https://doi.org/10.33698/NRF0291-Harpreet Kaur , Neena vir Singh, Sukhpal Kaur, Sandeep Singh Rana
ABSTRACT:
Background: The worldwide incidence of CHD is 8-10/1000 live birth. Technological advancement of medical science has increased the survival rate of such patients. Parents feel fear and anxiety during treatment in hospital. Adequate education can relieve the anxiety of parents. Objective: To assess the satisfaction of caregivers regarding their involvement in care of children suffering with congenital heart disease. Methodology: Total 64 caregivers were involved in the study in two groups i.e. 32 in experiment and 32 in control selected from CTVS, ACC, PGIMER, Chandigarh. Experiment group was educated to get involved in the post- operative care of child as per protocol which was developed in the form of booklet. The educational package includes brief description of congenital heart diseases, its causes, risk factors, signs and symptoms. diagnostic measures, treatment, complications, preventions and care after surgery in home setting. Basic procedures for care of children e.g. handwashing, oral care, axillary temperature monitoring and sponge bath were demonstrated and return demonstrations were taken from the caregivers of experiment group. At the time of discharge, satisfaction level of caregivers was assessed by using a satisfaction rating scale. Results: It is observed that at the time of discharge, in experiment group 90% caregivers were very satised but on the contrary in control group less than 10% caregivers were satised. Conclusion: It is concluded that the involvement of caregivers improves the satisfaction level of caregivers.
Key Words: Educational Package, Congenital Heart Disease, Family Caregivers, Satisfaction.
Address for correspondence
Ms Neena Vir Singh Lecturer
National Institute of Nursing Education PGIMER, Chandigarh
Background:
Congenital heart defects are mostly seen in neonates, infants and children. The worldwide incidence of CHD is 8-10/1000 live births according to various series from different part of the world.1,2 Pre-disposing factors responsible for congenital heart disease are fetal and maternal infection like German measles, drugs which causes teratogenic effect, exposure to radiation and alcohol consumption in the rst trimester of pregnancy. Common symptoms are fast breathing, blue skin colour (Cynosis), swelling around the eyes, shortness of breath during feeding and low birth weight.
Echocardiography, Electrocardiography, Pulse oximetry, Chest X-ray and MRI are the tests for diagnosis of the congenital heart defects. The commonly performed interventions are Catheterization technique, open heart surgery and heart transplant. The post-operative care after cardiac surgery is very technical and complex. The caregivers need to be guided every step of care to increase competency and self-efcacy for home care of children after discharge. Caregiver need to practice basic skill like handwashing, oral care, sponge bath, temperature checking, deep breathing exercises, physiotherapy and ambulation. It is important to involve families in the recovery plan of their children so that health team get cooperation from family members. It will also help them in taking care of child at home after discharge in the absence of health care providers. This will increase their satisfaction as well.
Major Congenital Heart Defects can be life threatening if not treated early. Parents of these children are not aware about the treatment and future precautions regarding diet, medication, hospital follow up, schooling, how much and what type of playing games is allowed to these children. The treatment of these diseases gives very frightened experience to the caregivers. Parents feel fear during treatment of their children3. that Parents are burdened and anxious during hospitalization of children as proved by various studies. Nurses play key role to educate caregivers about the care of their children. They can provide clear, concise and consistent information. Parents are anxious during hospitalization period.4 Involving them in the care of child under supervision can relieve their anxiety and providing them satisfaction.5 Keeping this in mind the present study was undertaken.
Objective:
To assess the satisfaction of caregivers regarding their involvement in care of children suffering with congenital heart disease.
Material and Methods:
The present study was conducted in the month of August-November, 2018 in CTVS- A, ACC, PGIMER, Chandigarh. Total 64 caregivers of children suffering with congenital heart diseases admitted during July, August 2018 were involved in study selected by total enumeration sampling technique. Protocol of involving caregivers in the care of child was prepared and validated by the experts in the eld of Nursing and department of Cardio Thoracic and Vascular surgery. It included various components like brief description of the disease, risk factors d i a g n o s t i c m e a s u r e s , t r e a t m e n t , complications and preventions. Basics procedures of care like handwashing, sponge bath, oral care were also included in the protocol. The tool used for data collection included an interview schedule comprising of (a)demographic data. (b)Satisfaction Scale comprising of 10 standard items rated on ve- point Likert type scale. Each statement has 1- 5 score according to their level of satisfaction. Score 1 was given to very dissatised, score 2 was given to dissatised, score 3 was given neither satised nor dissatised, score 4 was given to satised, score 5 was given to very satised category. Total score of scale was of 10-50 range. Caregivers scoring <25 were considered dis-satised, 25-40 satised and > 40 have very satised. Ethical clearance was taken from the Institute Ethic Committee of PGIMER, Chandigarh and permission for data collection was taken from Head, Department of Cardio Thoracic and Vascular Surgery PGIMER, Chandigarh. Written informed consent was taken from all the research participants. Control group participants were were given routine care. Satisfaction level of caregivers was assessed at the time of discharge by interviewing them. In the experiment group parents were involved in the care of their child as per protocol. They were told about the sickness of the child and treatment. An educational booklet comprising information about care of child with congenital heart diseases was given to them. Basic care procedures e.g. handwashing, oral care, axillary temperature m o n i t o r i n g a n d s p o n g e b a t h w e r e demonstrated and return demonstrations were taken from the caregivers.
Results:
Table-1 shows the sociodemographic prole of caregivers in both the groups. The mean age ± SD of the control study participants were31.09 ± 4.74 (range: 21-43 years) and in experimental group it was 30.77 ± 5.39 (range: 21-47 years).
Female caregivers overwhelmed male participants in both groups i.e. 91% in experiment group and 69% in control Majority of the study participants were graduate and above i.e. 72% in experiment group and 60% in control group. Most of participants in control group (97%) and experiment group (94%) have taken grant for treatment of their children from government sector. Both groups were comparable as per Age, type of family, education status, occupation (p>0.005).
Table 1: Socio-demographic profile of the caregivers among both the groups
N=64
| Variables | Control group n1=32 | Experimental group n2=32 | X2 (df)
p-value |
| f (%) | f (%) | ||
| Age (years)*
21-25 26-36 37-47 |
7(22)
18(56) 7(22) |
10(31)
14(44) 8(25) |
1.38(2)0.49 |
| Gender
Female Male |
22(69)
10(31) |
29(91)
3(9) |
4.73(1)0.03 |
| Education Status of caregiver
Primary school Middle school High school Graduate & above |
2(6)
3(9) 8(25) 19(60) |
2(6)
2(6) 5(16) 23(72) |
1.27(3)0.73 |
| Occupation caregiver
Professional Shop keeper/farmer/clerk Skilled worker Semiskilled worker Unemployed |
2(6)
1(3) 3(9) 1(3) 25(79) |
– 1(3)
1(3) 1(3) 29(91) |
5.29(5)0.38 |
*Age (mean ± SD, range) : Control group 31.09±4.74(21 -43) Experiment group 30.77±5.3 (20-46)
** Monthly income (mean ± SD, range) : Control group Rs.27181±35465.17 (6000 -200000)
Experiment group Rs.18500±6937.50(10000 -40000)
Table 2 shows the comparison of satisfaction level of caregivers of children suffering with congenital heart disease as per category of the score. In experiment group all the caregivers were in highly satised category. On the other hand, in
|
||||||||||||||||||||
Table 2 : Comparison of satisfaction level regarding involvement in care of children a
control group none of the caregivers was in highly satised category. 27 % caregivers were in satisfactory category in control group. This difference was statistically signicant (p<.001 as per Fisher’s exact test.
Table-3 describes the responses of all the questions of satisfactory questionnaire. In Experiment group 91% participants were very satised regarding respect given to rights of patients and caregivers. Similar trend was also observed when asked about the interaction with patients and caregivers, kind and friendly, willing to understand needs, providing care techniques, involvement in care and health education to caregivers i.e. 97%.
On the contrary the level of satisfaction of control group participants indicated that only 9% participants were satised and none of the participant was very satised in respect given of rights of patients and caregivers. Similar trend was observed regarding interaction with patient and caregivers. No one was observed in satised and very satised category, 47% participants were observed neither satised nor dissatised category. In easy to reach care 60% participants were neither satised nor dissatised. The participants satisfaction regarding providing caring techniques, knowledge of illness and involvement in care of patients only 44% participants were neither satised or nor dissatised category. 3% were satised, when asked about the health education 47% participants were dissatised and 7% participants were observed in satised category.
Discussion
Congenital heart defects can be a cause of death in neonates and infancy periods. The caregivers of these children need teachings regarding pre and post-operative care. The nding of this study describes the satisfaction level of caregivers of children suffering from congenital heart disease. The result of this study showed that satisfaction level of the caregivers s i g n i c a n t l y i m p r o v e d a f t e r t h e involvement of caregivers in post – operative care with the help of an educational package. In experiment group, all of the participants were very satised whereas in control group only 12% subjects were satised. The result shows that in experiment group caregivers were very satised in terms of respect given to them, interaction with patient and caregivers, kind and friendly behaviour, teaching
Table 3: Assessment of satisfaction of the caregivers of both the group
| Sr.
No. |
Variables | Groups Control n1=32
Experi n2=32 |
Very satisfied
5 |
Satisfied 4 | Neither Satisfied not dis satisfied
3 |
Dis satisfied 2 | Very dis satisfied 1 |
| 1. | Respect given to rights of patients
and caregivers |
C n1 (%)
E n2 (%) |
– 29(91) | 3(9)
3(9) |
18(56)
– |
7(22)
– |
4(13)
– |
| 2. | Interaction with patient and
caregivers |
C n1 (%)
E n2 (%) |
– 31(97) | —
1(3) |
15(47)
– |
15(47)
– |
2(6)
– |
| 3 | Kind and friendly
with patient and caregivers |
C n1 (%)
E n2 (%) |
– 31(97) | 1(3)
1 3) |
14(44)
– |
15(47)
– |
2(6)
– |
| 4 | Easy to reach for care | C n1 (%)
E n2 (%) |
–
30(94) |
–
2 6) |
19(60)
– |
10(31)
– |
3(9)
– |
| 5 | Provided care and assistance | C n1 (%)
E n2 (%) |
–
31(97) |
1(3)
1(3) |
15(47)
– |
15(47)
– |
1(3)
– |
| 6 | Willing to understand needs of patient and
caregivers |
C n1 (%)
E n2 (%) |
– 31(97) | – 1(3) | 19(60)
– |
11(34)
– |
2(6)
– |
| 7 | Provided caring techniques | C n1 (%)
E n2 (%) |
–
31(97) |
1(3)
1(3) |
14(44)
– |
15(47)
– |
2(6)
– |
| 8 | Provided knowledge of
illness |
C n1 (%)
E n2 (%) |
– (31(97) | – 1(3) | 14(44)
– |
16(50)
– |
2(6)
– |
| 9 | Involvement in care of patient | C n1 (%)
E n2 (%) |
–
(31(97) |
1(3)
1(3) |
14(44)
– |
14(44)
– |
3(9)
– |
| 10 | Health education | C n1 (%)
E n2 (%) |
–
31(97) |
2(7)
1(3) |
11(34)
– |
15(47)
– |
4(13)
– |
caring techniques and health education. On the other hand, caregivers who received routine care were mostly neither satised not dissatised. The results of this study gave evidence that education plays a signicant role to deal with caregivers’ anxiety and overall satisfaction. To keep this concept in mind the educational package was developed for the caregivers of children suffering with congenital heart disease.
The evidences show that education regarding pre and post-operative care increases the skill efcacy and satisfaction of care givers. Study on evaluation of pre- operative information by Bogusaite, et al 5 also support that preoperative information or education for pediatric patient can relieve the anxiety of families and improve the post-operative care outcome of children.
The participation of parents in the care of children gives them satisfaction and give safety feeling to the children. It also increases autonomy and decision making concerning the care of children. A systematic review conducted by Menahen (2008) 6 has found that mothers are the rst caregivers of children. In the present study, in control group 69% and in experiment group 91% caregivers were mothers. Sabzevari et al 7 support that mother plays key role in caring of children.
In a study conducted by Chan, et al 8, children age 1-9 years and their parents were studied. The results of this study show that the parents who received the educational programme reported decrease in anxiety (p<0.01) and higher level of their satisfaction. Kain et al9 also support that i n v o l v e m e n t o f p a r e n t s i m p r o v e satisfaction. In the present study, in interventional group, parents who were involved in post-operative care of children were highly satised than control group (p<0.01).
Conclusion: From the result of this study, it was found that the education regarding congenital heart diseases and care can improve the satisfaction levels of family caregivers.
Recommendations: It is recommended to involve family members of children pre- operatively as it increases their satisfaction. Similar study can be conducted on large papulation for generalization of ndings.
Limitations: Study sample was limited because of availability of patients in study period.
References:
- Abdulla RI. What is the prevalence of Congenital heart diseases? Pediatric cardiology 1997 July1;18(4):269.
- American Academy of Pediatrics. Report of New England regional infant cardiac program. Pediatrics. 1980. Feb;65(2 Pt2)375-461
- Poudel P, Malla C. Knowledge of Mothers Regarding Home Care of Children undergone Cardiac Surgery with a View to Develop an Information Booklet. 1. 2017 Oct 13;2(1):38–43.
- Forsythe New practices in the transitional care center improve outcomes for babies and their Wisselo et al 1 0 also found that families. J Perina-tol. 1998;186(6, pt information booklet was the rst choice of the parents. They prefer education in written form. In present study written educational booklet regarding post- operative care of congenital heart disease was provided to caregivers.2) (suppl):s13-s1
- Bogusaite L, Razlevice I, Lukosiene L, Macas A. Evaluation of Preoperative Information Needs in Pediatric Anesthesiology. Med Sci Monit. 2018 Dec 4;24:8773–80.
- Menahem S, Poulakis Z, Prior M. Children subjected to cardiac surgery for congenital heart disease. Part 1 – Emotional and psychological outcomes. Interact CardioVasc Thorac Surg. 2008 Aug 1;7(4):600–4.
- Sabzevari S, Nematollahi M, Mirzaei T, Ravari A. The Burden of Care: Mothers’ Experiences of Children with Congenital Heart Disease. Int J Community Based Nurse Midwifery. 2016;4(4):374–85.
- Chan CS, Molassiotis A. The effects of an educational programme on the anxiety and satisfaction level of parents having parent present induction and visitation in a postanaesthesia care unit. Pediatric Anesthesia. 2002 Feb;12(2):131-9.
- Kain ZN, Caldwell-Andrews AA, Maranets I, McClain B, Gaal D, Mayes LC, et al. Preoperative anxiety and emergence delirium and postoperative maladaptive behaviors. Anesth Analg. 2004 Dec;99(6):1648–54.
- Wisselo TL, Stuart C, Muris P. Providing parents with information before anaesthesia: what do they really want to know? Pediatric Anesthesia.2004; – Wiley 14(4):299- 307.[Internet]. [cited 2019 Jul 27]. Available from: https://onlinelibrary.wiley.com/doi/ab s/10.1046/j.1460-9592.2003.01222.x