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 Research Evidence 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). Legal requirement to provide non-discriminatory services at all levels of provision Underutilisation of services, lack of culturally and linguistically appropriate services Services still struggling to firmly imbed the issue of delivering equitable services for people from BME communities

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:- Carry out individualised systematic assessment and intervention plans Identify better ways of managing their own stress and adopt healthier coping strategies Lit review identified training available for Staff Carers; very little for FAMILY carers Group ran in urdu and punjabi, with a bengali interpreter available if necessary. Confidence and competence to understand and manage their family member’s CB 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 Over the last few years 4 groups in total : this presentation is about 1 of them

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 Each carer chose ONE behaviour to work on; many were identified, chose the one which had most impact on their family lives: Examples: Destruction to property Self harm Physical / verbal aggression Sleeping difficulties Three approaches were interwoven into the group program. Active engagement in the program allowed implementation of individualised action plans for each carer depending on the role which the various approaches played in their child’s CB. Intervention strategies and CB plans were implemented as homework tasks, as the program progressed. Supportive environment allowed carers to support one another each week by discussing the week’s achievements or difficulties in the group.

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 GHQ – Translated and standardised for Asian populations.

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

Strategies Implemented 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 Increased consistency between Mr and Mrs T and day care Stopped reinforcing behaviours at night 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) All family carers felt: Increased awareness of the factors contributing to and reinforcing the challenging behaviours More competent in developing and utilising new strategies More confident in managing the challenging behaviours

Carers’ Observations of CB Average Weekly Recordings for all Family Carers (n=10) All family carers: Rated incidents of challenging behaviours as less intense as the program progressed Most family carers: Reported fewer incidents of challenging behaviours as the training program progressed ALL FAMILY CARERS scored lower on the Negative Impact on Family Life Likert Scale (pre. mean score = 8.2, post. mean score = 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 Individual plans = enabled carers to apply their learning to personal contexts, but do this within a supportive environment Passive to proactive: e.g. one carer used to watch TV and eat as a distraction, now more active in seeking out advice and emotional support instead. Carers who pray for a miracle cure. Now they pray for strength to cope.

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 Carers preferred experiential based learning (group discussions, role plays, case scenarios and practical learning) sessions require a high level of commitment, alertness and attention span. = subsequent groups were made shorter and spread over 12 weeks

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” “This kind of program should be offered to families like ourselves, especially those who cant speak, read or write English” “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” “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” “The Parents who attend are very supportive to each other” “It makes me realise I’m not alone in my situation and that there are lots of others like me”