What do acute stroke patients see as important during early recovery ?

1. What do acute stroke patients see as important during early recovery ? Julie Adamson Speech Pathologist Manning Rural Referral Hospital Hunter New England LHD NSW Rural Health and Research Congress October 2013

2. Background • Stroke is a leading cause of death and disability in Australia1,2 • Approximately 60,000 new and recurrent strokes/year3 • Large body of research and high level evidence for treatment and management of patients with stroke4 • There is a need to better understand our patients and their perspectives • Little research on motivation and recovery expectations of patients, again most of which has been in rehabilitation setting5,6 • National Stroke Foundation Guidelines allow clinicians to clearly understand what is important in providing clinical acute care which will assist our patients to make the best recovery4 • But what do patients with stroke see as important in this early stage and what are their expectations for recovery?

3. Study - Research Question and Aims • What influences and determines patient attitude, motivation and expectations towards recovery after stroke in acute care? Objectives guiding this study were: • Describe stroke patients’ attitudes, motivation and expectations toward recovery and identify what factors determine and influence these; • Determine factors precipitating and contributing to motivation, attitude and expectation for recovery; • Explore stroke patients’ beliefs about what will and does help them to recover and what role they believe they and others play in their recovery

4. Study Design • Qualitative Grounded Theory design • Grounded Theory is used to explain social processes and factors which influence these in particular situations7-9 • This pilot study sought to explain the process of stroke recovery in terms of patients’ motivation and beliefs about their recovery and the circumstances that influence this within the acute hospital environment. • A theoretical model to conceptualize patient motivation, attitudes and expectations towards stroke recovery was the objective of the data analysis.

5. Study design • Participants: Adult Inpatients admitted to Manning Rural Referral Hospital (MRRH) with a stroke July 2012 – March 2013. • Inclusion criteria: able to give informed consent and participate in a face-to-face interview within in the first ten days of their stroke. • Exclusion criteria: moderate to severe communication or cognitive deficits. • Participants screened for depression but this was not an exclusion. • Participants were not excluded if they had experienced a previous stroke.

6. Study Design • Participants gave an understanding of their personal attitudes and beliefs about their motivation and recovery from stroke through one to one, semi-structured interviews • 11 Participants aged 44-89; 7 Male 4 Female; 8 living with partners, 2 living alone, one living with child; variety of stroke types/presentations/severity and prognosis. • Purposive and theoretical sampling strategies were used in data collection • Data collection and analysis occurred simultaneously • Sample size was determined by thematic saturation • Analysis in accordance with Grounded Theory using 3 levels of coding – open, primary and axial

7. Study Findings - Overview • 4 personal beliefs underpinning motivation, attitude and expectations towards recovery in the acute stage after stroke: • Life perspective, • Health and Independence • Fulfilment • Hope • 4 experiences during the acute hospital admission which could reinforce or modify these beliefs and their impact on motivation, attitude and expectations towards recovery. • Healthcare Interactions • Family Interactions • Experience of dependence • Experiencing recovery

8. Study Findings This presentation will focus on the aspects of the study findings that describe what patients with acute stroke considered to be important in that early stage of their recovery.

9. Positive and Determined Attitude • Participants described having a positive and determined attitude was important in meeting the challenge of recovery. • Enabling responsibility for recovery and facilitating working on recovery. “We’re put on this earth to do what we can and while we can and you put your best foot forward with it, whether its worn out or not, to do something.” P4 “I’ve always had a positive attitude more than anything, you know?… I know that it will get better. And I won’t stop working at it ‘til I get the best I possibly can” P2 “I think it’s meant to be me, I’m the one that’s got to get better” P8 “I think just determination, keep on going. It’s the thought you’ll get better how long it takes unfortunately is something that will differ with every person but its whether you’re trying, and whether or not you genuinely want to do it.”P5

10. Health and Independence • Having good health and being independent before the stroke was believed to be important in recovery by presenting fewer barriers to recovery. • Strengthened desire to return to independence, driving active recovery and motivation. • Independence was participants perception. Some dependence on others -framed as reciprocity or teamwork, and changing frame of reference. “I’m still relatively fit and I’m not over weight or anything like that, that I’m going to have to struggle with so. Normal, normal health and that’s been good.” P2 “Oh very independent. Never had a broken bone or anything like that in my life. Never been disabled physically only by the heart attacks, that’s the only thing that’s ah three or four weeks I was driving the car again and all that” P4 “Oh, that it, it doesn’t seem to worry her because she has done little things for me before... Yes, it’ll soon balance out because she’s, she’s not, she’s got a problem herself so together we can just fit them both in’ P2 ‘Well we’ve always helped each other, you know?” P10

11. Hope • Hope – needed to reinforce and maintain positive attitude and motivation to work on recovery. • Participants often expressed hope by stating the belief that they would get better when they left the acute care setting. • Hope offers a forward focus which allows some cognitive avoidance but also cultivates a desire that the current situation will not persist by conceptualising the future. “Just don’t lose hope. Don’t lose any hope at all. If things go wrong, just keep on trying.” P3 ‘Oh I only hope I can just walk, if I go to (Rehabilitation Hospital) they will get me going.” P7 “I don’t expect (rehabilitation hospital name) to fix me in two days, it could take a good week, perhaps a week and a half” P5 “Well just to go home (will help recovery) Oh yes, I’m sure it will” P9

12. Health Care Professionals • Encouragement by health care staff was identified by participants as very important in their recovery. • Reinforces motivation, hope and desire to work on recovery. • The importance health care staff was expressed in terms of encouragement, physical assistance and caring attitude rather than in terms of providing therapy and rehabilitation by participants with a motivated and positive attitude. “I think the people that look after you would be the main thing. They sort of encourage you a fair bit…they are quite encouraging, all the staff, young nurses, doctors when they come.” P3 “I like to hear that. I love to hear it. I don’t know, it just encourages me to do a bit more. To try harder. But if somebody comes over all negative then oh well I won’t worry about doing it. Yeah, if they try to encourage you a bit, even if it’s an untruth, but, ah, it builds up your ego and you think ‘well I can do that a bit harder” P5 “Well they help you mentally because their approach. And ah, and they always join the two together you know the physical exercises and that but they always bring that into it with a bit of a joke or something, which helps you.” P10 “yes it comes back to the staff. The staff have been marvellous and my family who have all been visiting, talking you know trying to make conversation, which is a great help because you respond.” P4

13. Health Care Professionals • Patients who described low motivation and a less positive expectation of recovery described not having their needs met by their health care professionals and a viewpoint that they were not ‘doing much’ while in the acute hospital as they were not getting the amount of intervention they felt they needed. • These participants described a more passive role in their recovery. “I’ve, I’ve just been sitting here on the bed most of the time. People have come in and asked me questions about my health and the like, examined me but other than that, not a whole lot. … I’ve been told that I will have somebody to talk to but I’m apparently going home today so I can’t see much hope of that happening. …But if its not going to happen, don’t tell me it will.” P6 “Um the man came yesterday. He was a physiotherapist and gave me some exercises to do. I really thought they were helping, they worked well. I asked him if he’d be back today and he said yes, but he hasn’t been today so far and I feel that’s one thing that’s really needed…. I’ve had things left here, yes but it’s,. ...not imagination, you must help yourself, but knowing and doing is two different things.” P1

14. Health Care Professionals • Participants considered that it was important to accept assistance from health care professionals to carry out daily activities such as eatingand showering. • However, they felt it important that this was done so that they could carry out some aspects of these tasks themselves. • This reinforced their desire for independence rather than being ‘disabling’. “Well they support you while you are unable to support yourself. And that’s a big thing, to know that they’re there and when you want that assistance they’ll give it to you and ah that might go on for a week or three or four days and you start to get your senses about you and you ah start to do it for yourself and have confidence in doing it for yourself.” P4 “See I had a shower yesterday and one today, I’ve others as well but there’s always been someone to help me. Anyway she sat me down and I said go I’ll do without you and I did everything… the only part I wanted help, I wanted it, was just the towel, just to put it at the back” P4

15. Health Care Professionals • Participants often held on to statements made by health care staff as important which may have positive or negative implications in their recovery and care. “Oh well full recovery would be nice but I’ve already been told that isn’t likely to happen with the eyes….If it doesn’t improve, you know if it doesn’t start improving then it’s probably not going to. That’s what I’ve been told so far.” P5 “One young lady doctor) said it was in my head…I told her it wasn’t. I wasn’t very nice to her, because I thought she thought I was a bit silly. So I wasn’t nice and I’m not like that. (crying).” P9 “Take it steady, and slow, well that’s the same thing, and just sit down, read books as Dr (physician’s name) says.” P8 “He said you should, you should recover.” P3

16. Family and Rest • Participants emphasised that family interactions and being able to spend time with loved ones was very important in their in recovery, providing them with encouragement, reassurance, support and purpose. • Family interactions helped normalise their situation as they were able to begin to resume their role within the family and visits provided a way of remaining in touch with the aspects of their life outside the hospital. “I’m doing it for the interest of my family and by doing that of an interest to the family the family take an interest in you then. And they will help you in every possible way they can they’ll spend more time doing things around you“ P4 “You feel down in the dumps a bit and then you see P. that’s my son or R who’smy eldest son, they walk in with two of their boys and you know it gives you a lift. They give me a pat on the back and say something jovial to me which helps…They’ve shown how they thought of me and helped in a different sort of a way since I’ve been sick” P10 • Participants also spoke about feeling that rest and pacing themselves was important in recovery. This may come from health beliefs as well as needing time to process the stroke. However they were still active participants in their recovery.

17. Implications • Health care professionals need to understand patients’ perspectives and what is important to them in order to know how to fully engage them in early rehabilitation and to maintain or strengthen patients’ motivation for rehabilitation and recovery. • Be aware that what we say as health professionals may have as much of an impact on the patient than what we do. How we interact with patients during this stage is an important part of recovery. • Do health professionals need to moderate their approach to rehabilitation in the first days after stroke to allow the patient to have more time with family? Do we need to engage the family more in rehabilitation in acute care utilising their importance to the patient in facilitating rehabilitation (and will this have a positive impact on motivation and recovery)? • Are there things we can do and say as health professionals that turn our patients motivation and engagement in rehabilitation and recovery ‘on and off’? • When hope is important to patients and they hold hope and expectations that they will ‘recover’ when they leave the acute hospital, what happens if they do not recover as much as they expected and what role can we play acute care to prepare patients for the process of recovery?

18. Limitations • Limitations of setting and context – rural referral hospital with participants in co-located acute stroke unit or general ward. Responses may be different in a comprehensive stroke unit. • Patients with significant aphasia or depression were not interviewed and maybe able to add insights to give greater understanding. • Whilst purposive sampling was used – participant selection was limited by stroke presentations during the time available for data collection and as such a less diverse sample.

19. References 1. Katzenellenbogen JM, Begg S, Somerford P, Andreson CS, Semmens JB, Codde JP, Vos T. Disability burden due to stroke in Western Australian: new insights from linked data sources. Int J Stroke. 2010;5(4):269–277.  2. Cadilhac DA, Carter R, Thrift AG, Dewey HM. Estimating the long-term costs of ischemic and hemorrhagic stroke for Australia. Stroke. 2009;40(3):915–921. 3. AIHW: Senes S. How we manage stroke in Australia. Canberra: Australian Institute of Health and Welfare, 2006. Report No.: AIHW cat. No. CVD31. 4. National Stroke Foundation. Clinical Guidelines for Stroke Management 2010. Melbourne: National Stroke Foundation; 2010. 5. Maclean N, Pound P. A critical review of the concept of patient motivation in the literature on physical rehabilitation. Soc Sci Med. 2000;50:495-506. 6. Maclean N, Pound P, Wolfe C, Rudd A. Qualitative analysis of stroke patients’ motivation for rehabilitation. BMJ. 2000;321:1051-1054. 7. Strauss A, Corbin J. Grounded theory methodology: An overview. In: Denzin N, Lincoln Y (Eds.), Strategies of qualitative inquiry. California: Sage; 2000. 8. Charmaz K. Constructing grounded theory: A practical guide through qualitative analysis London: Sage; 2006. 9. Patton MQ. Qualitative research & evaluation methods. 3rd ed. California: Sage; 2002. .

20. Acknowledgements HETI and the Rural Research Capacity Building Program Emma Webster and David Schmidt - HETI Jennifer White – Hunter Stroke Services Jennifer Rudd – Stroke Coordinator MRRH Jennie Pomplun, Patricia Fredrickson, Louise Jordan, Isobel Hubbard, Dr. Tony O’Brien and fellow RRCBP candidates – for input and encouragement in the project.