NIMH FAMILY SUPPORT SCALE

(NIMI-I-FSS)

AUTHORS
Reeta Peshawaria
D.K.Menon
Don Bailey
Debra Skinner

NATIONAL INSTITUTE FOR THE MENTALLY HANDICAPPED

(Ministry of Social Justice and Empowerment Govt. of Jndia)
MANOVIKAS NAGAR P.O., SECUNDERABAL) - 500 009. A.R INDIA.
 NIMH FAMILY SUPPORT SCALE
(NIMH-FSS)

AUTHORS
Reeta Peshawaria
D.K.Menon
Don Bailey
Debra Skinner

*
NATIONAL INSTITUTE FOR THE MENTALLY HANDICAPPED
(Ministry of Social Justice and Empowerment, Govt. of India)
MANOVIKAS NAGAR P.O., SECUNDERABAD - 500 009. A.P. INDIA.
 National Institute for the Mentally Handicapped (NIMH)
Manovikasnagar, Secunderabad-500 009, A.P. India.

ISBN 81 -86594-17-5

October, 2000.

All rights reserved

Printed at: Sree Ramana Process, 1-7-270, S.D. Road, Secunderabad -500003. Ph :040-7811750
 PROJECT TEAM
TITLE OF PROJECT Family Intervention and Support Programmes for
Persons with Mental Retardation (1998-2003)

PRINCIPAL INVESTIGATORS Dr.Reeta Peshawaria and Dr.D.K.Menon

NIMH, Secunderabad, India E-mail : [email protected]

US COLLABORATORS Dr.Don Bailey and Dr.Debra Skinner

University of North Carolina, US

RESEARCH OFFICER Mr.Rahul Canguly

(June 1998-February 1999)

Ms.Binapani Mohapatra
(March 1999-July 1999)

RESEARCH ASSISTANTS Mr.Rajshekhar

(February 1999 - continuing)

Ms.Santosh Kumari
(February 1999 - August 1999)

Ms.Divya Bhatia
(May 1999 - July 1999)

Ms.Martha David
(February 2000 - continuing)

Mrs.Saila Kumari
(February 2000 continuing)

Mr.Arul Raj
(September 2000 - continuing)
 IDENTIFICifflOM DElTA SHEET

Name of the interviewer : Family No:

Position held

Name of the Institute

Date

CHILD CHARACTERISTICS

Name

Age

Sex

Level of mental retardation and

associated conditions (if any)

FAMILY CHARACTERISTICS

Total family income

Type of family : nuclear/non nuclear

Family status : intact/broken

Address and Telephone No

 INTRODUCTION
NIMH Family Support Scale (NIMH - FSS) has been developed as part of
the research project on "Family Intervention and Support Programmes for
persons with mental retardation" funded by the US-India rupee fund (1998-2003).

Having a child with mental retardation generates a number of additional

needs for the family which require to be met in order to cope with this special
situation. One of the known factors for effective coping is the support available
to the family. A need was felt to develop a culture specific tool:
a) To identify and assess the quantity and quality of support available to
the families,
b) To assess the need for more support to the families,
c) To identify the thrust areas of family intervention,
d) To objectively evaluate the family intervention programmes.

NIMH-FSS though has been developed to be used with parents of mentally

retarded individuals, it can also be used with other significant adult members of
the family.

As part of the development of this tool a study was conducted on a sample

of 52 parents (28 fathers and 24 mothers) of 52 mentally retarded individuals.
Only one of the parents of each of the mentally retarded child was interviewed. A
semi-structured interview schedule was developed for the purpose. Each of the
parents was interviewed individually using open ended questions followed by
probes as follows:
a) Because of having (name of the child with mental retardation) you
might be having some special needs. Could you please help us to
understand what those present needs are?
b) From whom do you normally seek the support to fulfill each of these
needs?
c) How satisfied are you with the support you are getting to fulfill each of
your need?
d) Which more sources of support you think you require to meet the
identified needs?
5
 The analysis of the data obtained helped to identify:
a) the areas in which the parents need support,
b) the various sources of support which are used by the parents)
c) to develop a quantitative scoring system and assign numerical scores
to measure the quantum of support available and further needed by
the family.
Following were the six areas identified for support which got included in NIMH-
FSS. All the six areas have been defined in the tool:
1. Personal
2. Financial
3. Technical
4. Recreation
5. Emotional
6. Material
Following were the sources of support which got included in NIMH-FSS. (The
first ten are in relation the index individual with mental retardation).
1. Spouse
2. Mother
3. Father
4. Siblings
5. Paternal Grandfather
6. Paternal Grandmother
7. Maternal Grandfather
8. Maternal Grandmother
9. Paternal Aunt/Uncle
10. Maternal Aunt/Uncle
11. Friends
12. Neighbours
13. Organisations/Agencies
14. Boss/Co-workers
15. Doctor
16. Other professionals
17. Religious/support group
18. Any other
Briefly the results of the study are shown at Table: I

—6
 AREAS AND SOURCES OF SUPPORT
(PARENTS n=52)
SI SOURCESOF AREAS FOR SUPPORT
No SUPPORT PHY. FINAN- ThcHNI- INFORM- RECREA. EMOTIO- MATh- OThERS TOTAL
81CM. CML CAL A11ON 11011 NAL RIM.

I MOTHER 21 4 - 3 15 7 1 - 51

2 FATHER 3 22 4 3 2 10 8 • 52

3 SIBLINGS 3 2 - - I - - - 6

4 PATERNAL
GRANDFATHER - I I I - - - - 3

5 PATERNAL .
GRANDMOTHER 10 1 - - 2 6 - - 19

6 MATERNAL
GRANDMOTHER 5 3 - 1 1 5 1 - 16

7 MATERNAL
GRANDFATHER - 3 - 7 - - - - 10

8 PATERNAL
- 3 4 -
AUNT/UNCLE 1 1 1 1 11

9 MATERNAL
AUNT/UNCLE 1 5 12 - 2 - 3 - 23

10 FRIENDS - 2 - 12 1 4 - - 19

11 NEIGHBOURS - 1 2 2 • 3 - - 8

12 INSTITUTIONS
SPL.SCHOOL - - 9 5 2 1 4 - 16

13 DOCTOR - - 9 7 - - - • 16

14 OFFICIALS/BOSS - - - - - - - 3 3

15 OTHERS 2 - I I I - I - 6

Note: (Sl.No.1 to 9 are in relation to the index child with mental

retardation)
7
 The study helped to format NIMH-FSS. In order that the NIMH-FSS helps
in providing directions for family interventions the dimensions such as
"utilisation", "level of satisfaction" and "need for more support" was retained in
the tool, the dimension on "Rank order utilisation" was added to find out the
rank of the sources of support utilized from most helpful to least helpful. However,
it was agreed to consider the scores on "utilization" and "level of satisfaction"
only for computing the overall "family support score". Another source of support
"spouse" of the mentally retarded individuals got added. The area of support
'Technical' and 'information' were clubbed under 'Technical'. As the next step
NIMH-FSS was field tested on 20 parents (10 mothers and 10 fathers) of 10
mentally retarded individuals to find out the feasibility of the tool. It was decided
to add 3 slots under item "Any other" in each area of NIMH-FSS to elicit unique
responses, if any, from the respondent.

The inter-rater reliability was established by having two raters from the
research staff independently assessing same 5 parents of mentally retarded
individuals using NIMH-FSS. The inter-rater reliability for NIMH-FSS was found
to be r=0.9776; p=<O.OO1. The final study is in progress under the project.

8
GUID(LIN(S FR ADMINISTRATION AND SCORING or
NIMH-rSS
1) Interview method is preferred over self-reporting method for gathering
information using NIMH-FSS.

2) The scale should be used by a person trained in interview method.

3) The interviewer should go through the scale and get familiarised with the
items in the scale before using it.
4) The interviewer should be familiar with the family members of the index
child with mental retardation to be interviewed to an extent that the
respective family members feel comfortable to share their concerns with
the interviewer. Hence adequate rapport with the family members is essential
-before starting to use NIMH - FSS.

5) The interviewer must take consent before using the scale with each of the
parent. The scale should be used separately for both mother and father
and as far as possible use the scale for both mother and father at the same
session one after the other or interview both mother and father at the same
time using separate interviewers.

6) Read the 'Instructions' paragraph to the respondent and ensure that he!
she has understood the intentions of the assessment. Also, read the
introduction/explanation paragraph for each area to the respondent before
eliciting information on each area of support.

7) Make sure that the information elicited for items that is, sources of support
from I to 10 under each area of support is. in relation to the person with
mental retardation.

8) For each item under "sources of support" ensure that you obtain choice
option from the respondent and give score of 2, 1 or 0 on all the three
dimensions, that is "utilization", "level of satisfaction", atid "need for more
support"

9) After obtaining the information/responses from the respondent on

"utilization", "level of satisfaction", and "need for support" for all the items
9
 in the given area of support, then collect information on the "rank order
utilization" of the sources of support reportedly being used by the
respondent starting from the most helpful to the least helpful. Follow the
same procedure for gathering information for each area of support.
10) The interview should be conducted in such a way that the interviewer does
not influence the decision of the concerned respondent.

11) Enter the total score for each area as also the grand total score obtained by
respondent on NIMH-FSS for both "Utilisation" and "Level of Satisfaction"
at the appropriate places provided in the profile sheet.
12) Complete the NIML-f-FSS profile sheets provided at the end of the tool after
the assessment for both parents separately on "utilisation" and "level of
satisfaction" of support. Information obtained form "need for more support
and "rank order utilisation" could also be compiled separately for
understanding and helping the families.

13) NIMH-FSS indicates that the higher the scores on "Utilization" greater the
quantity/amount of support available to the family. The higher the scores
on "Level of satisfation" the greater the quality of support available to the
family.

14) The grand total scores on "Utilization of support" and "Level of satisfaciton"
of support are added to calculate the total "Family Support Score". The
higher the score the greater is the family support.

10
 NIMIl FAMILY SUPPORT SCALE
(rIIMH-rss)
Client Name: Interviewer's Name: Date:
(person with mental retardation)

Family No: Baseline:

Respondent's Name: 1st Assessment:

Mother/Father (Tick)
2nd Assessment:

3rd Assessment:

4th Assessment:

Mother/Father (tick)

Instructions:
In our society people help each other at various times in
various ways. Please mention about those people, who are
providing help to you in your day to day life as well as in
managing your child with mental retardation. Kindly report
which of the following source of support (from item no.1-10 in
relation to the mentally retarded individual) you have utilized
in the past six months or are currently utilizing and place them
rank order; to what extend you are satisfied and If not satisfied
then what kind of support do you require.

11
AREA : I PERSONAL Does any one support you in doing household chores,
caring and looking after your child when you are away or busy, helping you in
emergencies or transporting child to school and back or other places on regular
basis? If so who?
(Item 1 to 10 are in relation to the person with mental retardation)
Source of UTILISATION LEVEL OF NEED FOR RANK ORDER
Support SATISFACTION MORE SUPPORT (UTIUSATION)
Baseline lit 2nd 3rd 4th BaselIne lit 2nd 3rd 4th Baseline Iii 2nd 3rd 4th Baseline 1st 2nd 3rd 4th
1. Spouse .

2. Mother
3. Father
4. Siblings
5. Paternal
Grandfather
6. Paternal
Grandmother
7. Maternal
Grandfather
8. Maternal
Grandfather
9. Paternal
Aunt/Uncle
10. Maternal
Aunt/Uncle
11. Friends S

12. Neighbours
13. Organizations!
Agencies
14. Boss/
Co-workers
15. Doctor
16. Other
professionals
17. Religious!
support group
18. Any other
19.
20.
Total Score
KEY: Utilisatlon: Using :2; Not Using :1; Not Avallable:O
Level Of Satisfaction: Very Satisf ied:2 ; Satisfled:1; Not Satisfied:O
Need for more support: No need for more support 2; Need for more support:1

12
Area : II FINANCIAL Does any one support you when you have financial
concerns in terms of family needs, child's medication, buying material and various
other expenditures? If so who?

(Item I to 10 are in relation to the person with mental retardation)

Source of UTILISATION LEVEL OF NEED FOR RANK ORDER
Support SATISFACTION MORE SUPPORT (UTILISATION)
Baseline lit 2nd 3rd 4th BaselIne 1st 2nd 3rd 4th BaselIne lit 2nd 3rd 4th BaselIne lii 2nd 3rd 4th
1. Spouse .

2. Mother
3. Father
4. Siblings
5. Paternal
Grandfather
6. Paternal
Grandmother
7. Maternal
Grandfather
8. Maternal
Grandfather
9. Paternal
Aunt/Uncle
10. Maternal
Aunt/Uncle
11. Friends
12. Neighbours
13. Organizations/ '
Agencies
14. Boss/
Co-workers
15. Doctor
16. Other
professionals
17. Religious!
support group
18. Any other
19.
20.
Total Score
KEY: Utilisatlon: UsIng :2; Not Using :1; Not Available:O
Level Of Satisfaction: Very Satisfled:2; Satisfied:1; Not Satlsfied:O
Need for more support: No need for more support 2; Needfor more support:1

13
AREA: III TECHNICAL Does any one help you in understanding your child's
condition better, training him/her, explaining about services available, government
benefits from time to time and other information about recent trends, or laws
concerning mental retardation? If so who?
(Item I to JO are in relation to the person with mental retardation)
Source of UTILISATION LEVEL OF NEED FOR RANK ORDER
Support SATISFACTION MORE SUPPORT (UTILISATION)
BaselIne 1st 2nd 3rd 4th Baseline 1st 2nd 3rd 4th Baseline 1st 2nd 3rd 4th Baseline 1st 2nd 3rd 4th

1. Spouse
2. Mother
3. Father
4. Siblings .

5. Paternal
Grandfather
6. Paternal
Grandmother
7. Maternal
Grandfather
8. Maternal
Grandfather
9. Paternal
Aunt/Uncle
10. Maternal
Aunt/Uncle
11. Friends
12. Neighbours
13. Organizations!
Agencies
14. Boss!
Co-workers
15. Doctor
16. Other
professionals
17. Religious!
support group
18. Any other
19.
20.
Total Score
KEY: Utlilsation: Using :2; Not Using :1; Not Avallable:O
Level Of Satisfaction: Very Satlsfled:2 ; Satisfied:1; Not Satisfled:O
Need for more support No need for more support 2; Need for more support:1

14
AREA : IV RECREATION Does any one help your child in spending leisure
time, playing with him/her, relaxing, accompanying for an evening walk, market,
religious place, watching movie, mela, picnic etc.? If so who?

(Item ito 10 are in relation to the person with mental retardation)

Source of UTILISATION LEVEL OF NEED FOR RANK ORDER
Support SATISFACTION MORE SUPPORT (UTILISATION)
Baseline 1st 2nd 3rd 4th BaselIne 1st 2nd 3rd 4th Baseline 1st 2nd 3rd 4th Baseline 1st 2nd 3rd 4th
1. Spouse
2. Mother
3. Father
4. Siblings
5. Paternal
.
Grandfather
6. Paternal
Grandmother
7. Maternal .
Grandfather
8. Maternal
Grandfather
9. Paternal
Aunt/Uncle
10. Maternal
Aunt/Uncle —
11. Friends
12. Neighbours
13. Organizations!
Agencies
14. Boss/
Co-workers
15. Doctor
\. c3
professionals
17. Religious! .
support group :
18. Any other
19.
20.
Total Score
KEY: Utilisatlon: UsIng :2; Not Using :1; Not Available:O
Level Of Satisfaction: Very Satisfled:2; Satlsfled:1; Not Satisfled:O
Need for more support: No need for more support 2; Need for more support:1

15
AREA: V EMOTIONAL Do you have any person/s with whom you can share
your deepest feelings, conceriTs, thoughts, emotions and for seeking hope in
distress without any hesitation? If so who?

(Item I to 10 are in relation to the person with mental retardation)

Source of UTILISATION LEVEL OF NEED FOR RANK ORDER
Support SATISFACTION MORE SUPPORT (UTILISATION)
BaselIne lit 2nd 3rd 4th BaselIne lit 2nd 3rd 41k BaselIne lit 2nd 3rd 4th Buellne 1st 2nd 3rd 4th
——
1.Spouse
2. Mother
3. Father
4. Siblings
5. Paternal
Grandfather
6. Paternal
Grandmother
7. Maternal
Grandfather
8. Maternal
Grandfather
9. Paternal
Aunt/Uncle
10. Maternal
Aunt/Uncle
11. Friends
12. Neighbours
13. Organizations!
Agencies
14. Boss!
Co-workers
15. Doctor
16. Other
professionals
17. Religious!
support group
18. Any other
19.
20.
Total Score
KEY: Utlilsatlon: UsIng :2; Not Using :1; Not Avallabie:O
Level Of Satisfaction: Very Satlsflad:2'; Satlsfled:1; Not Satisffed:O
Need for more support: No need for more support 2; Need for more support:1

16
AREA : VI MATERIAL Does any one help you in informing or getting things
for your child such as play material, aids and appliances, training materials, or
any others things in material form? If so who?

(Item 1 to 10 are in relation to the person with mental retardation)

Source of UTILISATION LEVEL OF NEED FOR RANK ORDER
Support SATISFACTION MORE SUPPORT (UTILISATION)
Baseilie 1st 2nd 3rd 4th Baseline 1st 2.4 3rd 4th BaselIne lii 2nd 3rd 4th BaselIne 1st 2nd 3rd 4th
1. Spouse
2. Mother
3. Father
4. Siblings
5. Paternal
Grandfather
6. Paternal
Grandmother
7. Maternal
Grandfather
8. Maternal
Grandfather
9. Paternal
Aunt/Uncle
10. Maternal
Aunt/Uncle
11. Friends
12. 1'leighbours
13. Organizations/
Agencies
14. Boss/
Co-workers
15. Doctor
16. Other
professionals
17. Religious/
support group
18. Any other
19.
20.
Total Score
KEY Utilisation: Using :2; Not Using :1; Not AvaiIabIe:O
Level Of Satisfaction: Very SatlsfLed:2 ; Satisfled:1; Not Satisfied:O
Need for more support: No need for more support 2; Need for more support:1

17
 NIMH FAMILY SUPPORT SCALE
(NIMH-Fss)
PROFILE SHEET
UTILISATION OF SUPPORT
Client's Name: Family No:
(person with mental retardation)
Mother's Name:
AREAS Max. Baseline 1st 2nd 3rd 4th
Score Assessment Assessment Assessment Assessment Assessment
% Ob % Ob % Ob % Ob % Ob
score score score score score
1. PERSONAL 20
2. FINANCIAL 20
3. TECHNICAL 20
4. RECREATION 20
5. EMOTIONAL 20 .
6. MATERIAL 20
Grand Total 120
KEY: Ob score: Obtained score % : Percentage
LEVEL OF SATISFACTION
AREAS Max. Baseline 1st 2nd 3rd 4th
Score Assessment Assessment Assess ment Assessrnent Assess ment
% Ob % Ob % Ob % Ob % Ob
score score score score score
1. PERSONAL 20
2. FINANCIAL 20
3. TECHNICAL 20 .
4. RECREATION 20
5. EMOTIONAL 20
6. MATERIAL 20
Grand Total 120
KEY: Ob score : Obtained score % : Percentage

FAMILY SUPPORT SCORE

UTILISATION LEVEL OF SATISFACTION FAMILY SUPPORT
Assessments OF SUPPORT SCORE
(1) (2) (1+2)
Baseline Assessment .

1St Assessment .
2nd Assessment
3rd Assessment
4th Assessment

18
 NIMII FAMILY SUPPORT SCALE
(NIMII-Fss)
PROFILE SHEET
UTILISATION OF SUPPORT
Client's Name: Family No:
(person with mental retardation)
Father's Name:
AREAS Max. Baseline 1st 2nd 3rd 4th
Score Assessment Assessment Assessment Assessment Assessment
% Ob % Ob % Ob % Ob % Ob
: score score score score score
1. PERSONAL 20
2. FINANCIAL 20
3. TECHNICAL 20
4. RECREATION 20
5. EMOTIONAL 20
6. MATERIAL 20
Grand Total 120
KEY: Ob score : Obtained score % : Percentage
LEVEL OF SATISFACTION
AREAS Max. Baseline 1st 2nd 3rd 4th
Score Assessment Assessment Assessment Assessment Assess ment
% Ob % Ob % Ob % Ob % Ob
score score score score score
1. PERSONAL 20
2. FINANCIAL 20
3. TECHNICAL 20
4. RECREATION 20
5. EMOTIONAL 20
6. MATERIAL 20
Grand Total 120
KEY: Ob score : Obtained score % : Percentage

FAMILY SUPPORT SCORE

. UTILISATION LEVEL OF SATISFACTION FAMILY SUPPORT
Assessments OF SUPPORT SCORE
(1) (2) (1+2)
Baseline Assessment
1st Assessment
2nd Assessment
3rd Assessment
4th Assessment

19