http://doi.org/10.33698/NRF0145 – Gopal Singh, Raman Kalia, Karobi Das, KLN Rao

Abstract: A child’s illness has an impact on the entire family. It may affect the economic functioning of a family by altering the employment pattern and earnings of parents. Children with disabilities are more likely to need continuous care and supervision of the parents and repeated hospitalization. Hospitalization of a child puts lot of burden on the parents in terms of psychological, financial, physical, social and environmental. Hence an exploratory study was done to assess the ‘Burden of hospitalization’ among parents of children admitted under Department of Pediatric Surgery in Advanced Pediatric Centre, PGIMER, Chandigarh.A semi-structured interview schedule was prepared by consulting experts in the field of pediatrics, psychology, psychiatry and nursing. Performa included socio-demographic profile of child and parents, child’s illness history and modified version of burden scales (Pai and Kapoorand Zarit burden scale ) to assess burden of parents. The reliability of the tool was checked by using Cronbach’s Alpha test (0.70). Data was collected from Pediatric surgery ward and Neo Natal Surgical Intensive Care Unit (NNSICU) .The study was carried out on185 parents who were interviewed on the basis of the constructed semi structured schedule. Analysis revealed that majority of parents have faced moderate psychological, physical and social burden but low environmental burden. They faced severe financial burden. The challenge for the future is to find out the ways to support parents so that they can participate in the care of their children during hospitalization with the least amount of burden.

Key-words

Burden, Hospitalization

Correspondence at:

Mrs. Karobi Das

Lecturer, Clinical Psychology

National Institute of Nursing Education, PGIMER, Chandigarh

Background

The presence of a sick child in the family is distressing at any time and this distress is felt more if the child happens to have a disorder which requires continuous care and repeated hospitalization. A child’s illness has an impact on the entire family. Siblings may feel confused, uninformed and worried. They may also worry about other family members and peers. Illness of a child may affect the economic functioning of a family as it alters the employment pattern and earnings of parents. Children with disabilities are more likely to need continuous care and supervision of the parents.1,2

Burden related to care of child and hospitalization increases parental psychological distress in comparison to the family of healthy children. Research on parental stress relating to a child’s critical illness has focused mainly on the immediate psychological impact on parents, while their child is in the Pediatric Intensive Care Unit (PICU), when their anxiety levels are elevated to near panic. Caregivers are more likely to report family burden problems when child’s functioning is poor and health care needs are unmet. 3, 4, 5 Platt (1985)was the first to present a fairly elaborate definition in his assertion that burden refers to the presence of problems, difficulties or adverse events which affect the life of members of the household or the family. Family burden is usually divided into objective and subjective. Objective burden is related to social disturbances caused by the patients themselves, while subjective burden refers to “distress” actually experienced by them.The concept of the burden of care was defined in 1980 by Zarit, an American gerontologist, as the discomfort experienced by the principal caregiver of an older family member, including the caregiver’s health, psychological well- being, finances, and social life 6,7

Family burden has been extensively explored for illness like Schizophrenia, Dementia and Cancer by researchers. The majority of studies on burden of caregivers of patients having Schizophrenia conducted so far report significant burden of care-givers with over 90% of families experiencing moderate to severe burden. The burden was present in areas like finance, routine activities, family leisure and interaction.8

The burden on families ranges from emotional reaction to the illness, the stress of coping confronted with and the restriction of social activities to economic difficulties. In a study conducted by Shudy et al4 five principle areas of burden in both the groups were similar i.e. disruption in family relations, finance, care-giver’s occupation, patient care, physical and mental health of care-givers. Their study has shown that there is a significant amount of burden experienced by caregiver of patients having long-term physical illness and mental illness.9,10

The burden scale has been devised keeping Indian condition in mind and has been used in numerous studies with various categories of psychiatric patients. It has twenty-four items grouped under six areas of burden namely- financial burden, disruption of routine family activities, leisure, interactions, effect on physical health and mental health of others. Each item was rated on a three point scale- zero indicating no burden, one indicating moderate and two indicating severe burden.11,12

The need of the study was felt because there was hardly any work reported in the literature related to the burden of hospitalization. As a clinical nurse, apart from caring for the sick child, psychological support to the primary care giver/parents is of equal importance. It has been documented in several studies that parents of the hospitalized children are heavily laden with financial and psycho-social burdens. In this context, it is of utmost importance to explore multi-dimensional aspects of hospitalization that may add to parental stress. Exploration of these areas will help a nurse to understand those aspects that are mostly ignored in hospitals .An assessment of psychological, financial, social, environmental and physical stressors help to enhance the parental support systems by the nurses during the hospitalization of the child.

Objective

To explore the burden of hospitalization among parents of children admitted in units of Department of Pediatric Surgery.

Materials and Methods

The study was conducted at the Pediatric Surgery Ward (PSW) and Neonatal Surgical Intensive Care Unit (NSICU) of Advanced Pediatric Centre (APC), PGIMER Chandigarh.APC is exclusive child care centre of PGIMER with facilities to provide all the diagnostic, curative and rehabilitative services for children. It is a six-storey complex, divided into four Blocks (Block A, B C and D). The ground level has the registration counter, the clerical department and the emergency unit. Pediatric surgery ward is situated at 6th level in the C-Block and NSICU is also on the same floor at B-Block.

It is the only tertiary care hospital in North India catering to patients with wide range of psychological, medical and surgical problems. The patient population mainly comes from the northern states of Punjab, Haryana, Himachal Pradesh, Uttar Pradesh, Rajasthan and other adjoining states.

Both the wards cater to a large number of pediatric clients. (Neonates and children). Neonates having congenital anomalies requiring surgical management are admitted in the NSICU. The patients receive need based comprehensive and competent nursing care. Along with this, patients are monitored closely by the doctors who are available round the clock in the area. The pediatric operation theatre is also situated on the same floor in Block-A. Parents of all the children admitted to the respective clinical area pediatric surgery Ward (PSW) and NSICU during 8th Aug to 15th Sept. 2009 were selected as sample. The tool of the study was an interview schedule prepared after review of literature related to burden of hospitalization among parents due to the hospitalization of their child.The tool had two parts. Part A for collecting Socio-Demographic data and part B was Modified Burden Assessment Tool and was prepared by pooling of the items from Pai and Kapoor12 and Zarit burden scale.7

The Modified Burden Assessment had total 30 items divided into psychological, physical, social, financial and environmental burden. For each item responses were not at all, sometimes and most of the times and the responses were rated as 0, 1 and 2 respectively. Physical burden and psychological burden comprised of 6 items in each accounting for maximum 12 score. Social and financial burden comprised of 5 items in each resulting in maximum score of

  1. Environmental burden comprised of 7 items accounting for maximum score 14 and 30th item was for any other burden experienced by them. In physical burden and psychological burden less than 2 score indicated low burden, 3-7 score indicated moderate burden and 8- 12 score indicated severe burden. In social and financial burden less than 2 score indicated low burden, 3-6 score indicated moderate burden and 7-10 score indicated severe burden. In environmental burden less than 3 indicated low burden, 4- 8 indicated moderate burden and 9-14 indicated severe burden.

The tool was validated by experts from branches of Pediatric Nursing, Clinical Psychology, Psychiatry and Pediatrics. The tool (modified burden assessment tool) was translated into Hindi. The Hindi version of the tool was validated from experts in Hindi language and then back translated into English. Tools were also assessed for their completeness, content and language clarity during the pilot study. The reliability of the tool was checked by using Cronbach’s Alpha test method. Twenty-two subjects were interviewed during pilot study by this tool. The estimated value was found to be 0.71 which showed that the tool was reliable.

Data was collected in the month of August- September 2009 from 8am to 1pm and 2pm to 5pm. Permission for the data collection was taken from the Head, Department of Pediatric Surgery, APC, PGIMER, Chandigarh. The ANS / Sister In- charge, of the surgical ward and NSICU were informed about the study. Investigator introduced himself to the parents of children and explained the purpose of the study and informed consent was taken from them. Respondent (mother/father or both) who were providing care to the child in the hospital were interviewed with regards to socio- demographic data and burden of hospitalization as per Interview schedule. One hundred and eighty-five parents, were enrolled in the study and conducted interview from the Pediatric Surgery Department (PSW and NSICU) of PGIMER, Chandigarh. Data was analysed by using SSPS – 16 version.

Results

Socio demographic profile of parents and children

The socio demographic data of the parents revealed that 102 (55%) fathers and 83 (45%) mothers were interviewed. 74 (40%) of the parents were educated up to senior secondary while 29 (16%) were illiterate. Regarding their occupational status, out of 83 mothers 72(86.7%) were housewives. Among the 102 fathers 57(55.8%) were working as daily wagers while another 22(21.5%) were engaged in private jobs. 119 (64%) subjects were living in a joint family while 66 (36%) were staying in nuclear families. Two third (65%) of parents belonged to rural areas while remaining 65 (35%) came from urban areas. Three fourth of parents (72%) belonged to Hindu religion, 42(22%) were Sikh and 11(6%) were Muslims. About half of the subjects (48.6%) had monthly family income ranging from Rs. 5000/- to 6000/.

The socio demographic profile of children revealed that there were 40 (22%) neonates, 43 (23%) infants, 37 (20%) toddlers, 34 (18%) pre-school age children and 31 (17%) school-going age children. Majority of the children were males 141(77%).

Table 1: Socio demographic profile of the children        (N=185)

 

Sample Characteristics Frequency (%)
Age  
Neonate 040 (22)
Infancy 043 (23)
Toddler 037 (20)
Pre-school 034 (18)
School going 031 (17)
Gender  
Male 141(77)
Female 044 (23)
Religion  
Hindu 132 (72)
Sikh 042 (22)
Muslim 011(06)
Ward  
NSICU 078 (42)
PSW 107 (58)
Numbers of Surgeries  
I Surgery 163 (88)
II Surgery 021(11)
III Surgery 001(01)

More than half i.e. 107 (58%) were admitted in PSW while 78 (42%)were from NSICU. It was further observed that majority i.e. 163 (88%) children were hospitalized for the first time however 21 (11%) were being admitted for second surgery and only one was admitted for third surgery.

Burden of hospitalization

The different aspects of burden of hospitalization on the parents as per the burden score revealed that parents experienced psychological, physical, social, financial and environmental burden. In the category of psychological burden, majority 163 (88%) of the parents had moderate burden and 18 (10%) and 4 (2%) were in the category of severe and low burden respectively. The mean burden score was 5.4 +1.62 indicating on an average moderate burden experienced by parents. They felt frustrated due to slow improvement of child’s illness. They felt isolated, lonely and anxious due to child’s sickness.

Similarly, in physical burden majority 155 (84%) of subjects were having moderate burden, whereas only 19 (10%) and 11 (6%) of subjects scored low and severe burden respectively. The mean score of the subjects experiencing physical burden was 4.9 + 1.76 indicating on an average moderate burden experienced by parents. Parents had to spend sleepless nights. They neglected their own health. Many of them felt loss of appetite and had lost weight also.

Same trend was noticed in the category of social burden. More than half i.e. 108 (58%) of subjects were having moderate social burden, 64 (35%) were having low and 13 (7%) were having severe burden. The mean score of the subjects experiencing social burden was 3.5 + 2.12 indicating on an average moderate burden experienced by parents. They had communication problem in the hospital and had missed social functions due to sickness of child.

Table 2: Burden of hospitalization on the parents           (N=185)

Low                        004 (02)         5.4 (1.62)Types of Burden             Frequency (%) Mean (SD) Psychological burden

Moderate                     163 (88)

Severe                      018 (10)

 

Physical burden

Low                        019(10)              4.9 (1.76)

Moderate                     155 (84)

Severe                      011(06)

 

Social burden

Low                        064(35)              3.57 (2.12)

Moderate                     108 (58)

Severe                      013 (07)

 

Financial burden

Low                        012 (07)         6.28 (2.39)

Moderate                     080 (43)

Severe                      093 (50)

 

Environmental burden

Moderate                     126 (68)           3.27 (1.52)

Severe                      059 (32)

The results in the area of financial burden reveal that half of the parents were having severe burden, 80 (43%) had moderate and others 12 (7%) low financial burden. The mean financial burden was 6.28 + 2.39 indicating on an average moderate burden experienced by parents. They had to take loans from banks and other family members.

In environmental burden two third of parents (68%) were having low burden and another 59 (32%) had moderate burden. None of parents experienced severe burden. The mean score was 3.27 + 1.52 indicating on an average low burden experienced by parents. Some of them felt the lack of privacy and some were disturbed with the noise in the hospital.

Table- 3 depicts the relationship between psychological burden with education and occupation. Parents’ educated up to the primary level experienced moderate (89.6%) burden while 8.3% experienced severe burden. Parents with senior secondary education experienced moderate (92.3%) burden while 6.8% of them had severe burden. On the other hand 30% of more educated parents (graduate degree) had severe psychological burden. The relationship was significant as per x2test (P<0.05). Significantly higher percentage of working parents (14.2%) experienced severe psychological burden as compared to housewives (2.8%) as per x2test (P<0.05).

Table – 3 : Psychological Burden in relation to Socio-Demographic profile of parents

 

Socio-demographic characteristics Psychological Burden Low (%)  

Moderate (%)

 

Severe (%)

X2 , df, p
Educational Status

Upto Primary

 

1(2.1)

 

43 (89.6)

 

4 (8.3)

 

12.24,4,<0.05

Senior Secondary 1(0.9) 108 (92.3) 8 (6.8)  
Graduate 2(10.0) 12 (60.0) 6 (30.0)  
Occupation

Working(govt/pvt/agri)l

 

2 (1.8)

 

95 (84.0)

 

16 (14.2)

 

6.54, 2, <0.05

House Wives 2 (2.8) 68 (94.4) 2 ( 2.8)  

Financial burden in relation to socio demographic profile of parents indicated that significantly higher percentage of parents having qualification up to senior secondary experienced severe financial (54.5%) burden as compared graduate parents (15.5%) as per chi square test (p< 0.05). Severe financial burden was experienced by significantly higher percentage of parents having family income up to Rs. 6000/- (58.3%) and parents living in rural areas (55.8%) as compared to parents having family income from Rs 6000/- to Rs. 20000/- (15%) and parents living in urban areas (40%) as indicated by chi square test (p<0.05) (Table-4)

Table – 4 : Psychological Burden in relation to Socio-Demographic profile of parents

 

Socio-demographic characteristics Psychological Burden Low (%)  

Moderate (%)

 

Severe (%)

X2 , df, p
Educational Status

UptoUptoSenior Secondary

 

8 (4.8)

 

67 (36.2)

 

90 (54.5)

 

13.7,2,<0.05

Graduate 4 (20.0) 13 (65.0) 3 (15.0)  
Family Income (Rs)

UptoRs 6000

 

6 (4.7)

 

48 (37.2)

 

75 (58.3)

 

11.05, 2, <0.05

Rs.6000-20000 6 (10.7) 32 (57.1) 18 (32.1)  
Locality

Rural

 

3 (2.5)

 

50 (41.7)

 

67 (55.8)

 

10.5, 2, <0.05

Urban 9 (13.8) 30 (46.2) 26(40.0)  

Table 5 depicts the relationship between physical burden and type of family. Significantly higher percentage of parents belonging from joint families experienced moderate burden(86%) and severe burden (8%) as compared to parents from nuclear families (79% experienced moderate burden and 3% experienced severe burden) (p<0.05 as per chi square test).

Table – 5 : Physical Burden in relation to Socio Demographic profile of parents

 

Socio-demographic characteristics Physical Burden Low (%)  

Moderate (%)

 

Severe (%)

X2 , df, p
Type of Family

Nuclear

 

12 (18.0)

 

52 (79.0)

 

2 (3.0)

 

8.09,2,<0.05

Joint 7 (6.0) 103 (86.0) 9 (8.0)  

Table No. 6 depicts the relationship of environmental burden with the type of wards child was admitted in, the child developmental stage and the type of family. Moderate environmental burden was experienced by significantly higher percentage of parents whose children were admitted in NSICU (57.3%), having neonates/infants (47.0%) and were from joint families (40.3%) as compared to their counterparts (p<0.01 as per chi square test). However severe environmental burden was not experienced by any parent.

Table – 6 : Environment Burden in relation to wards, child age & type of family

Socio-demographic characteristics Physical Burden Low (%)  

Moderate (%)

X2 , df, p
Ward

NSICU

 

38 (48.7)

 

40 (57.3)

 

28.42,1, <0.01

PSW 88 (82.2) 19 (17.8)  
Child’s Age

Neonate/ Infancy

 

44 (53.0)

 

39 (47.0)

 

22.4, 3, <0.01

Toddler 31(83.8) 6 (16.2)  
Pre School 28(82.4) 6 (17.6)  
School Going 23(74.2) 8 (25.8)  
Type of Family

Nuclear

 

55 (83.3)

 

11 (16.7)

 

11.09, 1, <0.01

Joint 71 (59.7) 48 (40.3)  

 Discussion

A child’s illness has an impact on the entire family and the parents of a hospitalised child experienced a lot of burden of care. One of the major causes of burden is that the parents are caring for their hospitalized children for longer period of time. There is considerable individual variability in how they have handled the experiences which are typically stressful for the parents. The present study has focused on different dimensions of the burden experienced by parents and different types of problems they face while caring their hospitalised children.

Literature has revealed that Family burden has been explored for illness like Schizophrenia, Dementia and Cancer by researchers. The majority of studies on burden of caregivers of patients having Schizophrenia conducted so far report significant burden on caregivers with over 90% of families experiencing moderate to severe burden. The burden was present in areas like finance, routine activities, family leisure and interaction.8The burden of parents while care of hospitalised child is comparatively neglected area and very few studies are there. In the present study, an attempt has been made to study five dimensions of burden experienced by the parents of hospitalised children i.e. psychological, physical, social, financial and environmental burden. It was a tremendous challenge for the researcher to assess burden in parents who were with their hospitalized child.

A number of burden scales to assess the care burden of family caregivers of impaired or elderly patients have been developed in various countries, including Japan, such as the Zarit Burden Interview (ZBI), Caregiver Strain Index (CSI), Care Burden Inventory (CBI), Caregiver Reaction Assessment (CRA), Care Burden Scale (CBS), Nakatani’s Burden Scale and Pai and Kapur’s interview schedule to assess the socio-economic burden of asthma on the family. But none of the scale was found to fit for the present study. Hence the tool used in this study is modified version of scale (Pai and Kapoor, Zurit burden scale and R. Thara et al).Pooling of the items was done after consulting experts and the significant literature and final tool was prepared. 7, 12

The analysis revealed that highest burden was experience in the category of financial burdenwhich is further followed by the category of physical, social and psychological . The lowest burden was in the category of environment. Similar findings for the care givers of an older family member were reported by Zarit,(1980), an American gerontologist i.e. the discomfort experienced by the principal caregiver including the caregiver’s health, psychological well-being, finances, and social life 7The majority of studies on burden of caregivers of patients having Schizophrenia conducted so far report significant burden of care-givers with over 90% of families experiencing moderate to severe burden. The burden was present in areas like finance, routine activities, family leisure and interaction.8In another study conducted by Shudy and Londan reported disruption in family that there is a significant amount of burden experienced by caregiver of patients having long-term physical illness and mental illness.4This mean that all types of sickness to any member of family put lot of burden on the care givers and same is true with the sickness of children.

Educational and occupational status of parents, family income, locality and type of family child’s age and ward where child is admitted were correlated with the burden experienced by the parents significantly.

The limitations of the study was that it focused on only five dimensions of burden. Secondly burden was assessed only on parents who stayed with the child in the hospital. It is recommended that similar study can be undertaken for the parents whose children are admitted with medical conditions. Further dimensions of burden could also be explored. The challenge for the future is to find ways to support parents so that they can participate in the care of their children during hospitalization with the least amount of burden.

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