respondents comprised bidi rolling, cooking, a maid (20.5%) followed by a skilled worker (17.4%) and profession (7.5%).
[Table 2] reflects particulars on the disabled child's gender, age, disorder, and rehabilitation services. In this study, the majority (62.5%) was male, and a majority (59.9%) of them belonged to 11–20 years' age group. Half (50%) of the respondents reported that their child had intellectual disability, followed by physical disability (24.1%) and autism (15.2%). Only one-third (33.9%) of the respondents reported that their child is receiving rehabilitation services, and 71% reported that they used speech and hearing services followed by physiotherapy (48.4%).
[Figure 1] indicates that the majority (47.3%) of the respondents was having mild-to-moderate stress, followed by low stress (27.7%) and high stress (25%). The stress level was determined by using the interquartile value score, which was grouped as <24 = no stress; 24–41 = moderate stress; and >41 = severe stress. [Figure 2] gives us an idea about the level of burden among the respondents; it was documented that 26.8% of the caregivers accounted “moderate-to-severe burden,” and 6.9% for “severe burden.” This was achieved by using Zarit Burden Interview Scale. The scores were categorized as 0–20 = little or no burden; 21–40 = mild-to-moderate burden; 41–60 = moderate-to-severe burden; and 61–88 = severe burden.
[Table 3] indicates that the sociodemographic variables such as gender of a child with disability, residence, occupation of the respondents, availability of health insurance to the disabled child, type of disability, and availing rehabilitative services were associated with the level of stress (P< 0.05). This shows that economy (income) determines the stress level of caregivers. While [Table 4] indicates that level of burden in caregivers is determined by sociodemographic variables such as marital status, education level of the caregiver, and age of the child availing rehabilitative services (P< 0.05). [Table 5] shows that as the age of the child increases, the caregiver burden also increases (r = 0.2, P < 0.05). The study also shows that caregivers with high level of burden had high level of stress (r = 0.4, P < 0.001).
|Table 3: Association between the level of stress and sociodemographic factors|
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|Table 4: Association between the level of burden and sociodemographic factors|
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|Table 5: Relation between caregiver burden with age of the child and stress of the respondents|
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[Figure 3] indicates that 75% of the caregivers reported that they have accepted the reality and moving on, 47.3% of the caregivers use work as a coping strategy, 19.6% of the population prefer watching TV, more than two-third (72.3%) turn to prayer or meditation, and 33.9% cope by turning to religious activities.
|Figure 3: Distribution according to coping strategies used by the respondents|
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| Discussion|| |
The mean age of the population was 44.6 ± 8.6 years. Majority of the participants were female. The mean score of the level of stress was found to be 31.2 ± 15.2, and the majority (47.3%) of the parents reported mild-to-moderate stress, while 25% of the parents reported of high stress. Many other studies have also reported that majority of the parents have expressed mild-to-moderate stress.,
The study showed a significant association between the level of stress and the sociodemographic variables (P< 0.01) such as occupation, residence, insurance coverage, the child's disorder, and visit to rehabilitation services. The occupation status can have an impact on the level of stress, whether employed or unemployed. A study conducted by Sheikh et al. in Pakistan (2008) shows that parents who were employed and earned showed low stress than unemployed parents; according to the author, unemployed parents are socially isolated and who spend more time at home caring for the disabled experience more stress. While contrast to this study, some studies proved that employed parents have more stress, especially mothers; this may be due to taking up the sole responsibilities of taking care of the child, work, and household chores, which usually results in distress.
In New Delhi and Faridabad, Northern India, Gupta VB et al. conducted a study, where the result showed that taking care of a female child with disability was more stressful than that of taking care of a male child with disability contradict to study conducted by Zamora et al; this study proved that gender has a significant association with the level of stress., The present study showed that there is an association between the level of stress and child availing rehabilitative services. The study conducted by Ann M et al. showed that child spending time at rehabilitative services as positive effect on level of stress and overall wellbeing of the individual. In the present study, a significant association between level of stress and health insurance was also found; having a health insurance has always been shown to be helpful, but the coverage of the child's health-care needs is very low in India. Most likely, uninsured children are the one who do not receive all of the services they need. Results of a study conducted by Uskun and Gundogar in Turkey indicated that financial problem influences stress, anxiety, and depression on parents of a child with a disability.
The mean age of the child with a disability in the present study was 14 ± 5.5 years, and there was no significant association between child's age and stress. However, many studies have shown evidence that the age of the child has an impact on the level of stress. The reason can be due to the increasing demand for health-care needs, time, and change in child's characteristics. However, on the contrary to various studies, the result in this study showed no significant association between the age of the child and level of stress.
Burden on parents of children with a disability has resulted in physical and psychological strain for many parents.,,,, The mean score of the level of burden was found to be 34.3 ± 15.2 years. There was a statistically significant association between caregiver burden and sociodemographic variables (P< 0.01) such as marital status, educational level of the parents, rehabilitation services availed by children with disability, and child's age. Many studies have shown that there is an increase in the level of stress, especially of mothers, which might be due to a load of balancing in between the responsibilities of taking care of the child, household chores, needs of a spouse, and needs of other children. The load and strain on parents of children increases as the age increases; this may be due to the rise in the demands of health care, time, and attention. In South Korea, Oh and Lee (2009) conducted a study to assess the caregiver burden on mothers where respondents expressed a high level of the overall burden.
Coping strategies play a significant role in the level of stress on parents. Every individual has his/her way of dealing with a stressful situation. Caregivers, i.e., the parents, learn to adapt and cope with all that comes along with a child with a disability, with the strategy differing along every stage of life, some have a positive way of dealing and some negative way of dealing with the situation.,, The coping strategies were asked in three different categories, namely, strategies used to think less about the situation, plans to make the situation better, and rational strategy to cope. The analysis has shown that the coping strategies which were mostly used or highly rated by parents in the study were coping by praying and meditation, followed by focusing on work, and it was shown that most of the parents have been taking action, efforts on strategies through help and advice from others. In addition, the majority of the parents had a positive attitude towards life, i.e., they have accepted the reality and trying to see the whole situation in a different light; this has also been in accordance with another study by Heiman.
| Conclusion|| |
Significant difference was observed between having caregiver stress and burden with sociodemographic variables. Meditation and going to work were the important coping strategies used by caretakers to think less about the situation. The stress and caregiver burden increases with the duration of illness as well as with the age of caregivers. The various policy/program measures such as adult day care, improvised homecare, and use of assistive equipment can be undertaken to reduce caregiver burden. Caregiver stress can be managed by professional counseling, assistance of support groups, and community involvement.
The authors acknowledge the schools which granted permission to carry out the study. The authors would like to thank the parents who participated in this study and for sparing their time on sharing experience in raising a child with a disability.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2], [Figure 3]
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]