Faculty of Learning Disabilities Conference27th March 2014

Dr. Sabiha Azmi- Clinical PsychologistNoreen Naz- Assistant Psychologist

Rose Tomlins- Research Assistant

To Care or Not to Care?To Care or Not to Care?

Evaluating A Group Training Program for Family Carers of Adults with Severe Intellectual Disabilities and Challenging Behaviours

Policy and Legislation Race Relations Amendment Act (2000), Valuing People (2004),

Equalities Act (2008)

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).

Background

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

Our Local Perspective

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 & CompetenceOpportunity 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 TCaring for 19 year old daughter with Severe LD, autism,

and mental health issues. Day care 3 days per wk, no structured activities at home

ChallengingBehaviours

• 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 mid-way 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 Family Carers (n=10)

Carers’ Observations of CB

Average Weekly Recordings for all Family Carers (n=10)

Qualitative Results from Audio Diaries1. 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 Diaries4. 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

“The Parents who attend are very supportive to

each other”

“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”

“I feel like I have learnt so much.I just wish I had

this kind ofprogram 20 years

ago when my two sons were

young and we were

inexperienced parents”

“It makes me realise I’m not

alone in my situation and that there are lots of others like me”

“This kind of program should be offered to

families like ourselves, especially

those who cant speak, read or write

English”

“ Even though I work I make time to get to the group every week because it is so worthwhile”