|Year : 2021 | Volume
| Issue : 1 | Page : 48-54
Quality of life in caregivers of children with developmental delay – A case–control study
Amulya R Rao1, Deepthi Ramamurthy2, Uday Kumar3
1 Department of Community Medicine and Paediatrics, ESICMC and PGIMSR, Bengaluru, Karnataka, India
2 Department of Community Medicine, ESICMC and PGIMSR, Bengaluru, Karnataka, India
3 Department of Paediatrics, ESICMC and PGIMSR, Bengaluru, Karnataka, India
|Date of Submission||21-Jun-2020|
|Date of Decision||24-Jul-2020|
|Date of Acceptance||10-Sep-2020|
|Date of Web Publication||2-Feb-2021|
Department of Community Medicine, ESICMC and PGIMSR, Rajajinagar, Bengaluru - 560 010, Karnataka
Source of Support: None, Conflict of Interest: None
BACKGROUND: Caregivers role is crucial in lives of children with developmental delay. Most caregivers have little time for themselves leading to poor social life and quality of life (QOL). Social rehabilitative services among caregivers have improved health of children with developmental delay. We assessed the QOL of caregivers of children with developmental delay and compared with those of normal children.
METHODS: Thirty children with developmental delay were selected as cases and thirty normal children as controls. Clinical profile of cases and sociodemographic details of all the participants was assessed. World Health Organization QOL-BREF was used to assess QOL of the caregivers in physical, psychological, social, and environment domains.
RESULTS: Fifty percent of cases had severe developmental delay. QOL among caregivers of cases was poor in physical, psychological, social relationships, and environment domains. Mean QOL scores of caregivers of controls were significantly higher than mean QOL scores of caregivers of cases in all four domains. As severity of disability increased there was worsening of QOL observed in all four domains.
CONCLUSIONS: QOL of caregivers of children with developmental delay is worse compared to that of controls, and it became worse with increase in the severity of the disability. Hence, there is a need for social support group among the caregivers along with medical rehabilitation.
Keywords: Caregivers, developing country, developmental delay, quality of life, social rehabilitation
|How to cite this article:|
Rao AR, Ramamurthy D, Kumar U. Quality of life in caregivers of children with developmental delay – A case–control study. Int J Health Allied Sci 2021;10:48-54
|How to cite this URL:|
Rao AR, Ramamurthy D, Kumar U. Quality of life in caregivers of children with developmental delay – A case–control study. Int J Health Allied Sci [serial online] 2021 [cited 2021 Mar 8];10:48-54. Available from: https://www.ijhas.in/text.asp?2021/10/1/48/308582
| Introduction|| |
Developmental delay burden
The presence of developmental delay is an indication that the process of development is significantly affected, and that without special intervention, it is likely that the child's ability to attain normal developmental milestones and educational performance at school would be jeopardized. These children have skill deficits, including specific delays in language, perception, meta-cognition, social, emotional, and/or motor development.
Many such disabilities, if not physical, remain unnoticed and diagnosed late. It is difficult for parents to identify a developmental delay as they are normally not aware about the developmental milestones of a child and more so if it is their first child. Professionals often have difficulty diagnosing a specific disability at such an early age, so the term developmental delay is utilized to qualify a child for services in infant and preschool programs.
As estimated by the World Health Organization (WHO), about 5% of the children, 14 years of age and under, have some types of moderate-to-severe disability. As per the Census 2011, in India, out of the 121 crore population, about 2.68 crore people are disabled, which is 2.21% of the total population. Sixty-nine percent of the disabled population live in the rural areas, 55% of disabled population is literate, and only 36% are employed.
Quality of life
According to the WHO, quality of life (QOL) is defined as the “individual's perception of his position in life, in the context of his culture and value systems in which he lives, and in relation to his goals, expectations, standards, and concerns.”
Caregiver burden in developmental delay
”A caregiver is a person who helps another individual with impairment with his or her activities of daily living. Caregiver may be the patient's close relative, parents, sibling, or any person who is staying with the patient and takes prime responsibility of care.”
The caregivers spend most of their time looking after their child, especially if the child has severe delays and disabilities, thus preventing them to focus their attention or time elsewhere which has an adverse effect on their social life and overall QOL. They are faced with many challenges such as disturbance of routine, family leisure, family health, work absenteeism, physical and emotional stress, and increased economic costs as compared to caregivers of normal children.,,
Family is the main source of support to any growing child. Family of children with developmental delay adjust on the several aspects of life to suit the child's need, thereby lowering their QOL. This seems more relevant in developing country where family bears the main burden of care for such children unlike in the developed world., Experts explain that in India, families assume the role of primary caregivers for the number of reasons like the Indian tradition of interdependence and concern for near and dear ones.
These developmental delays which progress to disabilities not only impact the child and the family, but also the society, in terms of the cost of providing health care, educational support, and treatment services. The earlier emphasis on medical rehabilitation has now been replaced by an emphasis on social rehabilitation. Evidence supports that early treatment of developmental disorders leads to improved outcomes for children and reduced costs to the society.,
In a country like India, where care provided is mainly home based, and alternate support systems such as day care centers, weekend care and special schools are meager, the impact on the caregivers can be enormous., During the treatment and rehabilitation of such children, the needs of the caregivers and their QOL are seldom thought about. Thus, it is important that the QOL of the caregivers need to be researched which would help in preparing policies for enhancing the coping strategies for them. It is also important to note that caring for a child with disability does not equally affect all parents. There are families who cope well despite the adversity. There could be number of factors that can affect the QOL of carers which could include severity of the disability of the child, presence of cognitive or behavioural problems, socioeconomic status of the families, lack of education, low social support. Therefore, this study was conducted to assess the QOL of caregivers of children with developmental delay and compared with the caregivers of normal children.
| Materials and Methods|| |
This was a case–control study conducted among caregivers of children attending paediatric outpatient department (OPD) at ESICMC and PGIMSR, Bengaluru. This is a tertiary hospital which caters to the health needs of insured persons.
Caregivers of children aged between 3 and 18 years who have developmental delay attending the OPD were taken as cases and caregivers of children aged between 3 and 18 years who do not have developmental delay and attending OPD for ailments such as common cold, cough, and fever were taken as controls.
To estimate a mean difference in WHO-QOL score of 11.9 with a standard deviation (SD) of 7.42 and 8.17 among caregivers of developmental delay children and normal children respectively, with 95% confidence levels and 80% power, we have to study a minimum of six children in each group. However, we have studied caregivers of 30 children in each group.
For caregivers: Caregivers of children diagnosed to have developmental delay and common ailments of children (such as common cold, cough, and fever). Caregivers aged between 18 and 60 years who have given informed consent for children aged between 3 and 18 years and diagnosed to have developmental delay on screening. Fine motor, gross motor, language, and social development of children were assessed. Developmental delay in one domain was considered as mild, two domains as moderate, and three or more domains as severe/gross developmental delay.
For caregivers: Those with diagnosed organic psychosis or mental retardation or any other mental illness. For children: Children with hearing impairment, visual impairment, motor impairment, and speech impairment for controls.
Every Wednesday, 2.00–4.00 pm, a special developmental clinic OPD is run for children with developmental delay. Children attending this OPD were included as cases. Simple random sampling technique was used. Average developmental clinic OPD attendees were 40 per month. 30 numbers were randomly generated from 1 to 80, researcher attended all developmental clinic OPD and administered the questionnaire to cases. Age and gender matched controls were selected from the general OPD.
Questionnaire pro forma: A pro forma for the patients and their caregivers comprising of detailed sociodemographic profile were administered. Then to assess the QOL of the caregivers, the WHO QOL-BREF was used. Its primary aim is to assess one's subjective perception of his or her QOL.
WHO QOL BREF: The brief-version of WHOQOL-100 test developed by the WHO to determine individual quality-of-life in general. It consists of 26 items with 5-point scale. Four domains are divided in WHOQOL-BREF test, including (1) physical domain, (2) psychological domain, (3) social domain, and (4) environmental domain. There are also two items that are examined separately: One which asks about the individual's overall perception of QOL and the other which asks about the individual's overall perception of his or her health. Domain scores are scaled in a positive direction (higher scores denote higher QOL). The scale produces four domain scales. The transformed score is calculated as follows: Transformed score = (actual raw domain-lowest possible raw domain score/possible raw domain score range) × 100. The WHO QOL BREF questionnaire is validated and is available in 19 different languages which including Kannada (local language). The local language Kannada version was used in this study, which has been validated and has good reliability and internal consistency.
Proposal was submitted to the Institutional Ethical Committee and obtained ethical committee approval. Pilot testing of study tool was validated on 5% sample and suitable changes made in the final pro forma. At the time of entry into the study, after taking an informed consent, a pro forma for the patients and their caregivers comprising of detailed sociodemographic profile such as name, age, gender, educational status, occupation, income, and clinical profile sheet (for patients only) were administered. Then, the WHO QOL BREF was administered.
The data obtained are entered on an Excel spreadsheet and analyzed with descriptive statistics using epi Info statistical package version 8 which is a statistical software for epidemiology developed by Centers for Disease Control and Prevention in Atlanta, Georgia. Descriptive statistics were calculated mainly frequency averages: mean, median, and dispersion and SD, standard error, and quartiles. Tests of comparison for discrete variables were estimated using the Chi-square test. Tests of comparison for the continuous variables were examined using the independent Student's t-test for normal distribution and Mann–Whitney U-test in case of not normally distributed.
| Results|| |
[Table 1] shows the sociodemographic details of study groups. Thirty children each were recruited for the study under the case and control groups. Mean age among the two groups and gender between the two groups are comparable. Six (20.0%) children among cases were not going to school and 17 (56.7%) of them were going to a special school.
Of the 30 cases with developmental delay, 28 (93.3%) children had more than one diagnosis. Top five problems diagnosed among cases were epilepsy 23 (76.7%), global developmental delay 18 (60.0%), intellectual developmental delay 11 (36.7%), cerebral palsy 9 (30.0%), and speech disability 5 (16.7%). Among 30 controls chosen, 22 (73.3%) children presented with fever, 13 (43.3%) with acute respiratory illness, 11 (36.7%) with gastrointestinal disorders, and 9 (30.0%) with other problems. Of the 30 cases with developmental delay, 6 (20%) children had mild developmental delay, 9 (30%) moderate, and 15 (50%) had severe developmental delay. Caregivers of 14 (46.7%) children reported that they had past NICU admissions. Only 11 (36.7%) children were availing social security scheme in the form of financial support from the government.
[Table 2] shows the sociodemographic profile of caregivers in study groups. Majority of the caregivers interviewed (93.3% of cases and 90.0% of controls) were mothers of the study subject. 16.7% of the caregivers of controls were illiterates, whereas 3.3% of the caregiver of cases was illiterate. Majority 66.7% of caregivers of cases were homemakers, whereas only 26.7% of the caregivers of controls were homemakers. Majority, 56.7% of the caregivers of controls were garment workers. Financial expenses per month for cases were an average of 1190 ± 1048 Rupees as compared to controls that had an average expenditure of 23.3 ± 89.8 rupees, and this difference was found to be statistically significant. Caregivers of controls had a slightly higher average income of 17050 ± 6179 rupees as compared to that of cases which was 13433 ± 3169 rupees.
[Table 3] shows the comparison of WHO-QOL BREF scores between study groups. WHO-QOL BREF scores were classified into four domains, namely physical, psychological, social and relationships, and environment domains. For the developmental delay group, the individual mean in physical domain was 32.8 ± 9.5, psychological domain was 35.7 ± 7.2, social and relationships domain was 33.1 ± 8.6, and environment domain was 33.2 ± 10.5. The caregivers in the control group showed lower scores in physical, psychological, social and relationships, and environment domains of WHO-QOL BREF compared to those of caregivers of cases. Statistically significant differences were observed (P < 0.001) between the scores of the two groups in all these domains.
|Table 3: Comparison of World Health Organization quality of life BREF scores between cases and controls|
Click here to view
[Table 4] shows the comparison of WHO-QOL BREF scores within cases of developmental delay. Among the cases of developmental delay, QOL scores were lowest among caregivers of severe developmental delay followed by moderate developmental delay and mild developmental delay in physical, social relationship, and environment domains. However, statistical significance was found in physical, psychological, and social relationship domains (P < 0.05) of QOL.
|Table 4: Comparison of World Health Organization quality of life BREF scores within cases of developmental delay|
Click here to view
| Discussion|| |
This study demonstrates that QOL among caregivers of children with developmental delay is poor, evident by low individual mean in physical domain (32.8 ± 9.5), psychological domain (35.7 ± 7.2), social relationships domain (33.1 ± 8.6), and environment domain (33.2 ± 10.5). The present study showed that care-giving, especially toward a person with a disability can be stressful, as demonstrated by the lower mean QOL scores. In a study conducted by Shreekeerthi et al., QOL scores among caregivers of mentally retarded children are slightly higher than our cases. Similarly, lower individual QOL mean scores were observed in a community-based study done on caregivers of children with cerebral palsy. There are inherent difficulties in comparing the QOL across studies due to change in the study settings and methodology. Social and family support plays a major role in improving QOL score.
Mean QOL scores of caretakers of normal children were significantly higher than mean QOL scores of caretakers of children with developmental disability in all four domains. Similar results were observed in studies done among caretakers of mentally retarded children,, intellectual disabled children, cerebral palsy children, and autistic children. Mugno et al. in a study conducted on parents of pervasive developmental disorder reported impairment in physical activity and social relationships (P < 0.01) and worse overall perception of their QOL.
In our study, as the severity of the disability increased, there was worsening of QOL observed in all the four domains. However, significant association was found with physical, psychological, and social relationship domains. Similar observations were seen in various studies conducted among caregivers of children with other disabilities in various other studies.,,,,,
The domain “physical well-being” contains questions about physical health, sleep, pain and coping with everyday life and impairments in socioadaptive functioning along with increased dependency on parents which is time-consuming and impairs daily physical activities. In the present study, it has been found that caregivers in the developmental delay group have impaired functioning in physical domain of QOL. Mean scores of physical domain were least in this study compared to other domains. However, in other studies, they have found psychological domain to be the most affected., The impairment is more as the severity of the disability increases. These are similar results to those found in caregivers of children with different conditions, such as cerebral palsy, mental retardation, intellectual disability, and pervasive developmental disorders.
The domain of “psychological well-being” is associated with negative feelings of mood, sadness, anxiety, and dissatisfaction with oneself. Caregivers of developmental delay groups had significantly high impaired QOL in this domain. This domain is worst affected than compared to other domains of QOL. The impairment is worst in this domain may be because it is associated with parental feelings of isolation, feelings of incompetence, anxiety about future of oneself and the child, leading to sadness, grief, self-blame, guilt, and social shame.,
The domain “social relationship,” which especially contains questions about satisfaction with personal relationships and support from friends, is also significantly affected by the child's disability. Parents of children having disability often tend to avoid social situations to avoid the embarrassment they may experience because of the child's behavioral problems. In a study conducted by Leung and Li-Tsang, parents of children with disabilities had lower QOL in the domain of social relationships and environmental support but not in the domain of physical and psychological health.
The domain of “environment” includes questions about physical safety and security, home environment, health and social care, and other questions about one's daily life. There was a significant difference in the QOL between the caregivers of children with developmental delay and that of normal children. Beaver et al. in their study stated that QOL of the parents who get social support is good because family setting plays an important role in providing support to the distressed members and the members stay together at the time of crisis. Some of the mothers quit their jobs to take care of such children. Family co-operation especially support from spouse in taking care of the child helped them to cope with the situation in a better way.,,
Lower QOL among caregivers of disabled may be attributed to limited socio-adaptive functioning, difficult behaviors including temper tantrum and aggressive behaviors, limited social life due to being teased or rejected, need of constant supervision and assistance with daily living skills, financial constrains; the problems associated with school and related services; difficulty obtaining a correct diagnosis, worries about the future, poor communication and coordination among service providers.
The results of this study may have crucial practical implications. There are numerous studies which have proven social support for parents of children with developmental delay and subsequent disabilities improve their QOL outcomes. Society as a whole should recognize the efforts caregivers make in supporting their children with disabilities. The present findings have practical implications for assessing the health needs of population for the planning of clinical care of individual patients and for resource allocation. These results reaffirm that caregivers also need care and need to be seen as subjects and not only as guardians of children and adolescents with disorders in some developmental aspects. Considering current national and international health policy guidelines, we have to advocate complete attention to the children with developmental delay, implying the inclusion of family, and other caregivers.
All the caregivers of children with developmental delay were their parents and mostly mothers (93.0%). Although 96.7% of the caregivers were literates, only 23.6% were going for work others were homemakers. Caregiver's monthly income of cases was lower compared to that of controls, but their monthly expenses were significantly higher than that of controls. Most of the medical expenses were covered by social security scheme in this study; we can speculate the expenses of such caregivers without any assistance. Fifty percent of the cases were having severe developmental delay. Only 36.7% received financial assistance from the government in the form of pension. Activities of daily living of children with disability were significantly lower than compared to that of normal children. QOL was worse among caregivers of children with developmental delay than compared to that of normal children. QOL scores were significantly low in all the four domains, namely physical, psychological, social relationships, and environmental domain. As the severity of the illness increased, QOL of their caregivers became worse evident by lower QOL scales.
The basic services available for children in developing and underdeveloped countries are frequently weak or absent. The new global child health agenda shifts the debate from survival to thriving, thus underlining the need to support both child and family. There is a need to study QOL of caregivers of individual problems, thereby understanding specific problems. It is important to address social stigma and discrimination among them. Need assessment of children with developmental delay and their caregivers will help us understand their needs clearly. Initial survey to establish social support group needs to be done thereby enabling us to start a social support group in our hospital.
| Conclusions and Recommendations|| |
QOL of caregivers of children with developmental delay is worse compared to that of controls and it became worse with increase in the severity of the disability. QOL among caregivers are worse in physical, psychological, social and environmental domains among caregivers of disabled children than compared to caregivers of other children. A participatory training programme for caregivers of disabled children in a support group setting can offer improved understanding, confidence and self-esteem, and a reduction in self-blame resulting in improved care for the child. Creating support groups for caregivers will bring in positive changes in caregiver practices and peer-based social support which will help the child thrive better.
The authors would like to thank the Indian Council of Medical Research for providing financial support for conduction of the study.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Poon JK, LaRosa AC, Pai GS. Developmental delay timely identification and assessment. Indian Pediatr 2010;47:415-22.
Aron LY, Loprest PJ, Steuerle CE. Serving Children with Disabilities: A Systemic Look at the Programs. Washington, D.C: Urban Institute Press; 1996.
Ministry of Statistics and Programme Implementation, Social Statistics Division, Government of India: Disabled persons in India, A Statistical Profile; 2016. Available from: http://www.mospi.gov.in
. [Last accessed on 2019 Oct 19].
The WHOQOL GROUP. Development of the WHOQOL: Rationale and Current Status. Int J Mental Health 1994;23:24-56.
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist 1980;20:649-55.
Sreekeerthi D, Kumar MP. A comparative study of quality of life in caregivers of mental retardation and normal children. Sch J App Med Sci 2017;5:3793-8.
Singh TK, Indla V, Indla RR. Impact of disability of mentally retarded persons on their parents. Indian J Psychol Med 2008;30:98-104. [Full text]
Wisessathorn M, Chanuantong T, Fisher EB. The impact of child's severity on quality-of-life among parents of children with autism spectrum disorder: The mediating role of optimism. J Med Assoc Thai 2013;96:1313-8.
Leung CY, Li-Tsang CW. Quality of life of parents who have children with disabilities. Hong Kong J Occup Ther 2003;13:19-24.
Beavers J, Hampson RB, Hulgus YF, Beavers WR. Coping in families with a retarded child. Fam Process 1986;25:365-78.
Barnett WS, Masse LN. Comparative benefit-cost analysis of the Abecedarian program and its policy implications. Econ Educ Rev 2007;26:113-25.
Reynolds AJ, Temple JA, Robertson DL, Mann EA. Long-term effects of an early childhood intervention on educational achievement and juvenile arrest: A 15-year follow-up of low-income children in public schools. JAMA 2001;285:2339-46.
Kumar I, Akthar S. Rate of anxiety in mothers of mentally retarded children. Indian J Psychiatry 2001;43:27-30.
Girimaji SC, Srinath S, Seshadri S, Krishna DK. Family interview for stress and coping in mental retardation (fisc-mr): A tool to study stress and coping in families of children with mental retardation. Indian J Psychiatry 1999;41:341-9.
] [Full text]
Group W. Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group. Psychol Med 1998;28:551-8.
Shanbhag DN, Krishanmurthy A. Mental health and quality of life of caregivers of individuals with cerebral palsy in a community based rehabilitation programme in rural Karnataka. Disability, CBR & Inclusive Development 2012;22:10.
Meral BF, Cavkaytar A, Turnbull AP, Wang M. Family quality of life of Turkish families who have children with intellectual disabilities and autism. Researchand Pract Pers Sev Disabil 2013;38:233-46.
Misura AK, Memisevic H. Quality of life of parents of children with intellectual disabilities in Croatia. J Edu and Soc Res 2017;7:43-8.
Mugno D, Ruta L, D'Arrigo VG, Mazzone L. Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health Qual Life Outcomes 2007;5:22.
Prudente CO, Barbosa MA, Porto CC. Relation between quality of life of mothers of children with cerebral palsy and the children's motor functioning, after ten months of rehabilitation. Rev Lat Am Enfermagem 2010;18:149-55.
Barbarin OA, Hughes D, Chesler MA. Stress, coping, and marital functioning among parents of children with cancer. J Marriage Fam 1985;47:473-80.
Peshwaria R. Parent involvement in the training and management of their mentally handicapped persons. J Pers Clin Stud 1989;5:217-21.
Pearson JE, Sternberg A. A mutual help project for families of handicapped children. J Couns Dev 1986;65:213-5.
Schalock RL, Bonham GS, Verdugo MA. The conceptualization and measurement of quality of life: Implications for program planning and evaluation in the field of intellectual disabilities. Eval Program Plann 2008;31:181-90.
Donald KA, Kakooza AM, Wammanda RD, Mallewa M, Samia P, Babakir H, et al
. Pediatric cerebral palsy in Africa: Where are we? J Child Neurol 2015;30:963-71.
Besten DJ, Cornielje MT, Cornielje H, Botwey DN. Supporting parents in caring for children with disability in Ghana. Disabil CBR Incl Dev 2016;27: 87-101.
[Table 1], [Table 2], [Table 3], [Table 4]