Discharge from physiotherapy following stroke:: the management of disappointment
Introduction
Stroke is a significant cause of long-term disability in the UK (Department of Health, 2001), with approximately 50% of stroke survivors experiencing some degree of permanent disability following stroke. The usual pattern of care for people in the UK following stroke is admission to hospital, followed by a period of multidisciplinary rehabilitation with the physical management conducted primarily by physiotherapists in both in-patient and out-patient settings, generally for a period not exceeding 1 year post-stroke. There is considerable uncertainty in the physiotherapy profession about the optimal timescale and effectiveness of physiotherapy interventions because of a lack of research and conflicting evidence (Ashburn, Partridge, & De Souza, 1993; Department of Health (1999), Department of Health (2001); Lincoln, Parry, & Vass, 1999; Parry, Lincoln, & Vass, 1999; Davidson & Waters, 2000). Most researchers agree that the majority of recovery occurs within the first 3 months post-stroke. However, some contend that recovery continues over 6 months or even longer. The timescale for patients receiving physiotherapy is consequently varied and discharge from physiotherapy appears to be affected by a range of factors, such as health service resources and perceptions of patient motivation, as well as extent of physical recovery (Maclean & Pound, 2000; Tyson & Turner, 2000; Maclean, Pound, Wolfe, & Rudd, 2002).
The experience of discharge from physiotherapy by stroke survivors has been found to be one of distress, resulting in feelings of ‘abandonment’ (Pound, Bury, Gompertz, & Ebrahim, 1994; Doolittle, 1992). Research indicates that stroke patients and their carers view physiotherapy positively, and that participating in physiotherapy treatment provides them with a sense of well-being, self-worth and control (Pound et al., 1994; Wiles, Ashburn, Payne, & Murphy, 2002). Physiotherapists are viewed as sources of advice, information and hope, and physiotherapy is viewed by patients and carers as effective in bringing about recovery post-stroke (Anderson, 1992; Pound et al., 1994; Wiles et al., 2002). Discharge from physiotherapy is viewed as signalling the end of recovery and patients frequently want more physiotherapy, viewing this as the route to further recovery (Anderson, 1992; Doolittle, 1992; Partridge, 1993; Pound et al., 1994; Kelson & Ford, 1998). For many patients, discharge from physiotherapy is felt to be premature (Pound et al., 1994).
Physiotherapists use various strategies for avoiding discussion of recovery with patients during the period of physiotherapy treatment, because of uncertainty about outcome (Hart, 1998; Wiles et al., 2002). Differing understandings between patients and physiotherapists about what recovery comprises presents a further difficulty. Research indicates that patients view recovery as a return to previously valued activities, whereas physiotherapists view recovery in the more limited sense of a return of movement and the ability to achieve the basic activities of daily living (Hafsteinsdottir & Grypdonck, 1997; Tyson & Turner, 1999). In a previous paper focusing on physiotherapy treatment prior to discharge, we noted that, while physiotherapists rarely engaged in discussion with patients about the likely extent of their recovery, patients nevertheless maintained high expectations of recovery and felt that these expectations were shared by the physiotherapist treating them (Wiles et al., 2002). Discharge from physiotherapy is the point at which one would expect patients’ and physiotherapists’ understandings and expectations about recovery and about the role of physiotherapy in achieving further recovery to be confronted. It is at this stage that physiotherapists have to engage in an explicit discussion with patients about the extent of recovery made, the reasons for discharge and the potential for further recovery. For patients who have not made the recovery they hoped for, this means having to confront their expectations about what physiotherapy could achieve for them, the extent of their recovery and their options for the future.
This paper explores how discharge is managed and experienced by both patients and physiotherapists. In this paper, we use Craib's ideas about disappointment developed in the context of psychotherapy (Craib, 1994) to explore how these can help to make sense of the process of discharge from stroke physiotherapy and the way patients experience it. We will briefly summarise Craib's ideas here. Craib draws on social theorists such as Giddens (1990), Giddens (1991) and Hochschild (1983) to argue that, in modern society, a range of processes such as globalisation and the fragmentation of daily life have contributed to people experiencing an increasing sense of risk and feelings of loss of control. Craib argues that this has precipitated an emphasis on personal relationships and emotions, as this is the one realm where people feel they can gain a sense of control. This has enhanced the prominence of professions that manage emotions, resulting in a sense that our emotional world can be controlled and organised in a positive way. This has contributed to the myth of the powerful self that can ensure that its needs are met. Craib argues that these developments have contributed to a society where there is a tendency to encourage people to desire the impossible, to believe that they can achieve what they want and where even the possibility of disappointment is denied. The relevance of these ideas for the management of discharge from physiotherapy post-stroke and the impact of this process are explored in this paper.
Section snippets
Methods
This paper is based on data collected for a study exploring the information exchanged between patients and physiotherapists about recovery following stroke (Wiles et al., 2002). The study was multi-centred and comprised in-depth longitudinal case studies of 16 stroke patients and their in-patient and out-patient physiotherapists. The sample size allowed maximum variation in the characteristics likely to impact on patients’ experiences and attitudes (e.g., sex, age, social class, place of
Findings
Of the 13 patients focused on in this paper, eight were female and five male, and their ages ranged from 41 to 79 (mean 66 years). The mean in-patient stay was 8 weeks (range 4–18 weeks), during which time patients received in-patient physiotherapy. All but one patient received out-patient physiotherapy once or twice a week for a period of at least 6 weeks (one person received only one out-patient physiotherapy session). Sessions were held at a range of venues: seven people received their
Discussion
This study has indicated that the discharge of stroke patients from physiotherapy is not a point at which patients’ expectations of recovery are confronted by the reality of what physiotherapists feel they can achieve with patients (or are able to achieve within service constraints). While physiotherapists did talk to patients about their having reached a plateau in their recovery, they also raised the possibility of further ‘natural’ or spontaneous recovery to be assessed at a future date.
Conclusion
We have argued here that the process of discharge may be seen as one which contributes to the maintenance of hope and the deferral of disappointment about the level of eventual recovery post-stroke. Physiotherapists have the unenviable task of having to deal with patients’ distress and disappointment at the limited extent of recovery achieved following a period of stroke rehabilitation. The lack of knowledge about the process of recovery from stroke, as well as patients’ high expectations,
Acknowledgements
We are grateful to all the people who participated in this study. Thanks also go to Graham Crow for his helpful comments on an earlier version of this paper.
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