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This is not an Agored Cymru publication. It has been developed by colleagues from Cwm Taf University Health Board and is currently being hosted by Agored Cymru until a more suitable site becomes available. 1. 2. 3. 4. To be aware of the common emotional problems after a stroke To have an opportunity to reflect and discuss the personal experience of having a stroke To understand how to identify different emotional problems after a stroke To be aware of the emotional problems experiences by relatives The changes in an individual’s life and relationships after stroke usually follow a known process of adjustment (Alvarez, 1997) Shock Retreat, denial or disbelief Grief, mourning & depression Hostility & anger Adjustment Group discussion Imagine that: you wake up tomorrow and you have had a stroke, which means that: You cannot move your left arm and leg, and you cannot remember day-to-day events What would change in your life? What would you lose? How would you feel? Emotional Physical Cognitive Behavioural Social Vocational Sexual relationships Family relationships “Now here I was, a week later, unable to get out of bed. I have relived this moment a thousand times in a fruitless quest for some explanation – the moment when my life divided into ‘old’ and ‘new’” “ Literally overnight, I was changed from being someone who could order an expensive meal in a fashionable restaurant to being an incontinent carcass, quite unable to make any sense of my body… my limbs not responding.” Quotes from patients Patients often focus on their ‘old self’ and go over and over things they recall from the past and sometimes who they might have been without the stroke May be accompanied by lack of insight and decreased awareness of their current abilities and deficits Need to re-define identity and self-image Need to create a ‘new future’ Emotion focused: “I feel better by drinking” Problem solving: “I got advice” “I can use strategies” Wishful thinking: “If only I could get my old life back” Multifactorial: Physical/medical symptoms Cognitive impairment Emotional consequences Premorbid functioning Family and social environment/support All factors interact in a complex pattern!! Prevalence of depression following stroke is around 33% (Hackett, 2005) Location or severity of stroke has not been proved significant factor Diagnosis is a complex task Fluctuating course over time Negative impact of untreated depression on recovery “It is difficult not to be depressed when your life has been fundamentally changed for the worse” Anonymous Service User Depression is not an inevitable consequence of stroke and much can be done to help those who have a depressive episode (Kneebone and Dunmore, 2000) Clinical guidelines indicate the need to be alert to the possibility of depression, with strong research evidence (Gresham et al. 1995) 40% anxious 12 months post stroke 10% of stroke patients show post-traumatic anxiety in response to their stroke event and aftermath – Generalised anxiety – Phobias – Panic - Obsessive and compulsive symptoms Uncontrolled crying or laughing not apparently connected to external stimuli Changes in arousal (flat, or agitated and unsettled) Attributed to damage caused by stroke; or Mood disorder; or Adjustment reaction to having a stroke “I cried a lot in hospital. Sometimes the tears were slow and weepy; at others, uncontrolled and desperate. I could cry for any reason and none” Stroke patient Traumatic event Away from security of familiar home environment, family, friends Will meet many different health professionals May be unable to remember faces, names, roles Unfamiliar language, jargon Unfamiliar people Little or no privacy or peace Exercise 2 The Experience Of Being In Hospital How would you feel if….. Someone approaches you in the street and starts speaking to you in a foreign language. You tell them that you don’t understand, but they keep on repeating themselves. • You are feeling really angry/frustrated about something, but nobody around you will take your grievance seriously and they keep telling you that everything is fine • You are asleep in a chair at home when suddenly you are woken up by a person you have never seen before trying to undress you. • You are trying to get dressed but it seems that someone has stitched up the sleeves of your jumper, removed some buttons from your jacket and hidden your shoes Screens should be carried out early on, and repeated if there are significant symptoms Typical routine assessment E.g. HADS – Administered by nurses, medics, OT, PT, SALT Alternative screening for people with aphasia – DISCs, SADQ-(H) Mood screening is responsibility of whole MDT Techniques for managing anxiety symptoms/ stress Individual counselling/therapy/CBT Emotional adjustment - telling your story Stroke Adjustment Groups Based on models of loss, grieving & coping Psychology led, but MDT input Is the stress different for families coping with a relative who has physical disabilities? Similar – loss, family disruption, dependence and practical problems Studies show that carers find it more difficult to understand and cope with non-physical consequences, such as personality change and mood disorders Feelings of confusion Depression Anxiety Guilt Isolation In the acute - onset is recent and family members may be feeling overwhelmed and in crisis “...the entire family unit are progressing through a mourning process. Since the person with the disability has survived as a new and different individual, the ritual is incomplete. The people involved are mourning abilities and qualities of a person, while adjusting to a person who behaves differently.” (Leber & Jenkins, 1996) Extent of the disability /dependence Cognitive/personality challenges poorer adjustment than physical Coping styles of family members Quality of the pre-morbid relationship – unresolved issues? Network of relationships (subsystems) that exist within the family Family values and cultures Need to be multi-dimensional: Education Family intervention Direct psychotherapy for a family member(s) Referral to Stroke Association – support group or other community resources Just listening and trying to understand the family’s experience!! It is difficult to separate cognitive, emotional, social and functional aspects of stroke Support for patients and carers/families with all aspects is critical for maximising the best longterm psychosocial outcomes Always keep in mind the non-physical ‘invisible’ impairments!! Reading: ◦ ‘Psychological Management of Stroke’ by Lincoln, Kneebone, Macniven and Morris, 2012 ◦ ‘Psychological care after stroke: Improving stroke service services for people with cognitive and mood disorders’ www.improvement.nhs.uk/stroke Development away from purely ‘medical model’ of patients having things ‘done to them’, patient being passive Means that the person becomes empowered to make changes and impacting on recovery and rehabilitation The person’s wishes and viewpoints are central to the process of rehabilitation- their goals! What’s the point? We don’t have time! Active engagement in rehabilitation is wellestablished as one of the best predictors of positive physical and psychological adjustment Good evidence base!! Motivation to engage! Welsh Assembly Government Goal planning to start at the acute stage Acute and Rehabilitation Care Bundles Intelligent Targets ‘ the identification of, and agreement on, a target which the patient, therapist or team will work towards a specified period of time’ ◦ Royal College of Physicians Clinical Guidelines for Stroke , 2005 Collaborative and person centred practice (QR1 in NSF for Long Term Conditions) Increases motivation and structure for patient and therapist Helps communication (make it visual and concrete) Tool for tracking and communicating change Use to evaluate and demonstrate effectiveness of rehabilitation S pecific M easurable A chievable R ealistic T ime limited Ask the question during goal planning meeting : ◦ What are the things that are important to you? What would you like to achieve in rehabilitation? What would you like to be able to do when you go home? ◦ If the patient can’t be present/its not appropriate involve family members! Break down to simple steps: ◦ ‘Go to corner shop’ 1. 2. 3. Build up stamina in gym for 10 mins Walk 100m down corridor/ street Walk 200m down corridor/ street with short rest Distinguish MDTs actions from patient’s goal! E.g. prescribe medication, order a zimmer frame Keep it simple! Better to do a couple of goals well than five half done Record goals: visually and in simple language Review progress Use process and pathway in place in the service Its is a skill you can develop – keep practising 1. 2. 3. 4. 5. Pair up with your neighbour Have a goal planning meeting What would you like to change? Discuss how to achieve and break it down Set a time scale Record the goal and the sub goals – Make it visual! To reach their maximum level of independence To maximise their quality of life and sense of control Provides more successful outcomes, reduces disability and increases quality of life Starting process at the acute stage - patients and families become an integral part of the process Empowerment/collaboration – increasing patient control improves psychological well-being Recognised as a core procedure of rehabilitation Provides audit information Measures change Empowering patients and families earlier in the process of recovery to understand the concept of doing things ‘for oneself’ (rehabilitation) versus ‘doing for’ (traditional medical model) Improves co-ordination and co-operation between all concerned Paper: ◦ Wade, 1999, Goal planning in stroke rehabilitation: How?, Topics in Stroke Rehabilitation, 6(2), 16-36