Patient & Public

I will start by considering what patients say about their rehabilitation experience. Anyone familiar with this site will realise I like evidence! Much of the evidence concerns rehabilitation delivered in hospitals and, usually, patients with a specific condition.

Stroke rehabilitation research has been at the forefront of rehabilitation research. Hanne Peoples and her colleagues reviewed qualitative studies on patients’ experience of stroke rehabilitation. [A qualitative study asks people to talk about their experience, and the researchers analyse the content.]

The overwhelming theme emerging from 12 studies encompassing 224 patients concerned power and empowerment in the relationship between the patient and the rehabilitation staff. For example, people often experience powerlessness, subordination, and paternalism. On the other hand, some people managed to take charge and help themselves. There were five subsidiary themes.

Patients reported that, if successful, coping with (adapting to) a new situation could enhance their sense of control. On the other hand, rigid ward routines often inhibited adaptation and fostered a feeling of loss of control.

Patients wanted information so they could participate actively in their rehabilitation. Failure to provide information was associated with powerlessness and a feeling that they were sitting and waiting.

Patients felt that the emphasis was too physical and that broader social and psychological concerns were overlooked, increasing their sense of lost autonomy. Conversely, people and services that were person-centred and treated patients with respect enhanced a sense of control. Being person-centred is discussed on this site, for example, here. Many people are uncertain about collaboration with rehabilitation professionals, appreciating them making some decisions but not liking total loss of control. The uncertainty arose from the patient’s limited understanding of rehabilitation.

Whalley Hammell undertook a systematic review and metanalysis of qualitative studies of the rehabilitation experience of people with a spinal cord injury. This situation is like a stroke in that it is of sudden onset but is radically different as there is no natural recovery of losses.

The most significant theme extracted was the impact of staff attitudes. Those who treated the patient as a person, respecting and involving them as an equal with all that follows, were compared to those who were authoritarian, unwilling to answer questions or allow the patient to differ from their recommendations. Patients also mentioned the value of being allowed to choose which staff member would see them.

Other themes mentioned were:

• A need to envision a satisfying life in future. The rehabilitation team needed to explain possible opportunities.
• Peer support. The value of being with other people in the same situation.
• The institution’s culture. This is usually perceived as restrictive, inflexible, and dehumanising.
• The content of the rehabilitation. This is often standardised, not person-centred, and does not respect the person’s wishes or situation.
• A failure to consider how life would be outside the rehabilitation setting.
• There is a need to link the present and future to the past, respecting the person’s narrative, the type of person they are, and how that can be continued.

Julie Luker and colleagues reviewed qualitative studies on Care Givers’ Experiences, Needs, and Preferences During Inpatient Stroke Rehabilitation. They extracted data from 33 studies (34 papers) involving 452 caregivers, which originated in 10 countries and were undertaken between 1998 and 2015. They extracted seven themes.

The first theme was a feeling of being emotionally overwhelmed. This is unsurprising.

The next was that carers wanted to be seen as stakeholders in the rehabilitation process and to contribute; they were frequently frustrated by being excluded. Moreover, they needed to be given the information required to support the patient.

The third theme was a desire to be listened to and kept informed. The staff’s disappointing failure to listen and inform made carers feel disempowered and suspicious and start asking more, which often further disrupted the relationship.

The fourth theme was that carers became advocates for their relatives. This was often confrontational, and carers selected what to fight for.

The fifth theme gave another perspective; the carers felt they should be clients or patients, receiving professional support to manage their distress.

The sixth theme concerned the organisational culture, routines, and procedures. Staff often assumed carers had a much greater knowledge and understanding of the local systems than they did. This was exacerbated by inflexibility and different staff giving different information.

Last, carers were concerned about the transfer home and the absence of preparation, such as practising how to support the patient.

There are many other studies of patients’ experience with rehabilitation, but I will not review them because they are likely to have similar findings. The findings should help improve services.

None of the studies asks what the person wants or needs to know. Instead, they investigate the positive and negative aspects of the rehabilitation received. While these might imply or indicate a patient’s need, they do not necessarily indicate what the person wants. On the other hand, failures that cause stress should lead to alterations in team processes.

Nonetheless, the experiences reported by patients suggest areas where providing information might help.