INTRODUCTION

Cerebral palsy (CP) is an irreversible neurological condition, causing physical disability ¹; mobility limitations occur as a result of decreased selective motor control, altered tone, balance, and coordination¹⁾ ;difficulties in handling, communication, and feeding, as well as behavioral problems, may also occur¹. The disability generated by CP accompanies the patient and his family throughout life and its repercussions intensify as the patient ages².

The experience of caring for people with severe CP creates significant changes in family life²; the disability generated and the difficulties to carry out an independent and participatory life in daily activities, require that there be a caregiver to supply these activities. The person who performs this work on a daily basis often has exclusive dedication, is considered the caregiver³.

In 1999, the World Health Organization defined the primary caregiver as "the person in a patient's environment who voluntarily assumes the role of responsible for the patient in a broad sense; this individual is willing to make decisions by and for the patient, and to cover the basic needs of the same, either directly or indirectly⁴. According to Roth et al.⁵ informal caregivers are those people who offer continuous, unpaid assistance in activities of daily living, to a person with a chronic illness or disability, for Wijesinghe et al. ⁶, caregiver burden is defined as “a multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the experience of care”.

The Zarit burden scale - Zarit burden interview (ZBI) has been used to determine the burden generated by care; There is ample evidence on its use. In Colombia it is reported that it has been used with caregivers of people with chronic kidney disease⁷ with chronic non-communicable disease, in the elderly⁸, in infants with disabilities⁹ and in people with oncological pathology¹⁰; however, there are few reports on the burden perceived by caregivers of adolescents severely compromised with CP in the Colombian population, considering this aspect, relevant and important to study. Therefore, the objective of this study was to know the perception of burden in caregivers of severely compromised adolescents with cerebral palsy, spastic in their greater proportion, based on sociodemographic and clinical aspects.

MATERIALS AND METHODS

RESULTS

Regarding the sociodemographic characteristics of adolescents and young people with CP, and the clinical characteristics of the caregiver, Table 1 shows that 55% of the patients are male, their age ranged between 15 and 17 years, with an average 16.33 years old. Regarding its clinical characteristics, there was a higher prevalence of patients with quadriparesis 70% and 75% were spastic; 100% of the patient population was classified between levels IV and V according to the GMFCS.

Regarding the characteristics of the caregivers, 45% were in the range of 40 to 49 years, with a mean of 42.25; 45% belonged to the low socioeconomic stratum (1 and 2), 40% of them were married, 70% were the mothers and 10% were the fathers of the patients.

Table 1. Patient and caregiver characteristics. 

Table 2 shows the level of reported load, where it is observed that the majority of caregivers perceived an intense overload (48.33%).

Table 2. Caregiver burden level according to Zarit burden scale. 

Correlations

The relationship between the perceived load level and the patient's age was analyzed using the Pearson and Spearman's R test, however, no statistically significant correlations were found (Pearson's R = -0.190, p = 0.145; Spearman = -0.212, p = 0.103). No significant correlations were found between perceived burden level and caregiver age (Pearson's R = 0.080, p = 0.548; Spearman's = 0.054, p = 0.682).

According to Kendall's Tau non-parametric test (Table 3), socioeconomic status has a statistically significant negative relationship with perceived burden level (p-value= 0.0262). It is important to consider that, in high socioeconomic levels, families can access constant support personnel for their children, which facilitates the organization of the different tasks, achieving an adequate level of load, both emotional and physical.

Table 3. Burden level with respect to socioeconomic status, educational level, and classification of gross motor function. 

^*p<0.05

For the nominal qualitative variables (Table 4), the Pearson chi-square test was used, finding a statistically significant correlation for the tone distribution with the sex of the caregiver, as well as for the sex of the caregiver with the relationship established with the patient and for the relationship with the patient and the marital status of the caregiver.

Table 4. Correlation among nominal qualitative variables. 

^*p<0.001

Table 5 shows the results obtained from the ZBI scale from five domains as proposed by Rankin et al¹⁴. ; the frequency is determined and the percentages whose response was in the ranges of 3 (quite often - a lot) and 4 (almost always - too much) are presented.

Table 5. Domains of the Scale of Zarit. Answers with the highest percentage. 

This analysis shows that, in terms of the burden domain in the relationship, the perception of dependency on the part of their family member was present in 85% of the caregivers. In the Emotional Well-being domain, 45% of the caregivers perceive that due to the time they spend with their relative, they do not have enough time for themselves.

The domain of social and family life was the best perceived; only 26.6% report that caring for their family member causes them stress, in contrast to the finance domain in which 45% of caregivers reported that they did not have enough money to care for their family member, added to the difficulties to the personal and family support of their expenses and obligations. Finally, in the domain of loss of control over their own life, concern about what might happen to their family member in the future was present in 60% of the caregivers.

DISCUSSION

This research aimed to evidence the burden perceived by caregivers of severely compromised adolescents (Level IV or V according to the GMFCS) due to CP; This information is useful for health professionals, other social areas and government entities because in the presence of severe disability, the caregiver-patient dyad becomes a highly vulnerable population, as mentioned by Gómez-Galindo et al¹⁵., in their study on the conditions of caregivers of people with severe disabilities in Bogotá.

The best known conceptual model to measure the burden of care in CP is the one proposed by Raina et al¹⁶., however, was not used in this research because it was designed for the pediatric population and not for adolescents. The present analysis was carried out based on the integrative model of the informal caregiver by Pierre Gérain and Zech¹⁷, which has been proposed to evaluate the burden of caregivers of people with chronic diseases. The model defines as determinants of informal caregiver exhaustion, the environment where care is given, the caregiver and the environment for which it is postulated that the impact of the determinants is mediated by the caregiver's assessment of their experience and the relationship with the person being cared for. In this research, regarding the aforementioned determinants, the sociodemographic characteristics of patients and caregivers, clinical characteristics of the patients were considered and some significant aspects of the caregiver's experience and their relationship with the patient object of care are highlighted, considering the results of the correlations and analysis with the ZBI scale.

In many cultures, including the Colombian, caring for family members and especially for people with dependency levels, has been considered an exclusive responsibility of women^18,19. In fact, in the present study, 96% of the caregivers were women, and 70% of them were mothers of the patients. On the other hand, the perception of intense overload occurred in 48.33% of the caregivers. Prakash et al^20). in their study with mothers of children and adolescents in levels IV and V of GMFCS reported high levels of stress compared to children who walk (levels I and II); In the same way, these authors affirm that care harms the quality of life of the caregiver, who usually suffers from stress and depression, which are inversely proportional to their self-efficacy and level of social support. In this sense, these findings may be a call to comprehensive networks of health service providers to consider the importance of assigning a formal caregiver for a few hours a day for their severely disabled users.

According to the results obtained in this study, there is a statistically significant relationship between the marital status of the caregiver and the relationship with the patient. This suggests that staying as a couple represents a protective factor for the family, to the extent that care responsibilities tend to be shared and the possibility of emotional support is increased^21), however, and as mentioned by Vadivelan et al^3). in a study carried out in India, it is important to know the type of partner relationship that the caregiver has and to consider the presence or not of gender and intra-family violence, since this situation can become, on the contrary, an important source of stress.

Regarding physical compromise, 100% of the patient population is between levels IV and V according to the GMFCS. Some investigations report that the severity of the deterioration is not unanimously identified as an aggravating factor of load²²; On the other hand, there are other studies that report that a higher level of functional disability in individuals with CP correlates significantly with a greater burden among their caregivers^6,20.

In the analysis carried out, it was found that 85% of caregivers report that their family object of care depends on them and in this regard, several considerations can be made: On the one hand, size, weight, spasticity (87% of the adolescents in this study are spastic) and the contractures of the patients require greater physical effort for the caregiver²³, in addition, it is important to consider that in Colombia, the assistance devices to facilitate transfers are difficult to access due to the high costs; In this sense, it is extremely important that nurses lead actions to promote health and prevent complications in caregivers¹⁹.

Another consideration is that the physiological changes that occur when caregivers get older (in this study, 45% are in the range of 40 to 49 years) suggest that physical exertion can generate musculoskeletal pain or other comorbidities, such as mentioned by Burkhard et al²⁴., who in their study, refer that mothers usually worry if they will be able, over time, to maintain the level of care towards the family member with CP. Finally, there are reviews that support the assumption of a negative impact of the level of dependency on family adaptation²⁵. The aforementioned aspects can serve as a wake-up call to therapists, nurses and health professionals in general so that they include within their intervention programs for adolescents with CP the teaching of effective strategies for postural hygiene and the inclusion of healthy life habits in caregivers; On the other hand, the intervention of social workers and psychologists can surely contribute to improving family and personal dynamics so that the processes of resilience and assessment of their experience of living with a family member with disabilities can be facilitated.

In the present study, 76.67% of the caregivers reported that the presence of their family member did not affect their relationships with family or friends. Natural supports are those that are not paid and are provided by the people associated with the caregiver²⁶, which can represent an important help to generate well-being and decrease the burden for caregivers; however, some studies report that social support can be a source of stress; caregivers may feel that visits or offers of support are more intrusive than helpful²⁷.

As mentioned by Ortiz et al²⁸., the role of the caregiver of a person with a chronic and severe disability includes a number of demanding tasks focused on health care; The caregiver must also comply with recommendations aimed at reinforcing the care practices given by nurses and therapists in the face of the appearance of musculoskeletal complications, feeding care, socialization opportunities, in such a way that complying with all these activities requires high time reversal²⁵. In this study, one of the greatest concerns of the caregiver population is the little time available to them (45%); Campos de Aldana et al¹⁹., mention that one of the characteristics with the greatest influence on the caregiver's burden is the daily hours of care. Sawyer et al²¹. found that mothers who felt more pressed for time had higher levels of psychological impairment and depressive symptoms²⁹ chronic stress and emotional and physical exhaustion; therefore, mothers are encouraged to be supported in finding ways to counteract the real and perceived impact of caregiving.

Another consequence of an exclusive dedication of the caregiver in a good percentage of their daily time in the care of their family member with CP is that it possibly hinders their performance in a formal job and therefore economic difficulties are generated. In the present study, 45% of the caregivers live in a low socioeconomic stratum, also finding a statistically significant and inverse relationship, showing that the lower the stratum, the greater the care burden. This same percentage refers that they do not have enough money to take care of their relative, added to the rest of their expenses, which can generate a high risk of anguish in the parents²⁵; however, some studies fail to find a relationship between family income and burden²⁷. Another aspect related to this perception is the frequent concern reported by 60% of the caregivers in this study, regarding what may happen to their family member in the future. According to Lee et al²⁶. many families of patients with developmental disabilities report that planning for the future makes them less vulnerable and allows them to be less anxious about changes that may occur over time or over the years. The fact that in Colombia, monetary poverty was 35.7% according to the National Administrative Department of Statistics -DANE- in 2019³⁰, suggests that financial planning is not within the possibilities of a good percentage of the population.; therefore, it is the duty of the professionals involved in the care process aimed at the population with CP, to alert and sensitize both caregivers and their families about the current legislation on protection for people with disabilities and their relatives. Finally, a limitation of the study is that it only worked with the main caregivers and the other members of the patient's primary (family) and institutional support networks were not included.

CONCLUSIONS

A high percentage of caregivers of severely compromised adolescents with CP perceive intense burden for care. The caregivers perceive a high dependency on the part of the patients, added to the insufficiency of economic resources for care and that they do not find any incidence of care on the family situation or with their friends. In this sense, health professionals, nurses, and rehabilitators (physiotherapists, occupational therapists, and speech therapists) can include caregivers in teaching effective strategies for strengthening family, social, and institutional support networks that allow coping with care more safely and with greater confidence.