Original Article Egyptian Journal of Health Care, 2019 EJHC Vol.10 No.

Parental Patterns of Care for their Children with Mental Disability

Gehan Fakhry ELyamany, Dr. Zeinab Fathy El-Sayed, Dr. Mona Mohamed Hafez
Pediatric Nursing, Faculty of Nursing, Ain Shams University-Cairo-Egypt.
Abstract
Background: Mental disabilities area lifelong condition that cannot be "cured"
however, there are ways in enrich their lives, help them have a pleasant childhood through
parents as a care giver Aim: The study aimed to assess the parental patterns of care for their
children with mental disabilities. Study Design: A descriptive study design. Setting: The study
was conducted at two governmental intellectual development schools at Embaba and El-
Dokki Sample size: involved (150) studied children suffering from mental disabilities and
their accompanying parents. Tools for Data Collection: (I) A pre-designed structured
interviewing questionnaire to assess parents knowledge about of mental disabilities.(II)
assessment sheet for parental patterns of care. (III) Parents socialization styles scale. Results:
the study results revealed that, the mean age of studied children was (10.4±1.9).while the mean
age of their mothers age was (37.7±1.4) the great majority of children receive care through
mothers. More than half, of the parents had unsatisfactory knowledge regarding to disease of
mental disabilities, approximately less than half of the children were had average pattern of care
from parents in most daily living activities. Conclusion: The parents’ knowledge was
unsatisfactory regarding to mental disability. Also, the level of parental patterns of care
was ranged from poor to an average level. There are positive correlation between parents’
knowledge and level of parents care. Recommendations: it could be recommended:
continuous assessment for the level of knowledge of parents and implementation training
programs for parents having children with mental disabilities to keep them update.
Keywords: Mental, disability, Parents, Children, Knowledge, Socialization Style.
Introduction different based on the type and severity of
disability of their children (Branford, 2013).
Mental disabilities means a condition of
arrested or incomplete development of mind Many children with a mental
in children before age 18 years old arising disability need help with adaptive skills,
from inherited cause or disease or injury. which are skills needed to live, play, and
world health organization (WHO) reported work in the community. Daily living
that 10-20% of all children and adolescent activities. Parents can help a child work on
have some form of mental disabilities, while these skills at both school and home. Some
the mental disability represented of these skills include: communicating with
55%amongchildren in intellectual others; taking care of personal needs
developmental schools than other different (dressing, bathing, health and safety; home
disabilities(WHO, 2015) living (helping to set the table, cleaning the
house, or cooking dinner);
The goal of parental care for children
with a mental disability is to provide the Knowing the rules of conversation (Green
best quality of life for their children. Caring &Allister, 2015).
for a child with a disability can have both In the light of the previous mentioned
positive and negative effects on parents. review; the researcher conducted this study
Each family’s situation and coping ability is

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for assessment the parent’s patterns of care to any infectious disease or head trauma at
for their children having mental disabilities birth.
Aim of the study  Parents level of knowledge
regarding concept of mental disabilities its
The study was aimed to assess the manifestations and complications.
parental patterns of care for their children
with mental disabilities.  Scoring system:

Subjects and Methods According to answer, a correct

response was scored 1 and incorrect zero for
Design: A descriptive design was each area of knowledge, the scores of the
used to conduct this study. items was summed –up and divided by of
Setting: The study was conducted at items regarding the knowledge of studied
the two governmental schools of parents 100scores, the answers were
intellectual educational schools in Embaba checked with key answer and the total scores
and El-Dokki affiliated to ministry of were summed-up and converted into a percent
education. score categorized into two levels:

Subjects: A purposive sample that • Score from < 60 % referred to

included (150) studied children suffering unsatisfactory knowledge
from mental disabilities and their • Score from 60 ≤ 100 % referred to
accompanying parents. satisfactory knowledge
Tools for data collection: II- Assessment sheet of parental
Data were collected by using the patterns of care for mentally disabled
following tools: children:
I-Structured interviewing It was developed by the researcher
questionnaire sheet: and was written into simple Arabic language
to suit nature of the study. The patterns of
It was designed by the researcher in care is three point scale according to the
the light of the relevant and current literature degree of patterns, the numerical values
and written in simple Arabic language to allotted to each response was always,
suit understanding of the study subjects and sometimes and never
to gather data in relation to:-
Patterns of care which included:
 Characteristics of the mentally •Self-care (8 items)
disabled children which include: (age, •Activities at home(5 items)
gender, degree of disability, educational • Activities outside the home (5items)
level, birth order and residence). •Psychological care (7 items)
 Socio-demographic characteristics •Social care (9 items)
of the parent’s accompanying them include •Environmental care (7 items)
that: (age, level of education, occupation,  Scoring system: according to the
and monthly income). degree of patterns of care the always scored
 Data regarding medical history one sometimes scored two and that never was
and health condition for mentally disabled scored three. These scores were summed-up
children’s such as diagnosis, duration of and converted into a percent score:
disability family history of disease, exposure • Score less than 50% referred to poor level
pattern of care.
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• Score from 50 – 75% referred to average Content reliability of the tool was
level pattern of care. tested to ensure that an assessment tool
• Score more than75 %referred to good level produces stable and consistent result over
pattern of care. times. Reliability of the study tools was done
tested statistically (0.84).
III- Parents Socialization Styles
Scale: Pilot Study:
This scale was adopted from Ali, A pilot study was carried out
(2014) it aimed to assess parenting including10% (n =15) of sample size to
socialization styles used by parents toward evaluate the applicability, time needed for
their children with mental disabilities the completing answers the tools of the Results
scale consists of “35”statements at measure of the data obtained from the pilot study
the following aspects: punitive style (13 were helped in modifications of study tools,
items), emotional deprivation style (11 items) where certain items were corrected, omitted
and guidance style (11 items). or /and added as necessary The pilot
participants were included in the main study
 Scoring system: the scores of
sample.
parenting socialization styles of children and
Field Work:
accompanying parents toward mentally
The study was carried out over
disabled children, the following scores
3months for first week of February, (2018)
(2)points for never (1)points for sometimes
up to the end of April (2018). The researcher
and (zero )for always it contain three
was available in the study setting 4
categories punish style, emotional
days/week two days for each intellectual
deprivation and guidance style.
developmental school at Embaba and El-
 Score < 50% referred to low used
dokki at governmental Giza from 8.5 AM to
parents socialization style
1 PM parents was individually interviewed
 Score from 50-75% referred to moderate by researcher for 30-45 minutes meeting
parents’ style used for their children. about five parents daily.
 Score more than 75% referred to high
used parents’ socialization style Ethical consideration:
Methods for data collection: The study proposal was approved by
scientific research ethics. Committee of
An official approval was obtained to faculty of Nursing /Ain Shams University.
carry out this study from the Dean of Also an official permission to conduct the
Faculty of Nursing, Ain Shams University study was secured from pertinent authorities
Also a letter containing the title and aim was all participants gave their oral They were
directed to the Central agency for public assured, also that, anonymity, confidentially
mobilization and statistic, and also to was guaranteed. Also all the gathered data
ministry of education and directors of the was used for research purpose only, and they
previously mentioned settings have the right to withdraw the study at any
Content Validity and Reliability: time and without given any reason.
Content Validity The tools of data Results
collection were tested by three experts from Table (1): As regards the
pediatric nursing, Ain Shams University to characteristics of studied children, this table
gain their experiences and opinions showed that, more than half (53.4%) of them
regarding the tools contents and aged between 10 < 12 years old with mean age
modification was done accordingly. (10.4±1.9), while two thirds (60.7%) of them
were males, more than three quarters (79.3%)
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of them were illiterate. In additional to While only half (50.0%) of the studied
residence more than two thirds of them parents have satisfactory knowledge about
(65.3) were lived in rural area. Also one third symptoms of mental disabilities.
(31.3%) of them were ranked as fourth child, Table (4): this table showed that near
in the family, 68.0% of studied children were to two thirds of studied parents (56.0%)
diagnosed mental disability. have unsatisfactory total knowledge
Table (2): As regards the regarding disease of their children with
characteristics of studied parents, this table mental disabilities, while, (44.0) of them
cleared that, half (50.7 %) of them were in have Satisfactory level of knowledge about
age group between 30 <40 years, while the mental disabilities.
more than three quarters (78.0%) of parents Table (5): this table shows that the
were illiterate. Also (80%) of parents were parenting socialization styles used by
not working. parents toward their children suffering from
Table (3): this table showed that, mental disabilities the finding demonstrate
more than half (53.7%, 52.7% & 53.3%) of that, the punitive style is the highest style
the studied parents were had unsatisfactory (62.0%) used by parents. while the guidance
answered about, onset of symptoms &degree style was lowest style (16.7) used by parents.
of mental disabilities respectively. Moreover Table (6): This table showed that,
near to two thirds of them (57.3%, 58.0%, positive correlation between parent's level of
57.3%&62.7) of them unsatisfactory knowledge about mental disability disease
knowledge about causes, complications, and level of care for their mentally disabled
treatment& different methods of dealing children P value (0.03).
with mentally disabled child respectively.

Table (1): Number and Percentage Distribution of studied children according to their
characteristics (n=150).
Child's characteristics No %
Age (years):
6 < 8 years 20 13.3
8 < 10 years 50 33.3
10 < 12 years 80 53.4
Mean ±SD 10.4±1.9
Gender:
Male 91 60.7
Female 59 39.3
Level of educational:
Illiterate 119 79.3
Primary 31 20.7
Residence:
Rural 98 65.3
Urban 52 34.7
Childs ranking:
First 9 6.0
Second 35 23.3
Third 38 25.4
Fourth 47 31.3
Fifth 21 14.0
Type of mental disabilities:
Mental only 102 68.0
Physical & mental disability 48 32.0

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Table (2): Number and percentage distribution of studied parents according to their
characteristics (n=150).
Parents characteristics No %
Age of parents in years:
< 20 years 14 9.3
20< 30 years 48 32.0
30< 40 years 76 50.7
>40 years 12 8.0
Level of educational :
Illiterate 117 78.
Read and write 29 19.3
Highly educated 4 2.7
Working:
Working 30 20.0
Not working 120 80.0

Table (3): Number and percentage distribution of the studied parents knowledge
regarding to mental disabilities (n=150).
Satisfactory knowledge Unsatisfactory knowledge
Items
No % No %
Definition of mental disabilities 62 41.3 88 53.7
Causes of mental disabilities 64 42.7 86 57.3
Onset of symptoms in years 71 47.3 79 52.7
Degree of mental disabilities 62 41.3 88 53.3
Clinical manifestations 75 50 75 50.0
Complication s of mental disabilities 63 42.0 87 58.0
Treatment of mental disabilities 64 42.7 86 57.3
Different methods of dealing with mentally disabled
56 37.3 94 62.7
child
Table (4): Number and Percentage Distribution of the studied parents according to
their total knowledge regarding to mental disabilities (n =150)
Knowledge of mental disabilities No %
Satisfactory 66 44.0
Unsatisfactory 84 56.0
Total 150 100
Table (5): Numbers and Percentages Distribution of the studied parents according to
their total socialization style toward their children suffering from mental disabilities (n=150).
Parenting socialization styles No %
Punitive style:
 Low score 10 6.7
 Mild score 47 31.3
 High score 101 67.3
Emotional deprivation style:
 Low score 4 2.7
 Mild score 93 62.
 High score 45 30.0
Guidance style:
 Low score 72 48.0
 Mild score 53 35.3
 High score 25 16.7
Number not mutually

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Table (6): Correlation between Parent's Level of Knowledge and level of Care for
their Mentally Disabled Children (n=150).
Items Parent's knowledge
r-test P value
Level of care for mentally disabled children
0.78 0.03

Naser in Cairo city, and reported that, the

Discussion
majority of disabled children were not write
The finding of the present study and read. From the researcher point of view,
(Table 1): revealed that, more than half of due to low intelligence and poor academic
the studied children were in the age group of performance, learning slow rate which due
10 < 12 years with Mean ± SD 10.4 +1.9, to the appropriate methods of teaching not
These result was highly supported by used in schools.
Mohammed (2014), who studied As regards residence of the studied
assessment burnout feeling among family children the results revealed that, more than
member as a care giver of mentally retarded two thirds of the studied children were lives
children, who mentioned that males affected in rural area. Also ranked as fourth child in
by mentally disabled more often than female family. This finding was highly supported
and the age of children ranged between 6< by Sikandar & Pranati. (2015), who studied
12 years, while this result contradict with impact of disability of mentally retarded
study done by Ahmad (2015), who studied children on their parents Indian mentioned
health status and factors of mentally that, who found that the majority of
challenged children in school of mentally mentally children live in rural area. From the
disabled children, mentioned that, the researcher point of view it may be due to the
majority of mentally challenged children bad effect of living in rural area than urban
were in age from 5-9 years, while more area and unavailable health care services,
than two thirds of them were males. These and faulty concepts unaware about mental
results was highly supported by Awadalla et disability.
al. (2013) who studied determination of
maternal adaptation to mentally disabled Table (2): As regards the
child in ELminia, Egypt and found male characteristics of studied parents, the present
children out numbered the female children study showed that, Half of them were in age
by 3:1. Also this results in the same line group between of 30 < 40years. This study
with Barakat & Linney (2016), studied was supported with EL Malke (2014), who
children with physical handicaps and their studied the effect of education program on
mother relation of social support maternal parent of mental retarded children in their
adjustment and child adjustment and found adjustment to their children problem
that, the majority of children were male. Monufia University, who reported that,
about two thirds of mother and most fathers
In relation to studied children of mentally retarded children aged between
characteristics namely; level of education, 35-45 years old. Also was confirmed by
the present study illustrated that, more than Maryline & Flinsi (2015), who studied
three quarter of children were illiterate. This assessment the role of parents in the care of
results is highly supported by EL Saady mentally challenged children selected
(2014), who studies the epidemiology of special schools who reported that, the
disabilities among children at Mansheyet
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majority of studied sample were mothers researcher belief this finding due to
between age of 35 and above. unawareness and low educational level of
parents. From the researcher point of view
In relation to education level of
this may be due to the absence of mass
parents, more than three quarter of parents
media role in raising awareness about
were illiterate the result was confirmed with
mental disabilities among parents
the study of Demaso et al. (2014), who
studied the impact of maternal perceptions Table (4): in relation to parents total
and medical severity on the adjustment of knowledge this result finding that, near to
children with mental handicaps who two thirds of studied parents had
mentioned that, fathers and mothers of unsatisfactory total knowledge regarding to
children with intellectual disabilities were mental disabilities support by Vijayarani et
differed. Fathers seemed to have a slightly al. (2016) who study knowledge of family
better education than mothers. Also, EL caregivers on care of mentally challenged
Atreby (2014), who studied community children at selected institution, Bangalore,
screening for common disabilities below this results found that, 78% of the family
fifteen years in Cairo University who found caregivers had inadequate total knowledge.
that, near to three quarters of mothers having
Table(5): As regards of the studied
disabled children was illiterate.
parents according to their total parents
As regards the parents work, the socialization styles toward their children
present study revealed that, the majority of suffering from mental disabilities this
the parents had not working. This finding finding showed that the punitive style is the
was in same line with performed by Fathy highest score more than two thirds . While
(2015), who carried out a study about more than two thirds of the parents were
assessment of parents perception of support mild score used emotional method,
need to care for their mentally retarded Moreover slightly less than half of the
children found that, the majority of mothers parents were low score used guidance
of disabled children were housewives. style.Brown (2017) the impact of parenting
on conduct disorder in Jamaican male
Table (3): As regard to knowledge of
adolescents reported that the low levels of
studied parents sample regarding to mental
cognitive found among mental retarded
disabilities results revealed that ,more than
children in Jamaican suggest that the parents
half of the studied parents having
of this children used punitive style for their
satisfactory knowledge about were, onset of
children
symptoms & degree of mental disabilities
respective, while near to thirds of them Table (6): It was observed from the
unsatisfactory knowledge about causes, current study that there was positive
complication, treatment& different method correlation between parent's level of
of dealing with mentally disabled child knowledge about mental disability disease
respectively. This study was supported by and level of care for their mentally disabled
Khatib (2016) who study parental children. This result was supported by El-
knowledge regarding mental retardation and Ganzory et al. (2014), who studied the
special education. Majority of 78% of the effect of counseling on patterns of care,
family caregivers had inadequate knowledge, stress and life burden on parents of mentally
20% had moderately adequate knowledge retarded children. In Barwani, identified that,
and only 2% of the family caregivers had low level of knowledge associated with poor
adequate knowledge identification of signs level of care of mentally disabled children.
and symptoms of mental retardation the From the researcher point of view, the most
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