VOL: 98, ISSUE: 23, PAGE NO: 33
Jane Barton, DClinPsych, MSc, BA, is clinical psychologist, older adult psychology, Nether Edge Hospital, Sheffield;Abi Miller, BSc, is speech and language therapist, services for older people and rehabilitation care group, Community Health Sheffield NHS Trust;Jill Chanter, SROT, is senior occupational therapist, assessment and rehabilitation centre, Nether Edge Hospital, SheffieldThis article discusses setting up and running therapeutic groups for people who have had a stroke and are undergoing rehabilitation. The initiative is timely, given the emphasis in the National Service Framework for Older People (Department of Health, 2001) on providing longer-term psychological and emotional support for people who have had a stroke.
This article discusses setting up and running therapeutic groups for people who have had a stroke and are undergoing rehabilitation. The initiative is timely, given the emphasis in the National Service Framework for Older People (Department of Health, 2001) on providing longer-term psychological and emotional support for people who have had a stroke.
In western countries about 200 people in every 100,000 have a stroke and are admitted for medical care every year (Skilbeck, 1996). Given that stroke is one of the main causes of chronic disability, it is not surprising that patients often experience a range of emotional problems or that their families and friends can face similar problems.
Anxiety and depression are common after stroke (Burvill et al, 1995; Burvill et al, 1997). Depression is believed to be the most common (Robinson, 1997), although estimates of prevalence vary between 25% and 79%, depending on methodological factors or time of assessment (Gordon and Hibbard, 1997).
Although it is understood that there is an organic basis for some depression after stroke, it is generally believed that a number of psychosocial variables are relevant, such as perception of social support, younger age and problems with activities of daily living (Kneebone and Dunmore, 2000). In this context, most cognitive theories of depression tend to be associated with loss and a perceived discrepancy between the real self and the ideal self (Williams, 1992). In contrast, anxiety tends to be associated with perceived threat.
In view of the many losses and changes that people can experience after a stroke, the high incidence of emotional problems is not surprising. Skelly (2002) suggests that the meaning a person attaches to the stroke, rather than the stroke itself, is the most important factor in determining psychological well-being.
Clinically, patients' worries and concerns tend to focus on their losses experienced and fears for the future. These include concerns about how they will cope, the impact of the stroke on their family and whether or not they are likely to experience a further, possibly life-threatening stroke.
In spite of widespread acknowledgement of the emotional problems that follow stroke and of the psychosocial basis for these problems, there is little published evidence on the effectiveness of psychological interventions. A review by Kneebone and Dunmore (2000) found no studies on the effectiveness of group therapy for people with depression after a stroke. We, therefore, set up a group to investigate whether it would be effective in helping people to come to terms with their changed circumstances after a stroke.
Setting up the group
Many of those referred to our clinical psychology service were stroke patients having difficulties in psychologically adjusting to the disability and changed life circumstances caused by their stroke. The therapeutic group was set up to try to address these needs.
The group was underpinned by psychological models of bereavement and the process of grieving for loss (for example, Kubler-Ross, 1975). In this case patients had experienced loss of physical abilities, life as it was and their sense of independence.
The group was set up at the day hospital at Nether Edge Hospital in Sheffield by the clinical psychologist, and co-facilitated by a speech and language therapist. Other members of the multidisciplinary team also contributed.
The group aimed to help patients to cope psychologically with the aftermath of a stroke. In particular, it aimed to give patients an opportunity to share and emotionally process their experiences of the stroke, and to work towards greater psychological acceptance of their disabilities and changed health circumstances, in a group setting. It also aimed to increase individual control and self-esteem, and encourage patients to develop a positive attitude.
All participants had a stroke in the previous six to eight months, had an associated residual disability (either physical or communication) but no obvious associated cognitive impairment. They were having difficulties in adjusting emotionally to their stroke. In the first group there were six participants, three women and three men, and the average age was 70 years (range 57-84 years).
The participants were identified by nursing or therapy staff as experiencing problems in adjusting emotionally to their stroke (no standardised preassessment measures were used) and were approached by the group facilitators. The purpose of the group was explained to them and they were invited to join. None of the patients declined and all participants attended the whole course.
Structure and content of the group
The group met weekly for seven weeks. The 90-minute sessions followed a broad planned framework but the facilitators had the flexibility to respond to the demands of the group. Box 1 summarises the themes and topics discussed.
Informal evaluation and outcomes
During the final session, the participants spent time reflecting on the group, what had been helpful and ideas for improvements. There were a number of findings:
- The participants rated highly the experience of being a group member and being able to share experiences. There was a sense that this helped to reduce their feelings of isolation and the feeling of being the only person in the world experiencing such an ordeal;
- They found telling their story and hearing others' stories about their stroke extremely valuable. Some felt that they had never before been given the chance to have someone listen to their story. Others needed to tell their story over and over again as part of their emotional processing of the ordeal;
- They saw the group as a safe place in which they could openly discuss negative thoughts and feelings as well as fears. For example, they shared feelings of envy and resentment when comparing their own (ill) health to the 'good' health status of others;
- The participants commented on the value of offering support to each other. This gave them a sense of 'usefulness' and of 'giving' help to others, rather than continually being on the receiving end of help. This had a positive impact on their self-esteem.
The participants offered suggestions on how to improve the group and the rehabilitation service. Their ideas for improving the group included making sure that a doctor was available to answer questions and focusing more strictly on the group agenda. Ideas for the service included having written information on collaborative therapy goals and progress, as well as developing and running other groups focusing on health promotion (for example, smoking cessation).
The facilitators also reflected on the process of setting up and running the group. They felt that the original aims had been achieved. Their conclusions included:
- The group was set up to facilitate the emotional processing of, and psychological adjustment to, having a stroke and the associated losses. Participants appeared to use the group for this purpose. A sense of cohesion soon developed and members appeared to be comfortable in expressing their feelings, thoughts, concerns and experiences, as well as their fears for the future. Emotion-focused styles of coping appeared to be most common;
- There also seemed to be a strong desire for education and information on strokes. There were large gaps in participants' knowledge, even though it was about six months since they had their stroke. It was not clear whether they had been given this information during the acute phase after their stroke and had been unable to absorb it at that time or whether they had not been given the information at all. Nevertheless, it appeared that the information-giving aspect of the group helped some participants to process their experiences more fully. Others appeared to need further stroke education before any emotional processing could take place;
- The group also appeared to be helping people to develop new roles. One participant found it extremely important to be able to care for, and be helpful to, others. Before her stroke she had a job and cared for her husband, who was ill. Her stroke limited her ability to do this. However, after group discussions a rehabilitation service education programme was set up, and she was given a role that enabled her to help others and gave her a new sense of purpose.
Implications for the service
Therapy staff agreed to give patients written information on their collaborative therapy goals, their progress in therapy and the focus of the therapy sessions. This was primarily a response to the participants' wishes to understand more about the rehabilitation process, and the rationale for treatment decisions and discharge.
The identified need for additional group work was acted upon and a programme of groups were developed to address gaps in the service. These consisted of a stroke education group to help patients understand stroke, an anxiety-management group to focus on cognitive and behavioural methods of dealing with anxiety and a series of muscular-relaxation sessions.
A second group
The emotional-adjustment-to-stroke group was run for a second time, this time with five male participants. The group sessions were similar in structure to those in the first course, although they could be modified to meet members' needs.
The content of the group discussions differed from that of the first group. The participants adopted a more problem-focused, rather than emotion-focused, coping style. For example, common activities included brainstorming practical solutions and sharing information and ideas. The participants appeared to be able to reflect on the wider implications of their stroke, discussing topics such as the strain on carers as well as issues associated with their own sexuality.
There was no formal evaluation of this group, but informal evaluation tended to reflect the benefits identified by participants in the first group.
A rolling programme
The adjustment group now has a rolling programme for appropriate referrals. It is organised and led by the occupational therapy department, in conjunction with clinical psychology and nursing. The emphasis is on supporting people who are making the transition from the rehabilitation focus on 'getting better', to coping with living with the physical and psychological consequences of having a stroke. New themes have been introduced, including:
- Feelings associated with loss, and understanding the grieving process;
- The balance between hope and despair, and the potential dysfunctional nature of unrealistic hope;
- Redefining self and identity;
- Individual (and realistic) goal planning;
- Ways of coping.
A new method to evaluate the effectiveness of the group has been developed. At the beginning of the course each participant identifies something that is meaningful to them in terms of how they are coping and how they would like this to change. These are not treatment goals but feelings about how they are coping, for example feeling 'out of control of my emotions'. Statements are rated on a 10-point scale (1 = negative, 10 = positive) during each session to measure any change.
During the trial of this method, ratings were not consistently made in each session but there was a trend for most participants to rate their feelings more positively over the course of the group. Table 1 shows the statements and ratings. There was, however, much missing data and future evaluations will need to be more consistent and systematic. Nevertheless, a paired associated T-test showed the grouped changes in ratings over time to be significant (t = -3.29; p<0.05).>0.05).>
Summary and conclusions
This article reports on the process of setting up therapeutic groups to help stroke patients emotionally process their experiences of stroke and to facilitate their psychological adjustment to disability. The groups are now an established part of the day hospital's programme.
Initially, a more structured approach was adopted, but a more client-led approach has resulted in different groups adopting slightly different styles. For example, some have focused more on emotions while others have focused on problems. These differences may reflect factors such as time since stroke, stage of recovery, gender and personality, and highlight the importance of tailoring the group to the particular needs of its members.
In conclusion, the groups appear to have fulfilled their original aim, although a more thorough and systematic evaluation is needed. This innovation has also been instrumental in highlighting potential gaps in service delivery and enabled us to begin to redress this situation.