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MANAGING THE CAREGIVER’S BURDEN OF MENTALLY RETARDED CHILD WITH BEHAVIOURAL PROBLEMS: A CASE REPORT

MANAGING THE CAREGIVER’S BURDEN OF MENTALLY RETARDED CHILD WITH BEHAVIOURAL PROBLEMS: A CASE REPORT

VP Barre1 & GS Kaloiya2

1Vijaya Prasad Barre: Assistant Professor, Department of Clinical Psychology, Dharwad Institute of Mental Health and Neurosciences (DIMHANS)-Karnataka.

2Dr. Gauri Shanker Kaloiya: Asst. Prof. of Clinical Psychology, National Drug Dependence Treatment Centre (NDDTC), All India Institute of Medical Sciences (AIIMS), Ansari Nagar, New Delhi-110029

*corresponding author: GS Kaloiya, gkaloiya@gmail.com

 

Abstract

Background: Parenting a child with mental retardation is not an easy job. Parents having a child with mental retardation experience a variety of stressors and stress reactions related to the child’s disability. Parents are known to get impacted in many ways because of having a child with mental retardation. These include feeling sad, depressed at various stages of child’s life and experiencing other emotional reactions. Their social life may get affected with recreational and leisure activities getting reduced. Interpersonal relationships with the family members, friends and others also get affected. It includes extra-child care responsibilities and burden.

Aim: The aim of this case study was to assess and manage care givers’ burden of a mentally retarded child.

Methods: Child and both the parents were assessed on using SFBT, VSMS, BASIC-MR, GEM and FAMNS Scales at pre and post intervention.

Results: Behavioural intervention improved Child’s behaviour problems as well as parents’ burden.

Conclusion: Behaviour Management Program is effective in not only reducing child’s problem but care givers’ burden also.

Key words: Mental retardation, parents, psychological intervention, behaviour therapy

 

Introduction

Parenting a child with mental retardation is not an easy job.1 Parents having a child with mental retardation experience a variety of stressors and stress reactions related to the child’s disability.2 There are multiple problems of having a mentally retarded child in the family. The problems are related to almost all areas of life of care givers.3 found that the cumulative impact of daily parenting hassles and difficulty in dealing with children represent significant stressors that may subsequently affect parents and family functioning. Consequently parents of the retarded child have been viewed as being at risk for a variety of family life problems and emotional difficulties, families often face increased financial burdens.4 Family income may be reduced because of care-giving responsibilities make it difficult for both the parents to work outside. An added area of concern for some families is difficulty in managing family relations.5 Roles within the family get restructured and the resulting strain may manifest itself in family problems, including high rates of dissatisfaction, family quarrelling and marital breakdown or divorce, difficulty in establishing and maintaining satisfying social networks.

Interpersonal relationships with the family members, friends and others also get affected. It includes extra-child care responsibilities and burden.1 Relationships with professionals also may be a source of added stress (Turnbull, 1986) as parents face difficulties in their efforts to secure adequate services for their child or obtain information about their child’s disability.

The family of children with mental retardation experience burden due to various problems encountered with regard to financial conditions, routine family interaction, leisure activities, physical and mental health of other members of the family caused by the handicapped family member. The psychological trauma of the family members is generally more profound.6 reported that parental burden in the form of interfere in their family routine or leisure, which even resulted in social, familial and emotional problems. Further the nature of burden face by family members may range from difficulties in transportation of child to place of service delivery, management of child’s behaviour, problems, and disruption of their daily routine, economic, physical and or social burden.7

Aim of this study was to assess and manage caregiver’s burden of Mr Child with behavioural problems

Case Description:

Master S, 12 years old Male, with no formal education, Muslim from lower middle rural socio economic status, presented with behaviour problems. His parents were hardly educated, father was working as a carpenter and his mother was a housewife. They remain irritable and shown inability to manage the child. Master S was born full term normal delivery at home, birth weight and colour was normal but birth cry was absent. Gradually, parents started noticing that the child’s development is not adequate, he started sitting at the age of 12 months and speech and language was significantly delayed. Family members were very affectionate towards the child because he is the youngest of four siblings and overprotective. The child’s interaction with other siblings was problematic, he used to disturb them. Other sibling’s reaction towards the child was normal, most of the time he used to play with father and occasionally with his elder sister.

Since six years other problems were noticed he remains quiet and usually gets irritated when he was provoked. He then became aggressive and used to start hitting others. At times he starts hitting himself and bites on his hand. He would break house hold articles. He would touch and pinch any stranger. Since parents were not able to manage the child hence, visited faith healers and doctors but they did not see any improvement in the child. Even parents were confused about their child’s condition like mental illness or some other problems. Most of the time parents especially father used to postpone his daily works. Adequate nutrition and immunization were present, no consanguinity, no family history of mental illness, mental retardation, epilepsy, alcohol and drug abuse was present.

Family history:

Developmental History

developmental Milestones: His developmental milestones were delayed in all the areas. Details given as follows-

Table 1. Developmental Milestones

I.

Motor

Milestones

Delayed development

III.

Personal /social

Delayed development

a.

Head control

3 months

a.

Smiles at others

5 years

b.

Sitting

12 months

b.

Responds to Name

5 years

c.

Standing

22 months

c.

Feeds to self

7 years

d.

Walking

23 months

d.

Toilet control

7 years

II.

Speech &

Language

 

IV.

Adaptive behaviour

 

a.

Babbling

13 months

a.

Avoiding danger

4 years

b.

First word

4 years

b.

Writing alphabets

Not yet

c.

Two words

4years-3months

 

 

 

d.

Sentences

Not yet

 

 

 

No physical and sensory impairments were reported in developmental history.

School history: Master S was sent to a Govt. school at the age of 5 years but he could not learn even alphabets, counting etc. He was unable to read and write and at the same time creating problems in the school. So after a year he was taken out from the school and since then he remained at home.

Play history: He preferred to play with his sister and father. He would not play with other children rather observe them playing. No any other leisure time activities. He was not interested in watching TV. Occupational history: In kitchen he would help his mother like giving glass or plate etc.

Current Level of Functioning: Skill and problematic Behaviours

(A) Skill behaviours:

(i) Motor: Gross and Fine motor skills: The child had developed basic gross motor functioning like walk, runs, climbing, throwing and kicking etc. but fine motor skills were very limited. (ii) Self help (activities of daily living): Eating: Drinks from cup or glass, eats with own hand without spilling. Toilet Training: could wash himself after toilet use. Brushing: Child had ability to brush his teeth, spits paste, and rinses mouth with verbal instructions/prompting. Bathing/Dressing/Grooming: Dependent on others. (iii) Communication: Receptive language: He would not able to point to picture in a book. Expressive language: He could use two word phrases, like names, common objects in use etc. (iv) Academics: reading and writing, number and time, colour concept, shapes and sizes, counting/ calculation – not able to perform any task. (v) Socialization: Domestic/ Social: Not able to wash utensils, dries clothes, greet guest with “Namaste” or “Adaab’, and say thank you. (vi) Educational/vocational status: Nil.

(B). Problem behaviours: Self biting, slapping others/himself, pinching others, throwing and breaking household objects.

Parent’s expectation: (i) To become normal child (adjustable child), (ii) To reduce behavioural problems and (iii) To reduce burden

On SFBT the child’s mental age (MA) was found to be 4 years 6 months with corresponding IQ of 41. On VSMS the child obtained a social age (SA) of 4years 8 months with a corresponding Social Quotient (SQ) of 43. On BASIC MR (Part – B) Identified Problem Behaviour- Self biting, Slapping & pinching others, and Throwing & breaking household objects were frequently reported.

Diagnosis

Overall clinical interview, observation and test findings suggest that the Master S is Moderate Mental Retardation with Behavioural problems.

Tools

Psychological assessment done using following tools:

1.      Seguin Form Board Test (sfbt).8 This is a performance test of intelligence and administered to know the IQ of the child.

2.      Vineland Social Maturity Scale (VSMS).9 This test assesses social development by interviewing parents and observing child’s behaviour.

3.      Behavioural Assessment Scale for Indian Children (BASIC-MR Part B).10 This is for assessment of skill behaviours and problem behaviours of the child.

4.      NIMH General Etiology and Management (GEM) Questionnaire.11 This is to assess parents’ knowledge related to MR.

5.      NIMH Family Needs Schedule.12 This is to assess parents’ needs related to management of the child, facilities provided by govt. etc.

Tool no.4 and 5 are used at pre and post interventions.

Psychological intervention:

Specific Areas to be focused including Objectives:

Short term objectives: Psycho-educating the parents and to decrease the occurrence of undesirable behaviour.

Long term objectives: Improving appropriate socialization and improving desirable behaviour

Types and techniques of intervention used:

·         Psycho-education for parents

·         Physical restraint and Time out for child

 

Table 2. Therapeutic Programme and Plan

5 sessions were conducted and each session lasted for 45 minutes to one hour

Sessions

Topics

Session – 1

1.      Misconception clarification

2.      Information condition

Session – 2

3.      Child management (behavioural problems)

4.      Services

5.      Marriage

Session – 3

 

6.      Personal / emotional

7.      Personal / social

Session – 4

8.      Govt., benefits

Session – 5

9.      Miscellaneous

Therapy process (need based parents intervention)

Initial Phase

The initial phase of intervention process focused on building therapeutic alliance, detailed assessment of the child regarding the severity and extent of his problems. Parents were also assessed identifying misconception as well as parents unmet needs. Detailed history was taken along with relevant information required to reach proper intervention programme related to the parent and child.

Intervention goals were discussed and decided in collaboration with the parents.

Session - 1

Misconception: the part of parent misconceptions, parent counselled (handling emotional reactions, management of misconception, unrealistic expectations and unhealthy attitudes, helping and redefine roles of family members).

Information condition: in this area were focused on communicating the diagnosis, results of assessments and prognosis of index of the child.

Session – 2

Child management/ Services/ Marriage

The aim of emphasizing this was to explain to the parent that the behaviour management programme like functional skills training and problem behaviour management. Related to services and marriage this was explaining to the parent that the child’s present level of functioning and future life cycle needs. Providing information on availability of services suited to child’s needs and for marriage (genetic counselling were done).

Session - 3

Personal / emotional

Personal / social

In this session debrief the need for individual counselling /Psychotherapy with the reference of parent for healthy adaptation (family characteristics, needs, supports, coping and concerns). In this session was also focused on provide information on parent to parent support groups and facilitate parent participation.

Session 4 – Government benefits and Legislation

This session was focused on providing information on Government benefits and concessions available to mentally retarded child and the family. Providing information on legislation related to mentally retarded individuals.

Session 5 - Miscellaneous (Post assessments)

The main aim of emphasizing this session was getting feedback from the last few sessions and other clarifications followed by post assessment only concentrating on Misconception / needs and short term behavioural changes in child.

Behavioural Management Programme (BMP)

Behavioural Management Programme was implemented with help of BASIC–MR Part B and functional analysis was employed to manage child behavioural problems.

Functional analysis

Step – I: identified behavioural problems (scores 0-never, 1-occasionally, 2-frequently)

·         Self biting - 2

·         Slapping others - 2

·         Pinching others- 2

·         Throwing / breaking household objects-2

Step – II: selecting the problem behaviour: Based on the parents needs, which were more distractive problems for them as well as child.

1.      Self biting

2.      Pinching others

Step – III

Identified rewards for the child to reinforce for the desirable behaviour

1.      Primary rewards: sweets and pakoda

2.      Material rewards: new clothes

3.      activity reward: playing with ball

Step - IV

Table 3. Record of the baseline of the problem behaviour selected for behavioural management

Problem Behaviour:

Record technique

average per service/ class /home

1). Self-biting

Event recording

Average 10 -12, times per week at home

2). Pinching others

frequency recording

Average 6 -8, times per week at home / out of home

 

Step – V

1) What happens immediately before the problem behaviour occurs?

Problem Behaviour (1): occurs at home especially when parents are not giving attention to him; then he used to bite himself.

Problem Behaviour (2): occurs more at home/ sometime out of home, when stranger / relatives visit their house.

2) Are there any particular time of the day when problem behaviour is more likely to occur.

PB: (1) and PB: (2) No particular time is noticed.

3) Does the problem behaviour occur in the presence of particular persons?

PB: (1) More with Family members. & PB: (2) not related to any particular person.

4) How frequently / how long does the Problem behaviour occurring?

PB: (1) Average 10-12 per week at home & PB (2). Average 6-8 per week at home

5) What Happens after the problem behaviour has occurred?

PB: (1) parents used to stop him and would provide him whatever he wanted.

PB: (2) parents were used to scold him or/and would take him away from strangers/guests.

6) What are the effects of his Problem behaviour?

PB: (1) he used to get injured & PB: (2) others used to slap him

Maintaining factors in child problem behaviour: Attention and Meeting demands

(Behavioural technique used for managing Problem behaviour)

PB: (1)

A.    Physical restraint: when the child starts biting himself

B.     When this undesirable behaviour occurred it was suggested to restrict the physical activity of the child,

C.     By making him ties his hands or holds his hands tightly to his sides for 2-3 minutes and saying strictly not to repeat that behaviour. (Contingent rewards given sweets / pakoda).

PB: (2)

A). time out

When the child started to pinching parents were said to the child "No, No pinching" and hold his hands and saying “no pinching just clap your hands". If the child will continue to pinch then immediately used TIME OUT,

When the child pinches:

·         He should be sent to the corner of the room and should be left there 2 minutes.

·         Grab his hands firmly and say ‘no’.

·         Provide him with interesting objects like koosh ball, a beanbag, a novel squish toy to distract him

 

Resutls:

Pre and Post Assessment of the Parents: Assessment of parents done using GEM and FAMNS questionnaire

 

Table 4. NIMH General Aetiology & Management (GEM) Questionnaire

Sl.

Items

Father

Pre Post

Mother

Pre Post

1.

The problem of Mental Retardation is found in children

Y N

Y N

2.

Mental retardation is an infectious disease

Y N

Y N

3.

Mental retardation is mental illness

Y N

Y N

4.

Persons with mental retardation can be fully cured

Y N

Y N

5.

As the mentally retarded child grows up he would gradually become normal

Y N

Y N

6.

Most of the mentally retarded individual can become capable of helping other persons in simple tasks(a)/ Individual differences exist among mentally retarded persons(b)

N Y

N Y

7.

Persons with mental retardation usually remain unhappy

Y N

Y N

8.

The problem of mental retardation does not exist in our society

Y N

Y N

9.

The condition of MR may not always be transmitted from parents to children but can also be caused by factors during pregnancy, after birth, or during childhood.

N Y

N Y

10

Children suffering from fits may not suffer from MR(a)/ Mental retardation is caused as an effect of lunar eclipse at the time of pregnancy or birth of the child(b)

Y N

Y N

11.

Medicine only can cure mental retardation

Y N

Y N

12.

Love alone will not benefit mentally retarded individuals (a)/ Mentally retarded individuals are disobedient(b)

N Y

Y N

13.

Malnutrition in pregnant women can cause MR

NA

N Y

a.       = Item for Father, (b)= item for mother; Y= yes, N= no; NA= Not applicable

This table shows that both parents’ were not well informed and had many misconceptions which were corrected after post intervention.

Table 5. NIMH Family Needs Schedule (FAMNS-Parents Form)

 

areas

Total possible scores

Obtained score

 

Pre*

Post**

       

1

Information condition.

12

8

2

Child management.

16

10

3

Services.

10

8

4

Marriage.

02

2

5

Personal – emotional.

08

7

6

Personal – social.

04

4

7

Government benefits.

04

4

 

Total

50

43

* Pre intervention scores ** Post intervention scores

Discussion

The first objective of the study was to Psycho-educate parents. Results from Table 4 shows that there was difference between pre-and post- psychological intervention on NIMH-General Aetiology and Management (GEM) Questionnaire. Scores of father and mother were 13 at pre-intervention which became 0 at post-intervention. Whereas Table 5 shows that on NIMH-(FAMNS) Parents-form during pre-intervention scores were 43, after psychological intervention scores were reduced to 19, this reduction was depicted on figure 1. It shows parents misconceptions were reduced after psycho-education. Similar findings were found in13 to train parents in the skills to train their children with mental retardation. A seminal review reports Parent training as a stand-alone strategy in treating younger children with autism spectrum disorders. New research suggests that parents can learn to better handle tantrums and aggression, which may improve their child’s overall performance.14 One seminal study15 attempts to dispel misconception about autism and parental needs. An intervention package programme was developed for select target group of parents of children with autism spectrum disorders. The findings of their study indicate improvement in the different areas of need domain effectively satisfied parents of children with autism spectrum disorders. There was a trend for significant efficacy of dispels the misconception and parents needs as well. Second objectives were to decrease the occurrence of undesirable behaviour in the child.

Table 3 Shown that based on BASIC-MR identified two behaviour problems that were self-biting and pinching others. After BMP by using physical restraint for self-biting and time out for pinching others technique and reinforcement was done by offering different rewards. With these techniques child behaviours were self-biting occurrence of behaviour by frequency scores of 12 to 9 reduced. Whereas pinching others occurrence of behaviour by frequency scores of 8 to 4 reduced after BMP. This signifies the behaviour problems of child were markedly reduced through appropriate techniques, figures 2 and 3 depicted reduction of behavioural problems after 5weeks of follow-up psychological intervention. An overall finding of this present study was helped to dispel the misconception and reduced their burden to manage their child behaviour with help of BMP.

Conclusion:

The present study concludes that psychological intervention is effective in dispelling the misconception of parents with mental retardation. Psychological intervention is effective in providing information regarding parental needs. Psychological intervention is effective in teaching the parents to manage their child with mental retardation as well as the parent’s quality of life.

References:

1. Peshawaria, R. Meeting Counselling needs of parents of disabled children, Samadhan Newsletter January 1992: 10-11.

2. Orr, R., Cameron, S.J., Dobson, L.A., & Day, D.M. Age related changes in stress experienced by families with a child who has developmental delays. Mental Retardation 1993:31(3): 171-176.

3. Crnic, K.A., Friedrich, W.N., Greenberg, M.T. Adaptation of families with mentally retarded children: A model of stress, coping, and family ecology. American Journal of Mental Deficiency 1983; 88: 125–138.

4. Pai S and Kapur RL. “The burden on the family of psychiatric patient: development of an interview schedule.” British Journal of psychiatry 1981;138: 332-5.

5. Friedrich, W. & Friedrich, N. Psychological assets of parents of handicapped and non-handicapped children. American Journal of Mental Deficiency 1981; 85:551-3.

6. Sethi, B., & Sitholey, P. A study of time utilization, perception of burden and help expectation of mothers of urban mentally retarded children. Indian J Soc Psychiatry 1986: 2: 25-44.

7. Venkatesan S and Das AK “Reported burden on family members in receiving/ implementing home based training programs for children with mental handicaps” Journal of psychological Researches 1994; 38(1):39-45.

8. Bharatraj, J. Norms on Seguin Form Board Test with Indian Children. Journal of All India Institute of Speech Hearing (JAIISH) 1971; 2: 34-91

9. Malin, A. J. Vineland Social Maturity Scale and Manual: Indian Adaptation. Saraswathipuram, Mysore, Karnataka, India: Syayamsidha- Prakashana, 1992.

10. Peshawaria, R., & Venkatesan, S. Behavioural Assessment Scales for Indian Children with Mental Retardation- (BASIC-MR), NIMH, Secunderabad, India, 1992.

11. Peshawaria, R., Menon, D.K., & Stephenson, L. NIMH GEM Questionnaire, NIMH Secunderabad, India, 2007.

12. Peshawaria, R., Menon, D.K., Ganguly, R., Roy, S., Pillay, R.P.R.S & Gupta, A. NIMH Family Needs Schedule (NIMH FAMNS). NIMH Secunderabad, India, 1992.

13. Peshawaria, R & Menon, D. K. Needs of the families of mentally handicapped children. Indian Journal of Disability Rehabilitation, 1991.

14. Turnbull, A., Summers, J., & Brotherson, M. Family life cycle: Theoretical and empirical implications and future directions for families with mentally retarded members. In J. J. Gallagher & P. M. Vietze (Eds.), Families of handicapped persons: Research, programs, & policy issues. Baltimore: Paul H. Brookes, 1986.

15. Barre, VP, Arya, S & Shivkumar, TC. Psycho-educational Intervention for Parents of Children with Autism Spectrum Disorders. International Journal of Social Science Tomorrow 2012; 1 (4):1-8.