CARE FOR THE CAREGIVER
Study evaluates the quality of life of those who look after children with cerebral palsy
"Cerebral palsy can be classified as a chronic illness and compared to an acute illness wherein the focus of parents and caregivers is to find a cure, in CP or chronic illness the focus is to provide adequate care," said Professor Esmerita Rotor, chair of the department of physical therapy at the University of the Philippines Manila.
Rotor shared the results of her study Quality of Life of Caregivers of Children with Cerebral Palsy during the foundation week of the University of the Philippines-National Institutes of Health. Caring for children with CP involves increased effort as it hinders the child's movement, capacity for self-care, and involvement in age-appropriate activities.
"Caregiving is a social responsibility usually of adults toward their children. It is highly frequent and nonpostponable and people who perform these responsibilities do not have control over time." said Rotor. Apart from everyday tasks like feeding, bathing, and dressing the children, caregivers bring children to necessary appointments, administer medications, and are called upon by therapists to carry out further activities at home to improve the children's capabilities. "Caregiving therefore is a lifelong commitment especially for [those caring for] children with CP" said Rotor.
When the caregiver is ill or not in good condition, the results are decreased work capacity and limited caregiving practices so it is crucial for therapists to see if caregivers are healthy and up to task. To this end, the study aimed to examine the quality of life (QOL) of caregivers of children with cerebral palsy. The study involved a survey at an outpatient clinic for children with special needs.
After giving informed consent, caregivers answered the 26-item World Health Organization Quality of Life-BREF (WHOQOL-BREF) which was translated into Filipino. The children were evaluated using the Gross Motor Function Classification Scale, with level one being the most functional and level five being the most restricted. Demographical data were gathered and the length of treatment was based on clinic records.
Twenty-two low-and low-middle-income caregivers, mostly mothers with an average age of 38, took part in the study. Nearly 70 percent said that they were in good health. The children had been in therapy for an average of 30.9 months. The caregivers' QOL scores for the physical, psychological, social and environment domains were all in the middle of the scale, meaning that their QOL was neither poor nor too good. Social domain ranked the highest at 16, physical and psychological 14, and environment was the lowest at 13.
It was discovered that QOL for the social domain tended to decrease with older caregivers and as the time in therapy increased. The psychological-domain score was influenced by the caregiver's level of education. As overall perceived QOL rose, so did scores for the physical health and environment domains. Likewise, satisfaction with health was related to the physical health and social QOL scores. It was discovered that QOL was not defined by the severity of the motor condition because there were no significant relationships between the caregiver's scores and the patient's level of functioning.
The Filipino translation of the WHOQOL-BREF was found to be reliable. Although psychological was only fair, good internal consistency was found for the physical, social, and environment domains.
Rotor touched on the need for providing information about earning while caring for one's child. The survey included an open-ended question about how the respondents could improve their quality of life and more than half had answers related to financial stability.
Said Rotor: "It seems there's a tendency to neglect the social needs of caregivers." Social function is important because "if we want the children to be integrated into the community, be more participative in the community, they need to learn social skills, and the first step to do that is they model after their primary caregivers or their parents" she said.
According to Rotor, caregivers do not receive adequate social support. Most support is given the beginning after diagnosis and therapy referral but this should be continuous because needs change as the children become older. On building a social support system, Rotor talked about evaluating QOL and monitoring caregivers, having a strong interdisciplinary team, camaraderie, and active and constant participation of caregivers.
As it turns out, children with cerebral palsy may require a lot of care but those tending to them also need to receive their own brand of care.
M I. Yujuico
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