Telephone helpline to support people with breast cancer
This article discusses the setting up of a a telephone helpline to support people with breast cancer.
Dean, A., Scanlon, K. (2007) A telephone helpline to support people with breast cancer. www.nursingtimes.net
VOL: 103, ISSUE: 42, PAGE NO: 30-33
Antonia Dean, BSc, DipOnc, Cert Counselling; Karen Scanlon, MSc
Antonia Dean is clinical nurse specialist; Karen Scanlon is research and evaluation manager; both at Breast Cancer Care
Breast cancer is the most common female cancer in the UK and there is evidence to suggest those diagnosed will have a variety of information and support needs. This article seeks to explore the role of Breast Cancer Care’s free telephone helpline in supporting people diagnosed with breast cancer and presents the results of a questionnaire survey to callers using the helpline during January-March 2007. Results indicate that callers mainly use the helpline to access information about their own breast cancer, although a large proportion also call for emotional support. Reported satisfaction levels are high and most callers would recommend the service to others. However, results suggest the helpline needs to be made more accessible for people from different black and ethnic minority groups and those in older age groups. Possible reasons for this are discussed as well as strategies to address this.
The Department of Health (2005) recognises that many patients wish to receive information about their illness and treatment and that this tends to reduce anxiety and increase satisfaction (DH, 2005). This message was also made explicit by the NHS Cancer Plan (DH, 2000). The general public is increasingly turning to telephone helplines for information and support about health and illness, and nurses are meeting this demand through a variety of services.
Some helplines, such as NHS Direct, offer medical advice and have developed from a need to manage healthcare resources as efficiently as possible (Strom et al, 2006). Others, mainly funded by the voluntary sector, seek to complement those provided by the NHS, giving callers information and the time and space to explore any issues or questions they may have about their condition. It is less common for these types of helpline to offer medical advice, and they often use a model that emphasises empowering people to make their own decisions.
Helplines run by voluntary sector organisations will be independently regulated. Many conform to the standards set by a regulatory body called the Telephone Helplines Association, which assesses helpline services and their policies against a set of quality standards (THA, 2000).
There are, perhaps, more helplines focusing on cancer than any other condition; these include those provided by Breast Cancer Care, Cancerbackup, Macmillan Cancer Support and the Prostate Cancer Charity. People may call before or after receiving a diagnosis, during treatment and after treatment has finished (Jefford et al, 2005). Helplines are also normally open to receiving calls from friends or family of those with a diagnosis.
Information and support needs in breast cancer
Approximately 44,000 women are diagnosed with breast cancer in the UK every year (Cancer Research UK, 2007). Breast cancer patients have a variety of information and support needs that may occur at different points along their cancer journey (Lindop and Cannon, 2001; Rees and Bath, 2000). Not only will these information needs change over time but patients may require staggered information to avoid being bombarded with so much that they are unable to take it in (Ziebland, 2004).
Following a comprehensive literature review, Luker et al (1996) recommended that information-giving becomes an ongoing process, not restricted to times of diagnosis or treatment. There is evidence to suggest that long-term survivors of breast cancer may have information and support needs that go unmet after they have been ‘discharged’ from specialist services (Vivar and McQueen, 2005). This has implications for NHS services that may already be short of resources and could highlight a role for the voluntary sector.
Rees and Bath (2000) identified that people may seek information for several reasons, including: to gain control; to reduce anxiety; to aid decision-making; and to facilitate coping. This is reinforced by the NICE (2002) guidance on improving outcomes for people with breast cancer, which emphasises that good communication is likely to reduce anger and anxiety, and to increase their confidence and their chance of receiving the treatment that is best for.
Friends and relatives may also use helplines to seek information and support. Chalmers et al (2003) described the information and support needs of daughters and sisters of women with breast cancer, and found that information on personal risk of breast cancer was rated as extremely important by the participants in the study.
Interviews with informal carers of women receiving treatment for breast cancer also highlighted their expressed need for information about cures, treatment and the spread of disease (Beaver and Witham, 2007).
While a relatively small number of men are diagnosed with breast cancer each year - approximately 330 (Cancer Research UK, 2007) - the evidence suggests that they have difficulties in accessing information and support that is relevant to them. In one study half of the sample of 161 men reported that they wanted much more information than they had received (Iredale et al, 2006).
There is little research on the information and support needs of women with benign breast conditions. However, the evidence that does exist suggests that a significant proportion are not reassured by their diagnosis and continue to feel high levels of anxiety (Meechan et al, 2005).
Impact of the media
Media portrayal of breast cancer may also increase the public need for helpline services. Kitzinger (2002) identified that breast cancer was seen as a very ‘media-friendly’ disease, and was seven times as likely to become headline news as lung cancer. Media portrayal of breast cancer was found to have a strong impact on the women interviewed for the study (both healthy women and those with a history of breast cancer), influencing their perceptions of the disease and sometimes increasing their anxiety.
In our experience people often use telephone helplines to request a professional perspective on the story in question, wanting to check the validity of what has been printed or broadcast. This is reflected by the experience of other cancer helplines that also report the impact of the media on demand for the service (Ross, 2007).
Evaluation of Breast Cancer Care’s helpline
Breast Cancer Care’s helpline began informally more than 30 years ago and, as the organisation has expanded, the helpline has become a national freephone service. It is staffed by a team of specialist breast care nurses and trained helpline staff who have had personal and/or professional experience of breast cancer. The helpline staff offer information and support to callers in addition to access or signposting to other services provided by Breast Cancer Care and other organisations.
The aim of the survey was to identify the needs and profile of callers using a telephone helpline specialising in breast cancer and breast health concerns. It also aimed to assess their satisfaction with the service.
A semi-structured questionnaire was developed based on feedback from those working at the helpline. Clients calling the helpline between January and March 2007 were invited to take part in a small survey to examine their experience of using the service. Some 700 questionnaires were distributed and 193 returned (28% response rate). Responses were inputted into the statistical software package SPSS and descriptive analyses were carried out. A thematic analysis was carried out on the responses to the open, free-text questions.
As might be expected, the majority of respondents were women (95%). Seven were men, four of whom were calling about their own breast cancer. In terms of the ethnic profile of callers, 79% were white British, 1% Irish, 3% white other, 1% mixed ethnicity, 2% black Caribbean and 0.5 % were Chinese. Some 12% of respondents classed themselves as disabled. Over half (58%) were over 50 years old, with approximately half of those falling within the 50-59 years age group.
The majority of respondents called the helpline about themselves (n=167), with the remainder calling about a family member, friend, partner or another person (Fig 1). Most were calling about their own breast cancer (70%, n=103 out of 148 responding to this question), while others were calling about a non-cancerous breast condition (12%, n=17 out of 148) and others were calling about secondary breast cancer (3%, n=5).
Respondents reported calling the helpline primarily to gain information (86%, n=166). Just under half (49%, n=94) also called for emotional support. Other reasons for calling included requesting publications or information about other services. Many clients told us that they called for all the above reasons.
Over one-third (35%) of respondents had called the helpline previously (n=67), while 64% (n=123) were first-time users; the majority got through the first time they tried (88%, n=169). Respondents heard about the helpline from a variety of sources, most commonly from their breast care nurse (28%, n=54) or the Breast Cancer Care website (23%, n=44). Only 62% (n=120) were aware the service was free.
Experience of calling the helpline
The vast majority (95%, n=183) of respondents found the information they received from the helpline was clear and easy to understand. Some 93% (n=180) felt it was relevant to their situation, and the majority (95%, n=183) felt that the helpline worker had understood their needs and 83% (n=161) felt that the information or support they received had helped them, or would help them in the future to make informed choices.
Overall, the majority of respondents were satisfied with their experience of calling the helpline (93%, n=180) (Fig 2). Five felt unsure as to whether they were satisfied , while four were not satisfied. The vast majority (95%, n=184) said they would recommend the helpline to others. While expectations/satisfaction had not been met for all clients, none felt that they would not recommend the helpline to someone.
Respondents expressed a high level of satisfaction with the service, reporting that they found the information they received relevant to their situation.
Callers often had a complex set of needs that encompassed information, emotional support and signposting to other services. This supports research from other helplines showing that callers often present with a variety of needs, and that psychosocial and emotional needs will often coexist alongside more straightforward requests for information (Collett et al, 2006; Jefford et al, 2005).
Some 95% of our respondents reported that they felt the helpline worker they spoke to had understood their needs. In addition, the high numbers of respondents who were happy with the helpline and would recommend it to someone else suggest it is an effective service. However, as Jefford et al (2005) pointed out in their evaluation, while satisfaction levels of helpline services are often high, there is little research on specific patient outcomes to measure their impact. Our survey elicited that 83% of respondents felt better able to make informed choices after their contact with the helpline.
Other questions were structured around discovering whether respondents felt they had been given useful, easy-to-understand information and whether the tone of the call was helpful in encouraging them to fully discuss their concerns.
There were no other questions to identify any difference the call had made to the individual, and this suggests a way of improving future helpline surveys.
It is possible that the data provided here could be affected by an element of selection bias. Helpline workers were encouraged to ask all callers over the duration of the survey whether they would consent to a survey being posted to them, except those whom the helpline worker felt it would have been inappropriate to ask. Callers who appeared extremely distressed might not always have been asked to complete a survey. While this is consistent with the approach of the helpline - to put the experience of the caller above other considerations and to handle all calls with sensitivity and tact - it might have affected the results of the survey.
The high proportion of respondents from a white British ethnicity suggests the helpline needs to do more to promote access. This may reflect wider problems within the health service. Evidence suggests that a lack of service engagement by cultural or ethnic groups may be caused by a number of factors relating both to perceptions held by the groups and to service design, which may not reflect the culturally sensitive needs of all potential users (Karlsen, 2007).
Breast Cancer Care is committed to providing a high-quality service to a wide range of communities and is investigating further opportunities to increase awareness of our services. Previous initiatives we have undertaken to spread the health promotion message of breast awareness have included visiting community groups, creating radio dramas aimed at specific audiences and translating many of our breast cancer-related publications into a variety of languages.
Research from focus groups suggests that women from an Asian or Arab background may hold historical or cultural beliefs that may inhibit them from discussing breast concerns or practising breast awareness (Scanlon and Wood, 2005). This may mean that people from some cultures would feel uncomfortable using a telephone helpline to discuss breast-related issues.
Nevertheless, the onus remains on the organisation to ensure that people are aware of the service, whether or not they choose to use it, and that research evidence on the needs of hard-to-reach communities is used to shape the development of new services. All helpline staff attend diversity training workshops. It may also be important to raise awareness that the helpline offers the option of a translator for those not fluent or confident with English.
It was also interesting to note that around one-third of our callers were not aware that it was a free call; this raises the issue that some people from poorer backgrounds may be less likely to call if they thought they would have to pay for the service. Moreover, it may have inhibited the 38% of respondents who were unaware of the free nature of the call from discussing their concerns fully. Promoting the fact that all Breast Cancer Care’s services are free therefore remains a priority.
Information about our caller profile indicated that 58% of respondents were over 50 years old. While the highest number of detected cases of new breast cancers are in the 55-59-year age group (CRUK, 2007) - reflected in the high percentage of respondents in this bracket - it is known that 80% of all breast cancers occur in women over 50. This suggests that older women are under-represented among helpline users.
There is some debate about the information needs of older women with breast cancer. Data from Luker et al (1996) indicated that the information needs of older women were no different to those of younger breast cancer patients but other research suggests that younger and middle-aged women (20-53 years) have more information needs than older women (54 years plus) (Lindop and Cannon, 2001). A qualitative study looking at older women found that participants were less likely to take an active role in treatment decision-making, often preferring to leave it in the hands of medical professionals (Leydon et al, 2000). Whether older women have less need of a helpline service or whether they prefer to receive information and support from alternative services is not clear and is an area that merits further research.
Breast Cancer Care is working with King’s College London on a two-year project to identify and explore potential barriers to uptake of its services. The organisation is committed to developing a strategy to address this.
While callers were most likely to have heard about the helpline from their breast care nurse, it is interesting to note that such a large percentage had heard about it from other sources unrelated to their healthcare team. This is supported by research by Ziebland (2004), which indicates that people often find out about the voluntary sector organisations by chance rather than by direct healthcare professional recommendation.
The DH (2004) has expressed its commitment to working with the voluntary sector, and recognises the benefits to patient care of the varied services provided by charitable organisations that can complement those provided by the NHS. There is little research to indicate the perceptions of NHS healthcare professionals about referring patients to external helplines, but Collett et al (2006) suggested that there may be a fear that inaccurate or misleading information will be provided.
Increasing healthcare professional awareness and confidence in services provided by the voluntary sector may in turn lead to more patients being given the details of voluntary sector organisations. These organisations have the potential to make a positive difference to the lives of people with diseases such as breast cancer.
The helpline survey has produced some reassuring results, suggesting that most callers are satisfied with the service. However it also poses some interesting challenges for the future development of the helpline, highlighting the need to raise awareness, access and confidence in the service to a wider range of communities and healthcare professionals within the NHS. It has also provided suggestions for how we might alter the survey in forthcoming years to better ascertain the psychosocial outcomes for people with breast cancer of using telephone helplines. This could be achieved by asking future respondents to rate the effect of using the helpline on various specific measures of psychosocial well-being. Since helplines often aim to empower callers, it would also be appropriate to evaluate measures such as whether calling affected or improved communication with the healthcare professionals involved in their care. It might also be helpful to consider a follow-up survey after a set period to evaluate if any effects developed or altered over time. Implications for further research also include the identification of potential barriers for groups often considered hard to reach in accessing services.
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