Int J Curr Pharm Res, Vol 15, Issue 6, 104-108Original Article

EXPLORING THE QUALITY OF LIFE OF PARENTS AND SIBLINGS OF CHILDREN WITH CEREBRAL PALSY: IMPLICATIONS FOR CAREGIVING AND SUPPORT

VIDHI KOTIYA, RICHA CHOUDHARY*, ANJU YADAV

Department of Pediatric Medicine, Sir Padampat Institute of Neonatal and Pediatric Health, SMS Medical College, Jaipur, Rajasthan, India
*Corresponding author: Richa Choudhary; *Email: richa_c8@yahoo.co.in

Received: 20 Aug 2023, Revised and Accepted: 05 Oct 2023

ABSTRACT

Objective: This study aimed to explore the quality of life (QOL) of parents and siblings of children with cerebral palsy (CP) and its implications for caregiving and support.

Methods: A hospital-based cross-sectional descriptive study was conducted in the Department of Pediatrics, S. P. M. C. H. I. Hospital, SMS Medical College, Jaipur, India, from March 2021 to December 2021. Parents and siblings of children with CP, aged 2-12 y, were enrolled. The World Health Organization Quality of Life-BREF (WHOQOL-BREF) questionnaire was used to assess QOL. Data analysis was performed using descriptive statistics and SPSS software.

Results: The study included 100 parents and siblings of children with CP. Most children had normal birth weight and were born at term. Spastic quadriplegia was the most common type of CP observed. More than half of the children had other medical conditions, with epilepsy being the most prevalent. WHO-QOL BREF scores were low across all domains. Physical domain was the most affected (9.97±2.15), followed by Social interaction domain (10.48±2.32) and psychological domain (10.83±2.26) and Environment domain (11±2.23). The age and gender of the child, severity of disability, education of caretakers, family type, socioeconomic status, chronic illness did not significantly impact the QOL of caregivers. Caregivers with impaired functional status reported lower QOL scores. Meeting scheduled appointments positively influenced caregivers' physical and environmental domain scores.

Conclusion: The caregivers of children with CP experience lower quality of life and high levels of stress. If sustained over time it can affect family dynamics and quality of care provided to such children with CP. The implications of these findings can guide the development of targeted interventions and support programs for caregivers of children with CP.

Keywords: Cerebral palsy, Quality of life, Caregivers, Siblings, Support, Intervention

© 2023 The Authors. Published by Innovare Academic Sciences Pvt Ltd. This is an open access article under the CC BY license (https://creativecommons.org/licenses/by/4.0/)
DOI: https://dx.doi.org/10.22159/ijcpr.2023v15i6.3089. Journal homepage: https://innovareacademics.in/journals/index.php/ijcpr

INTRODUCTION

Cerebral palsy (CP) is a non-progressive neurological disorder that permanently affects body movements and muscle coordination, with a prevalence rate of 2.83 per 1000 children in the age group of 0 to 19 y. In India, it stands as one of the leading causes of disability [1]. CP is characterized by impaired movement and posture due to defects or injuries to the developing brain. The condition's impact is further compounded by associated disabilities such as epilepsy, learning disabilities, behavioural and emotional problems, cognitive impairment, chronic pain, speech and visual impairments, and gastrointestinal and feeding difficulties [2, 3]. In addition to physical limitations, children with CP often require significant assistance with basic self-care functions such as feeding, dressing, bathing, and mobility. Consequently, these children are frequently confined to their homes, leading to restricted participation in daily activities.

Raising a child with a disability presents unexpected challenges and places substantial demands on caregivers. Care giving for a physically challenged child becomes a full-time job that can result in stress, strain on marital relationships, limited social interactions, reduced recreational time, and neglect of personal appearance [4]. Caregivers of children with CP commonly experience anxiety, social stigma, and a lack of social support. Unfortunately, caregivers often find themselves thrust into this demanding situation without prior preparation [5].

Caregivers' quality of life (QOL) is influenced by a combination of demographic factors and the child's disability. QOL, as defined by the World Health Organization, encompasses an individual's perception of their position in life within the context of culture, values, goals, expectations, standards, and concerns. It is a multidimensional concept that includes physical health, psychological state, independence, social relationships, personal beliefs, and the environment [6]. Assessing QOL is crucial in medical practice for improving the doctor-patient relationship, evaluating treatment effectiveness, assessing health services, conducting research, and informing policy-making. QOL holds relevance for chronic and impairing conditions such as cerebral palsy, intellectual disability, and autistic spectrum disorder [6].

Parents of children with developmental disabilities often face heightened stress, impaired mental health, feelings of devaluation, self-blame, and physical exhaustion [7]. The level of impairment in the QOL experienced by families caring for children with these severe chronic conditions is influenced by a complex interplay of environmental and genetic factors, including socioeconomic status, social support, parental and child characteristics, and coping strategies [8]. Studies have shown that higher levels of behaviour problems in children with cerebral palsy contribute to greater deterioration in their caregivers' psychological and physical health [9]. Additionally, research in Western countries indicates that the QOL of parents caring for children with developmental disorders is closely linked to the well-being and progress of their children [4, 10].

The impact of CP is not limited to the child but is extended to the caregivers of the child. This study aims to enhance our understanding of the QOL experienced by caregivers of children with cerebral palsy and determine the factors which affect their QOL, which is useful in planning interventions to improve caregiver well-being.

MATERIALS AND METHODS

Study place

The study was conducted in the Department of Paediatrics, S. P. M. C. H. I. Hospital, SMS Medical College, Jaipur.

Study period

From Mar 2021-Dec 2021.

Study design

This was a hospital-based cross-sectional descriptive questionnaire-based study.

Study population

Parents and siblings of children with cerebral palsy between 2-12 y of age attending pediatric OPD or Rehabilitation services with a voluntary willingness to participate in the study were enrolled.

Statistical analysis

Statistical analysis was done with descriptive statistics using SPSS version 10. The WHO-QOL data was analyzed using an SPSS syntax that automatically checks, re-codes data and computes the domain scores.

Sample size

The sample size is calculated at a 95% confidence level, expecting 70% of the parents to report QOL as neither good nor poor as per the reference article. At a 10% absolute allowance, the required sample size was 100 parents and siblings of a Cerebral palsy child.

Inclusion criteria

Parents and siblings (>8 y), belonging to families with an already diagnosed cerebral palsy (CP) child aged 2 to 12 y were considered eligible for participation. Only the individuals who had been consistently attending pediatric Outpatient Department (OPD) or Child Development Center (CDC) services over a continuous 3-month period were included as potential subjects. Participation was limited to those who had provided their explicit consent to take part in the study, ensuring a basis of voluntary and informed involvement.

Exclusion criteria

Parents and siblings of children diagnosed with cerebral palsy (CP) who also had comorbidities such as ADHD or autism were considered ineligible for participation. Additionally, individuals with acute medical illnesses were also excluded to avoid potential influences on the research outcomes.

Data collection

The semi-structured questionnaire consisted of the personal information profile and demographic details of parents, siblings, and affected children, thorough clinical assessment of the child, including GMFCS (gross motor function classification system) of CP child, associated co-morbidities in CP children. World Health Organization Quality of Life-BREF (WHOQOLBREF-) Questionnaire [6] was used to assess the quality of life of caregivers. It consists of 26 questions divided into four domains: physical, psychological, social, and environment. Each question was assigned an appropriate number of points from 1 to 5 (1=very dissatisfied to 5=very satisfied). Domain scores were scaled in a positive direction (i.e. higher scores denote higher quality of life). The mean score of items within each domain was used to calculate the domain score. The interpretation was done as per the specification in the WHOQOL-BREF questionnaire. Stress level was measured using a perceived stress scale [11]. Care-giving process was assessed by the availability of adequate healthcare resources, physiotherapy and ability to meet up with the scheduled appointments at health care facility.

RESULTS

In the current study, 100 caregivers of children with CP were enrolled. Half of the caregivers were aged between 30-39 y (51%) and one fourth (28%) were aged below 20 y. Fathers were the most common caregiver of children with cerebral palsy (44%), followed by mothers (29%) and siblings (27%). Nearly half of the caregivers were Graduate (47%), while 17% were illiterate. Only 42% of the caregivers had adequate knowledge about Cerebral palsy. Most of the caregivers had no chronic illness, while 13% of the caregivers had chronic illness.

Table 1: General characteristics of caregiver

N Percentage (of 100)

Relation with

child

 Father 44 44
Mother 29 29
Sibling 27 27
Age <20 y 28 28
20-29 y 16 16
30-39 y 51 51
40-49 y 5 5
Education Illiterate 17 17
Upto 10th 13 13
Upto 12th 23 23
Graduate/PG 47 47

Knowledge

About CP

 Yes 42 42
No 58 58

Any chronic

illness

 Yes 13 13
No 87 87
Socio economic status Lower class 45 45
Middle class 51 51
Upper class 4 4

Table 2: Demographic and clinical characteristics child with cerebral palsy

Characteristic Type N Percentage (of 100)
Age group(years) <5 y 31 31
5-9 y 50 50
≥10 y 19 19
Gender Male 63 63
Female 37 37
Birthweight LBW 18 18
NBW 82 82
Gestational age at birth Preterm 13 13
Term 87 87
Type of cerebral palsy Ataxic 1 1
Dyskinetic 12 12
Mixed 6 6
Spastic diplegia 27 27
Spastic hemiplegia 13 13
Spastic
quadriplegia 41 41
Associated Comorbidity Epilepsy 27 27
Haemophilia 2 2
Hearing loss 4 4
Infantile spasm 3 3
ITP 3 3
Intellectual
disability 1 1
Movement disorder 4 4
Vision impairment 7 7
No 49 49
GMFCS level 1 5 5
Level 2 15 15
level 3 35 35
Level 4 23 23
Level 5 22 22

Among the children with cerebral palsy, half (50%) were aged 5–9 y. Male to female ratio was found to be 1.7:1. Only 13% of the children were born prematurely and 18% were low birth weight. Spastic quadriplegia (41%) was the most prevalent kind of cerebral palsy in children, followed by spastic diplegia (27%), spastic hemiplegia (13%), and dyskinetic (12%). About half of the children with cerebral palsy had other associated morbidities, with epilepsy being the most prevalent (27%). Evaluation of motor function using GMFCS scale revealed that 45% of the children had severe restrictions in mobility (level 4 and 5) and nearly one-third (35%) walked with the use of hand-held mobility devices (level 3).

Table 3: WHO-QOL BREF domain scores of caregivers

Domain WHO-QOL BREF scores (mean±SD) Range
Physical 9.97±2.15 5–16
Psychological 10.83±2.26 7–17
Social 10.48±2.32 6–16
Environment 11±2.23 6–17

Quality of life of caregivers was assessed using WHO-QOLBREF. Scores were low across all domains. Physical domain was the most affected, with a score of 9.97±2.15, followed by Social domain (10.48±2.32) and psychological domain (10.83±2.26). Environment domain was least affected, with a score of 11±2.23.

Table 4: WHO-QOL BREF Domain scores in relation to characteristics of affected children

WHO-QOL BREF domain scores
Physical Psychological Social Environment
Age group (years) <5 y 9.87±1.5 11±1.98 10.19±2.24 11.19±2.21
5-9 y 10.02±2.39 10.74±2.37 10.6±2.37 11.06±2.35
≥10 y 10±2.49 10.79±2.49 10.63±2.39 10.53±1.93
Pvalue 0.954 0.880 0.713 0.572
Gender Male 9.9±2.01 10.86±2.15 10.33±2.14 10.84±2.03
Female 10.08±2.4 10.78±2.46 10.73±2.61 11.27±2.52
Pvalue 0.695 0.876 0.412 0.354
Associated Comorbidity Yes 9.51±1.94 10.25±2.13 10.22±2.47 10.61±2.3
No 10.45±2.27 11.43±2.25 10.76±2.15 11.41±2.09
Pvalue 0.028 0.009 0.247 0.072
GMFCS level 1 9.2±0.84 10.6±1.67 9.4±1.52 11±1.41
Level 2 10±1.77 10.53±0.99 10.73±1.71 10.8±1.52
level 3 10.4±2.51 11.51±2.42 10.77±2.58 11.31±2.79
Level 4 10.26±1.96 11±2.11 10.7±2.03 11.48±1.73
Level 5 9.14±2.03 9.82±2.61 9.86±2.64 10.14±2.1
Pvalue 0.219 0.087 0.475 0.270

WHOQOL domain scores were low in all age groups and both genders. Physical and social domain score were minimum in children below 5 y of age and male gender. However, the association was not found to be significant (p>0.05). Physical and psychological domain score was found to be significantly less among caregivers of children with the presence of other comorbidities as compared to those without. When correlated with the level of motor disability, the physical, psychological, and environmental domain scores were found to be lowest among caregivers of children with the highest physical impairments (GMFCS level 5).

Table 5: WHO-QOL BREF domain scores in relation to characteristics of caregivers

WHO-QOL BREF domain scores
Physical Psychological Social Environment
Age <20 y 11.25±2.65 12.04±2.53 11.64±2.6 11.96±2.4
20-29 y 9.25±1.57 10.75±2.02 9.25±1.69 10.69±1.66
30-39 y 9.53±1.59 10.25±1.87 10.31±2.12 10.71±2.09
40-49 y 9.6±3.21 10.2±3.03 9.6±1.95 9.6±2.88
Pvalue 0.002 0.007 0.005 0.035
Education Illiterate 9.41±1.54 10.82±2.21 9.88±2.12 10.41±1.91
Upto 10th 10.23±3.49 11±2.74 10.46±2.47 10.85±3.08
Upto 12th 10.96±2.33 11.74±2.58 11.57±2.78 11.96±2.27
Graduate/PG 9.62±1.62 10.34±1.87 10.17±1.98 10.79±1.96
Pvalue 0.057 0.110 0.070 0.113

Knowledge

About CP

 Yes 9.98±1.89 10.64±2.24 10.31±2.05 10.71±1.9
No 9.97±2.34 10.97±2.29 10.6±2.51 11.21±2.43
Pvalue 0.981 0.484 0.535 0.277

Any chronic

illness

 Yes 9.92±2.81 11±2.92 10.62±2.22 11±2.31
No 9.98±2.06 10.8±2.17 10.46±2.35 11±2.23
Pvalue 0.933 0.773 0.823 1.000
Socio economic status Lower class 10.02±2.32 10.89±2.47 10.36±2.3 10.64±2.25
Middle class 9.94±2.1 10.84±2.15 10.57±2.36 11.37±2.23
Upper class 9.75±0.5 10±1.15 10.75±2.63 10.25±1.26
Pvalue 0.963 0.755 0.881 0.221
Scheduled appointments met Yes 10.33±2.08 10.97±2.22 10.79±2.21 11.34±2.19
No 9.24±2.14 10.55±2.35 9.85±2.45 10.3±2.16
Pvalue 0.017 0.380 0.056 0.027

The score of all four domains of QOL were highest among caregivers aged<20 y, indicating better QOL. In psychological and environmental domain, the scores kept falling with increasing age of caregivers. Significant association was seen in between age of caretakers and all the domains of QOL (p<0.05). Physical and psychological domain scores were lowest among graduate caretakers, while social and environmental domain scores were lowest among illiterate caretakers. Physical, psychological, and environmental domain scores were lowest among caretakers from upper socioeconomic status, while social domain scores were lowest among caretakers from lower socio-economic status. All the four domain scores were found to be better among caretakers who met scheduled appointments for the child with CP as compared to those who could not.

Most of the caretakers had moderate perceived stress (76%), while 12% had high perceived stress and only 12% had low perceived stress. All the WHO QOL domain scores were highest among patients with low perceived stress. Significant association was found between physical (p=0.006) and psychological scores (p<0.001) and perceived stress of caretakers.

Fig. 1: WHO-QQL BREF domain scores

DISCUSSION

This study sought to better understand the quality of life (QOL) of parents and siblings of children with cerebral palsy (CP) and its implications for caregiving and support. The physical, emotional, and social health of parents, as well as their parenting techniques, are intricately related to the health and well-being of their children. The findings of our study revealed several important insights into the challenges faced by caregivers and the impact on their QOL. The study included 100 parents and siblings of children with CP. Most of the children had normal birth weight and were born on time. Spastic quadriplegia was the most common type of CP observed, and more than half of the children had other medical conditions, with epilepsy being the most prevalent. These findings align with previous research, which has consistently shown a high prevalence of spastic quadriplegia and comorbidities in children with CP [12].

One of the key findings of the study was that caregivers reported low QOL scores across all domains, with the physical domain being the most affected. This is consistent with previous researchers that have shown the significant impact of caregiving for a child with CP on the physical health and well-being of parents, though the most affected domain may vary [13, 14]. Caregiving for a child with CP often involves extensive physical demands, such as lifting, transferring, and aiding with daily activities, which can take a toll on the caregiver's physical health [15].

We found that the parents who had children with impaired functional status, according to GMFCS had lower mean scores in physical, psychological, and environmental domains. Interestingly, the severity of the child's disability as per GMFCS did not significantly impact the QOL of caregivers. This suggests that other factors, such as social support, coping strategies, and the availability of resources, may play a more significant role in determining the well-being of caregivers. This finding highlights the need for comprehensive support services and interventions to improve caregiver well-being, regardless of the severity of the child's disability.

The study also found that caregivers with impaired functional status reported lower QOL scores. This emphasizes the importance of considering the caregiver's own health and functional abilities when designing support programs and interventions. Providing resources and assistance to help caregivers maintain their own physical and mental well-being is crucial in ensuring optimal care for the child with CP [4].

Another noteworthy finding was that the age and of the child did not significantly affect caregivers' QOL scores. This suggests that the challenges and demands of caregiving persist throughout the child's developmental stages and that ongoing support and interventions are needed regardless of the child's age [10, 16]. We also observed a decline in the QOL of caregivers in all four domains as age of the caregiver increased.

Furthermore, meeting scheduled appointments positively influenced caregivers' physical and environmental domain scores. This finding highlights the importance of access to healthcare services and the role of healthcare providers in supporting caregivers. Timely and regular medical care, as well as clear communication and collaboration with healthcare professionals, can help alleviate some of the burden on caregivers and improve their QOL. A significant factor causing stress for parents is being aware of existing opportunities in treatment and rehabilitation while at the same time not having access to these opportunities due to economic barriers [17].

Overall, the study underscores the significant impact of caring for a child with CP on the QOL of parents and siblings. The findings of this study align with previous research in the field. Several studies have highlighted the challenges faced by parents of children with CP and their impact on QOL. It emphasizes the need for comprehensive support services and interventions to improve caregiver well-being. Understanding the factors influencing QOL can guide the development of targeted interventions and support programs for caregivers of children with CP [18].

Furthermore, studies have shown that the QOL of parents caring for children with developmental disorders is closely linked to the well-being and progress of their children. For example, a study by Raina et al. highlighted the interplay between the QOL of parents and the health and well-being of children with CP [4].

So, our study adds to the growing body of literature on the QOL of parents and siblings of children with CP. The findings highlight the significant impact of care giving on the physical, psychological, and social well-being of caregivers. The study emphasizes the need for comprehensive support services, including access to healthcare, social support, and interventions to improve caregiver well-being. By understanding the factors influencing QOL, healthcare professionals and policymakers can develop targeted interventions and support programs to address the unique needs of caregivers of children with CP.

CONCLUSION

The carers of children with cerebral palsy scored poorly in every aspect of quality of life. The most affected domains were the Physical followed by Social. The existence of other comorbidities in children with CP made the quality of life even worse. Caretakers' quality of life was higher when they adhered to medical treatment and kept appointments as scheduled. Young caregivers had better QOL. Caregivers’ education, knowledge about CP, socioeconomic status and presence of any chronic ailment did not significantly affect their QOL. Future research is needed to identify other factors affecting the quality of life that are not covered in the present research and the perspective of caregivers other than mothers.

FUNDING

Nil

AUTHORS CONTRIBUTIONS

All the authors have contributed equally.

CONFLICTS OF INTERESTS

Declared none

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