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ORIGINAL ARTICLE |
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Year : 2022 | Volume
: 35
| Issue : 2 | Page : 522-527 |
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Predictor of perceived stress among mothers of children with Down syndrome
Aml A Salama1, Zeinab A Elkhateeb2, Marwa M Mohasseb1
1 Department of Family Medicine, Faculty of Medicine, Menoufia University, Menoufia, Egypt 2 Shebin Elkom Unit, MOHP, Shebin Elkom, Menoufia, Egypt
Date of Submission | 01-Nov-2021 |
Date of Decision | 16-Dec-2021 |
Date of Acceptance | 19-Dec-2021 |
Date of Web Publication | 27-Jul-2022 |
Correspondence Address: Marwa M Mohasseb Department of Family Medicine, Faculty of Medicine, Menoufia University, Menoufia Egypt
Source of Support: None, Conflict of Interest: None | Check |
DOI: 10.4103/mmj.mmj_228_21
Objective To assess stress level among mothers of children with Down syndrome (DS) and to determine its associated predictors. Background Having children with an intellectual disability can be a burden for their families. Children with DS are associated with many medical problems that need extra care, follow-up, and even hospitalizations, in addition to cognitive and behavioral problems, so most parents feel stressed and need support. There are very few studies focusing on stress level among parents of children with DS in Egypt. This study focuses on stress level among mothers of children with DS and its associated predictors. Patient and methods A cross-sectional study was conducted on 160 mothers of children with DS. A self-administered questionnaire was used to gather data on stress level and its associated risk factors. Parental stress scale was used to evaluate stress among mothers. Results Overall, 24% of the studied mothers were highly stressed. Less the number of children in the family, lower the mother's educational level, and higher the age of the child with DS were the most influencing factors that increased parental stress. Conclusion Mean parental stress among mothers of children with DS is significantly affected by the increased number of children in the family, the mother's educational level, and the age of their child with DS.
Keywords: caregivers, child, Down syndrome, emotions, mothers, parenting, rehabilitation centers
How to cite this article: Salama AA, Elkhateeb ZA, Mohasseb MM. Predictor of perceived stress among mothers of children with Down syndrome. Menoufia Med J 2022;35:522-7 |
How to cite this URL: Salama AA, Elkhateeb ZA, Mohasseb MM. Predictor of perceived stress among mothers of children with Down syndrome. Menoufia Med J [serial online] 2022 [cited 2024 Mar 28];35:522-7. Available from: http://www.mmj.eg.net/text.asp?2022/35/2/522/352160 |
Introduction | | |
Down syndrome (DS) is a reasonably common consequence of chromosome 21 congenital birth defect. It is a genetic condition in which a child is born with an extra copy of chromosome 21, which is also known as trisomy 21. A person with DS has distinctive facial features, physical delay in growth, mild to severe intellectual incapacity, and related medical issues. They also complain of linguistic, perceptive, and motor delays, which can all affect longevity and employment abilities[1].
Children with DS mostly have other chronic health conditions, such as congenital heart defects, gastrointestinal disease, respiratory disorders, hypothyroidism, ophthalmologic problems, and hearing problems, which requires extra care and may be an additional source of worries and fears for their mothers. As a result, families of children with DS have to spend much energy and patience in managing the child's behavioral and health problems[2].
DS incidence varies in various communities all across the world from 1 in 319 to 1 in 1000 live births[3]. The incidence of DS in Egypt varies from 1:555 to 1:770, with 8 million expected amounts around the world[4].
At the time mothers know that their child has DS, they may feel guilty, sad, shocked, and fall into a state of denial. A child with DS influences family dynamics and adaptation that may lead to stress. This stress is precipitated by many factors such as disability or medical problems of the child, caregiver load, and social acceptance[5].
Mothers of children with DS have positive and negative experiences. Positive experience develops differently to other disabilities among parents of children with DS. Negative experience develops from social nonacceptance, child misbehavior, and other challenges as medical problems, educational problems, financial burden, and delayed development of the child[6].
Having a child with DS makes the duties of mothers more complicated. The psychological load and stress are increased by child impairments, delayed growth, and specific resources needed for their care and instruction[7].
The demand of the family of children with DS is higher because the child needs greater care owing to the delay in development; the limitations in activities of daily living such as dressing, personal hygiene, walking, and talking; and aspects related to education, leisure, and health. The burden results from physical independence and intellectual disability, which lead to financial loss, routine changes, overwork, and decreased social and professional life[8].
Caregivers of children with disabilities are subjected to psychological burdens. They have poorer mental and general health, lack of sleep, chronic physical conditions, and higher levels of stress[9].
Mothers of children with DS face various challenges that arise from the need to deal with the social consequences of the disease such as the social stigma. They may undergo the painful process of losing the imagination of having a “normal” child and accepting that their child is “different.” They always express fear of the future and a different view of people regarding their child. These factors may develop anxiety and stress[10].
This study aims to assess the level of parental stress among mothers who have children with DS and determine its associated predictors.
Patients and methods | | |
A cross-sectional study design was conducted over 6 months from September 2019 to February 2020. The data were collected from mothers with DS children when they attended the rehabilitation centers for children with DS in Menoufia Governorate, Egypt, during their follow-up routine visits. There are about thirteen urban centers such as Ebny, Wogod, and Twasol and three rural rehabilitation care centers such as El-Basma in Menoufia Governorate. The total number of the attending mothers with their registered children with DS was 160. All attending mothers were included in the study sample selection without any exclusion criteria. The study was approved by the Research Ethics Committee of Menoufia Faculty of Medicine.
A calculated sample size of 160 mothers—being the primary caregivers and spend more time with their children—were selected randomly without the day specified. The sample was calculated using MedCalc Statistical Software version 15.8 (MedCalc Software bv, Ostend, Belgium) based on 21.3% prevalence of moderate to severe burden among primary caregivers[8], with the confidence level of 95% and the power of study of 80%. Mothers were interviewed through a predesigned questionnaire after explanation of all questions, and it was made sure that they understood the questions by asking their feedback. Illiterate mothers were helped to understand the questions by the researcher to complete the needed data after explanations of each question in easy understood words.
The first part was used to assess their socioeconomic level[11].
The second part was the parental stress scale[12]. It was translated into Arabic language and tested for validity to measure the clarity of the language. A reliability test was performed using the reliability coefficients (Cronbach's alpha) of 0.7[13]. All the studied participants completed the questionnaire by face-to-face interview. It was one session for each participant. They were asked to fill it individually after explaining all questions. The time process of administrating the questionnaire took about 15–20 min.
The parental stress questionnaire included 18 questions graded on a Likert scale of 5, ranging from complete disagreement to full agreement. To compute the parental stress score, items 1, 2, 5, 6, 7, 8, 17, and 18 should be reverse scored as follows: 1=5, 2=4, 3=3, 4=2, and 5=1. The item scores are then summed. Overall possible scores on the scale range from 18 to 90. A high level of stress was scored >43 and a low level of stress was <43 (based on the median of the score).
The scale items were about being happy in my role as a parent, there is nothing I would not do for my children if necessary, caring for my child(ren) sometimes takes more time and energy than I have to give, being worried about whether doing enough for the child, feeling close to my child(ren), enjoying spending time with my child(ren), my child is a source of affection for me, having an optimistic view for the future, my child is a source of stress, having a child(ren) leaves little time and flexibility in my life, having a child(ren) has been a financial burden, it is difficult to balance different responsibilities because of my child (ren), the behavior of my child(ren) is often embarrassing or stressful to me, if I had it to do over again, I might decide not to have the child(ren), feeling overwhelmed by the responsibility of being a parent, having a child(ren) has meant having too few choices and too little control over my life, feeling satisfied as a parent, and finding my child enjoyable.
All the studied participants completed the questionnaire anonymously by face-to-face interview with assurance of the confidentiality of the recorded data. They were also assured of their voluntary participation and their right to withdraw any time during the data collection. Informed written consent was obtained from all participating mothers. All data were coded, entered, and analyzed anonymously. It was one session for each participant. The time process of administrating the questionnaire took about 15–20 min.
Statistical analysis
The recorded data were analyzed using the Statistical Package for the Social Sciences (SPSS), version 20.0 (SPSS Inc., Chicago, IL), which involved descriptive and analytical analyses. Numerical data were expressed as mean ± SD. Qualitative data were expressed as frequency and percentage. Statistical relationships between parametric qualitative variables were tested using χ2, between nonparametric qualitative variables were tested using Fisher's exact test, and between quantitative variables were tested using the Student t-test. Binary logistic regression was used to determine the most affecting predictors of high stress. P value <0.05 is considered significant.
Result | | |
Overall, 24% of the participating mothers of children with DS were highly stressed [Figure 1]. Most of the studied mothers agreed on a lot of questions of parenteral stress scale like they were happy in their roles as a parent (79%), caring for their children sometimes took more time and energy than they have to give (44%), and they feel close to their children (68%). Most of the studied mothers disagreed on some of the questions like difficulty to balance different responsibilities because of their children (38%), the behavior of their children is often embarrassing or stressful to them (39%), and if they had it to do over again, they might decide not to have their children (36%) [Table 1].
There was a statistically significant difference between the stress level and the total number of children in the family of the studied mothers of children with DS (P value 0.03). Stress decreased with the increase in the number of children. Moreover, there was a statistically significant difference between stress and the level of mother education, where primarily educated mothers experienced higher stress (P value 0.04) [Table 2]. | Table 2: Comparison between the studied groups regarding their general characteristics
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There was a statistically significant difference between the age of the child with DS and stress in studied mothers, as the stress was more prevalent with older children (P value 0.03) [Table 3]. | Table 3: Comparison between the studied groups regarding their children's characteristics
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On determining the most affecting predictors for high-stress levels among mothers of DS children, it was found that the primary educated (OR = 4.7) followed by the secondary educated mothers (OR = 4.2) were the most affected participants. Moreover, it was found that increasing the number of children in the family of DS children was predicted as a protective factor for higher stress (OR = 0.56) [Table 4]. | Table 4: Logistic regression for predictors of high stress among the studied groups
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Discussion | | |
Families of children with DS generally experienced a higher level of stress than families of normal children. High levels of stress can affect family dynamics and have negative consequences for parents and children[4].
The results of this study showed that 24% of the studied mothers were exposed to high stress. This result was in the line with a study in Malaysia by Norizan and Shamsuddin[14], who reported that ~25% of mothers with DS are highly stressed. This similarity was due to the mother's sociodemographic characteristics that were close to each other in the two studies. This result did not resemble a study in Egypt by Barakat and Mohamed[10] who reported that nearly half of the studied parents had a high level of stress. This difference was owing to the method of sample selection, as they selected only the mothers whose children were admitted to the hospital suffering from medical problems, whereas the mothers in the current study were recruited during their routine visits to the rehabilitation centers.
The child's age was one of the factors that increased the stress level in mothers of children with DS. Mothers of older children experienced more from high stress. This result was similar to a study in France by Oliveira et al.[15] who reported that the parental stress was higher with having adolescent children than younger children. This similarity between the two studies could be owing to because the older the child, the greater their responsibilities and the burden.
In addition, the study by Lanfranchi and Vianello[16] reported that a child's age is an important variable for parents of children with DS. The older the child, the greater the parents' stress levels.
There was a statistically significant positive relationship between the level of mother education and stress. The lower the level of mother education, the greater their stress level. This result is in line with a study by Barros et al.[8], who reported that mothers of children with DS who have a low level of schooling present a high burden. Because the less educated mothers are less knowledgeable about dealing with these children.
Moreover, the study by Fikriyyah et al.[17] reported that with high maternal education, the stress level decreases. This result is inconsistent with the study by Lisak et al.[18], who reported parents with a higher level of education experience more stress than parents of lower school degrees because the parents of a higher level of education worked more and they had a feeling of not spending enough time with their children.
In the current study, there is a relation between the stress and the number of children of the studied mothers. The more the children, the less the level of stress. This may be due to the presence of other children helping their mothers in the daily care of child with DS, such as clothing, food, and hygiene. This is similar to the study conducted by Skotko et al.[19] who reported that most parents of children with DS believed that siblings were more caring and sensitive because they had a brother or sister with DS as the relationship between children has been described almost uniformly as positive.
Moreover, in line with our study, Lisak et al.[18] reported that parental stress gets lower with an increase in the number of children. Parents with less than three children experience more stress than parents with more than three children, because there is no help from any brothers or sisters and all duties are on the parents.
This result is not in the line with the study by Dabrowska and Pisula[20] who reported that the more the children, the higher the stress level of the parents of DS because of the more duties and burdens of all their children.
Conclusion | | |
Mothers of children with DS experience higher stress. The lower the education level, the higher the stress they experience. The more the number of siblings of a child with DS, the lower the stress, the mother experiences.
Acknowledgements
The manuscript has been read and approved by all the authors, that the requirements for authorship in this document have been met, and that each author believes that the manuscript represents honest work.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
References | | |
1. | Antonarakis SE, Skotko BG, Rafii MS, Strydom A, Pape SE, Bianchi DW, et al. Down syndrome. Nat Rev Dis Primers 2020; 6:1-20. |
2. | Roizen NJ, Magyar CI, Kuschner ES, Sulkes SB, Druschel C, van Wijngaarden E, et al. A community cross-sectional survey of medical problems in 440 children with Down syndrome in New York State. J Pediatr 2014; 164:871-875. |
3. | Bull MJ. Down syndrome. N Engl J Med 2020; 382:2344-2352. |
4. | Amin RE, Abdel-Meguid IE, El-Refaie NM, Fakher W, El-Tabie D, El-Gindy HA. Clinical profiles, congenital heart disease, and other comorbidities among Egyptian children with Down syndrome: a tertiary center study. J Child Sci 2021; 11:233-239. |
5. | Rocha DS and Souza PB. Systematic review of parental stress outbreaks in caregivers of children with Down syndrome. Rev Bras de Educ Espec 2018; 24:455-464. |
6. | Farkas L, Cless JD, Cless AW, Nelson Goff BS, Bodine E, Edelman A. The ups and downs of Down syndrome: a qualitative study of positive and negative parenting experiences. J Fam Issues 2019; 40:518-539. |
7. | Pourmohamadreza-Tajrishi M, Azadfallah P, Garakani SH, Bakhshi E. The effect of problem-focused coping strategy training on psychological symptoms of mothers of children with down syndrome. Iran J Public Health 2015; 44:254. |
8. | Barros AL, Barros AO, Barros GL, Santos MT. Burden of caregivers of children and adolescents with Down syndrome. Cien Saude Colet 2017; 22:3625-3634. |
9. | Alam El-Deen N, Alwakeel A, El-Gilany A, Wahba Y. Burden of family caregivers of Down syndrome children: a cross-sectional study. Fam Pract 2021; 38:160-165. |
10. | Barakat M, Mohamed E. Relationshipbetween parent stress, psychological well-being and coping strategies among parents with Down syndrome children.IOSR Journal of Nursing and Health Science (IOSR-JNHS) 2019; 8:57-74. |
11. | Fahmy S, Nofal L, Shehata Sh, El-Kady H, Ibrahim K. Updating indicators for scaling the socioeconomic level of families for health research. The Journal of the Egyptian Public Health Association 2015; 90:1-7. |
12. | Berry JO, Jones WH. The parental stress scale: Initial psychometric evidence. J Soc Pers Relat 1995; 12:463-472. |
13. | Salem GM and Abdelsalam AE. Effectiveness of health education on improving stress and quality of life among parents having attention deficit hyperactivity disorder child. Egypt J Community Med 2021; 39:1. |
14. | Norizan A and Shamsuddin K. Predictors of parenting stress among Malaysian mothers of children with Down syndrome. J Intellect Disabil Res 2010; 54:992-1003. |
15. | Martin CA, Papadopoulos N, Chellew T, Rinehart NJ, Sciberras E. Associations between parenting stress, parent mental health and child sleep problems for children with ADHD and ASD: Systematic review. Res Dev Disabil 2019; 93:103463. |
16. | Lanfranchi S and Vianello R. Stress, locus of control, and family cohesion and adaptability in parents of children with Down, Williams, Fragile X, and Prader-Willi syndromes. Am J Intellect Dev Disabil 2012; 117:207-224. |
17. | Miragoli S, Balzarotti S, Camisasca E, Di Blasio P. Parents' perception of child behavior, parenting stress, and child abuse potential: Individual and partner influences. Child Abus. Negl 2018; 84:146-156. |
18. | Lisak N, Alimović S, Jakab AW. Parental stress of parents with children with disabilities—correlation between stress and other variables in Croatian context. In 5 th International Conference “Transformation towards sustainable and resilient society for persons with disabilities”. 2018; 395. |
19. | Skotko BG, Levine SP, Goldstein R. Having a son or daughter with Down syndrome: perspectives from mothers and fathers. Am J Med Genet A 2011; 155:2335-2342. |
20. | Dabrowska A and Pisula E. Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. J Intellect Disabil Res 2010; 54:266-280. |
[Figure 1]
[Table 1], [Table 2], [Table 3], [Table 4]
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