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Abstract

PURPOSE:

The demands of caring for children with cerebral palsy (CWCP) may lead to burnout among the informal caregivers of these children. However, this subject area has not received significant research attention in Nigeria. The primary aim of this study was to investigate the association between burnout level of informal caregivers of CWCP and the motor performance of the CWCP. The association between burnout level of the informal caregivers and selected clinical variables of CWCP was also investigated.

METHODS:

This is a descriptive study of 75 consecutively-sampled informal caregivers (34.76±8.7 years) of CWCP and an equal number of their CWCP. Burnout level of the caregivers and motor performance of the CWCP were assessed using the Copenhagen Burnout Inventory (CBI) and Gross Motor Function Classification System Family Questionnaire (GMFCSFQ) respectively. Descriptive and inferential statistics were used to analyse results at alpha = 0.05.

RESULTS:

There was a statistically significant positive association between the CBI scores and the GMFCSFQ scores (p < 0.05). Age of the CWCP as well as type and topography of the cerebral palsy were not significantly associated with the caregivers’ burnout level. Similarly, the age and sex of the caregivers had no statistically significant association with their burnout level (p > 0.05).

CONCLUSION:

Caregiving for children with lower motor performance is associated with higher burnout among caregivers. This may impact negatively on the overall health of the caregivers and the quality of care for the CWCP.

Keywords

Cerebral palsy informal caregivers burnout

1 Introduction

Cerebral palsy (CP) is a common, non-progressive developmental disorder of movement and posture [1]. It causes activity limitations that are attributed to non-progressive disturbances that occurred in the developing foetal or infant brain [2, 3]. Population-based registries in the Western world reveal a prevalence of about 1.5 to 2.5 per 1000 live births. [4, 5]. CP has been reported as the most common neuropediatric condition seen in many physiotherapy clinics in Nigeria [6, 7]. According to Lagunju and Okafor [8], it is the second most frequent paediatric neurological disorder in Southwest Nigeria, following epilepsy. Distribution of cases by topography showed that the most prevalent type of CP seen in many clinics is spastic quadriplegic [9]. Management of this condition is multidisciplinary with physiotherapy playing a significant role. The major clinical presentation and cause of referral to physiotherapy are the motor dysfunctions or poor motor performance characterizing the condition.

Motor performance has been described as the execution of activities in everyday settings [10]. Children with CP (CWCP) usually present with poor motor performance. This has been attributed to the spasticity, dyskinesia, hyperreflexia, excessive co-activation of antagonist muscles, retained developmental reactions, secondary musculoskeletal malformations, atypical motor programming, and paresis with which these patients present [11, 12]. Depending on the severity of the condition, CWCP often find it difficult to carry out activities of daily living and thus commonly require assistance from their informal caregivers. Informal caregivers are individuals who take primary responsibilities for the task of caring for CWCP by supervising or assisting with their performance of activities of daily living and clinician-prescribed home programmes as well as ensuring that the children do not miss their medical appointments [13]. Thus, the typical role of a caregiver for CWCP is to take up or share the burden of limitations experienced by the children in self-care functions such as mobility, feeding, and performance of age-appropriate activities of daily living [13].

Generally, caring for children with physical disabilities such as CP may negatively impact the health and well-being of the informal caregivers themselves [14, 15]. This impact is the result of the long-term care and assistance usually required by CWCP, which exceeds that of a typically developing child. Combining this special role of caring for such children alongside the normal challenges of day-to-day life tends to leave these caregivers with little to no room for attending to their own personal needs. This may negatively affect the informal caregivers’ psychological and emotional well-being and may result in burnout [16].

Burnout is a psychosocial syndrome and is defined in three dimensions including “a feeling of emotional exhaustion”, depersonalisation, and diminished personal accomplishment [17, 18]. Emotional exhaustion refers to the feeling of being overextended and drained of one’s emotional resources due to work’s emotional demands. Depersonalisation refers to negative, cynical, detached, and impersonal attitudes and feeling towards other people, especially those with whom one works (either the recipients of one’s services or one’s colleagues). Reduced sense of personal accomplishment describes a decline in one’s feeling of competence and a tendency to evaluate oneself negatively in regard to one’s performance at work [19]. It has been observed that burnout may result from deep interpersonal contact and closeness to children with disability [20]. Studies in the Western world have reported a high level of burnout among the informal caregivers of CWCP compared to control groups of people caring for typically developing children [21, 22]. Authors of those studies noted that sensory and intellectual impairments and limitations in self-feeding, grooming, and mobility experienced by CWCP may increase the burnout level of their informal caregivers.

Sociocultural factors are among the constructs that may define the pattern and severity of burnout among caregivers of CWCP. It is therefore important that the pattern is studied along sociocultural settings. Information derived from such investigations may lead to a greater understanding of the impact of caregiving on the overall well-being of the caregivers in a particular community setting. There is a dearth of information on the impact of caregiving on the burnout among caregivers of CWCP in the African community where this study was carried out. In this study, the burnout pattern of informal caregivers of CWCP and its association with motor performance of their children was investigated. The association between burnout level of the informal caregivers and selected clinical variables of CWCP was investigated.

2 Methods

This is a multi-centre descriptive study involving 75 CWCP and 75 of their informal caregivers. They were recruited into the study using a convenience sampling technique from the caregivers who brought their CWCP to receive rehabilitation services including physiotherapy at three publicly-funded hospitals in Ibadan, Nigeria between November 2018 and February 2019. Only the CWCP with no diagnosis of neurological conditions apart from CP who had been receiving physiotherapy on a regular basis for a minimum of 3 months prior to the study were eligible. The caregivers of CWCP who could comprehend English language instructions constituted the second group of participants in the study. Informal caregivers were operationally defined in this study as parents, grandparents, guardians, or family housemaids of CWCP who had a significant personal relationship with the child and provided a broad range of assistance and care.

The appropriate Health Research Ethics Committee granted ethical approval for the study. All the respondents gave their informed consent as well as assent on behalf of their children. A specially designed data entry form was used to gather information on some clinical factors of the CWCP, such as age, gender, and type of CP.

The Copenhagen Burnout Inventory (CBI) was administered to assess the burnout level of the caregivers. This instrument was selected for use because it adequately captures different dimensions of burnout. The CBI, which was developed by Kristensen et al. [23], was formulated considering “Fatigue” and/or “Exhaustion” as a central construct. The CBI consists of 19 questions measuring the degree of psychological fatigue experienced in three subdimensions of burnout. The subdimensions are Personal (six items), Work-related (seven items), and Client-related burnout (six items). Twelve items have responses of frequency along a five-point Likert scale ranging from 100 (always), 75 (often), 50 (sometimes), 25 (seldom) and 0 (never/almost never). Seven items use response categories according to intensity ranging from ‘a very low degree’ to ‘to a very high degree.’ Typical items include: “how often do you feel tired?”, “do you feel burnt out because of your work?” and “do you find it hard to work with clients?”. Scores of 50 to 74 are considered ‘moderate,’ 75–99 are ‘high,’ and a score of 100 is considered ‘severe’ burnout [23]. The CBI has been reported to have a good degree of internal consistency, test-retest reliability, and concurrent validity and is therefore considered a valid and reliable measurement tool of burnout [24]. The CBI was researcher-administered in this study. Questions under each category of burnout were read out by the researcher and the participants were asked to indicate the option that best described their burnout level in line with each parameter.

The Gross Motor Function Classification System Family Questionnaire (GMFCSFQ) was used by the caregivers to assess the gross motor performance of their CWCP. This classification system was developed by Morris et al. [25] and was designed to obtain reliable information on the motor function classification of CWCP from their caregivers [26]. The GMFCSFQ has been used by Hamzat and Fatudimu [9] and Fatudimu et al. [27] in previous studies involving Nigerian caregivers of CWCP.

The GMFCSFQ was used by caregivers to classify their children into five levels according to gross motor performance. This was carried out by asking the caregivers to choose a level on the GMFCSFQ that best corresponded to the current motor function level of their children. CWCP at level I on the GMFCSFQ are those who can perform the normal activities of daily living (though the speed and quality of movement is slow), whereas children at level V have difficulty controlling their head and trunk in most positions.

2.1 Data analyses

Data was analysed using SPSS software version 21. Descriptive statistics of frequency percentage, mean, and standard deviation were used to summarize the data. The Pearson Chi-square test of independence was used to determine associations between the motor performance of the children and the burnout levels of their caregivers, type of CP, topography, and age group. The association between the caregivers’ age and their burnout scores was also determined using the Spearman’s rank correlation. Caregiver burnout was also compared by gender using the Mann-Whitney U test and the Kruskal Wallis test was used to study burnout of the caregivers across the types of CP of their CWCP. Level of significance was set at 0.05.

3 Results

The participants included 75 CWCP and an equal number of their informal caregivers. The mean age of the CWCP was 40.6±35.9 months. The mean age of the caregivers was 34.8±8.7 years and fewer than one-sixth (14.7%) of them were males. Information on the caregivers and clinical attributes of the CWCP are presented in Table 1. Most (80%) of the children had spastic CP and a large proportion (82.7%) presented with quadriplegic affectation (Table 1). The frequency distribution of the motor performance score of the children as presented in Table 2 showed that about half (52%) of them were in level V on the GMFCSFQ. Table 3 presents the results of the Chi square test of association between clients’ CBI burnout scores and the motor performance, age, type of CP and topography of their CWCP. A statistically significant association was observed between the children’s motor performance as measured on the GMFCSFQ and the caregivers’ burnout score on the CBI (p = 0.01) as shown in Table 3. As presented in Table 4, there was no statistically significant association between the age of the caregivers and the total or domain scores on the burnout scale (p > 0.05). Statistical analysis using the Kruskal-Wallis test revealed that there was no significant difference in the burnout scores across different CP classifications by topography (p = 0.29). Data analysis also revealed no significant difference in caregivers’ burnout across the motor performance of the CWCP (Table 5). When analysed by gender using the Mann-Whitney U test, results showed no statistically significant difference in the overall burnout score between male and female caregivers (p = 0.32).

Table 1
Clinical attributes of children with cerebral palsy and demographic information on the caregivers (N = 75)

Variables n %

CLINICAL ATTRIBUTES OF CWCP (N = 75)

Type of CP

Spastic 60 80

Choreoathetoid 5 6.7

Ataxic 2 2.7

Mixed 8 10.6

Topography

Quadriplegia 62 82.7

Diplegia 10 13.3

Hemiplegia 3 4.0

Sex

Male 11 14.7

Female 64 85.3

Age

<24 months 34 45.3

24–48 months 17 22.3

>48 months 24 32.0

INFORMATION ON THE CAREGIVERS (N = 75)

Gender

Male 11 14.7

Female 64 85.5

Relationship to CWCP

Mother 56 74.7

Father 10 13.3

Grandmother 2 2.7

Others 7 9.3

Age Group

<30 years 27 36.0

30 years and older 48 64.0

Variables	n	%
CLINICAL ATTRIBUTES OF CWCP (N = 75)
Type of CP
Spastic	60	80
Choreoathetoid	5	6.7
Ataxic	2	2.7
Mixed	8	10.6
Topography
Quadriplegia	62	82.7
Diplegia	10	13.3
Hemiplegia	3	4.0
Sex
Male	11	14.7
Female	64	85.3
Age
<24 months	34	45.3
24–48 months	17	22.3
>48 months	24	32.0
INFORMATION ON THE CAREGIVERS (N = 75)
Gender
Male	11	14.7
Female	64	85.5
Relationship to CWCP
Mother	56	74.7
Father	10	13.3
Grandmother	2	2.7
Others	7	9.3
Age Group
<30 years	27	36.0
30 years and older	48	64.0

Key: CP: Cerebral palsy. CWCP: Children with cerebral palsy.

Table 2

Frequency distribution of motor performance of children with cerebral palsy using the gross motor function classification system family questionnaire (GMFCSFQ) (N = 75)

GMFCSFQ level	Item	n	%
V	“Has difficulty sitting on their own and controlling their head and body posture in most positions”	39	52.0
IV	“Can sit on their own but does not stand or walk without significant support”	20	26.7
III	“Can stand on their own and only walks using a walking aid”	7	9.3
II	“Can walk on their own without using walking aids, but needs to hold the handrail when going up or down stairs”	3	4.0
I	“Can walk on their own without using walking aids, and can go up and down stairs without needing to hold the handrail”	6	8.0

Table 3

Association between caregivers’ client-related burnout and clinical characteristics of children with cerebral palsy (N = 75)

	Client-related Burnout
Variable	χ²	P
Motor performance	19.31	0.01
Age of patients	1.98	0.37
Topography	3.09	0.54
Type of cerebral palsy	5.56	0.47

Table 4

Association between age of informal caregivers and burnout levels (N = 75)

	Age of the caregivers Rho	P-value
Personal Burnout Scores	–0.12	0.30
Work-related Burnout Scores	–0.18	0.13
Client-related Burnout Scores	–0.02	0.87
Total Burnout Scores	0.07	0.54

Table 5

Overall burnout level of caregivers grouped by children’s gross motor function classification system family questionnaire levels

Motor performance	Median score	z	P
Level I	39.29	0.45	0.10
Level II	39.09
Level III	32.74
Level IV	30.16
Level V	23.02

4 Discussion

The participants in this study were comprised of 75 CWCP and their 75 informal caregivers. CWCP were recruited into the study from among those who were receiving rehabilitation services at selected health facilities. The clinical profile of the CWCP in this study as documented in their medical records showed that almost three-quarters had the spastic type of CP. This observation aligns with the pattern reported in previous studies on CP in Nigeria by Ogunlesi et al. [28] and Hamzat and Fatudimu [9], as well as in other countries by Mutch et al. [29] and Sigurdardottir et al. [30]. Distribution by topography revealed that the quadriplegic type of CP was the most common type in this study, a trend that is consistent with findings in earlier studies [7–9, 31]. However, this finding is at odds with other studies that have reported a predominance of diplegic affectation among CWCP [32, 33]. Although this study did not set out to study the gender distribution of informal caregivers of CWCP, it is still worth noting that women, including mothers, constituted three-quarters of the caregivers in this sample. This may be a reflection of the gender and relationship patterns of caregivers of CWCP in the African community where the study was conducted. A similar trend had been documented by Hamzat and Mordi [14], Fatudimu et al. [13], and Olaleye et al. [34] in Nigerian studies as well by some authors [35, 36] in other countries. However, Basaran et al. [37] reported more male caregivers than female in a study carried out in Turkey. It may therefore be reasoned that the predominate gender of the people who take on the role of caregivers for CWCP may be a function of the specific community in which they live.

The majority of the children were scored at level IV and V on the GMFCSFQ. On this outcome measure, the higher the score obtained by the child, the more severe the disability and the more dependent the child would be on the caregivers for day-to-day living and functioning. The preponderance of levels IV and V scores for CWCP in this study means the caregivers were caring for CWCP with significant physical disabilities. Findings from this study further revealed that caregivers whose children were at levels III-V experienced higher burnout compared to those whose children fall within level I and II on the GMFCSFQ. Further tests of association revealed a significant positive association between the scores on the GMFCSFQ and Client-burnout score of their informal caregivers. This means that caregivers who had children with poorer motor function had higher burnout levels, suggesting that poorer motor function performance can increase the burden of caregiving and subsequently lead to burnout of caregivers. More professional and long-term informal caregiving is required for children at higher levels of the GMFCSFQ compared to those on lower levels, with the corresponding stress of providing care resulting in burnout susceptibility among the caregivers. A similar observation has been made by a group of researchers [22] who reported a higher level of burnout among the caregivers of CWCP than in the control group of caregivers of typically-developing children. An important way that health care providers could help alleviate burnout secondary to caring for CWCP would be to provide information on effective coping strategies and facilitate peer or group meetings of caregivers to enable the exchange of ideas and sharing of experiences that may be beneficial to other group members.

Further results analysis showed no significant association between the age of the children, topography of the CP, and burnout level of their informal caregivers. This suggests that other factors such as severity of the CP and length of time as a caregiver (a construct that was not explored in this study) are associated with burnout among caregivers rather than age of the children and topography. This perhaps points to the need for burnout prevention strategies for caregivers whose children have severe CP. The results obtained also revealed that there was no significant association between the age or gender of informal caregivers and their burnout level, indicating that these are not determining factors for burnout in this sample.

5 Limitations

The small sample size and the fact that the sample was not normally distributed constitute important limitations to the external validity of this study.

6 Conclusion

This study concluded that about one-fifth of the informal caregivers of CWCP experienced high overall burnout; this was particularly significant among caregivers of CWCP with poor motor performance. This study underscores the importance of professionals in managing CWCP and helping to identify signs of burnout among their caregivers, particularly those caring for children with severe CP. This is suggested with a focus on providing appropriate interventions, which may include recommending support groups and referring caregivers to relevant professionals who could help them effectively manage the stress that arises from caregiving.

Conflict of interest

The authors have no conflict of interest to report.

Funding

The authors were responsible for the funding of this research.

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Association of motor performance of children with cerebral palsy and burnout level of their informal caregivers in an African community

Abstract

PURPOSE:

METHODS:

RESULTS:

CONCLUSION:

Keywords

1 Introduction

2 Methods

2.1 Data analyses

3 Results

5 Limitations

6 Conclusion

Conflict of interest

Funding

References