Family Quality of Life (FQOL) of Parents of Children with Intellectual and Developmental Disabilities Enrolled in Private Mental Retardation School, at Thrissure.

 

Dr. Sr. Tresa Anto

Vice Principal, Jubilee Mission College of Nursing, Jubilee Gardens, Kachery, Thrissure-5 Kerala.

*Corresponding Author E-mail: srtresaanto@gmail.com

 

ABSTRACT:

Introduction: The birth of a child with intellectual and developmental disabilities is likely to be one of the most traumatic events experienced by the family. Parents and other children in the family must undergo a variety of profound changes to adapt to the presence of a disabled member. Some are able to cope up with such a situation and some experience psychological stress and affect their family life. So there is a need to evaluate the family quality of life (FQOL) of parents of children with intellectual and developmental disabilities. Methods:- A non experimental descriptive study design using Non probability, convenient sampling technique. family quality of life (FQOL) of parents of children with intellectual and developmental disabilities were assessed using self administered questionnaire to a total of 30 parents of children with intellectual and developmental disabilities in a private Mental Retardation School, at Thrissure, from 08-Jan-2015 to 07-Feb-2015..socio demographic values of both parents and children were collected to assess the association between FQOL and demographic variables. Family quality of life scale (FQOL) questionnaire was used to assess the family quality of life. Results: Shows that 16(53.34%)of participants belongs to the age group more than 1 5 years and 53.33 % of them were males. 15(50%)of them were having Mental retardation and 24 (80%)of them were from Hindu religion. 24(80%)of parents were males. 15(50%) were cooli workers, with high school education and belongs the age group between 41-50 years. 25(83.34%)of them were from nuclear family. The family income of 23 (76.76%)of them were two lakhs. 21(70%) were having Very satisfactory level of Family quality of life in family interaction domain, parenting domain and Disability related support domain. but only (36.67%)were under Very satisfactory and satisfactory rating level in Emotional well being domain . Physical/ material wellbeing domain had 43.34% Very satisfied family quality of life. present study findings are consistent with previous study findings and suggest that alternative methods would be useful in improving family quality of life of parents of children with intellectual and developmental disabilities.

 

KEYWORDS: Family Quality of Life, Intellectual and Developmental Disabilities.

 

 


 

 

INTRODUCTION:

All parents wish for a healthy baby, but some parents though not by their choice are gifted with mentally retarded child. The common term mental retardation is now named as intellectual and developmental disabilities by American Association of Intellectual and Developmental Disabilities (AAMR). The birth of a mentally retarded child is likely to be one of the most traumatic events experienced by the family. Parents and other children in the family must undergo a variety of profound changes to adapt to the presence of a disabled member. Some are able to cope up with such a situation and some experience psychological stress. Parenting a child with intellectual and developmental disabilities is not an easy task. Diagnosis of intellectual disability in a child provokes a period of disequilibrium followed eventually by an adjustment to life with or without undue stress. There are various stresses which emerge and re-emerge over time. Discrepancy between expectations and the presentation of the developmentally disabled child continue bringing feelings of grief 1. All this can affect different parents differently. Their physical and mental health may actually suffer or they perceive it to suffer. Nurses play key position to act for primary intervention as a care provider. This motivated the researcher to examine the family quality of life among parents of children with mental retardation.

 

STATEMENT OF PROBLEM:

A study to evaluate the family quality of life (FQOL) of parents of children with intellectual and developmental disabilities enrolled in private Mental Retardation School, at Thrissure.

 

OBJECTIVES:

1.      To evaluate the family quality of life of parents of children with intellectual and developmental disabilities

2.      To find out the association between the family quality of life and the selected socio demographic variables

 

HYPOTHESIS:

1.      Parents of Children with intellectual and developmental disabilities (IDD) will not experience satisfactory family quality of life.

2.      Selected Socio demographic variables will not influence Family quality of life (FQOL) of Children with intellectual and developmental disabilities.

 

METHODS AND MATERIALS:

Research Design:

Evaluative research, Descriptive study design.

 

Research approach:

Cross sectional survey approach was used to evaluate the quality of life of parents of children with mental retardation.

 

Sample and sample size:

The study enrolled 30 parents of children with intellectual and developmental disabilities (PCIDD) in a private Mental Retardation School, at Thrissur.

 

 

Sampling technique:

Non probability, convenient sampling technique was used for selecting subjects from 08-Jan-2016 to 07-Feb-2016.

 

Inclusion criteria:

parents of children enrolled in private Mental Retardation School, able to understand and speak Malayalam, willingness to participate in the study and availability during the period of data collection.

 

Exclusion criteria:

Parents of children with less than 4 years and more than 18 years were excluded from the study.

 

Ethical consideration:

The present study was approved by the Institutional Ethics Committee (IEC) and Informed consent was obtained from the subjects who participated in the study.

 

METHOD OF DATA COLLECTION:

A semi structured interview schedule was prepared to collect data from subjects based on the study objectives. The semi structured interview schedule was prepared in two sections to collect the data.

 

Section I consisted of two parts with part I: containing socio- demographic data of children with intellectual and developmental disabilities like age, sex, diagnosis, religion. and part II: containing socio-demographic data of subjects like age, sex, diagnosis, religion educational qualification, occupation, type of family, annual income.

 

Section II was family quality of life scale. Standardized FQOL was used to assess quality of life of parents of children with intellectual and developmental disabilities.Standardized FQOL is an 25 items scale. Which has five sub-scales domains : Family interaction,Parenting,Emotional wellbeing, Physical well being , and Disability related support with 25 items. out of which 6 items were to assess the Family interaction,6 items of Parenting, Emotional wellbeing consist of 4 items , Physical well being consist of 5 items, Disability related support consisted of 4 items. The items rated on satisfaction of parents on a 4-point scale, where 1 = very dissatisfactory 2= dissatisfactory,3 = satisfactory, and 4= very satisfactory . The items scored to each of the first sub-scales domains: Family interaction-6x4=24,Parenting-6x4=24,Emotional wellbeing-4x4=16 and Physical well being -5x4=20, Disability related support-4 x4=16 with minimum obtainable score was 25 and maximum score of 100.

 

Validity and reliability of tool:

The content validity of the semi structured interview schedule was established by consulting the experts from the various disciplines such as Department of Psychology, Department of Mental Health Nursing, and Statistics. The reliability were checked by using Cronbach’s alpha ,the score was 0.85 of the tool which was tested by implementing the semi structured interview schedule on 3 parents of children with mental retardation enrolled in private Mental Retardation School Thrissur.

 

STATISTICAL ANALYSIS:

Descriptive and inferential statistics was used for data analysis. The collected data was organized, tabulated and analyzed by using descriptive statistics i.e. percentage, mean, mean percentage and standard deviation. The Chisquare test was used to find out the association between the family quality of life (FQOL) and sociodemographic variables.

 

RESULT:

Figure 1: Shows that 16(53.34%)of participants belongs to the age group more than>1 5 years and 16( 53.33 %) of them were males. 15(50%)of them were having Mental retardation and 24 (80%)of them were from Hindu religion. Figure 2: Shows that 24(80%)of parents were males. 15(50%) were cooli workers , with high school education and belongs the age group between 41-50 years. 25(83.34%)of them were from nuclear family. 23 (76.76%)of them have the family income of two lakhs.

 

 

Figure 1 : Distribution of Demographic characteristics of children with intellectual and developmental disabilities

 

Table 1: Frequency and percentage distribution of family interaction domain( n=30)

Family Interactions domain

f

%

Very satisfactory

21

70

satisfactory

8

26.66

dissatisfactory

0

00.00

Very dissatisfactory

1

03.34

 

 


 

 

Figure 2: Distribution of Demographic characteristics of parents of children with intellectual and developmental disabilities ( n=30)

 


Table 1 shows that 21(70%) were having Very satisfactory level of Family quality of life in family interaction domain, 8(26.66%) subjects were, satisfactory with their regular interactions, 1(03.34%) subjects were Very dissatisfactory with the family interactions. The null hypothesis that Parents of Children with intellectual and developmental disabilities (IDD) will not experience satisfactory family quality of life is rejected. 21(70%) were having Very satisfactory level of Family quality of life in family interaction domain, 8(26.66%) subjects were , satisfactory with their regular interactions, 1(03.34%) subjects were Very dissatisfactory with the family interactions. The null hypothesis that Parents of Children with intellectual and developmental disabilities (IDD) will not experience satisfactory family quality of life is rejected. 21(70%) were having Very satisfactory level of Family quality of life in family interaction domain.

 

Figure 3: Frequency and percentage distribution of family interaction domain( n=30)

 

Table 2: Frequency and percentage distribution of Parenting domain(n=30)

Parenting domain

f

%

Very Satisfactory

21

70

Satisfactory

7

23.32

Dissatisfactory

1

03.34

Very Dissatisfactory

1

03.34

 

Table 2 shows that 21(70%) were having Very satisfactory level of Family quality of life in parenting domain. 23.32% subjects were , satisfactory with their regular parenting , 03.34% subjects were dissatisfactory and Very dissatisfactory with the parenting. The null hypothesis that Parents of Children with intellectual and developmental disabilities (IDD) will not experience satisfactory family quality of life is rejected . 21(70%) were having Very satisfactory level of Family quality of life in parenting domain.

 

Figure 4: Frequency and percentage distribution of Parenting domain(n=30)

 

Table 3: Frequency and percentage distribution of Emotional well being domain(n=30)

Emotional well being domain

f

%

Very Satisfactory

11

36.67

Satisfactory

11

36.67

Dissatisfactory

6

20

Very Dissatisfactory

2

06.66

 

Table 3 shows that only (36.67%)were under Very satisfactory and satisfactory rating level in Emotional well being domain Item analysis:20% subjects were , dissatisfactory with their Emotional well being., 06.66% subjects were very dissatisfactory with the Emotional well being. The null hypothesis that Parents of Children with intellectual and developmental disabilities (IDD) will not experience satisfactory family quality of life is rejected . 11(36.67%) were having Very satisfactory family quality of life in Emotional well being domain.

 

 

 

Figure 5:Frequency and percentage distribution of Emotional well being domain (n=30)

 

Table 4:-Frequency and percentage distribution of Physical wellbeing domain(n=30)

Physical/ material wellbeing domain

f

%

Very Satisfactory

13

43.34

Satisfactory

8

26.66

Dissatisfactory

5

16.66

Very Dissatisfactory

4

13.34

 

Table 4 depicts that Physical/ material wellbeing domain had 43.34% Very satisfied family quality of life. 26.66% subjects said that they are satisfactory ,16.66% gave dissatisfactory with their physical wellbeing. 13.34% said subjects were very dissatisfactory with physical /material wellbeing. The null hypothesis that Parents of Children with intellectual and developmental disabilities (IDD) will not experience satisfactory family quality of life is rejected . 43.34% were having Very satisfied family quality of life in Physical wellbeing domain.

 

 

Figure 6:-Frequency and percentage distribution of Physical wellbeing domain (n=30)

 

Table 5:Frequency and percentage distribution of Disability related support domain(n=30)

Disability related support domain

f

%

Very Satisfactory

21

70

Satisfactory

6

20

Dissatisfactory

0

0

Very Dissatisfactory

3

10

 

Table 5 depicts that21(70%) were having Very satisfactory level of Family quality of life in Disability related support domain. but 20% subjects were satisfied and 10% parents said that they are very dissatisfied about the Disability related support domain with the family members. The null hypothesis that Parents of Children with intellectual and developmental disabilities (IDD) will not experience satisfactory family quality of life is rejected . 21(70%) were having Very satisfactory level of Family quality of life in Disability related support domain.

 

 

Figure 7:Frequency and percentage distribution of Disability related support domain (n=30)

 

 

 

 

Table 6: Chi square, degree of freedom(df), and p values of association of Family interation domain with sociodemographic and clinical data variables among parents of children with intellectual and developmental disabilities(n=30)

Sociodemographic and clinical data variables

Family interaction domain

Child

Chi-Square

df

P value

Sex

8.215

8

0.425

Age

10.514

16

0.973

Diagnosis

16.568

24

0.976

Religion

5.353

8

0.842

Parents Sex

7.887

8

0.393

Age

23.977

24

0.486

Education

30.255

32

0.610

Occupation

27.467

24

0.338

Family Type

8.098

8

0.377

Income

31.244

24

0.503

 

Table 6 shows that, there is no significant association between child’s sex, age, diagnosis, religion , parent’s sex, age, education ,occupation ,family type, and family income with family interaction quality of life among parents of children with intellectual and developmental disabilities. So the null hypothesis that Selected Socio demographic variables will not influence Family quality of life (FQOL) of Children with intellectual and developmental disabilities is accepted with no significant p value (>0.05 ) in the Selected Socio demographic variables with family interaction.

 

Table 7: Chi Square, Degree of freedom(df), and p values of association Parenting Domain with sociodemographic variables among parents of children with intellectual and developmental disabilities

Sociodemographic And Clinical Data Variables

Parenting Domain

 

Child

Chi-Square

df

P Value

Sex

5.920

9

0.960

Age

15.902

18

0.662

Diagnosis

23.100

23

0.935

Religion

9.026

9

0.423

Parents Sex

10.284

9

0.263

Age

25.243

27

0.865

Education

37.802

36

0.293

Occupation

33.597

27

0.263

Family Type

5.817

9

0.944

Income

25.998

18

0.259

 

Table 7 shows that, there is no significant association between child’s sex, age, diagnosis, religion, parent’s sex, age, education ,occupation ,family type, and family income with Parenting Domain quality of life among parents of children with intellectual and developmental disabilities. So the null hypothesis that Selected Socio demographic variables will not influence Family quality of life (FQOL) of Children with intellectual and developmental disabilities is accepted with no significant p value (>0.05 ) in the Selected Socio demographic variables with Parenting Domain.

 

 

 

Table 8: Chi square, degree of freedom(df),and p values of association of Emotional Well Being Domain with sociodemographic and clinical data variables amongparents of children with intellectual and developmental disabilities

Sociodemographic And Clinical Data Variables

Emotional Well Being Domain

Child

Chi-Square

df

P Value

Sex

8.528

9

0.573

Age

16.697

18

0.432

Diagnosis

24.963

27

0.512

Religion

9.591

9

0.278

Parents Sex

11.424

9

0.104

Age

22.347

27

0.938

Education

38.064

36

0.080

Occupation

31.065

27

0.339

Family Type

10.849

9

0.151

Income

20.227

18

0.872

 

Table 8 shows that, there is no significant association between child’s sex, age, diagnosis, religion , parent’s sex, age, education ,occupation ,family type, and family income with Emotional Well Being Domain quality of life among parents of children with intellectual and developmental disabilities. So the null hypothesis that Selected Socio demographic variables will not influence Family quality of life (FQOL) of Children with intellectual and developmental disabilities is accepted with no significant p value (>0.05 ) in the Selected Socio demographic variables with Emotional Well Being Domain

 

Table 9: Chi square, degree of freedom(df), and p values of association of Physical domain with sociodemographic and clinical data variables among parents of children with intellectual and developmental disabilities(n=30)

Sociodemographic And Clinical Data Variables

Physical domain

Child

Chi-Square

df

P Value

Sex

10.201

12

0.803

Age

23.563

24

0.462

Diagnosis

41.808

36

0.836

Religion

10.353

12

0.853

Parents Sex

14.129

12

0.329

Age

39.335

36

0.635

Education

51.943

48

0.612

Occupation

21.698

24

0.945

Family Type

9.159

12

1.000

Income

33.255

24

0.544

 

Table 9 shows that, there is no significant association between child’s sex, age, diagnosis, religion , parent’s sex, age, education ,occupation ,family type, and family income with family interaction quality of life among parents of children with intellectual and developmental disabilities. So the null hypothesis that Selected Socio demographic variables will not influence Family quality of life (FQOL) of Children with intellectual and developmental disabilities is accepted with no significant p value (>0.05 ) in the Selected Socio demographic variables with Physical domain.

 

 

Table10 :Chi square, degree of freedom(df),and p values of association of Disability support Domain with sociodemographic and clinical data variables among parents of children with intellectual and developmental disabilities

Sociodemographic And Clinical Data Variables Child

Disability support Domain

Chi-Square

df

P Value

Sex

5.250

8

0.932

Age

15.115

16

0.496

Diagnosis

22.511

24

0.986

Religion

7.798

8

0.465

Parents Sex

6.470

8

0.832

Age

23.624

24

0.658

Education

29.039

32

0.925

Occupation

10.118

16

0.998

Family Type

8.667

8

0.331

Income

16.428

16

1.000

 

Table 10 shows that, there is no significant association between child’s sex, age, diagnosis, religion , parent’s sex, age, education ,occupation ,family type, and family income with family interaction quality of life among parents of children with intellectual and developmental disabilities

 

DISCUSSION:

In this section the meaning of the above findings has been addressed and specific gaps in our understanding of family quality of life among parents of children with intellectual and developmental disabilities were identified. The results of family quality of life among parents of children with intellectual and developmental disabilities confirmed our hypothesis that the families predicts higher levels of satisfaction in FQOL. Jani examined the social problems related to the presence of a intellectually disabled child. Results indicate that parental feelings were marked by anxiety about future. Also, negative effects towards other siblings, psychological stress, decreased interaction with neighbours and relatives, misunderstandings within family and financial loss were significant facts associated with presence of a child with intellectual disability in the family2. Heller et al. found that in contrast with fathers of intellectually disabled children, mothers spent more time providing care, offered more types of support and perceived more care giving burden3. The behaviour and health of the children had a better impact on mothers than on fathers.Seshadri et al reported a direct relationship between the degree of perceived burden, social emotional burden, disruption of family routine and disturbance in family interactions for women with intellectually disabled children rather than men4. Shin and Crittenden in their study provided explanations for well being of Korean andAmerican mothers of children with intellectual disability. Causes of stress for the American mothers was specific to the individual variables. For Korean mothers, cultural values that carry social influence were strongly associated with their experience of stress5. Kermanshahi et al. addressed the perceptions of lives with children with intellectual disability found six major themes: challenging the process of acceptance, painful emotional reactions, the interrelatedness of mother’s health and child’s well being, struggles to deal with oneself or the child, inadequate support from the family and the community, and the anxiety related to child’s uncertain future6.The heterogeneity of the effect however also indicated that intellectual and developmental disabilities does not necessarily provoke psychopathology in all parents. Reports on the proportions of intellectual and developmental disabilities - There was some indication that the effect of intellectual and developmental disabilities was more homogeneous for fathers than for mothers. Work outside the home can be an opportunity to release some of the stress around While at the same time, full-time working schedules may impede contacts with health professionals and therefore diminish opportunities to discuss worries concerning . Fathers tend to work fulltime schedules while mothers’ occupational lives are more likely to vary In addition, the nursing burden for children with intellectual and developmental disabilities vary greatly. Further enquiries on parent’s psychological adjustment with parents of children with intellectual and developmental disabilities will be needed to determine whether this hypothesis can be empirically scored. Factors correlated with parents' psychological adjustment Variability in parents' psychological adjustment was expected to be associated with child, parent, family, and environment factors.

 

REFERENCES:

1.     Wikler L.Chronic stresses of families of mentally Retarded Children.Family relations April 1981; 30(2):281-288.

2.     Jani MC. Social a mentally retarded child in family. Dissertation Diploma in Medical and Social Psychology. Bangalore University 1967.

3.     Heller T, Hsieh K, and Rowitz L. Maternal and Paternal caregiving ofpersons with mental retardation across the life span.Family relations 1997; 46 (4): 407-115.

4.     Seshadri M K, Verma S K, and Prashad. Impact of mental retardation of child on the family in India. Journal of Clinical Psychology 2000; 473-498.

5.     Shin Y J, and Crittenden K S. Well being of mothers of children with mental retardation : An evaluation of the double ABCX model in a cross cultural context. Asian Journal of Social Psychology 2003; 6(3): 171-184.Asia Pacific Disability Rehabilitation Journal 126 Vol. 21 No. 2, 2010

6.     Karmanshahi S M, Vanaki Z, Ahmadi F, Kazemnezad A, Mordoeh E and Azadfalah P. Iranian Mothers’ perceptions of their lives with children with mental retardation:A preliminary Phenomenological Investigation.Journal of Developmental and Physical Disabilities 2008;ISSN,DOI 10.1007/S 10882-008-9099-3.

 

 

 

Received on 27.06.2017           Modified on 16.08.2017

Accepted on 29.10.2017     © A&V Publications all right reserved

Int. J. Nur. Edu. and Research. 2018; 6(2): 138-144.

DOI:   10.5958/2454-2660.2018.00033.9