Presentation on theme: "To Care or Not to Care? Evaluating A Group Training Program for Family Carers of Adults with Severe Intellectual Disabilities and Challenging Behaviours."— Presentation transcript:
1To Care or Not to Care?Evaluating A Group Training Program for Family Carers of Adults with Severe Intellectual Disabilities and Challenging BehavioursFaculty of Learning Disabilities Conference27th March 2014Dr. Sabiha Azmi- Clinical PsychologistNoreen Naz- Assistant PsychologistRose Tomlins- Research Assistant
2Background Policy and Legislation Research Evidence Race Relations Amendment Act (2000), Valuing People (2004), Equalities Act (2008)Research EvidenceStress 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 provisionUnderutilisation of services, lack of culturally and linguistically appropriate servicesServices still struggling to firmly imbed the issue of delivering equitable services for people from BME communities
3Our Local PerspectiveBirmingham 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 outcomesSocio economic deprivation & deprivation of expectations
4Aims of the CB Training Program Provide well informed, up to date CB training for family carersA supportive environment, which is linguistically and culturally sensitiveActive Participation:-Carry out individualised systematic assessment and intervention plansIdentify better ways of managing their own stress and adopt healthier coping strategiesLit review identified training available for Staff Carers; very little for FAMILY carersGroup ran in urdu and punjabi, with a bengali interpreter available if necessary.Confidence and competence to understand and manage their family member’s CBConfidence & CompetenceOpportunity to become ‘Expert Carers’
5Who was the CB Training Program for? Family carer for someone with moderate/severe levels of LD and significant CB needsSouth AsianRecruited from community psychology and MDT waiting listsParticipants:10 family carersMales and Females; Ages 25-60yrs7-10 members attended each session12 sessions over 6 weeks, at local CommunityCentreOver the last few years 4 groups in total : this presentation is about 1 of them
6Content of the CB Training Program What is Challenging Behaviour?Identifying individual experiences and what they mean to the family carerThe role of Cognitive, Neuro-behavioural and Systemic factors in each identified CBMethods of carrying out systematic functional/behavioural assessmentsApplying this to individualised CB plansDeveloping effectiveCognitive, Neuro-brhavioural and Systemic intervention strategiesIdentifying better coping strategies for the carersEach carer chose ONE behaviour to work on; many were identified, chose the one which had most impact on their family lives:Examples:Destruction to propertySelf harmPhysical / verbal aggressionSleeping difficultiesThree 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.
7Measures Used General Health Questionnaire Ways of Coping Perceived levels of stressDaily records of frequency/intensity of CBDaily Likert ratings of family carers competency scalesCarer’s daily audio diaries – transcribed and analysed for main themesGHQ – Translated and standardised for Asian populations.
8Systemic, Cognitive & Neuro-behavioural models Models used in:AssessmentInterventionEvaluationOver the program carers were able to identify the specific model or models necessary to assess, develop intervention plans, and implementThe case discussed focus on the use of these approaches loosely to help achieve the outcomes
9Strategies Implemented 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 homeChallengingBehavioursSleep problemsObsessive behavioursPhysical / Verbal anger and aggressive outburstsLack of interaction and engagementStrategies ImplementedIncreased consistency between Mr and Mrs T and day careStopped reinforcing behaviours at nightStopped abandoning strategies mid-way throughOutcomesErratic sleep reduced and no disruptive behaviours at nightImproved interaction between parents and their daughterMr and Mrs T demonstrated more control over their home and increased confidence
10Family 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 behavioursMore competent in developing and utilising new strategiesMore confident in managing the challenging behaviours
11Carers’ 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 progressedMost family carers:Reported fewer incidents of challenging behaviours as the training program progressedALL FAMILY CARERS scored lower on the Negative Impact on Family Life Likert Scale (pre. mean score = 8.2, post. mean score = 6)
12Qualitative 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”
13Qualitative 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
14What worked? Carers emotional and practical support of one another Individual plans for carrying out assessments and implementing interventionsShifts in carer attributions and cognitive formulations appears to be more significant in a peer and supportive contextDynamics of the group and relationships plays a very important role in making some of the positive shifts:ConfidenceUnderstandingCompetence in tackling CBIndividual plans = enabled carers to apply their learning to personal contexts, but do this within a supportive environmentPassive 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.
15What didn’t work as well? Formalised teaching approachesDespite 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 onceHigh intensity programhomework tasksDiariestape recordingsrole plays etcCarers 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
16Future PlansSupports the use of intensive group programs for improving management of CB in home settingsPower of mutual carer support, group processes and dynamicsFuture groups = language specific to include non-BME family carers as wellProducing a CB Training Manual and DVD in several languagesEnsure sustainability of these developmentsEmployment of a bilingual family support worker
17“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’tfound 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 ofprogram 20 years ago whenmy two sons were young and wewere 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”