1.Parental caregiver burden of Filipino children with developmental disabilities seen at the Neurodevelopmental Clinic of the University of Santo Tomas Hospital.
Ang Jonalyn Chris ; de Sagun Rosalina ; Dizon John Ryan ; PeBenito Rhandy ; Tanglao-Salazar Noemi ; Moral-Valencia Ma. Antonia
The Philippine Journal of Psychiatry 2012;34(2):3-7
OBJECTIVE: This study was designed to assess the level of caregiver burden of Filipino parents taking care of their children with developmental disabilities and to identify other factors contributing to their burden.
METHODOLOGY: The study participants were parents of children with developmental disabilities diagnosed in the Neuro-developmental Clinic of the University of Santo Tomas Hospital. They were asked to complete a survey, which included the following: 1) General demographics questionnaire that included the ff information: number of children, family income, marital status, educational level and occupation of the parents; 2) Adaptive behavior questionnaire designed to gather specific data about the abilities of the child with the disability; 3)Family Support Scale that measures the helpfulness of sources of support for families with developmentally disabled children, which is divided into informal support that included the patients, grandparents, siblings, relatives, church and government programs and the formal support, which included the physician, teachers and therapists; 4) Caregiver Burden Scale adapted from Zarit. The data was analyzed using frequency counts and percentages. Bivariate and multivariate analysis was used to determine the association of the data. A 95% confidence level was considered significant.
RESULTS: The majority (80%) of the caregivers were mothers, with a mean age of 38 years old, high school graduates and with an annual income of more than PhP 100,000. The families had an average of 1-2 children. The mean age of the children with disabilities was 6 years, and were categorized as having Global Developmental Delay [GDD] (50%), Mental Retardation [MR] (27%), Attention- Deficit Hyperactivity Disorder [ADHD] (13%) and Autism (10%). The level of burden seen among the caregivers was moderate, which was significantly associated with the annual income, severity of the disability, and the total family support score. Multivariate analysis showed that the severity of the developmental disability was an independent factor for caregiver burden.
CONCLUSION: This study provided evidence that both fathers and mothers of children with developmental disabilities seen in the Neurodevelopmental Clinic of the University of Santo Tomas Hospital experienced similar levels of stress as parents in the Western countries as well as feelings about lack of informal social support. High level of burden was significantly associated with an increased level of disability.
Human ; Male ; Female ; Adult ; Child ; Adaptation, Psychological ; Attention ; Attention Deficit Disorder With Hyperactivity ; Autistic Disorder ; Caregivers ; Developmental Disabilities ; Emotions ; Fathers ; Grandparents ; Intellectual Disability ; Marital Status ; Mothers ; Parents ; Siblings ; Social Support
2.Neurological soft signs in ADHD patients 6 to 18 years old at a university hospital: A cross-sectional study.
Rowena Arca-Cabradilla ; Rosalina Q. de Sagun ; Maria Antonia Aurora M. Valencia ; Michelle Sy
Philippine Journal of Neurology 2019;22(1):22-40
PURPOSE:
Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder in children
which persists into adulthood. Evidence suggests that the condition is etiologically related to delayed brain
maturation. Detection of the presence of neurological soft signs can be a means to assess neuromaturation.
The objective of this study was to assess the prevalence of neurological soft signs in ADHD patients and to
determine any correlation between the presence of neurological soft signs with age, gender, severity, and
type of ADHD which could give further insights into this disorder.
METHODS:
A Cross-sectional study was conducted at the Child Neurology and Developmental Pediatrics outpatient
clinic which included patients 6-18 years old diagnosed with ADHD as well as healthy controls. Patients
with other neurodevelopmental conditions (intellectual disability, metabolic disorder, cerebral palsy,
abnormal MRI findings), or any condition that may lead to failure to complete the given tasks such as
physical handicap were excluded. Neurological soft signs were measured by utilizing the Physical and
Neurological Evaluation for Soft Signs (PANESS) scale.
KEY FINDINGS:
A total of 48 patients between 6 and 18 years of age (24 ADHD patients and 24 healthy control) were
examined. Neurological soft signs were significantly higher in patients with ADHD and were present
regardless of gender, type, and severity of ADHD. ADHD patients performed worse on given tasks as
evidenced by higher PANESS scores. There was a weak negative correlation between neurological soft
signs and age, indicating that soft sign scores decrease with increasing age. There was no statistically
significant difference in neurological soft signs scores between those with medication versus without
treatment, except for the dysrhythmia which was significantly higher in the drug-naive group.
SIGNIFICANCE
Neurological soft signs are common in patients with ADHD and add scientific evidence to the predictive
value of neurological soft signs as indicators of the severity of functional impairment in ADHD. The
prevalence of neurological soft signs is much higher in children with ADHD than in controls which may
have the potential to improve sensitivity in the diagnosis of ADHD.
3.We got to move it, move it: The lived experiences of family carers of youth with chronic neurodevelopmental disorders as they enter into adult health care
Michelle G SY ; Maria Minerva P CALIMAG ; Rosalina Q DE SAGUN ; Maria Antonia Aurora M VALENCIA
Journal of Medicine University of Santo Tomas 2020;4(2):486-499
Background and objective :
Neurodevelopmental
disabilities in adolescents have signifi cant effects on
medical and social function. One of these challenges
is their transition into adult care. Parental involvement
is critical because these young adults may have more
diffi culties in making informed decisions independently. Thus, the transition process involves not only the
direct health care needs of the young adult, but the
needs and concerns of the parents or carers who are
instrumental in guiding that process. This study aims
to explore the expectations and experiences of family carers of youths with chronic neurodevelopmental
disorders who have undergone or are about to undergo transition into adult healthcare in a Filipino-based
health care system.
Methods:
A descriptive phenomenology was used to
gain an in-depth understanding of parents’ perceptions
and experiences of their youths’ transition process from
a pediatric to an adult health care setting. The results
were analyzed manually using Colaizzi’s method, which
involves integrating both the destructured and restructured analysis principles of phenomenology. Purposive
sampling was used to interview 13 family carers of 13
youths with various neurodevelopmental disorders using a semi-structured interview questionnaire.
Results :
Despite the lack of information on the transition process, our study found that carers did not have
a strong inclination to resist the transition event. Most
of the carers treat the health care provider as a major
decision maker in determining the timing and manner
of transition, adopting a “doctor knows best” attitude.
Several other hindrances and facilitators to successful
transition were also identifi ed and are similar to the
current literature.
Conclusion
This study provides a greater understanding of carers’ perceptions and experiences of
transition care for youths with neurodevelopmental
disorders in the local setting. They exhibited trust and confi dence in the medical profession as a whole, and
had a “doctor knows best” attitude that may enable
successful transitioning.
Transitional Care
;
Neurology
;
Neurodevelopmental Disorders
;
Caregivers
4.Neurological soft signs in patients with attention deficit hyperactivity disorder aged 6 to 18 years old at a University Hospital: A cross-sectional study
Rowena ARCA-CABRADILLA ; Rosalina Q DE SAGUN ; Maria Antonia Aurora M VALENCIA ; Michelle SY
Journal of Medicine University of Santo Tomas 2020;4(1):407-422
Purpose:
Attention defi cit hyperactivity disorder
(ADHD) is a common neurodevelopmental disorder in children persisting into adulthood. Evidence
suggests that the condition is etiologically related to
delayed brain maturation. The detection of the presence of neurological soft signs can be a means to
assess neuromaturation. The objective of this study
was to assess the prevalence of neurological soft
signs in ADHD patients and determine any correlation between the presence of neurological soft signs
with age, gender, severity and type of ADHD which
could give further insights into this disorder.
Methods:
A cross-sectional study was conducted at the Child Neurology and Developmental
Pediatrics outpatient clinic which included patients 6-18 years old diagnosed with ADHD as well as
healthy controls. Patients with other neurodevelopmental conditions (intellectual disability, metabolic
disorder, cerebral palsy, abnormal MRI fi ndings), or
any condition that may lead to failure to complete
the given tasks such as physical handicaps were excluded. Neurological soft signs were measured by
utilizing the Physical and Neurological Evaluation
for Soft Signs (PANESS) scale.
Key Findings:
A total of 48 patients between 6 and
18 years of age (24 ADHD patients and 24 healthy
controls) were examined. Neurological soft signs
were signifi cantly higher in patients with ADHD and
were present regardless of gender, type and severity
of ADHD. ADHD patients performed worse on the
given tasks as evidenced by higher PANESS scores.
There was a weak negative correlation between neurological soft signs and age indicating that soft sign
scores decrease with increasing age. There was no
statistically signifi cant difference in neurological soft
sign scores between those with medication versus
without treatment, except for dysrhythmia which was
signifi cantly higher in the drug-naive group.
Significance
Neurological soft signs are common
in patients with ADHD and add scientifi c evidence
to the predictive value of neurological soft signs as
indicators of the severity of functional impairment in
ADHD. The prevalence of neurological soft signs is
much higher in children with ADHD than in controls
which may have the potential to improve sensitivity
in the diagnosis of ADHD.
Attention Deficit Disorder with Hyperactivity
5.Burden of care of Filipino children with epilepsy and its impact on quality of life, anxiety and depressive symptoms among caregivers
Julie Ann Kristy L TORRES ; Rowena ARCA-CABRADILLA ; Michelle G SY ; Ma. Lourdes P CORRALES-JOSON ; Maria Antonia MORAL-VALENCIA ; Rosalina Q DE SAGUN
Journal of Medicine University of Santo Tomas 2019;3(2):326-335
Background :
Caregiver burden and its impact on
the quality of life is as important as determining the
quality of life of children with epilepsy as these factors inl uence each other as well as the outcome of
these children.
Objectives :
The primary objective of the study was
to determine the association between caregiver burden and quality of life as well as anxiety and depressive symptoms among caregivers of Filipino children
with epilepsy. Also, the study aimed to determine
the prevalence rate of caregiver burden, impaired
quality of life, anxiety, and depressive symptoms in
an ambulatory care setting.
Methodology :
In this cross-sectional survey, adult
caregivers accompanying their pediatric patients with epilepsy at a single tertiary center were recruited. Sociodemographic and clinical data were collected. The participants completed questionnaires
for caregiver burden, quality of life, anxiety, and
depressive symptoms.
Results :
Fifty-three caregivers participated with a
mean age of 38 years. Most of them were females,
married, unemployed, and at least college level.
The mean age of their patients was 9.4 years and
71.7% of patients were on a single anti-epileptic
drug. Lower educational level was less likely associated with caregiver burden. Although impaired
quality of life and depressive symptoms were more
likely associated with caregiver burden, this association did not reach statistical signii cance.
Conclusion
The prevalence rate of caregiver burden, impaired quality of life, anxiety, and depressive symptoms were 24.5%, 22.6%, 28.3%, and
9.4% respectively, among caregivers of Filipino
children with epilepsy at a single tertiary center. Lower educational level was the only characteristic
signii cantly associated with lesser odds of having
caregiver burden
Caregiver Burden
;
Quality of Life
;
Anxiety
;
Depression