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To Care or Not to Care?

Faculty of Learning Disabilities Conference 27th March 2014 Dr. Sabiha Azmi- Clinical Psychologist Noreen Naz- Assistant Psychologist Rose Tomlins- Research Assistant. To Care or Not to Care?.

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To Care or Not to Care?

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  1. Faculty of Learning Disabilities Conference 27th March 2014 Dr. Sabiha Azmi- Clinical Psychologist Noreen Naz- Assistant Psychologist Rose Tomlins- Research Assistant To Care or Not to Care? Evaluating A Group Training Program for Family Carers of Adults with Severe Intellectual Disabilities and Challenging Behaviours

  2. Background • 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).

  3. 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

  4. Aims of the CB Training Program • Active Participation:- • Carry out individualised systematic assessment and intervention plans • Identify better ways of managing their own stress and adopt healthier coping strategies Confidence & Competence Opportunity to become ‘Expert Carers’ Provide well informed, up to date CB training for family carers A supportive environment, which is linguistically and culturally sensitive

  5. Who was the CB Training Program for? 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 • Family carer for someone with moderate/severe levels of LD and significant CB needs • South Asian • Recruited from community psychology and MDT waiting lists

  6. 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

  7. 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

  8. 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

  9. Case Study - Mr and Mrs T • 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 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

  10. Family Carer’s Competency Levels Average Weekly Recordings for all Family Carers (n=10)

  11. Carers’ Observations of CB Average Weekly Recordings for all Family Carers (n=10)

  12. Qualitative Results from Audio Diaries 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” 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”

  13. Qualitative Results from Audio Diaries 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 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”

  14. 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

  15. 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

  16. 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

  17. “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”

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