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Making a support group work for patients

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Alison Griffiths, BSc (Hons), RGN, DipHE

Macmillan Clinical Nurse Specialist, Gynaecology, Medway Maritime Hospital, Kent

Patients need support to help cope with the effects of a gynaecological cancer diagnosis and treatment. The challenge is to meet their varied needs. Alison Griffiths discusses setting up a professionally led support group.

Patients need support to help cope with the effects of a gynaecological cancer diagnosis and treatment. The challenge is to meet their varied needs. Alison Griffiths discusses setting up a professionally led support group.

CANCER
About 15 000 women a year are diagnosed with gynaecological cancer (NHS Executive, 1999). Gynaecological cancers are a diverse group with different characteristics; ovarian cancer is the most common, affecting 20 per 100 000 women. Incidence rates for cervical and endometrial cancer are around 15 per 100 000, while vulval cancer affects three in 100 000 women. In 1997, over 6500 women died from gynaecological cancer in the UK (Blake et al, 1998).

Despite the fairly encouraging prognosis associated with early detection and treatment, significant psychological distress has been reported by women throughout the course of the disease (NHS Executive, 1999).

Following treatment for gynaecological cancer many patients suffer persistent anxiety about recurrence of the disease and their general health (Corney et al, 1992). Other worries include:

- Sexual dysfunction (Maughan and Clarke, 2001)

- Altered body image

- Altered fertility

- Impact on perceptions of femininity (Ekwall et al, 2003).

Jefferies (2002) noted feelings of stigmatisation in patients with cervical cancers due to society's apparent misconception that their illness is linked with sexual promiscuity.

The National Institute for Clinical Excellence's guidelines on supportive and palliative care (NICE, 2003) place emphasis on the role of self-help and support groups, and states that patients, their families and carers need access to supportive care, which should be provided throughout the patient's pathway.

Support groups have provided a forum for patients, where they can access help and overcome some of the psychological trauma that accompanies the diagnosis of cancer (Grabowski and Jens, 1993).

Support groups available to people with cancer tend to fall into three categories: the psychotherapy approach; the self-help support approach and the professionally led group (see box, page 23).

GROUP WORK
A support group for women with gynaecological cancer within the Medway Maritime Hospital in Kent arose from patient requests and after a patient satisfaction audit was carried out.

The hospital serves a diverse population of around 360 000 people, and is a level two Calman Hine Cancer Unit. Soon after taking up post as Macmillan clinical nurse specialist, I became aware that my client group was requesting more information about the availability of local support groups for women with gynaecological cancer. Further evidence to support this request arose from a patient satisfaction audit conducted in 2002, one year after taking up post.

An audit tool was developed with help from the cancer data manager and the trust's clinical effectiveness team. It consisted of 10 questions, focusing on the provision of verbal and written information in relation to:

- Surgery

- Psychosocial, psychological and psychosexual issues (Cain et al, 1986)

- Supportive care interventions from the CNS.

Information was collected using Yes/No answers with space for patients to add additional comments. Fifty questionnaires were sent out to randomly selected patients known to the CNS, aged 37-75 years.

Thirty-nine questionnaires were returned - an overall response rate of 79%. While the results suggested that patients were satisfied with the care and supportive interventions they received from the CNS, many patients said they would like to talk to other women in a similar situation in a support group setting.

Ekwall et al (2003) examined the needs of women diagnosed with primary gynaecological cancer. They found that communication with other patients could benefit women, provided they could decide when and how it occurred.

The women in the study reported that they wanted to talk openly to other women about sexuality and their bodies and how the illness had impacted on their relationships with others. Many women expressed dissatisfaction that health-care professionals rarely engaged in dialogue about sensitive issues such as sexuality and relationship problems with partners.

Despite the wide range of psychological support services for cancer patients locally, which are currently provided by the gynaecological CNS, the cancer social worker, a hospital psychologist and two oncology counsellors, along with a counselling service at a variety of GP surgeries, our audit revealed that this group of women had unmet psychological support needs.

GETTING STARTED
The support group adopted the 'professionally led' model, which other oncology CNSs in the hospital have used in breast and colorectal cancer support groups. Both groups are highly successful and have been established for a number of years.

The specialist nurses who facilitate these groups do so in a non-directive way and are always available for advice and to answer any questions at group meetings. These are active groups where the patients support each other, share experiences and plan guest speakers, along with various fund-raising activities.

The first gynaecology cancer support group for the women of Medway and Swale is now well under way. Full support for the initiative was given by the Macmillan lead cancer nurse and the trust's cancer business manager and the lead gynaecological cancer consultant.

Letters were sent to all patients known to the CNS over the past two years. Those for whom group support would not be appropriate, for example patients who were too unwell to travel to meetings, were not invited, continuing instead with individual support as before.

Forty-seven out of 145 women responded by saying that, although they felt the support group was a good idea, it was not for them. Thirty-seven women said they were very keen to join the group. Some of the potential participants were currently going through treatment, while others had completed treatments during the past two years.

All participants wanting to join the support group were informed of its aims and terms of reference - to provide a safe and supportive environment in which women can gain support from each other, through openly sharing feelings and experiences.

The participants requested that the group run on a monthly basis for two hours from 7pm to 9pm. Some indicated that they would like guest speakers to provide a focus on information.

Throughout the process we have collaborated with the CancerVoices support group development co-ordinator, who agreed to act as a guide and offered advice regarding practicalities as well as helping to facilitate the first meeting.

There were no real cost implications in setting up the group. The venue used has been offered free of charge. Likewise, we are grateful that invited guest speakers have also waived any fee.

The cancer team secretary, in agreement with the cancer business manager, has provided secretarial support. Pamphlets and posters have been produced and all new patients referred to the service are made aware of the support group.

Participants are offered educational and informational audiovisual materials, books and relaxation tapes at the meetings.

The participants have identified the type of guest speakers they would like to hear. To date these include:

- A dietitian for nutritional advice

- A cancer social worker for financial and benefits advice

- Information on complementary therapies.

At the first meeting the CNS provided free refreshments. Participants agreed to contribute to a kitty for future meetings.

LIMITATIONS
Support groups can enhance the quality of care and reduce the sense of loneliness and anxiety of some patients, as they meet others with a similar diagnosis to themselves (Bottomley, 1997).

However, taking part in a group can increase stress and tension. Some people may find open communication threatening, or feel overwhelmed, or become too dependent on the group, and may even feel embarrassed and learn inappropriate behaviour (Galinsky and Schopler, 1994).

The group leader needs to be trained, skilled and well prepared to prevent and deal with negative effects and problematic group processes (Rustoen and Hanestad, 1998).

Nurses and other health-care professionals involved need to recognise that some patients are actually harmed by group experiences, and that being in groups may not necessarily help everyone (Galinsky and Schopler, 1994).

Culture can also influence how much social support is needed and the types of network available. Group or peer support sessions are not likely to work unless they are compatible with the norms, values and religious beliefs of the individual patient.

Men, people from ethnic minorities and patients from low socio-economic levels are under-represented in cancer support groups (Slaninka, 1992). Involving these patients and promoting equitable services poses a challenge for those planning and running support groups.

SUMMING UP
Psychological support should be available at every stage to help patients and their families cope with the effects of cancer and subsequent treatment.

The advantages of building a group around one diagnosis include:

- Faster cohesion

- The ability to give more detailed information about a specific cancer and the treatment process

- An increased sense of safety among members about discussing highly personal issues (Spiegel et al, 1981).

Setting up the group has been a valuable learning experience, as well as presenting many challenges for the CNS. It involved looking at new ways of working across professional boundaries and forming new partnerships in order to complement the service development.

As the group evolves, new challenges and learning experiences will emerge. The CNS aims to share results and outcomes from this activity both locally and nationally. In doing so it is hoped that nurses working in specialties other than cancer care will listen to their patients' needs and take action.

Author contact details:
Alison Griffiths, The Richard Watts Unit, Cancer Services Team, The Medway NHS Trust, Medway Maritime Hospital, Windmill Road, Gillingham, Kent ME2 3LZ. Email: alison.griffiths@medway.nhs.uk

Latest Policy
The most recent Department of Health policies on cancer

REORGANISATION OF CANCER CARE

Over the past few years cancer has been high on the political agenda. The Calman Hine report A Policy Framework for Commissioning Cancer Services (1995) and the NHS Cancer Plan (DH, 2000a), along with other government directives (DH, 1999; 2000b), have been the key drivers towards the commitment to improve the patient's experience, and have led to the re-organisation of cancer services throughout the UK

PSYCHOLOGICAL AND SUPPORT SERVICES

The service model for gynaecological cancer is built around assessment services at district general hospital cancer unit level, and treatment services at cancer centre level. Each level is managed by a specialist multidisciplinary team. The NHS Cancer Plan (DH, 2000a) has highlighted the importance of both psychological and support services as being implicit within the context of cancer care

ROLE OF SPECIALIST NURSES

The NHS Executive's Improving Outcomes in Gynaecological Cancer (1999) highlights that specialist nurses in multiprofessional teams can help to reduce patients' psychological distress, increase satisfaction, and improve information flow to patients.

Sources: Calman and Hine, 1995; NHS Executive, 1999; DH, 2000a; 1999; 2000b

KEY POINTS
- Women with gynaecological cancers often experience significant psychological distress

- Support groups are a vital form of back-up for such women. Three sorts exist: the psychotherapy approach, the self-help support approach and professionally led groups

- A professionally led group was set up for patients at one hospital, led by a clinical nurse specialist. It offers a balance between patients being able to meet in an informal setting and share their experiences, while the nurse can offer education and information

- Because the women all have the same medical condition, they can be given more detailed information

- Sharing the same experience increases participants' feelings of security when discussing intimate matters

Three types of support group
1. The psychotherapy approach - this is problem focused and didactic (Burton and Watson, 2000), with structured interventions that include teaching problem-solving skills, stress management, relaxation and health education, with accompanying literature for group participants

2. The self-help support group - here the patients take responsibility for the group (Hitch et al, 1994). If professionals are involved they only play enabling roles, such as catalyst, consultant or trainer

3. The professionally led support group - this is facilitated by a doctor, nurse or social worker. Burton and Watson (2000) suggest that this model of support group bridges that of the formal and informal dichotomy of psychotherapy and self-help groups, since it encompasses group support and mutual aid, along with an informal education and information focus.

The experience of running a support group at Medway and Swale
1. I have been able to use my professional knowledge, skills and training to run the group. My contacts and experience in the field enable me to gain access to guest speakers, supportive organisations and educational information. Women who have attended the support group said they were more likely to attend a group run by a professional in the field of gynaecological cancer

2. Patients who become upset or distressed gain great support and empathy from others in the group, along with support from the CNS. If a patient has a particular worry she wants to discuss I make arrangements to speak to her privately

3. Patients often say that they gain considerable support from others at the group meetings and from being among women who have gone through a similar experience.

What support groups can do
- Positively reinforce and encourage members

- Respect individual styles, needs, and values

- Share information to help people cope

- Discuss advantages and disadvantages of various coping methods offered by the group leader

Source: Hitch et al, 1994.

Blake, P., Lambert, H., Crawford, R. (1998)Gynaecological Oncology: A guide to clinical management. Oxford: Oxford University Press.

Bottomley, A. (1997)Cancer support groups: are they effective? European Journal of Cancer Care 6: 11-17.

Burton, M., Watson, M. (2000)Counselling People with Cancer. Chichester: John Wiley and Sons.

Cain, E., Kohorn, I., Quinlan, D. et al. (1986)Psychosocial benefits of cancer support groups. Cancer 57: 183-189.

Calman, K., Hine, D. (1995)A Policy Framework for Delivering Cancer Services. London: The Stationery Office.

Corney, R.H., Everett, H., Howells, A., Crowther, M.E. (1992)Psychological adjustment following major gynaecological surgery for carcinoma of the cervix and vulva. Journal of Psychosomatic Research 36: 561-568.

Department of Health. (1999)Clinical Governance: Quality in the new NHS. London: DH.

Department of Health. (2000a)The NHS Cancer Plan. London: DH.

Department of Health. (2000b)A Policy for Commissioning Cancer Services. London: DH.

Ekwall, E., Ternestedt, B.M., Sorbe, B. (2003)Important aspects of health for women with gynaecologic cancer. Oncology Nursing Forum 30: 2, 313-318.

Galinsky, M., Schopler, J. (1994)Negative experiences in support groups. Social Work in Health Care 20: 1, 77-95.

Grabowski, V.M., Jens, G.P. (1993)The collaborative role of the CNS in support groups. Clinical Nurse Specialist 2: 99-101.

Hitch, P.J., Fielding, R.G., Llewelyn, S.P. (1994)Effectiveness of self-help and support groups for cancer patients: a review. Psychology and Health 9: 437-448.

Jefferies, H. (2002)Ovarian cancer patients: are their informational and emotional needs being met? Journal of Clinical Nursing 11: 41-47.

Maughan, K., Clarke, C. (2001)The effect of a clinical nurse specialist in gynaecological oncology on quality of life and sexuality. Journal of Clinical Nursing, 10: 221-229.

National Institute for Clinical Excellence. (2003)Guidance on Cancer Services: Improving supportive and palliative care for adults with cancer manual. (draft copy). London: NICE.

NHS Executive. (1999)Guidance on Commissioning Cancer Services: Improving outcomes in gynaecological cancer. the manual. London: DH.

Rustoen, T., Hanestad, B. (1998)Nursing intervention to increase hope in cancer patients. Journal of Clinical Nursing 7: 19-27.

Slaninka, S.C. (1992)Support groups help cancer patients reduce stress; enhance healing. Journal of Practical Nursing 12: 6-11.

Spiegel, D., Bloom, J., Yalom, I. (1981)Group support for patients with metastatic cancer. Archives of General Psychiatry 38: 527-533.

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