|Year : 2022 | Volume
| Issue : 3 | Page : 293-296
Effect of a brief intervention on stress and coping in primary caregivers of children with intellectual disability
Kaviyabala Dhanapal1, Padmavathi Nagarajan2, Charanya Kaliamoorthy3, Preeti Kandasamy3
1 Department of Nursing, AIIMS, Raipur, Chhattisgarh, India
2 Department of Psychiatric Nursing, College of Nursing, JIPMER, Puducherry, India
3 Department of Psychiatry, JIPMER, Puducherry, India
|Date of Submission||12-Jun-2020|
|Date of Decision||23-Sep-2020|
|Date of Acceptance||03-Oct-2020|
|Date of Web Publication||04-Aug-2021|
Dr. Padmavathi Nagarajan
College of Nursing, JIPMER, Puducherry - 605 006
Source of Support: None, Conflict of Interest: None
Background: Intellectual disability (ID) is a global public health concern and it causes a significant amount of distress to primary caregivers. This study aims to assess the effectiveness of a psychoeducational module on caregiver's stress and their ability to cope with this disorder. Methodology: An experimental one group pretest posttest design was adopted. Family interview on stress and coping questionnaire was applied to 38 caregivers of children with ID. A brief intervention (psychoeducation) was administered after a pretest. After 15 days, a posttest was conducted. The effect was assessed using the paired t-test. Results: Majority of the caregivers were females 31 (981.6%). At baseline, 33 (86.8%) subjects showed severe stress, 1 (2.6%) had very severe stress and 4 (10.5%) had a moderate level of stress. Coping was inadequate in 26 (68.4%) and adequate in 12 (31.6%) subjects before the intervention. The results showed that the mean scores of stress were decreased from the baseline score of 2.34 ± 0.23 to 2.05 ± 0.40 and that of coping was increased from 2.32 ± 0.47 to 2.84 ± 0.36 and the difference was statistically significant (P < 0.05). Conclusion: Brief intervention (psychoeducation) helps in reducing the stress and improving the coping skills of primary care givers of children with ID.
Keywords: Caregiver's stress, coping, intellectual disability, psycho-education
|How to cite this article:|
Dhanapal K, Nagarajan P, Kaliamoorthy C, Kandasamy P. Effect of a brief intervention on stress and coping in primary caregivers of children with intellectual disability. Indian J Soc Psychiatry 2022;38:293-6
|How to cite this URL:|
Dhanapal K, Nagarajan P, Kaliamoorthy C, Kandasamy P. Effect of a brief intervention on stress and coping in primary caregivers of children with intellectual disability. Indian J Soc Psychiatry [serial online] 2022 [cited 2022 Oct 3];38:293-6. Available from: https://www.indjsp.org/text.asp?2022/38/3/293/323113
| Introduction|| |
Intellectual disability (ID) is one of the most prevalent developmental disabilities. The family plays the main source of support and they are known to experience a varied level of physical and psychological burden in taking care of the child. Some studies assessed the level of stress and coping in families of children with ID with a significant correlation in the amount of stress and coping styles.,, However, there were very few interventional studies determining the positive effect of psychoeducation on adaptation level in caregivers of intellectually disabled children. This study was planned to assess the effect of a brief intervention on stress and coping in parents of children with ID.
| Methodology|| |
The study was conducted in a tertiary care teaching hospital in south India after obtaining ethical clearance. Thirty-eight adult primary caregivers (both sexes) of intellectually disabled children attending child psychiatry clinic were recruited by consecutive sampling after obtaining written informed consent. Caregivers with mental illness and those who had attended similar educational intervention prior were excluded. A semi-structured pro forma was used to assess the socio-demographic data, and participants were interviewed using the Family Interview on Stress and coping-mental retardation (FISC-MR) questionnaire., This tool has 2 sections (stress and mediators) and 9 areas. The areas of the tool were marked on the five-point and four-point Likert scale. The total score of FISC-MR was 80 of which the stress score total was 44 and the mediators score total was 36. The details are given in the following [Table 1].
|Table 1: Scoring system of Family Interview on Stress and coping-mental retardation (FISC.MR) questionnaire|
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Very severe stress: Score of 34–44 (>75% of the total score); severe stress: 33–23 (51%–75% of the total score); moderate stress: 12–22 (25%–50% of the total score); mild stress: 1–11 (<25% of the total score).
Very poor coping: 36–28 (>75% of the total score); inadequate coping: 19–27 (51%–75% of the total score); adequate coping: 10–18 (25%–50% of the total score); extremely best coping: 1–9 (<25% of the total score).
On the same day of pretest, a single session of psycho-education was administered in a group of 3–5 carers. The module was applied after detailed evaluation in consultation with a team comprising of a pediatrician, child psychiatrist and psychoeducation was already initiated as part of standard care. The caregivers were given a booklet with pictures explaining the management of children in vernacular language. They were instructed to practice it daily. After 15 days, a posttest was conducted to evaluate the effectiveness of the module.
Description of brief intervention
It is a structured 30 min lecture cum discussion session in vernacular language prepared by the investigator. The objective was to provide adequate knowledge to primary caregivers about the care of the child with ID and to acquire skills and coping strategy to practice in their day to day life. These were based on the counselor's manual for family intervention in mental retardation.
Stages in parent counseling
Stage 1: Impart information regarding the condition of the intellectually disabled child. Avoid giving misleading information or building false hopes in the parents.
Stage 2: Help the parents develop the right attitude toward their intellectually disabled child (to prevent overprotection, rejection, pushing the child too hard). Handle guilty feelings in parents.
Stage 3: Create awareness in parents regarding their role in training the child. The parents should be made to realize that training an intellectually disabled child does not need complex skills and with repeated training in simple steps, the child can learn.
Relaxation techniques such as deep breathing, yoga, listening to music, frequent day-outs, being more sociable and visiting social gatherings, spending time with family, meditation, asking help and exploring solution from specialist whenever needed.
The intervention also included setting targets for interventions (e.g., self-help skills training) and imparting training techniques (e.g., verbal prompting →modeling →physical prompting) and use of reinforcements.
Content validation was done by two independent experts (Faculty from the Department of Psychiatry) from the same institute. The above content was made into a small booklet in vernacular language for parents to take home.
Data collected were analyzed using SPSS version-19 (IBM SPSS Statistics for Windows, Version 19.0. Armonk, NY: IBM Corp). Descriptive (frequency and percentage) and inferential statistics (Chi-square test) were used in the study, P < 0.05 was considered statistically significant.
| Results|| |
Among 38 caregivers, 18 (47.4%) were between 18 and 30 years, 19 (50%) were between 31–45 and 1 (2.6%) was above 46 years of age. Majority of them were female (n = 31, 81.6%), 22 (57.9%) were unemployed and 34 (89.5%) belonged to the nuclear family. Around 36 (94.7%) of them had no family history of ID.
The clinical profile of children with ID
Majority of children 14 (36.8%) belonged to the age group of 4–6 years, males and females were equal in number 19 (50%). The severity of ID was moderate in 20 (52.6%); mild in 17 (44.7%) and severe in 1 (2.6). The cause for ID was not known in 27 (71.1%) of children, prenatal causes in 6 (15.8%), intranatal causes in 4 (10.5%) and the genetic cause was identified in one child (2.6%). Most of them 36 (94.7%) were born in an institution. The mode of delivery was normal in 28 (73.7%), cesarean section in three (7.9%) and 7 (18.4%) children had forceps assisted delivery. Analysis of stress levels among caregivers showed that it was severe in 33 (86.8%), very severe in one (2.6%) and was moderate in 4 (10.5%). Similarly, coping was inadequate in 26 (68.4%) and adequate in 12 (31.6%) subjects before the intervention.
The effect of the intervention on stress and coping showed that the mean stress score was decreased from the baseline score of 2.34 ± 0.23 to 2.05 ± 0.40 and the mean score of coping was increased from the baseline score of 2.32 ± 0.47 to 2.84 ± 0.36 between pre- and post-intervention (P < 0.05) and the differences were found to be significant.
Comparing areas of stress before and after the intervention, daily care activity stress was 13 (34.2%) and 7 (18.4%), respectively. The emotional stress was 29 (76.3%) before and 20 (52.6%) after the intervention. The pre and posttest social stress was 8 (21.1%) and 7 (18.4%), respectively. The financial stress showed a drop from 38 (100%) to 22 (57.9%).
Further analysis on areas of coping suggested that inadequate awareness 10 (26.3%) before the intervention dropped down to 2 (5.3%) after the intervention. The pretest unfavorable attitude was 7 (18.4%) and post-test was only 1 (2.6%). No difference noted in areas of social support and global adaptation.
The association between the stress score and socio-demographic variables showed significance in areas of age and education of the subjects with no significance between coping scores and socio-demographic data [Table 2].
|Table 2: Association of caregiver's stress scores with sociodemographic variables (n=38)|
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| Discussion|| |
The caregivers of an intellectually disabled child need better emotional support, understanding and guidance in rearing the child successfully. Family is the basic unit of society which renders a sense of social security to every individual irrespective of their age, health status and level of functioning. There has been a major transition from institutionalized care towards family-oriented care of an individual with ID. Hence, a pre-post intervention study was planned similar to few studies which assessed the effect of educational intervention on stress and psychological wellbeing in caregivers,, and their results were consistent with the present study.
Even though, the intervention based on the module has been written within a particular population of persons with ID in a particular setting in mind-children with severe ID attending a hospital, it is hoped that it would be of use to caregivers in other settings working with different types of populations with ID. When we see children profile visiting General hospital set-up like ours they tend to have less severe ID. The current study assessed the effect of this intervention on children with ID presenting to this set-up, most of whom comprised of mild to moderate severity of ID.
The current study showed a significant difference in stress and coping scores after the administration of brief intervention (P < 0.05) with significant improvement in knowledge score and decreased stress score depicting the effectiveness of the intervention.
The majority were middle-aged females, indicating mothers are mostly the primary caregivers who are vulnerable to stress, proven by certain studies which reported more emotional stress among mothers.,, Most of them belonged to the nuclear family which adds on to the lack of support system in handling a child with ID. After the intervention, the subjects showed betterment in all the areas of stress such as daily care stress, emotional, and social stress. The understanding of the nature, causes and prognosis of ID promotes better coping among primary caregivers. The misconceptions such as medications or surgery will help to cure ID might increase the level of stress. Before the intervention, the awareness was highly inadequate and misconceptions were present largely (n = 10, 26.3%) and the post-test revealed that it was reduced to 5.3% after the intervention. This infers that psycho-education plays a major role in coping with an intellectually disabled child.
A study conducted at Ranchi, demonstrated that psychoeducational intervention is effective in increasing knowledge regarding the condition and in meeting the needs of the caregivers.
Nonprobability convenience sampling and lack of follow-up in this study are the limitations. A single session, brief intervention was administered and the evaluation of the effectiveness was assessed within a short duration of 2 weeks.
| Conclusion|| |
The primary caregivers had severe stress, inadequate coping toward the management of children with ID and the brief psycho-educational intervention helped in reducing stress and improving the coping among primary caregivers. Brief interventions delivered by trained professionals at an early stage can reduce the burden among caregivers of the children with ID.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]