SELF – MANAGEMENT IN STROKE

1. SELF – MANAGEMENT IN STROKE ELENA ADAMS Clinical Nurse - Stroke Services OPH

2. OPH Stroke Hope Jars Poster

3. SELF- MANAGEMENT: • Is recognised as an increasingly important concept in stroke rehabilitation programmes. Self management in stroke is defined as an ‘individual’s ability, in conjunction with family, community and the appropriate health care professionals to manage the symptoms, treatment, physical, psychosocial, cultural and spiritual consequences and inherent lifestyle changes required for living with stroke. • Self management support has been emphasised as a top priority for health and social care in most developed countries (Kings Fund 2013)

4. Stroke self management- the patient should be able to direct and arrange their own life after stroke by setting their own goals and taking ownership of decisions in rehabilitation process. • Self management can be big or small • Managing the small areas in life is very important

5. Unfortunately the hospital environment and culture itself (specifically the period of acute care)- is expecting the stroke survivor to be the passive recipient of care. • Choice of self management, It’s like the old Chinese proverb: ‘You can teach a man to fish or you give them a fish’.

6. It is empowering the stroke survivors to maximise their potential from within themselves, allowing them to be in the driving seat, the patient taking ownership for guiding their therapy.

7. Stroke is a major cause of chronic disability worldwide. A number of recent studies have highlighted that individuals can feel ill prepared to cope in the longer term and ‘abandoned‘ by services, particularly after the period of acute care and rehabilitation has been completed. • Self- management interventions have been recommended as a method of supporting individuals’ adjustment and coping with their chronic disease.

8. COMPLEXITY OF LIFE AFTER STROKE: • Biomedical • Psychological • Social

9. SELF – MANAGEMENTwhat its not… • Leaving people to get on with it 'on their own • Education and information (didactic methods don’t work.) • Teaching people to comply with advice (everyone learns differently) • Only for people with good health literacy • Time consuming (not if its integrated into care practices)

10. SELF – MANAGEMENTwhat is it? • Supporting stroke survivors to build the skills and behaviours needed to live with their long- term condition • Patient- cantered goals • Self- discovery & progression (don’t give them the solution to the problem straight away but give them the opportunity to come up with the solution)

11. Before Stroke

12. STROKE

13. RECOVERY

14. WHY SELF- MANAGEMENT? • It reduces dependency of patients • Increases TEAM confidence to discharge • Therapy more patient focused than ever • It consolidates the TEAM • Patients who get it – love it – as it keeps them in control of the therapy / rehabilitation

15. WHY SELF- MANAGEMENT? • It helps stroke survivors to gain the confidence to manage their own progress after stroke • Evidence shows that people feel more confident after stroke when they set targets and record their progress and achievements regularly • Because progress after stroke can be rapid and then more subtler- it’s important to reflect on the progress- regardless of how small it may seem

16. Research indicates self management support following strokeis rare- despite emerging evidence for impact on patient outcomes. • The promotion of a common approach to self management support across a stroke pathway requires collaboration between professionals. ‘therapists are called benign dictators who for some reason once they are qualified have this unerring belief that they are now the professionals who know everything and that from their professional standpoint they get to almost dictate to patients’. Reference: 'From dictatorship to a reluctant democracy- stroke therapists talking about self- management’ Informa 2014

17. IMPORTANT PARTS IN SELF- MANAGEMENT: • Self – discovery • Early experimentation • Accumulated life course skills (how the patient responded to problems before, how do they get better, what knowledge they have?) • Chronic disease as biographical disruption • Goals within a personal biography (find out from patient what their real goals are !)

18. WHAT IS NEEDED? • Knowledge • Encouragement • Hope • Supported decision making • Self- discovery • Power • Control of what’s practiced

19. It is distinct from patient education or skills training (Barlow et al, 2002; Jones and Riaizi, 2011) and from interventions to increase compliance with recommended treatments (Walker et al, 2003). • Stroke patients think about goals very differently from health professionals • Disability and rehabilitation an international- multidisciplinary journal 2014;36(12): 1020-1026.

20. ‘OLD HABITS DIE HARD’ • “Some rules are nothing but old habits that people are afraid to change.” ― Therese Anne Fowler • “Let go of your old tired habits and plant new habits in fertile soil.” ― Harley King • “Nothing so needs reforming as other people's habits.” ― Mark Twain • ‘Everyone needs to be trainable and receptive to training’ - Russell 1950

21. A Language of Stroke - Word Choices: NO WORDS • stroke survivor • experienced a stroke • brain injury • stroke deficits • challenges • a person with a disability • caregiver/care partner YES WORDS • stroke survivor • experienced a stroke • brain injury • stroke deficits • challenges • a person with a disability • caregiver/care partner

22. SELF- EFFICACY: • Self efficacy beliefs can determine how people feel, think, motivate themselves and behave with regards to their health. It forms a major basis of any decision to act and is defend as ‘the belief in one’s capabilities to organise and execute the courses of action required to produce given attainments’.

23. SELF MANAGEMENT/ SELF – EFFICACY EVIDENCE: • Behavioural interventions can influence functional independence (Kendall, 2007; Johnston 2007) • Self – efficacy to self- care associated with increased quality of life and improved mood (Robinson- Smith, 2000). • Self- efficacy associated with fatigue severity (Michael, 2006).

24. SELF MANAGEMENT/SELF – EFFICACY EVIDENCE: • Self- efficacy a key determinant to adherence to exercise (Bonetti, 2007). • Improvement in self- efficacy is associated with improved functional outcome (Jones, 2009) • Self- efficacy enhancing interventions can influence quality of life ( Robinson- Smith, 2003).

25. SELF – EFFICACY: WHAT IS IT? • IT’S A ‘CAN – DO JUDGEMENT • ‘A SENSE OF PERSONAL COMPETENCE • HOW CONFIDENT ARE YOU NOW THAT YOU CAN EG: dress and undress yourself, even when feeling tired?

26. ENHANCING SELF- EFFICACY: • MASTERY EXPERIENCE • VICARIOUS EXPERIENCES/ MODELING • PHYSIOLOGICAL/ INTERNAL FEEDBACK • SOCIAL PERSUASION/ INFORMATION FROM A CREDIBLE SOURCE

27. SELF EFFICACY CAN INFLUENCE CORE SELF- MANAGEMENT SKILLS….

28. KEY FACTORS INFLUENCING SELF- MANAGEMENT: • TRANSITION PHASES – what are the changes experienced by individuals after stroke? • PERSONAL BENCHMARKS – individuals have their own ways of measuring progress usually relates to valued personal activities. • SOCIAL SUPPORT/ CARER – are critical to successful self- management and may need support to know how to encourage goals and problem solving.

29. KEY FACTORS INFLUENCING SELF- MANAGEMENT: • TRANSITION PHASES – what are the changes experienced by individuals after stroke? • PERSONAL BENCHMARKS – individuals have their own ways of measuring progress usually relates to valued personal activities. • SOCIAL SUPPORT/ CARER – are critical to successful self- management and may need support to know how to encourage goals and problem solving.

30. THE BALANCE OF POWER: • Health professionals need to let stroke patients decide what they going to achieve before telling them what they should be working on. • ‘It’s hard to get the balance right between encouragement and taking over’ • Avoid becoming a ‘benign dictator’.

31. Setting the goal post • Experience shows that many stroke patients will want to set extremely ambitious goals that would push them to their highest level of performance.

32. WHY DO SELF-MANAGEMENT PROGRAMMES FAIL?

33. REFERENCES • Barlow J, Stuart J. ‘Self management interventions for people with chronic conditions in primary care’. Health education 2002; 61:365-78. • Jones, F,. Mandy A and Partridge, C (2009)’Self efficacy in individuals following a first time stroke: Clinical rehabilitation, 23,pp.522-533 • Kennedy, A Rodgers,A and Bower, P(2007). Support for self care for people with chronic disease. BMJ,335, P 968-970 • McKenna,S, Jones,F, Glenfield,P and Lennon, S (2013) Bridges self-management programme for people in the community. Internatonal Journal of Stroke 21 • Norris M, Kilbride C- Informa ‘ From dictatorship to a reluctant democracy: stroke therapists talking about self- management’. Disability and rehabilitation journal 2014; 36(1): 32-38