Psychological screening for people with and without communication difficulties after stroke

1. Psychological screening for people with and without communication difficulties after stroke Fiona Stewart, Speech and Language Therapist, City Hospitals Sunderland NHS Foundation Trust Kirsty Bramley, Speech and Language Therapist, Northumbria Healthcare NHS Foundation Trust Debby Townson, Consultant Clinical Psychologist, NTW, Newcastle Stroke Services

2. Aims of the workshop • To recap on national guidelines for screening patients for issues of mood after experiencing a stroke. • To explore why we screen and assess mood after a stroke: the functions and purpose of screening tool & assessments. • To explore mood screening measures and assessment techniques for people with and without communication problems after stroke.

3. Most people will have some psychological issues after a stroke Stroke is a sudden event that takes people out of their prior health status and functioning without warning. It is a frightening event and people have a number of challenges to face, including being in hospital and being away from their environment, not being with important people in their life and being out of their usual routines. This is in addition to the consequences of the stroke itself.

4. Lots to cope with, a model of “normal” adjustment: Stage Models of Adjustment: One way of looking at coming to terms with a stroke is to liken the emotional adjustment to stroke as being similar to the process of grieving following bereavement. Wilkinson (1995) suggested that patients may go through a number of stages, which include:

5. Individual differences in adjustment to stroke: Twining (1988) suggests the emotional adjustment to stroke is considered as the interaction between the person and the handicaps faced after stroke.

6. Don’t forget the range of psychological problems after stroke • Depression • Anxiety/ Worry • Emotionalism • Problems with adjustment • Fatigue • Difficulties in coping • Apathy • Anger • Problems with social re-integration • RCP National Clinical Guidelines for Stroke, 2008 (and 2012).

7. Depression and Anxiety: common problems after stroke: • What are the prevalence figures for: • Depression? • 30% of patients will suffer from depression at some point post stroke (British Psychological Society 2010)) and a significant proportion of these remain potentially undiagnosed or inadequately treated (Hackett et al, 2005). • Anxiety? • Rates for anxiety following stroke have been estimated to be between 22-28% in the acute stage and at follow-up, that means one in four patients are anxious.

8. Themes behind each disorder • Deb to add

9. Untreated psychological disorders lead to higher levels of: • Mortality • Suicide • Long term disability and institutionalisation • Hospital readmission • Higher utilisation of outpatient services • Patient distress.

10. National guidelines on screening • National Stroke Strategy (2007) Central importance of a psychological pathway of rehabilitation; • RCP National Clinical Guidelines for Stroke (2009) Patients with stroke should be routinely screened for depression anxiety and cognition • NICE Quality Standard for Stroke (2010) Screen within 6 weeks of diagnosis … to identify mood disturbance and cognitive impairment • NICE Quality Standard for Depression in Adults (2011) People with depression should receive appropriate psychosocial interventions or collaborative care accordingto the degree of depression, associated chronic health problems and its impact on function • NICE Quality Standards for Long term conditions (2009) (http://www.nice.org.uk/nicemedia/live/12327/45865/45865.pdf)

11. NHS Stroke Improvement guidance http://www.improvement.nhs.uk/stroke/Psychologicalcareafterstroke/tabid/177/Default.aspx

12. Interventions in the stepped care model Level 1: Assess all admitted patients (rating scale); symptomatic patients take a detailed interview (confirm symptoms; possible causes; history; impact; treatment preferences);

13. Functions of the screening process. What screening is: • identify those with a potential problem, e.g. using screening measures, often carried out by staff such as nurses, OT’s; • gain an understanding of the nature of the mood problem in order to plan treatment. For this we need to determine the severity of the problem, how intrusive (distressing) it is to the individual or how it is affecting their functioning (or motivation); • monitor change in mood over time; • develop intervention plans to assist change. • The RCP further suggests that we should keep the patient’s mood under review. When assessing mood, we aim to:

14. Review of mood over the adjustment process • Accelerated Stroke Improvement Programme guidelines recognises the need to assess a patient at 4 potential time points: • One month after stroke or just before discharge, or at six week follow-up; • 3 months after stroke; • 6 months after stroke when much physical and social recovery has stabilised and likely longer-term problems can be assessed; • annual reviews to identify those with long-term problems • If there is cause for concern at any other time reassessment and treatment is recommended.

15. Screening is not a: • Tick box approach; • A one off exercise; • Taking a measure of one day only: bear in mind that the patient is asked, and staff asked to comment upon symptoms in the last 2 weeks therefore it is important that it is done by someone who knows the person; • Something that can be ignored if people have aphasia as there are plenty of tools available and the needs of this group with challenges faced after stroke. • Screening alone does not improve outcome! Some help is needed to get better.

16. Screening tools for depression after stroke: Burton 2011

17. Tools for people without communication problems: Burton 2011

18. Examples of Scales • Depression (and Anxiety) scale for someone who doesn’t have a language problem. • TheHospital Anxiety and Depression Scale–Anxiety(HADS-D) which acts asa screening measure for depression in those without significant cognitive or communication disability. Seven of the items relate to depression (HAD-D) and seven relate to anxiety (HAD-A). • Each item on the questionnaire is scored from 0-3 and this means that a person can score between 0 and 21 for either anxiety or depression. Bjelland et al (2002) through a systematic review of a large number of studies identified a cut-off point of 8/21 for anxiety or depression. • Other detailed assessment scales can be helpful when a person is identified to have depression or anxiety. These can gather more information about the symptoms experienced. A popular measure is the Beck Depression Inventory (BDI) or Beck Anxiety Inventory. See Lincoln, Morris and Kneebone 2011 for a thorough review.

19. Use the information in the questions to inform management plans For example: • “I cannot enjoy the hobbies I used to enjoy” • For most people after a stroke this is true. We can explore this though by asking what the person can still do and asking relatives to try to bring things in, or do things with people when they come in etc.

20. Yale questions Two questions: • 1. Prior to your stroke, have you ever felt sad or depressed? (Yes/No) • 2. Since your stroke, have you been feeling sad or depressed? • NB: a further clinical assessment should follow if these two are affirmative in line with national guidance. • Also be mindful of the range of psychological problems we may face: I might not be depressed but I may be very stressed, or anxious, or angry.

21. Tools for people with communication problems: Burton 2011

22. If the patient points to this circle (a score of 2), or any higher- this would indicate low mood. Depression measures for people with language problems: self report • Depression Intensity Scale Circles (DISCS)

23. Depression measures for people with language problems: Instructions • The DISCS is a mood screening tool designed for use with patients that have suffered a brain injury, for example after stroke. • The tool is displayed on a laminated card (you can find one of these in the toolkit) and the patient is asked to point to each of the circles individually to ensure that they are able to see them all. If the patient accomplishes this, you can then go on to explain what the different circles mean. The circles basically show how depressed an individual is, from no depression at the bottom of the scale, to depression which is as bad as it can possibly be at the top of the scale.

24. Depression measures for people with mild language problems: instructions cont • Point to each individual circle in ascending order (from no depression to most severe depression) and explain that as you go from the bottom to the top, the depression (or sadness) is becoming more and more severe. Finally, ask the patient which of the circles shows how depressed they feel today? • The DISCS can be administered by any healthcare professional and the scoring of the tool is as straightforward as the administration of it. The bottom circle is scored as 0 (no depression) and other circles are scored from 1-5, with 5 being the most severe depression. If the patient points to this circle (a score of 2), or any higher- this would indicate low mood

25. Depression measures for people with language problems: observation measure The SADQ-H10 requires the rater to score the patient on 10 different behaviours, shown below: 1. Did he/she have weeping spells this week? Every day On 4-6 days On 1-4 days Not at all 2. Did he/she have restless disturbed sleep this week? Every day On 4-6 days On 1-4 days Not at all 3. Did he/she avoid eye contact when you spoke to him/her? Every day On 4-6 day On 1-4 days Not at all 4. Did he/she burst into tears this week? Every day On 4-6 days On 1-4 days Not at all 5. Did he/she complain of aches and pains this week? Every day On 4-6 days On 1-4 days Not at all

26. Depression measures for people with language problems: observation measure cont 6. Did he/she get angry this week? Every day On 4-6 days On 1-4 days Not at all 7. Did he/she refuse to participate in social activities this week? Every day On 4-6 days On 1-4 days Not at all 8. Was he/she restless and fidgety this week? Every day On 4-6 days On 1-4 days Not at all 9. Did he/she sit without doing anything this week? Every day On 4-6 days On 1-4 days Not at all • Did he/she keep him/herself occupied during the day? Every day On 4-6 days On 1-4 days Not at all

27. Depression measures for people with language problems: observation measure scoring • For questions 1-9; “Every day” receives a score of 3, “On 4-6 days” receives a score of 2, “On 1-4 days” receives a score of 1 and “Not at all” receives a score of 0. On the final question, number 10, this scoring system is reversed so that “Not at all” receives a score of 3, and “Every day” receives a score of 0. • The total score is dependent on the frequency of the behaviours (how many days within the past week the behaviour has been exhibited). If an individual scores 6 or more points out of 10, for two consecutive weeks, this would indicate a problem with mood. As a score of 6+ needs to be obtained in consecutive weeks to indicate a mood problem, it is important that the SADQ -H10 is completed on a weekly basis. • As with all mood screening tools, as well as looking at the score that a patient has received, you should also use your judgement and knowledge of that patient to guide your assessment and the strategies that you use with them. Strategies such as relaxation CDs or increasing activities/interactions can be beneficial.

28. Screening for anxiety for those with communication problems Table: Behavioral Outcomes of Anxiety (BOA). Kneebone et al 2012

29. Which tool to use? • Quality standard: Every service should have a protocol across the stroke pathway (see examples). • Has the tool been validated for use with patients with stroke? Sensitive and specific? • How long does it take to administer and score the tool? • What funds are required to purchase the tool? Initial purchase? Cost of record forms? • What level of training is required to administer the tool? • Which tools do other local services use? ESD, IAPT, GPs • Is the tool acceptable and relevant to patients?

30. Good practice: • Privacy to talk. • Explain the reasons for assessment and gain consent. • Leave enough time to properly explore the issues, to have an honest conversation about how someone may truly be feeling. • Remember your core listening and communication (warmth, genuineness and empathy) when asking a patient about they are feeling. • Use your clinical judgement to supplement the results.

31. Good questions: the personal perspective: what is causing the person distress? • If the person can express their opinions it is always a good idea to ask the person how they are feeling, and what is going on for them. That often gives us a bit of an idea of possible problems. You may aIso want to speak tofamily members about what is going on and what helps a person. Asking specific questions to identify how someone is feeling can uncover what they are thinking. • “You/they just looked really worried/down/angry. Can you tell me what went through your mind?” • “Are there any times when you/they particularly anxious or down and when you experience these symptoms?” • “Does anything help?”

32. Looking for patterns of symptoms, techniques for people with aphasia • The following section will look at:

33. Understanding aphasia- medical model • Severity • Mild/ moderate/ severe • Receptive and/ or expressive • Eg George has mild receptive dysphasia with severe word retrieval difficulties • Patterns of deficits and retained skills • Eg Written word finding is preserved. Sometimes George is able to write a recognisable key word • Communication strategy • Support verbal comprehension by reducing background noise, using short sentences, and signaling a change in topic. • Support expression by ensuring pen/paper available, and allowing plenty of time for George to write.

34. Understanding aphasia- person centred approach • Jo Bloggs has moderate receptive and severe expressive difficulties. He has severe word finding problems, but can indicate yes and know reliably. He uses drawing and gesture effectively, eg gesture for garage extension; can draw recognisable sausages versus chicken drumsticks. After months in residential care he now lives alone independently. He participated in a Rehab UK programme and now attends Community Integration groups.

35. Understanding aphasia- person centred approach Mrs Mop has just returned home from hospital. She has mild receptive difficulties and word finding problems. Friends tell her she is ‘amazing’. She has stopped attending church and lunch club because she can’t follow conversation and participate. She believes she will ‘never be the same again’. Which person has the more severe aphasia? Who is most likely to be depressed and how do we find that out?

36. TITLE TO BE ADDED • Supported conversation • PPPP Pen Paper Photos Pictures • Top tips for aphasia • It’s not rocket science!!

37. Good Practice in assessing mood in people with aphasia • Be prepared! (Girl guides) • SADQ- know the observations over past week • Communication assessment results and strategy from SLT • Cognitive impression or assessment (OT initial assessment/ SLT assessment results) • Pictures and scales- eg sleeplessness; embarrassment; depression • What makes it better pictures and scales- eg music; bath; TV • Top tips for aphasia

38. The Blue Peter conversation… • Here’s one I made earlier…

39. Beyond Screening...... Exploring someone's mood is important, consider replacing your therapy session with a session discussing mood, anxiety and their concerns and hopes for their future. This session will help inform you and other members of the team Stories are intentional, they are told with intent, that they will be listened to and acted upon The session will need to be supported by communication ramps

40. Supported ConversationIN Remember the top 10 tips for talking to PWA Getting the message IN: Speak naturally Use short sentences Have an expressive tone of voice Say things like “ I know you know” As you are talking: write down key words use gesture use pictures

41. Supported ConversationOUT To help the PWA get their message OUT: Ask questions that need a yes or no answer At the start these questions can be general then become more specific Concentrate on one thing at a time Offer single written words as a multiple choice if possible Say “can you show me” TIME

42. Supported conversationVERIFY Using the words written, pictures drawn and photos used: Reflect what the PWA’s message is Expand on what they might be trying to say Summarize This is how it might look

43. Workshop Groups of 3: 1 PWA and 2 listeners Folder contains some limited picture materials and a topic for you to explore The PWA is not allowed to speak, write or use their right hand Use the strategies we’ve described and get some information from the person with aphasia How was it from both perspectives? How accurate was the information you gained from the PWA? What helped the most? Would you do anything differently now?

44. Supported Conversation People with aphasia (PWA) are competent We must get the right information IN Help the PWA get their message OUT We then need to VERIFY that we have understood correctly. To help us do this we need a simple toolkit: Pen Paper Basic pictures

45. Using the measures well with all clients: Summary Screening informs treatment, by: • Prompting further assessment/monitoring; • Share the results with the patient/family as appropriate and with the rehab team, getting ideas from them as to what may help; • Discuss the effects of mood (and cognitive problems) on engagement with rehabilitation, possibly changing rehab goals for a while or where/how we deliver rehab; • Plan for safe discharge (e.g. suicide risk considered); • Develop pathways- What support is available locally? Who is doing what, when; • Give information as to how people can get back in touch or access services for mood related problems when needed. This bears in mind psychological needs are not defined in relation to time post stroke.

46. The Ambition for Psychological Care After Stroke: Summary • All stroke services should have a pathway and provide psychological care by asking patients, using screening tools and following national guidance; • People with stroke should experience a culture where psychological and physical issues are of equal importance (nb It needs to be acceptable for staff to spend time with patients, exploring and supporting the impact of the stroke). This should be acknowledge as a valid use of clinical time; • Skills development for the whole team needs to focus on understanding adjustment after stroke, identifying psychological difficulties and providing compassionate caring; • People with stroke and psychological disorders are managed in a service capable of identifying and managing their needs for as long as they need.

47. Further reading/information • Accelerated Stroke Improvement website: *add link • This includes information on screening, protocols for services in assessing mood. • Lincoln Kneebone 2012 book *add • Please add others

48. NECVN Stroke Competencies This session has covered an awareness of the following stroke specific competencies: • 1.1.1 Describe and demonstrate the components of effective communication e.g. listening skills, verbal and non-verbal skills, negotiation and influencing. • 1.1.10 Demonstrate rapport building, empathy and personalising communication for the individual during interactions with person/carer. • 5.1.1 Select and complete appropriate standardised and non-standardised clinical assessments within the parameters of own role.

49. NECVN Stroke Competencies continued • 5.1.2 Complete screening assessments for emotional difficulties, interpret the results and develop intervention plans with the MDT. • 5.1.3 Understand and interpret results of the assessments and feedback the results to the person, family and team. • 5.1.15 Identify need, seek advice and refer individuals for further specialist assessment.

50. Further information contained in your pack from this workshop: • Tips on communicating with people with aphasia • Tips on general communication with patients • Examples of mood protocol pathways • Ways to help a person after stroke For further information please contact: • Fiona Stewart *add • Kirsty Bramley *add • Debby Townson at debby.townson@ntw.nhs.uk