- Email: [email protected]
Psychosocial and economic problems of parents of children with epilepsy
Seizure 1999; 8: 66 –69
Article No. seiz.1998.0241, available online at http://www.idealibrary.com on
Psychosocial and economic problems of parents of children with epilepsy Sanjeev V. Thomas∗ & V. B. Bindu
Department of Neurology and Medical Social Work, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum, India Correspondence to: Sanjeev V. Thomas MD, DM, Department of Neurology, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum 695 011, India
The parents of children with epilepsy (PCE) face multiple psychosocial and economic problems that are often neglected. We undertook this study to ascertain these problems among the patients attending a tertiary referral center for epilepsy in India. A structured questionnaire was administrated to parents of 50 children aged between 5–10 years and having epilepsy for more than 1 year’s duration. Some 52% of the children had partial epilepsy whilst the remaining had generalized epilepsy. The median seizure frequency was one per 6 months. The majority of the patients (86%) were living in villages. The family income was less than 1000 Rs per month (1 USD = 42 INR) for 66% of the patients. A decline in social activities, after the onset of epilepsy in their children, was reported by 80% of the parents. Daily routines were significantly affected in over 75% of the parents. Parents had been experiencing frustration (52%) and hopelessness (76%), whilst 60% were in financial difficulties. The most important item of expenditure was cost of drugs or cost of travel to hospital for 54% and 36% parents respectively. Impaired emotional status and poor social adaptation were co-related with the severity of epilepsy (frequent seizures/generalized seizures/attention disorder) and low economic status of the parents. These observations need to be borne in mind while organizing rehabilitation programs for epilepsy. Key words: psychosocial issues; economic aspects; health planning; self-help; institutional care; day care.
Introduction Parents of children with epilepsy suffer many psychosocial problems that are largely neglected. Caring for such children on a regular basis takes away their time for personal care, leisure and other commitments besides eroding their physical and mental health. The support systems that are available to such parents are limited even in developed countries. Parents of children with epilepsy often have to leave their jobs or use the services of elderly relatives to take care of such children. This leads to great economic and social constraints. Precise data on such issues are essential in organizing services for the parents and mobilizing financial assistance. Unfortunately these issues have drawn little attention. The cultural value systems and social practices vary widely from region to region even within the same country. Hence, it is difficult to develop a standard yard stick to measure the social and emotional problems of parents of children with any chronic ill∗ E-mail:
[email protected]
1059–1311/99/010066 + 04
$12.00/0
ness, including epilepsy. But this does not reduce the importance of the subject. We have surveyed the social, emotional and economic problems of Parents of Children with Epilepsy (PCE) by interviewing 50 PCE attending an epilepsy clinic in Trivandrum, India.
Materials and methods This study was carried out in the Epilepsy Clinic of Sree Chitra Tirunal Institute for Medical Sciences and Technology, India which is a tertiary referral center for neurological disorders in Kerala state, with a population of 27 million. The parents were requested to rate their psychological, social and economic status, in comparison to the time period before their children developed epilepsy. A structured questionnaire containing several questions pertaining to emotional, social, family life and economic problems was used (see Appendix). The interviewer established a rapport with the patient and discussed the questions in their mother tongue and colc 1999 British Epilepsy Association
Problems of parents of epileptic children
lected the data. The parents were included only when the children were aged between 5 and 10 years of age, and had epilepsy for more than a year. Children aged less than 5 years and those with associated physical or mental disability were excluded as they required a great deal of help and care unrelated to epilepsy.
Statistical analysis Results were compiled as a database and analysed with SPSS (Statistical Package for the Social Sciences) PC+ software. Non-parametric tests such as the Pearson correlation coefficient were applied to ascertain any correlation between psychosocial outcome, economic problems and clinical or demographic characteristics.
67
(76%). There was a significant correlation (P < 0.05) between the emotional disturbances (frustration, anger, guilt feeling) and occurrence of seizures in the previous 6 months. Social and emotional problems were significantly higher (P < 0.05) among the lower economic subgroup than among the others. Over 75% of the parents admitted to dislocation (occasional to very frequent) in their daily routines after the onset of epilepsy in their children, i.e. poor sleep 82%, little time for meals (76%) and poor personal care (74%). The emotional support offered to the respondent by the spouse varied widely (always 56%, occasionally 36% and never 8%). In 36% of families, the child’s illness was a reason for arguments between parents.
Economic problems Results Demographic characteristics Parents of 50 children with epilepsy (25 boys and 25 girls) were evaluated under this protocol. The respondents in the interview consisted of 44% fathers and 56% mothers. The demographic characteristics of PCE were comparable to the local community. Some 64% were Hindus, 26% were Christians and 10% were Muslims; 86% were living in villages and 14% were living in urban areas. The monthly income of the family was less than 1000 Rs for 66% and greater than 1000 Rs for 34% of the patients (1 USD = 43 INR).
Clinical characteristics The mean age of the children was 8 ± 1.5 years, and the mean age of onset of epilepsy was 2.6 ± 2.4 years. The clinical characteristics of epilepsy covered a wide range: 52% had partial epilepsy, 48% had generalized epilepsy, 34% had more than one type of seizure, 6% had absence, 42% had generalized tonic–clonic seizure, 38% had complex partial seizure and 6% had myoclonic seizure. Family history of epilepsy was present in 16% cases. Median seizure frequency was one seizure per 6 months (range 0–80), and 22 children had no seizure in the previous 6 months).
Psychosocial outcome The majority of the parents reported a decline in their social and leisure activities after their child developed epilepsy (see Table 1). On the emotional front, the parents admitted to frequent frustration (52%), depression (48%), anger (38%), guilt (12%) and hopelessness
Nineteen of the respondents (38%) were employed, nearly half of them (47.4%) had to take unpaid leave to attend to their children. One parent (5.3%) had obtained a job transfer to take better care of his child. However, nobody had resigned from a job because of their child’s illness. Fifty-five percent of the parents had drafted the help of other family members (grandparents, elder children and other senior members in the case of a joint family) to take care of the child. Sixty percent of parents reported financial hardship due to their child’s illness, 22% were receiving monetary support from other members in the family, and 34% had to make special arrangements such as an escort or personal transport for the child’s travel to school. The single most important expenditure was the cost of drugs for 54% of parents, the cost of travel to hospital for 36% of parents, the cost of hospitalization for 6% of parents and the cost of investigations for 4% of parents. There was a significant correlation between the parents’ perception of financial difficulties and mental depression (P = 0.04) as well as impaired personal care (P = 0.03).
Discussion This study has addressed the psychosocial and economic problems of PCE. We adopted a structured interview method in this study as most of the respondents were unfamiliar with filling in a questionnaire. There is wide variation in the standards of social life from region to region even within a country. We took great care while formulating the items in the questionnaire to ensure that the regional social practices and preferences were adequately covered. There are very few reports on this issue and, to the best of our knowledge, this is the first report from a developing country. Certain background information on the characteristics of these
68
S. V. Thomas & V. B. Bindu
Table 1: Change in social activities of parents after their children developed epilepsy. Social activities of parents Unchanged (%) Decreased (%) Going to the movies 69 31 Watching TV and videos 71 29 Visiting friends and relatives 62 38 Celebrating functions 80 18 Visiting holy places 30 0 Interference with sleep 46 36 Interference with eating habits 14 62 Interference with personal care 12 62
patients needs to be kept in mind while interpreting these data. The study was carried out in an advanced center for epilepsy, hence the sample involves relatively severe types of epilepsies. This state has the highest literacy rate (>90%) in India and stands much ahead of other states from health statistics view point1 . The vast majority of PCE have significant psychosocial and economic problems, particularly among the lower income group. There is a close relationship between severity of epilepsy namely seizure frequency, presence of attention disorder, occurrence of generalized tonic–clonic seizure and parents’ social maladaptation or economic hardship. Only a third of the sample were employed, and the child’s epilepsy had interfered with their job for nearly half of them. There was significant loss of funds for the parents as nearly half of them had to take unpaid leave to take care of their children with epilepsy. This study has revealed major psychosocial and economic problems among the parents of children with epilepsy. At present there are no organized ser-
Increased (%) 0 0 0 2 70 18 24 26
vices for counseling of parents, or day care for children with epilepsy in Kerala. Austin and McDermott2 have observed that the coping patterns of parents have a co-relation with their attitude towards epilepsy. Parental concerns regarding the psychosocial aspects of epilepsy are largely neglected3 . A positive attitude to epilepsy may be facilitated among parents through suitable educational programs, which should form an integral part of any comprehensive epilepsy care system.
References 1. }Registrar General of India. Census of India 1991, Series 12 Kerala paper 1 of 1991. New Delhi, Government of India, 1991. 2. }Austin and McDermott, N. Families of children with epilepsy. Journal of Neuroscience Nursing 1988; 20: 174–179. 3. }Coulter, D. L. and Koester, B. S. Information needs of parents of children with epilepsy. Journal of Developmental Behavioural Paediatrics 1984; 6: 334–338.
Appendix Social and emotional problems of parents Please give your opinion as to how the following parameters have changed for you after your child developed epilepsy. Has your social status deteriorated after your child developed epilepsy?
Yes/No
When compared to earlier, is there any change in the following social activities after your child developed epilepsy? (1) Going to a movie Increased/decreased/unchanged/not applicable (2) Watching TV or a video Increased/decreased/unchanged/not applicable (3) Visiting friends and relatives Increased/decreased/unchanged/not applicable (4) Celebrating social functions in your home Increased/decreased/unchanged/not applicable (5) Visiting holy places Increased/decreased/unchanged/not applicable Are you disturbed by any of the following emotional problems because of your child’s epilepsy? (1) Frustration Always Occasionally Rarely (2) Depression Always Occasionally Rarely (3) Anger Always Occasionally Rarely (4) Guilt Always Occasionally Rarely (5) Hopelessness Always Occasionally Rarely How often has your child’s illness compromised your?
Problems of parents of epileptic children
(1) Sleep (2) Food Habits (3) Personal care
Always Always Always
69
Occasionally Occasionally Occasionally
Does your spouse support you —by helping in the care of the child? —by providing emotional support?
Rarely Rarely Rarely
Always Always
Occasionally Occasionally
Rarely Rarely
How often do you end up quarrelling with your spouse because of your child’s illness? Always Occasionally Rarely
Economic problems Does the child’s illness interfere with your employment/productivity? If yes how (a) you had to take extra care of the child Yes (b) you had to take leave without pay to attend to the child Yes (c) you required a job transfer to attend to the child Yes (d) you had to quit (resign) from your job Yes Do you receive financial assistance from others for the child’s care?
Yes/No No No No No
NA NA NA NA Yes/No
Did you have to make any special arrangements for your child’s travel to school (because of epilepsy)? Yes/No Has the child’s illness increased your financial burden?
Yes/No
A list of probable expenditures related to care for epilepsy given below: (a) Travel (b) Clinical Investigations (c) Doctor’s fee (d) Hospitalization charges (e) Cost of drugs Rank the two most important items of expenditure in your case.
No.1
No.2
Article No. seiz.1998.0241, available online at http://www.idealibrary.com on
Psychosocial and economic problems of parents of children with epilepsy Sanjeev V. Thomas∗ & V. B. Bindu
Department of Neurology and Medical Social Work, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum, India Correspondence to: Sanjeev V. Thomas MD, DM, Department of Neurology, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum 695 011, India
The parents of children with epilepsy (PCE) face multiple psychosocial and economic problems that are often neglected. We undertook this study to ascertain these problems among the patients attending a tertiary referral center for epilepsy in India. A structured questionnaire was administrated to parents of 50 children aged between 5–10 years and having epilepsy for more than 1 year’s duration. Some 52% of the children had partial epilepsy whilst the remaining had generalized epilepsy. The median seizure frequency was one per 6 months. The majority of the patients (86%) were living in villages. The family income was less than 1000 Rs per month (1 USD = 42 INR) for 66% of the patients. A decline in social activities, after the onset of epilepsy in their children, was reported by 80% of the parents. Daily routines were significantly affected in over 75% of the parents. Parents had been experiencing frustration (52%) and hopelessness (76%), whilst 60% were in financial difficulties. The most important item of expenditure was cost of drugs or cost of travel to hospital for 54% and 36% parents respectively. Impaired emotional status and poor social adaptation were co-related with the severity of epilepsy (frequent seizures/generalized seizures/attention disorder) and low economic status of the parents. These observations need to be borne in mind while organizing rehabilitation programs for epilepsy. Key words: psychosocial issues; economic aspects; health planning; self-help; institutional care; day care.
Introduction Parents of children with epilepsy suffer many psychosocial problems that are largely neglected. Caring for such children on a regular basis takes away their time for personal care, leisure and other commitments besides eroding their physical and mental health. The support systems that are available to such parents are limited even in developed countries. Parents of children with epilepsy often have to leave their jobs or use the services of elderly relatives to take care of such children. This leads to great economic and social constraints. Precise data on such issues are essential in organizing services for the parents and mobilizing financial assistance. Unfortunately these issues have drawn little attention. The cultural value systems and social practices vary widely from region to region even within the same country. Hence, it is difficult to develop a standard yard stick to measure the social and emotional problems of parents of children with any chronic ill∗ E-mail:
[email protected]
1059–1311/99/010066 + 04
$12.00/0
ness, including epilepsy. But this does not reduce the importance of the subject. We have surveyed the social, emotional and economic problems of Parents of Children with Epilepsy (PCE) by interviewing 50 PCE attending an epilepsy clinic in Trivandrum, India.
Materials and methods This study was carried out in the Epilepsy Clinic of Sree Chitra Tirunal Institute for Medical Sciences and Technology, India which is a tertiary referral center for neurological disorders in Kerala state, with a population of 27 million. The parents were requested to rate their psychological, social and economic status, in comparison to the time period before their children developed epilepsy. A structured questionnaire containing several questions pertaining to emotional, social, family life and economic problems was used (see Appendix). The interviewer established a rapport with the patient and discussed the questions in their mother tongue and colc 1999 British Epilepsy Association
Problems of parents of epileptic children
lected the data. The parents were included only when the children were aged between 5 and 10 years of age, and had epilepsy for more than a year. Children aged less than 5 years and those with associated physical or mental disability were excluded as they required a great deal of help and care unrelated to epilepsy.
Statistical analysis Results were compiled as a database and analysed with SPSS (Statistical Package for the Social Sciences) PC+ software. Non-parametric tests such as the Pearson correlation coefficient were applied to ascertain any correlation between psychosocial outcome, economic problems and clinical or demographic characteristics.
67
(76%). There was a significant correlation (P < 0.05) between the emotional disturbances (frustration, anger, guilt feeling) and occurrence of seizures in the previous 6 months. Social and emotional problems were significantly higher (P < 0.05) among the lower economic subgroup than among the others. Over 75% of the parents admitted to dislocation (occasional to very frequent) in their daily routines after the onset of epilepsy in their children, i.e. poor sleep 82%, little time for meals (76%) and poor personal care (74%). The emotional support offered to the respondent by the spouse varied widely (always 56%, occasionally 36% and never 8%). In 36% of families, the child’s illness was a reason for arguments between parents.
Economic problems Results Demographic characteristics Parents of 50 children with epilepsy (25 boys and 25 girls) were evaluated under this protocol. The respondents in the interview consisted of 44% fathers and 56% mothers. The demographic characteristics of PCE were comparable to the local community. Some 64% were Hindus, 26% were Christians and 10% were Muslims; 86% were living in villages and 14% were living in urban areas. The monthly income of the family was less than 1000 Rs for 66% and greater than 1000 Rs for 34% of the patients (1 USD = 43 INR).
Clinical characteristics The mean age of the children was 8 ± 1.5 years, and the mean age of onset of epilepsy was 2.6 ± 2.4 years. The clinical characteristics of epilepsy covered a wide range: 52% had partial epilepsy, 48% had generalized epilepsy, 34% had more than one type of seizure, 6% had absence, 42% had generalized tonic–clonic seizure, 38% had complex partial seizure and 6% had myoclonic seizure. Family history of epilepsy was present in 16% cases. Median seizure frequency was one seizure per 6 months (range 0–80), and 22 children had no seizure in the previous 6 months).
Psychosocial outcome The majority of the parents reported a decline in their social and leisure activities after their child developed epilepsy (see Table 1). On the emotional front, the parents admitted to frequent frustration (52%), depression (48%), anger (38%), guilt (12%) and hopelessness
Nineteen of the respondents (38%) were employed, nearly half of them (47.4%) had to take unpaid leave to attend to their children. One parent (5.3%) had obtained a job transfer to take better care of his child. However, nobody had resigned from a job because of their child’s illness. Fifty-five percent of the parents had drafted the help of other family members (grandparents, elder children and other senior members in the case of a joint family) to take care of the child. Sixty percent of parents reported financial hardship due to their child’s illness, 22% were receiving monetary support from other members in the family, and 34% had to make special arrangements such as an escort or personal transport for the child’s travel to school. The single most important expenditure was the cost of drugs for 54% of parents, the cost of travel to hospital for 36% of parents, the cost of hospitalization for 6% of parents and the cost of investigations for 4% of parents. There was a significant correlation between the parents’ perception of financial difficulties and mental depression (P = 0.04) as well as impaired personal care (P = 0.03).
Discussion This study has addressed the psychosocial and economic problems of PCE. We adopted a structured interview method in this study as most of the respondents were unfamiliar with filling in a questionnaire. There is wide variation in the standards of social life from region to region even within a country. We took great care while formulating the items in the questionnaire to ensure that the regional social practices and preferences were adequately covered. There are very few reports on this issue and, to the best of our knowledge, this is the first report from a developing country. Certain background information on the characteristics of these
68
S. V. Thomas & V. B. Bindu
Table 1: Change in social activities of parents after their children developed epilepsy. Social activities of parents Unchanged (%) Decreased (%) Going to the movies 69 31 Watching TV and videos 71 29 Visiting friends and relatives 62 38 Celebrating functions 80 18 Visiting holy places 30 0 Interference with sleep 46 36 Interference with eating habits 14 62 Interference with personal care 12 62
patients needs to be kept in mind while interpreting these data. The study was carried out in an advanced center for epilepsy, hence the sample involves relatively severe types of epilepsies. This state has the highest literacy rate (>90%) in India and stands much ahead of other states from health statistics view point1 . The vast majority of PCE have significant psychosocial and economic problems, particularly among the lower income group. There is a close relationship between severity of epilepsy namely seizure frequency, presence of attention disorder, occurrence of generalized tonic–clonic seizure and parents’ social maladaptation or economic hardship. Only a third of the sample were employed, and the child’s epilepsy had interfered with their job for nearly half of them. There was significant loss of funds for the parents as nearly half of them had to take unpaid leave to take care of their children with epilepsy. This study has revealed major psychosocial and economic problems among the parents of children with epilepsy. At present there are no organized ser-
Increased (%) 0 0 0 2 70 18 24 26
vices for counseling of parents, or day care for children with epilepsy in Kerala. Austin and McDermott2 have observed that the coping patterns of parents have a co-relation with their attitude towards epilepsy. Parental concerns regarding the psychosocial aspects of epilepsy are largely neglected3 . A positive attitude to epilepsy may be facilitated among parents through suitable educational programs, which should form an integral part of any comprehensive epilepsy care system.
References 1. }Registrar General of India. Census of India 1991, Series 12 Kerala paper 1 of 1991. New Delhi, Government of India, 1991. 2. }Austin and McDermott, N. Families of children with epilepsy. Journal of Neuroscience Nursing 1988; 20: 174–179. 3. }Coulter, D. L. and Koester, B. S. Information needs of parents of children with epilepsy. Journal of Developmental Behavioural Paediatrics 1984; 6: 334–338.
Appendix Social and emotional problems of parents Please give your opinion as to how the following parameters have changed for you after your child developed epilepsy. Has your social status deteriorated after your child developed epilepsy?
Yes/No
When compared to earlier, is there any change in the following social activities after your child developed epilepsy? (1) Going to a movie Increased/decreased/unchanged/not applicable (2) Watching TV or a video Increased/decreased/unchanged/not applicable (3) Visiting friends and relatives Increased/decreased/unchanged/not applicable (4) Celebrating social functions in your home Increased/decreased/unchanged/not applicable (5) Visiting holy places Increased/decreased/unchanged/not applicable Are you disturbed by any of the following emotional problems because of your child’s epilepsy? (1) Frustration Always Occasionally Rarely (2) Depression Always Occasionally Rarely (3) Anger Always Occasionally Rarely (4) Guilt Always Occasionally Rarely (5) Hopelessness Always Occasionally Rarely How often has your child’s illness compromised your?
Problems of parents of epileptic children
(1) Sleep (2) Food Habits (3) Personal care
Always Always Always
69
Occasionally Occasionally Occasionally
Does your spouse support you —by helping in the care of the child? —by providing emotional support?
Rarely Rarely Rarely
Always Always
Occasionally Occasionally
Rarely Rarely
How often do you end up quarrelling with your spouse because of your child’s illness? Always Occasionally Rarely
Economic problems Does the child’s illness interfere with your employment/productivity? If yes how (a) you had to take extra care of the child Yes (b) you had to take leave without pay to attend to the child Yes (c) you required a job transfer to attend to the child Yes (d) you had to quit (resign) from your job Yes Do you receive financial assistance from others for the child’s care?
Yes/No No No No No
NA NA NA NA Yes/No
Did you have to make any special arrangements for your child’s travel to school (because of epilepsy)? Yes/No Has the child’s illness increased your financial burden?
Yes/No
A list of probable expenditures related to care for epilepsy given below: (a) Travel (b) Clinical Investigations (c) Doctor’s fee (d) Hospitalization charges (e) Cost of drugs Rank the two most important items of expenditure in your case.
No.1
No.2