The use of Mindfulness with people with Intellectual Disabilities: a systematic review and narrative analysis By Erica McInnis, Dougal Hare, Melanie Chapman, Dene Donalds, Sue Caton & Duncan Mitchell.

Outline – ‘Shifting from reacting to responding’ What is mindfulness? Relevance to people with ID? Does it work? Who for? What for? How sure can we be?

What is Mindfulness? “the awareness that emerges through paying attention on purpose, in the present moment, and non-judgmentally to the unfolding of experience moment by moment” (Kabat-Zinn, 2003). Put simply, people spend too much time engaged in thinking, regretting, and worrying about things that have happened or might happen. They spend too little time focussed on their actual experience. The extra mental effort used in this fails to resolve problems, and actually contributes to greater feelings of distress.

Why is it useful for ID? Job advert: Wanted: A patient, calm, understanding, empathetic, energetic, enthusiastic person, who is able to keep to care plans, protect the rights of a vulnerable person, ensure the safety of clients and members of the public & protect the dignity of stigmatised people. To work with people who will: bite, throw objects, scratch, attack you with objects, head bang, withdraw, spit, run away, break furniture, attack others, eye gouge, scream, ask continuous questions & pick own wounds. Good sense of humour required! (Noone 2013)

Who for? What for? Staff / carers Family members For stress Family members – For stress People with intellectual disabilities – For clinical problems Stress: Emotional overload Equity theory Person-environment fit Demand – support Cognitive appraisal

Varieties of mindfulness _ Mindfulness-based Stress Reduction (MBSR) Developed in 1980s by Jon Kabat-Zinn An 8 week program (2.5 h per week + day of mindfulness+ daily practice) Guided mindfulness practices focused mainly on sensory awareness and body awareness Education about stress Gentle yoga and movement practices Developed for stress reduction of varied patient groups from chronic pain to anxiety and heart problems Well documented beneficial effects on stress reduction and well-being (e.g., Hofmann, 2010)

Varieties of mindfulness - Mindfulness Based Cognitive Therapy Developed by Segal, Williams and Teasdale in the1990s Targeting specific groups of patients with recurrent major depression while in remission to prevent relapse 85% MBSR + elements of Cognitive Behaviour Therapy (CBT) MBCT halved the rate of depressive relapse in patients with three or more past episodes (Teasdale, Segal & Williams, 2000)

Why is mindfulness important in relation to restrictive practices and reducing physical intervention? Staff who practice mindfulness decrease the frequency of physical interventions and restrictive practices when dealing with challenging behaviour. (Singh,Lancioni,Winton,Curtis, et al.2006) In winterbourne View, did staff stress lead to reacting rather than responding? A factor to consider to limit further occurrences

Why do staff practicing mindfulness reduce the use of restrictive practices? Because staff learn to respond to challenging situations rather than react. Because staff learn this approach it can be practiced during everyday life, everyday work experiences and incidents of challenging behaviour. It reduces the need to use Physical Intervention and other restrictive practices. It becomes a way of being.

Difference between responding and reacting? Reacting is when stressful situations (such as behaviours which challenge) trigger our physical, emotional cognitive and behavioural reactions to stress. This can make a difficult situation worse Responding is when during a stressful situation (such as experiencing behaviours which challenge), we use mindfulness to create strategies we may have learnt in our training to deal with the situation in a positive, professional and respectful way.

Responding Using mindfulness allows us to exert control over ourselves and influence the sequence of events at those very moments when we are most likely to react on automatic pilot. Before, we would have plunged into the fight or flight reaction - hyperarousal and possibly made a very difficult situation worse.

Responding rather than reacting External and Internal Stress Events Possible Stress reaction Mindfulness based response Perception Appraisal Fight and Flight 12

A Mindfulness based response Appraisal of thoughts, feelings and perceived threats Possible arousal, but also an awareness of the body: muscle tension, breathing, awareness of the full context of emotion and challenge Using training fully is seeing new options Quicker recovery of mental and physical equilibrium 13

Relevant research The use of mindfulness with people with ID and carers: systematic reviews (Chapman, Hare, Caton, Donalds, McInnis & Mitchell 2013, Hwang et al 2013a 2013b) Research published since these systematic reviews (Brooker et al 2013, Chapman & Mitchell 2013, Miodrag et al 2013, Singh et al 2013, Idusohan-Moizer et al 2013) Research looking at ACT and DBT or with lifestyle change components have been excluded

Does mindfulness work in ID? 11 studies exploring the use of mindfulness with people with ID 3 studies exploring the use of mindfulness with staff 2 studies exploring the use of mindfulness with family

Mindfulness interventions for people with ID Soles of the Feet - teaches people to divert attention to an emotionally neutral part of the body if they experience emotionally arousing thoughts, events or situations (Singh et al 2003 - 2013; Idusohan-Moizer et al, 2013) Mindful Observation of Thoughts – visualising and observing thoughts as clouds passing through awareness (Singh et al 2011b) Mindfulness programmes – participation, observation and description exercises to promote non-judgemental attitudes and acceptance, awareness of surroundings and thoughts and breathing (Chilvers et al 2011); MBCT programme (Idusohan-Moizer et al, 2013)

Yes it works! Key findings – people with ID (1) All studies found improvements over medium-long term: Physical and verbal aggression (Singh et al 2003, 2007a, 2008b, 2013, Adkins et al 2010, Chilvers et al 2011, Singh et al 2011c) Increases in self control (Singh et al 2003, 2008b), compassion towards self and others (Idusohan-Mozer et al 2013) Improvements in psychological wellbeing, anxiety and depression (Adkins et al 2010; Idusohan-Mozer et al 2013; Miodrag et al 2013) Reductions in inappropriate sexual arousal (Singh et al 2011b) Physiological changes – declines in cortisol and sAA levels (Miodrag et al 2013)

Key findings – people with ID (2) As a result this has led to reductions in: interventions such as physical restraints and seclusion (Singh et al 2003, 2008b, Chilvers et al 2011) medication (Singh et al 2003, 2008b) staff and resident injuries & staff absences (Singh et al 2003, 2008b)

Key findings – people with ID (3) Value learning to control their own feelings rather than being told to calm down (Singh et al 2011b) Find mindfulness procedures difficult to understand if they cannot easily remember or visualise past events (Singh et al 2007) or understand abstract concepts and instructions (Singh et al 2011b) May drop out if they find content difficult to understand or do not like meditation practice. Amount of paper work, including diaries can be overwhelming (Idusohan-Moizer et al 2013) Vary in their ability to initiate mindfulness meditation without prompting (Adkins et al 2010) and to use it in their lives (Singh et al 2011c)

Key findings – people with ID (4) Role of carer support (Idusohan-Moizer et al 2013) Many positive reports of experiences of mindfulness training (Chapman & Mitchell 2013; Idusohan-Moizer et al 2013)

Findings – staff (1) Impact on people with ID Observed happiness of people with ID increased more when supported by the staff member trained in mindfulness (Singh et al 2004) Reductions in: Use of physical restraints (Singh et al 2009) Verbal redirections (Singh et al 2009) PRN medication Singh et al 2009) Incidents of physical and verbal aggression (Singh et al 2009) Peer injuries (Singh et al 2009)

Findings – staff (2) Impact on staff (Brooker et al 2013) Staff positively evaluated the programme Associated with significant increases in positive affect and mindfulness facet of observing Reductions in – extrinsic job dissatisfaction Decreases in: negative affect, perceived stress, anxiety and negative emotional symptoms. Enhanced awareness of signs and sources of stress Positive changes in behaviours and interactions with clients and colleagues Positive changes in self-care attitudes and behaviours

Findings – family members Reduction in child’s aggressive behaviours (Singh et al 2007) Improvements in interactions between child with learning disabilities and their siblings (Singh et al 2007) Improvements in mothers’ ratings of parental satisfaction, parental stress and mother-child interaction (Singh et al 2007) Parents need to be disciplined in meditation practices and exercises (Bazzano et al 2010)

Findings – family members Mindfulness training led to transformational change rather than rules or techniques to use, and a more holistic view of their child (Bazzano et al 2010) Parents responded in a calm, positive manner that pre-empted maladaptive behaviour and encouraged positive social behaviour by children (Bazzano et al 2010)

BUT Caution!… Study quality rated as weak Many studies by same research team Small sample sizes – single subject experimental design Few randomised controlled trials Generalisability to people with moderate and severe learning disabilities or from different cultural backgrounds Which components of mindfulness lead to long term change and how? Few U.K studies More clarity about which approach used needed

Contact Dr Erica McInnis erica.mcinnis@manchester.gov.uk Dr Dougal Hare dougal.hare@manchester.ac.uk Dr Melanie Chapman melanie.chapman@manchester.gov.uk Mr Dene Donalds dene@voxcommunityinterest.org

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