Caring for the Carers Stressors associated with supporting people who express themselves through challenging behaviour and how they can be overcome

What is Positive Behaviour Support? ‘Positive behavior support (PBS) is an applied science that uses educational and systems change methods (environmental redesign) to enhance quality of life and minimize problem behaviors’ Carr et al (2002)

Feature of PBS (Carr et al 2002) comprehensive lifestyle change a lifespan perspective ecological validity stakeholder participation social validity systems change and multicomponent intervention emphasis on prevention

Characteristics of PBS and PBS Planning Assessment based Comprehensive Proactive Lifestyle enhancement/inclusion Person Centred Values Everyday application Teaching of alternative skills Bambara and Knoster 1998

Triadic Approach Consultant Mediators Focus person Significance of natural v artificial environments (Tharp and Wetzel 1969)

Characteristics of the 3 types of participants Consultants: ‘any one with the knowledge’ Mediators: ‘anyone with the reinforcers’ Focus person: ‘anyone with the problem’ Consultant skills given away to people in natural relationships with focus people – family members and carers.

Immediate impact of challenges Fear; anger; embarrassment Muscle tension Feelings of nausea Heart palpitations/ racing Sweating Confusion Post incident phenomena (physical and mental exhaustion, depression, guilt)

Impact of emotions (1) ‘Negative’ emotions associated with aggressive challenging behaviour: Sadness: 38% Annoyance: 41% Despair: 22% Anger: 24% Fear: 19% Disgust: 0% Bromley and Emerson (1995)

Impact of emotions (2) Negative emotions associated with self injury: Sadness: 38% Annoyance: 15% Despair: 32% Anger: 15% Fear: 11% Disgust: 15% Bromley and Emerson (1995)

Impact of emotions (3) Negative emotions associated with destructiveness: Sadness: 39% Annoyance: 22% Despair: 33% Anger: 17% Fear: 9% Disgust: 6% Bromley and Emerson (1995)

Long term effects of exposure to challenges Anger Fear Guilt Blame Unwarranted expectation of aggression Irritability Coping by avoidance or confrontation Loss of interest in job; apathy Decrease in performance quality Sickness and absence

BURNOUT Burnout is characterised by three elements: Emotional exhaustion Depersonalisation; cynicism Reduced personal accomplishment (Thompson and Rose 2011)

What do staff report as being stressful? Behaviour that is wearing over time(82%) Perception that there is no effective way to deal with the behaviour (68%) Unpredictable behaviour (71%) Behaviour that is difficult to understand (68%) Effect of challenges on other service users’ quality of life (43%) Self Injury (61%) Aggression aimed at others (50%) Physical strength of challenging service users (50%) Bromley and Emerson 1995

Why might a carer be more likely to be affected by stress? Personal stressors such as financial or relationship worries Habitually negative mind set/lack of sense of control Physical illness/poor mental health Negative portrayal of carers in the media Lack of social support Preoccupation with job at the expense of other activities/interests

Gaps in knowledge PBS principles Mental Health needs Physical health needs Autism Specific conditions – Fragile X; epilepsy Impact of abuse

Relationship between negative attributions and staff behaviour Service-user behaviour Attribution Emotional response Staff behaviour Impact on environment

What helps? Appointing the right people in the first place Characteristics of the ‘Hardy’ personality: Commitment, the belief that one’s life and activities have meaning and value; Control, the conviction that one can control events; Challenge, change in one’s life is likely and should be embraced as being beneficial.

Significance of Emotional Intelligence Emotional intelligence in carers, an attribute which incorporates the abilities to attend to, understand, regulate and repair one’s emotional states

Predictors for effective carers Benevolence Empathy Introversion ‘Benevolence and empathy didn’t surprise me but I didn’t expect introvert to come up at all. I realised that extroverts don’t empower individuals. It made sense that you had to be an introvert because you have to be a good listener. It’s about being a person who is more reflective and observational.’ Bill Mumford (Managing Director, MacIntyre care organisation)

Coping styles Wishful thinking versus practical, solution based problem solving Importance of sense of ‘self efficacy’

Teaching immediate coping skills Self awareness of appropriate body language Deep breathing exercises Active listening and problem solving Vulnerability points

Effective Post Incident Support Post crisis support Immediate Medium/long term Critical Incident Analysis

How to ensure that plans are effective and helpful? Planning with teams Matching support to individual teams Attending to ongoing team needs Ensuring grasp of theoretical principles Adequate data gathering and analysis Create momentum Regular review Facilitator knowledge Clear, understandable language

Specific Training Needs Core Values training PBS principles inc understanding of functionality Mental Health Needs Physical Health needs Service User histories Individual conditions and their impact

Teaching/facilitating specific stress relieving/ coping strategies Muscle relaxation Mindfulness Assertiveness Deep Breathing Cognitive Therapy Acceptance Access to counselling

Leadership and Management Positive regard Celebrating success (SPQC) Praise and appraisal Supervision/PDP Team days; away days; stress management days Creating cultures of support Measuring stress levels routinely Cohesive and consistent organisational culture