To Care or Not to Care?
Evaluating A Group Training
Program for Family Carers of
Adults with Severe Intellectual
Disabilities and Challenging
Behaviours
Faculty of Learning Disabilities Conference
27th March 2014
Dr. Sabiha Azmi- Clinical Psychologist
Noreen Naz- Assistant Psychologist
Rose Tomlins- Research Assistant
Background

Policy and Legislation


Race Relations Amendment Act
Equalities Act (2008)
(2000),
Valuing People
(2004),
Research Evidence

Stress and isolation experienced by family carers
(Azmi et al 2004;
Emerson et al 2003; Mir et al 2006)

Carers of people with LD & CB are more highly stressed,
isolated, at higher risk of developing mental health problems
(anxiety/depression) compared to other carer groups (Emerson &
Hatton et al 2004)


Underutilisation of services (P.C. McDonald 2008)
Many BME services seen as separate from mainstream
service delivery (Hatton et al, 2004, 2008; Azmi & Cotton et al 2006).
Our Local Perspective



Birmingham has some of the
country's most deprived, and
ethnically diverse regions;
Approx population of 1
million;
Those with CB living in family
homes at risk of:
- health inequalities

- denied access to
services
- poorer outcomes
Socio economic deprivation &
deprivation of expectations
Aims of the CB Training Program


Provide well informed, up to date CB training for family
carers
A supportive environment, which is linguistically and
culturally sensitive
Active Participation:o Carry out individualised systematic assessment and
intervention plans
o Identify better ways of managing their own stress and adopt
healthier coping strategies
Confidence & Competence
Opportunity to become ‘Expert Carers’
Who was the CB Training Program for?



Family carer for someone with moderate/severe levels
of LD and significant CB needs
South Asian
Recruited from community psychology and MDT waiting
lists
Participants:
10 family carers
Males and Females; Ages 25-60yrs
7-10 members attended each session
12 sessions over 6 weeks, at local Community
Centre
Content of the CB Training Program

What is Challenging Behaviour?

Identifying individual experiences and what they mean to the
family carer

The role of Cognitive, Neuro-behavioural and Systemic
factors in each identified CB

Methods of carrying out systematic functional/behavioural
assessments

Applying this to individualised CB plans

Developing effectiveCognitive, Neuro-brhavioural and
Systemic intervention strategies

Identifying better coping strategies for the carers
Measures Used






General Health Questionnaire
Ways of Coping
Perceived levels of stress
Daily records of frequency/intensity of CB
Daily Likert ratings of family carers competency
scales
Carer’s daily audio diaries – transcribed and analysed for
main themes
Systemic, Cognitive & Neuro-behavioural models



Models used in:

Assessment

Intervention

Evaluation
Over the program carers were able to identify the specific
model or models necessary to assess, develop intervention
plans, and implement
The case discussed focus on the use of these approaches
loosely to help achieve the outcomes
Case Study - Mr and Mrs T
Caring for 19 year old daughter with Severe LD, autism,
and mental health issues. Day care 3 days per wk, no
structured activities at home
Challenging
Behaviours
• Sleep
problems
• Obsessive
behaviours
• Physical /
Verbal anger
and
aggressive
outbursts
• Lack of
interaction
and
engagement
Strategies
Implemented
1. Increased
consistency
between Mr and
Mrs T and day
care
2. Stopped
reinforcing
behaviours at
night
3. Stopped
abandoning
strategies midway through
Outcomes
•Erratic sleep
reduced and no
disruptive
behaviours at
night
•Improved
interaction
between
parents and
their daughter
•Mr and Mrs T
demonstrated
more control
over their home
and increased
confidence
Family Carer’s Competency Levels
Average weekly recordings for all par
Average Weekly Recordings for all Family
Carers (n=10)
Average Score
10
8
6
C
4
2
0
1
2
3
4
Week
5
6
Carers’ Observations of CB
Average weekly recordings for all parents
r all parents
Frequecy
Intensity
Average Score
Average Weekly Recordings for all Family
Carers (n=10)
6
5
4
3
2
1
0
Fre
Inte
1
2
3
4
Week
5
6
Qualitative Results from Audio Diaries
1. Increased consistency in strategies used
“I was going to give in when my daughter was
banging on our door at night, but my wife always
says not to and this time I followed her lead”
2. Better alliances between families; emotional support,
and shared responsibilities.
3. Increased awareness of the impact of their own
actions on challenging behaviours.
“I think sometimes it’s our own fault he gets
upset. We keep trying to make things better but
it gets worse. We leave him alone now and he’s
ok”
Qualitative Results from Audio Diaries
4. More time spent with the individual, promoting a
more positive relationship
“I take my brother out as much as I can
now. We have fun together and it gives my mum a
break too”
5. Reduced feelings of helplessness, increased confidence
in their abilities as carers
“we all went to a party and made sure our son had
all the things he would need when there. We took
him out to get lots of fresh air and breaks away from
the crowd”
6. Increased optimistic outlook on the future and more
realistic expectations
What worked?




Carers emotional and practical support of one another
Individual plans for carrying out assessments and
implementing interventions
Shifts in carer attributions and cognitive formulations
appears to be more significant in a peer and supportive
context
Dynamics of the group and relationships plays a very
important role in making some of the positive shifts:



Confidence
Understanding
Competence in tackling CB
What didn’t work as well?




Formalised teaching approaches
Despite long sessions (10am-2pm) time felt too short to
cover all the relevant material . . .
. . . However, Carers’ report sessions feeling long,
draining, and material being too much to take in at once
High intensity program




homework tasks
Diaries
tape recordings
role plays etc
Future Plans

Supports the use of intensive group programs for improving
management of CB in home settings



Power of mutual carer support, group processes and dynamics
Future groups = language specific to include non-BME family
carers as well
Producing a CB Training Manual and DVD in several
languages

Ensure sustainability of these developments

Employment of a bilingual family support worker
“This kind of program
should be offered to
families like
ourselves, especially
those who cant speak,
read or write English”
“I feel like I have
learnt so much.
I just wish I had
this kind of
program 20 years
ago when
my two sons were
young and we
were
inexperienced
parents”
“I’ve been searching for
a group like this for
years but haven’t
found one. It’s a great
way to learn, understand
my child, and of course
meet other carers in the
same boat as me”
“ Even though I work
I make time to get to
the group every
week because it is so
worthwhile”
“It makes me
realise I’m not
alone in my
situation and that
there are lots of
others like me”