Early and continuing Rehabilitation: Understanding the emotional and social impact of stroke Understanding and assessing the impact of stroke and approaches to assist. Introduction and learning objectives • This session looks at an overview of the psychological, emotional, and social impact of stroke. • It is recommended for all core, MDT staff working across the stroke pathway. It links to the stroke specific competencies on the the Stroke Specific Skills and Competencies framework and includes: • Section 4: Immediate Care, specifically: 4.2.6, for all staff to “Demonstrate empathy and to provide support to the person and carers during the initial stages of the acute stroke experience”. • Section 5, Early and Continuing Rehabilitation: 5.1.17: Staff to be able to “Explain the psychological, emotional, and social impact of stroke and incorporate assessment and intervention of these factors in to rehabilitation”. • Section 5, 5.1.4: “Goal setting” Psychological presentations • This is the first of a module on psychological issues after stroke. • It focuses specifically on the impact of stroke and understanding a person’s experience and adjustment. Approaches to help a person are also presented, as is the need to identify and refer on people who are experiencing significant psychological issues. Presentations in this Module The presentations in the psychological module include: • • • • • • • • Mood screening Understanding low mood and depression problems after stroke Helping with low mood and depression after stroke Understanding people who experience anxiety problems after stroke Managing anxiety after stroke Anger Self esteem issues following stroke. Loss The impact of stroke • Stroke is often a sudden health event which impacts immediately on how people can function. People have little or no preparation for the dramatic effects that a stroke has on their lives. • People describe many reactions to the experience of having a stroke. Some will find it quite frightening, or bewildering. Some cannot remember the details of having a stroke, or being very ill, therefore these gaps in memory can be difficult in themselves. Some people have very vivid memories which may also trouble them. • Others may seem to cope better but are still obviously upset that they have suffered a stroke. The impact of stroke • Many people understandably find having the stroke, and being in hospital a challenge. They have to often deal with a complex set of tasks from the outset (being in hospital, taking in information, meeting new people), and sorting through feelings about what has, and is happening to them. This is in addition to the consequences of the stroke itself. • As staff we can help by supporting people through the difficulties and issues they are facing. This takes us to be person centred and to try and work out the impact of the stroke for each individual, including the: • Physical • Cognitive • Sensory • Perceptual • Behavioural • Psychological and emotional. Person centred care from the outset: our approach • Our support to understand the emotional impact of having a stroke and therefore helping a person to work through what has happened to them is crucial from the outset of having the stroke to the longer term. • The impression of the patient of how staff have cared for them after their stroke has an impact on their initial, and long term psychological response. Reflections of what helped/did not help stay with a person for a long time, therefore it is imperative that we all do our best to make the person feel understood and their needs met at all times. • Remember when you were last in hospital, or in a medical setting when you felt vulnerable and when you needed support, how your impressions of what care you received made an impression (either good or bad?). Making sense of peoples emotions through the stroke pathway • We therefore need to get to know each person, including how they are feeling. We try to work out what is important to them; trying to accommodate their needs and choices, their likes and dislikes. This enables people to feel understood and more empowered at what is a difficult time in their life. • It is important to acknowledge with patients that there will be an emotional response to having a stroke. We can “listen out” for the issues that people may be facing and help them through the emotional/adjustment process after stroke. People may have different feelings and challenges over various time frames after a stroke, as will their family members. • Therefore we are helping people understand the psychological impact of stroke, and providing them with support needed to work through this. Look at this quote from Linda about the immediate impact of stroke “ When I was in the hospital and it began to dawn in me what had happened to me I was trying to make out what was going to happen. I could not feel the left hand side of my body and could not move it. Everyone was telling me that things will improve, but you don’t know whether they are just saying that, or is it really going to get better? I was wondering how I was going to manage, and how I was going to be there for my daughters. It was scary. There’s no other words to describe it, just being afraid of what was ahead”. Exercise: what emotions and challenges may people experience at the acute, early rehabilitation in the longer term after stroke. Time phase following Stroke: Acute Early rehabilitation Continuing rehabilitation and in the longer term How may the person who has had a stroke be feeling? And what issues may they be facing? How may the family member for the person be feeling? And what issues may they be facing? Model of time phases and feelings after stroke Time phase following stroke How may the person who has had a stroke be feeling? Issues faced. How may the person who has had a stroke may be feeling? Issues faced. Acute Anxiety, disorientated, fear, embarrassed at asking for help, tearful. Worry, fear as to what will happen, tiredness. Early rehabilitation Effort at getting better, low. Trying to keep going but worried, down Continuing rehabilitation and in the longer term Struggle between hope for recovery and reality Role of a caregiver emerges Adjustment models • It is clear that people will have many feelings and challenges after stroke and these will vary from individual to individual and across the stroke journey. Some people for example feel instantly shocked, where others feel fine psychologically immediately after stroke but become low and anxious upon their return home. • Some authors 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, “emotionally processing” and making sense of the stroke. Within each stage people may have a number of feelings, thoughts, behaviours and physiological responses. Stage models of Adjustment Please note that not everyone will go through the stages in sequence, and some will stay in one stage for a long time, e.g. anger, or skip between stages. Explaining adjustment and individual reactions to stroke • We can explain to people that they may go through an emotional adjustment reaction as described. By doing this we may help to normalise the psychological reactions to stroke and the process of adjustment. • People often unconsciously focus on the loss that a stroke has presented them with, whilst at other times they may focus on getting on with restoring what they can in life. This process is like our minds considering or “working through” two sides of a coin: grieving the things we have lost, whilst re-building what we can. • We sometimes wonder why people react differently to stroke. This is likely to be a complex matter; the interaction of the stroke and the person themselves. This is explained in the following table. Adjustment can be influenced by the stroke person’s “make up” and the stroke itself Two examples • Let’s look at two people who experienced a left PACS, ostensibly with similar stroke symptoms. • “Beth” and “Alex”, both had stroke effects which included hemiparesis in the right side of their body and mild speech and language difficulties. • Taking Beth, prior to the stroke Beth spent a lot of time with her supportive family and had a number of friends. She enjoyed music, cooking and trips out with the family. She had always considered herself to have a good life and was reasonably optimistic and flexible in her approach to her life. Beth adjusted reasonably well to the stroke. Her family and friends remained very important to her and she resumed some hobbies. Naturally she was frustrated at times with her limitations caused by the stroke but accepted help (for example around cooking). She took every opportunity to get out! “Alex” • Alex had been a man who had always been independent. He had prided himself on educational achievement and had been proud of his abilities. He sometimes called himself a “perfectionist”. Alex retired some years ago and was waiting for his wife to retire before going travelling. Alex and his wife had one child who lived abroad. Alex and his wife described themselves as relatively self contained and although they had friends they didn’t spend a lot of time with them. • Alex struggled to come to terms with his stroke. He wanted a full recovery and found it hard to settle for less. He felt cheated that this had happened to him. His wife felt the same way. • This shows how two individuals can react differently to a stroke based upon their attributes as shown in the table. No one person is right or wrong, as we rarely can change our attributes. This simply helps us to understand and empathise with a persons reaction to their situation. Helping Approaches • The next section of the presentation looks at the skills we use to help people psychologically after a stroke. All staff can and should use these core skills and by using them we are helping the patients and their families throughout the stroke journey. • Specific techniques including listening skills, problem solving, activity scheduling and goal setting as recommended in a stepped care model for psychological issues following stroke are covered. A note on the use of our core psychological skills • The Accelerating Stroke Improvement (ASI) guidelines for assisting with psychological care, specify that the culture of stroke teams across the pathway needs to be a psychologically informed culture, and as such it should be recognized that staff (not just specialist mental health staff) should spend time with patients exploring and supporting the impact of the stroke, as a matter of their job. It is asserted that this should be seen as a valid use of time. • Also it states that “mental health needs should have equal status with physical health problems following stroke”. The Stepped care approach for providing psychological care in stroke: level 1 skills are approaches for all staff to use. Helping approaches 1. Use core counselling skills • Rogers (1957) outlined core counselling conditions, which were considered essential ingredients for a therapeutic relationship. These skills are still as relevant today and we use them to help a person feel understood after a stroke. They include: • Empathy - Empathy is the ability to “stand in the patient’s shoes” • Genuineness - To be real, natural and open • Warmth - Remaining open. Not showing defensiveness or blame the patient or others for situations/events. • Unconditional Positive Regard - Accepting and valuing the person, regardless of their background. Cconveying positive regard and respect for them. • Remember your non verbal behaviour is as important as what you say in your communication with others! Using these core skills, examples: • Warmth - Remaining open. Ask people how they are feeling and whether they have particular emotions or thoughts. For example you could say “some people feel quite worried after a stroke, is there anything that is worrying you?” or “Some people feel quite sad and down after a stroke, do you ever feel that way?”. • Empathy - Talk to people about the impact of a stroke and let them tell their “stroke story”. Work to understand their perspective and show true empathy whilst giving encouragement and some hope. Helping approaches 2: Problem solving • Once we are aware of the things that are important to a person we can begin to look at what may help them. Little things as well as big things can be addressed. For example a person not getting their hair done as usual in a morning may seem like a significant issue to them, as someone may feel like (s)he wants to avoid visitors as (s)he doesn’t “feel” (look) right. • Being on a ward can also be hard, therefore problem solving any activity that helps; being mindful of hobbies and attachments, and offering time off the ward when possible. All these things can help a person to have a better day and will make people more psychologically cared for. • Control and choice are key things that people need to regain as soon as possible following a stroke. This may be around small things such as where people eat their meals, to a patient wanting to take control of their medication. Problem solving exercise • With patients we can use problem solving templates to guide our interventions. This is described below. • Take a sheet of paper and write down the important issues or problems, brainstorm possible solutions and then pick one and try it. Remember if people feel down they are less likely to see solutions there fore more help may be required. Problem/ important Issues for the person Possible Solutions Best available solutionto try Helping Approaches 3: weekly therapy timetables and scheduling activity • Having achievable and meaningful goals each day and each week helps people to feel that they can achieve something and that their week has some predictability. This is particularly important once past the acute phase after stroke. • People can also plan around the sessions of rehabilitation, for example relatives and friends can plan their visits and can plan positive events in a day for an individual, for example taking them out, watching a favourite programme, having a special friend call. If there are volunteers on the ward this can help them organise their activities. • This model is adopted by services in the region such as in Newcastle where every stroke patient is scheduled their therapy on a weekly timetable. Feedback is very positive. Example of a weekly timetable Day/ Time AM 8-9 9-10 10-11 11-12 PM 1-2 2-3 3-4 Mon Tues Wed Thurs Fri Sat Sun Timetable for patient “Annie” Day/Time Monday Tuesday Wednesday Thursday 8-9am Dressing practice (with OT) Dressing practice Dressing practice Dressing practice 10-11am Speech therapy Physio session Speech therapy Crafts with volunteers 11-12 noon rest Film run by volunteers Dr ward round rest 1-2pm Physio session Speech therapy Physio session Physio session with family 2-3pm visitors Go out with family visitors Home visit Helping approaches 4: Goal setting: SMART goals • This links a little with problem solving and activity scheduling but asks the patient to take more control of setting goals. The SMART framework helps people to make goals more tangible and person centred, planning goals that are: • • • • • Specific Measurable Achievable Realistic Targeted • Remember SMART goals can help improve peoples’ mood, introducing the concept of mastery and pleasure in each day, and each week, based upon peoples needs and likes/dislikes. Helping approaches 5: Identification of Psychological problems in addition to adjustment to stroke • Our role as health professionals is to try and assist people to cope with the stroke and to find ways to help them. Most people will have some psychological reaction and in many instances this is normal and people will cope with the significant life event of stroke with support, although there will be ups and downs along the way. • Our role is also to assist with the identification of people who may be suffering more distressing psychological reactions such as clinical depression or anxiety which require identification and management as they so negatively impact upon people’s lives. • Research has suggested that early identification and alleviation of psychological distress is essential in order to prevent more serious psychological difficulties developing that can impact on recovery and overall outcome. If untreated, psychological disorders lead to higher levels of: • • • • • • Mortality Suicide Long term disability and institutionalisation Hospital readmission Higher utilisation of outpatient services Patient distress. • See House et al, (2001), Morris et al, (1993) Identifying difficulties • The range of psychological issues which can be experienced by our patients after stroke may include: • Depression (30% of patients will suffer from depression at some point post stroke 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. • Emotionalism • Adjustment disorder • Anger problems • Problems with social re-integration • Family problems. Management of difficulties • People who experience such psychological symptoms appreciate the identification and help offered to deal with the problem that is causing them distress. • Staff can sensitively inform people that these are common difficulties after stroke, and that the problems are amenable to intervention, with support available. • Levels of intervention (including referral on to a service) should be determined by the psychological problem faced. Health professionals such as psychologists, doctors, occupational therapists and nurses are there to assist in assessment and management of the problem. Community support groups can also be very helpful to people, as are informational resources. Summary • Psychological support should always be a priority in providing care after a stroke. Helping people to be able to express their feelings, thoughts, fears and frustrations following stroke can help them a lot. This includes acknowledgement of the physical limitations, the emotional and social impact of a stroke and considers the process of adjustment with the individual and family. • We are looking to understand and help each individual through a difficult time in their life. • Models help us to understand that people will go through feelings and challenges throughout the stroke journey. • Intervention approaches (core skills) are important to use, based on understanding the person and the impact of stroke. This can help us to plan goals and interventions to help them. • Inclusion of the family is also key: in order to support the person and also to help the family through the difficulties faced. A final word on the positive effect of psychological support “ Psychological support puts you back together again. The timing can’t be predicted…sometimes it’s when you come out into your real world after hospital or it may be two - or more – years later when you discover that you will not make a ‘full’ recovery…it’s about reinvention and finding direction”. Psychological support is provided by every member of the team at every encounter with the patient and their family.