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Section 15
The Bereavement Model, Stroke and Rehabilitation
Part II

Question 15 | Test | Table of Contents

The Bereavement Model and Conflict Over Goals
When asked about ‘any similarities observed in people who had experienced a stroke’, professionals in six of the interviews referred to the bereavement model. They compared the experience of stroke with bereavement and loss of a former self, seeking to explain the person’s recovery in terms of a ‘process’ towards acceptance. An occupational therapist described how she saw this process:  The initial period is a sense of bereavement, massive sense of bereavement, and you would, they would go through this psychological progression from disbelief, anger, as somebody would do if they had had a loss in their life and it is basically loss of their role, the loss of themselves. . ..

And a physiotherapist: There’s certainly, for some people, I think there’s a sense of loss and maybe bereavement, but you know, they have lost the use of an arm or a leg and or that loss of sensation.

A view which was strongly held by some of the professionals was that, as with the bereavement model, people who had experienced a stroke could get ‘stuck’ in one stage of the acceptance process and then were unable to move on and progress with their rehabilitation and recovery.

A specialist stroke worker stated: And it’s like a bereavement, they go through the processes of bereavement and until they can move to the acceptance stage they actually don’t really do that well. And lots of them are in the anger and denial stage for quite a while, much longer than you would expect of them.

A number of practitioners gave examples of cases where they considered a client had become ‘stuck’ at a stage and until they were able to reach acceptance of their new condition, they would be unable to progress with their recovery. A stroke family support worker used the example of a younger stroke survivor: I’ve got a girl at twelve months down the line who is very very angry and until she moves on from that she’s not going to feel the benefits of the service.

The support worker had arranged various forms of support for this young woman but it did not appear to be helpful for her at that time. Clearly, when things do not go well in the therapeutic relationship, people seek explanations. The bereavement models provides an explanatory framework and also indicates ways in which a situation can be addressed. An individual becomes stuck in the stage of the process, for example they have a false sense of optimism,  then they have unrealistic expectations. These issues can be addressed through counselling so that they can be moved on and develop a more realistic set of goals.

Use of the bereavement model also extended to explanations of carers’ behavior as in the following example where a speech therapist describes the breakdown in communication between herself, her client and the carer: We need to change his environment and there are a lot of family issues going on in the background which complicate it but I think she’s in a different stage in her bereavement from him. I think within our team we are looking at how we can more effectively educate communication with partners and measure it but having said that, I’m just not sure with this couple that she’s ready to take on board the changes she needs to make. Her life has been turned up-side down, she has actually commented, ‘he’s not the man I married’, at least that is the common theme that you hear, but she could make her life more straightforward with him if she took on board some of these issues and she’s just not ready to.

In more than half of the interviews practitioners expressed the view that the bereavement model could be applied to recovery from stroke and affect treatment and progress. Progress within rehabilitation is often measured through the use of goals and achievement of such targets assists the relationship between the practitioner and client. However, when goals are considered to be unrealistic by the professional, the relationship becomes more difficult to maintain.

Professionals work with their clients to set goals which progress towards recovery. If an impediment occurs, such as a client insisting on what is considered to be an unrealistic goal, the relationship becomes strained. Professionals saw goal setting as an important part of the recovery process and created a contract or partnership with the service user: They are their goals but they are set with us and they know that we are going to push them as much as we possibly can because, you know, one that is what we’re supposed to do and two, we’re trying to do the best for them (Physiotherapist).

The therapists in our study approached goal setting in a very similar way to the survivors, setting an ultimate goal, breaking it down into achievable and incremental units and reviewing progress regularly. The process appeared to work well when the therapist and client shared the same perception of goals. However, when there was a difference, survivors’ goals were often seen or classified as unrealistic and this created a major problem in the therapeutic relationship. One such example, where the patient was considered to be ‘stuck’ in the process, had a profound effect on the morale of the multi-disciplinary team involved: This patient, he was really aggressive, he was so, at  the moment he wanted to walk indoors, outdoors but realistically he doesn’t have at the moment enough balance and his insight wasn’t as good as it is now, so it was really difficult because he wanted to run before he could walk. . . So he was all the time upset and for me, it was quite difficult to say, he’s not safe, he’s not doing this now  (Physiotherapist, Rehabilitation unit).

None of the survivors in our study mentioned either bereavement or grieving. The only direct comments on the model were made during our initial discussions of the bereavement model in our project steering group. One of the members of the group, a former academic who had taken early retirement following his stroke and was active in the development of support for stroke survivors indicated that he felt it was a ‘professional’ rather than a survivor way of thinking about the effects of stroke. He amplified his comments in the following way:  I think that a therapist said something about the bereavement model to me but I can’t remember whether it was while in hospital following my stroke or when I eventually returned to work for a short while. I think I remember that it seemed to serve a useful purpose for the therapist. It was a convenient model that, because it is easy to memories and relate to, provided a useful conceptual framework. It is an easy thing to hang ideas and concepts on and for that reason the model has probably caught on in therapists’ training. I can’t think of anything from my own experiences that fits with the model apart from a dream which I had about being in the local cathedral and I dreamt that I no longer suffered my stroke induced physical disabilities.

While the stroke survivors in our study reflected both on the past, especially the changes, which stroke had made to their lives, and on the future, they were particularly engaged with the present and with the management of everyday life. There was little sense of passivity or being ‘stuck’ rather a dynamic approach in which individuals sought to develop and learn. This dynamism was particularly evident in the way in which 80 year old Mr. Neville presented his situation and his active
management strategy:
Mr. Neville: Four months after coming out of hospital I put the ladder against the wall and it is very high, and I thought, right you can paint this room, you can do it and I painted it so I got my confidence back again and I bought a bicycle you know for.
Interviewer: An exercise bike?
Mr. Neville: An exercise bike, I bought that and I worked out a regime of exercises and I do those every day.
Interviewer: Why do you think it was important to you to get back to these activities?
Mr. Neville: Well unless I could do them it was going to be, life was going to be very dull. I didn’t want to sit down all day.

Another older stroke survivor identified several personal goals. At the time of the interview she accepted one of these was unrealistic, driving, so had concentrated on relearning the skills required for the other two, walking and playing bowls.
Int: Do you think it has changed your life?
Mrs. Dalton: Ooh, I should say. It has very much.
Int: Are you able to tell me in what ways?
Mrs. Dalton: Well, I can’t walk the distance I used to. I am now not re-learning but re-practicing bowls and can play nine ends indoors. And I can’t drive a car. That’s a big loss, a big loss.
Int: Did you actually set yourself any personal goals?
Mrs. Dalton: Yes, it was walking, to feel that sense of independence again, and the bowls and the driving, the three priorities. They were my target things and my physiotherapy has been directed at all that. It is only the driving...
Int: So were they goals that you identified to the physiotherapist and they have helped you with that. . .
Mrs. Dalton: ooh, are we going back to those days, that was Eileen or one of the physios would take me just a little walk to the sign post at the corner and back and then eventually I did the block to prove I could do it and when I could my husband did it.
Int: So they built you up slowly then.
Mrs. Dalton: Yes, ooh yes, it was slow.
Int: And what about with regard to the bowls, what is specific with that, that they had to work with you on?
Mrs. Dalton: They had to be sure that I could balance, stooping down to present the wood.
Int: And did that come back quite quickly?
Mrs. Dalton: No, I’ll give you a wood to hold in a minute and you’ll see the weight of it.

Stroke survivors were appreciative of services that recognized and helped them achieve their goals. Indeed they tended to respond positively to ‘optimistic’ professionals who exerted pressure of ‘pushing’ them. Mr. Tucker a 76-year-old man explained, he did not mind being pushed:
Mr. Tucker: She was very good. She was an Australian girl and… She said ‘you can do it, you can do it, go, go, go’.
Int: What do you think it was about her that made  you feel she was good?
Mr. Tucker: I think she knew where she wanted me to go and she certainly pushed that and that alone you know.

Survivors tended to be critical when services did not acknowledge and support them in achieving their goals. For example, for Mr. Isles when he requested an exercise programme from the physiotherapist that he could carry out at home. His request was refused and there was a clear communication difficulty: Yes, I would end up arguing with her the whole time. It was very negative, she said, I mustn’t walk, I mustn’t use my hand, because she was worried about spasticity all the time but my theory was unless you use these things you can’t teach the brain the new pathways to make it better.

He eventually worked with a new physiotherapist who gave him the programme and who he felt understood what was important for him in his recovery. In our interviews with professionals involved in the support and rehabilitation of stroke survivors we identified their use of the bereavement model both as an explanation of the psychological effects of stroke and to explain a breakdown in the therapeutic relationship.  When the goals of the practitioner and the client were not the same or were perceived as unrealistic, and the client became ‘uncooperative’, the client was said to be ‘stuck’ at a stage in the process and unable to accept their disabilities. Whilst it is useful for professionals to have a model to use that explains why a person is reacting in a certain way, not everybody reacts to experiences in the same way. Professionals are able to demonstrate cases where they felt their input had been successful and this was where they were able to successfully identify and communicate their clients’ needs.

Bury in his classic review of serious illness notes that the onset of chronic illness has serious personal and social implications. He argues that such illness disrupts the normal pattern of personal development creating a ‘biographical discontinuity’ and individuals respond to such challenges by making sense and ‘normalizing’ their new situation. Similarly Frank asserts that serious illness commonly results in narrative wreckage, that is previously taken for granted linear trajectories of self-development and life plans and events are destabilized and undermined requiring reevaluations and replanning.  It is clear that at the time of the interviews, for most of our respondents a year or so after their stroke, they were engaged in the creative processes of ‘normalizing’ their situation.

In our study, stroke survivors sometimes expressed feelings of frustration or anger over aspects of professional support but far from being ‘stuck’ somewhere, these were reasoned responses to difficulties in communication. When goals and aims of recovery were mutually understood, progress was much more likely. Sudden and traumatic events like stroke, leave the individual anxious and uncertain. It is important to recognize that individual’s response is highly individualized.

They are likely to experience loss and set themselves goals to ‘get back to normal’. However the loss and goals are unique and specific to each individual and ‘standardized psychological models’ do not provide an effective way of understanding and assisting this process. As Dowswell and his colleagues note, ‘survivors have individual and personal yardsticks for measuring their recovery’.  Professionals are likely to be most effective and helpful if they can demonstrate to survivors that they are willing and able to communicate, in particular to understand the biographical context which each survivor uses to make sense of their situation and to map and manage their future.
-Alaszewski A; Alaszewski H; Potter J; Disability And Rehabilitation, 2004 Sep 16; Vol. 26 (18), pp. 1067-78

Personal Reflection Exercise #8
The preceding section contained information about the bereavement model, stroke and rehabilitation.  Write three case study examples regarding how you might use the content of this section in your practice.

What does Bury argue about the effects of serious, chronic illness? To select and enter your answer go to Test

Section 16
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