- Email: [email protected]
Information giving procedures for patients having radiotherapy: a national perspective of practice in the United Kingdom
Radiography (2001) 7, 181–186 doi:10.1053/radi.2001.0326, available online at http://www.idealibrary.com on
Information giving procedures for patients having radiotherapy: a national perspective of practice in the United Kingdom M. Hammick, MSc, EdD, TDCR* C. Featherstone, (formerly) Senior Lecturer, BSc, MPhil† and L. Benrud-Larson, Research Fellow, PhD *School of Health Care, Oxford Brookes University, U.K. †Applied Social Sciences Faculty, Bath Spa University College, U.K. ‡Autonomic Disorders Laboratory, Mayo Clinic, U.S.A. (Received 28 July 2000; revised 23 March 2001; accepted 24 May 2001)
Key words: information; radiotherapy; non-English speaking; interpreter services.
Purpose: The study aimed to survey information-giving procedures in United Kingdom radiotherapy departments. There was a dual focus to the work. A general look at the process and procedures involved in giving information to patients, and an enquiry into the availability of information to patients whose first language is not English. Methods: Superintendent radiographers in United Kingdom radiotherapy departments (n=63) were sent a self-completion questionnaire which included questions on key demographic variables. Results: Thirty-two questionnaires were returned. Three exclusions from analyses, due to incomplete data, gave a sample size of 29. Data were analysed using Statistical Package for Social Scientists (SPSS) . In almost all departments information about radiotherapy to patients was widely available, except for patients whose first language is not English. Departments in inner-city settings provided written information in a variety of languages other than English more often than others (P=0.003). For these patients interpreters were available but only a small number of responders reported using formal interpreter services. A third of the departments provided a formal telephone-based sypport system but the majority offered unofficial or informal telephone-based support systems, most usually in working hours only. Conclusions: The practice of giving information about radiotherapy to English speaking patients is generally sound. Patients who do not speak or read English are not likely to receive the same high level of service with regard to written information, and for many of these patients professional interpreter services are unavailable. Patient support is often given via the telephone but most generally as an unplanned disruption to the other work of radiotherapy staff. © 2001 The College of Radiographers
Introduction This paper reports on the information interface between patient and practitioner in relation to radiotherapy and support services for United Correspondence should be addressed to: Dr Marilyn Hammick, Reader in Interprofessional Education, School of Health Care, Oxford Brookes University, Level 4 Academic Centre, John Radcliffe Hospital, Headington, Oxford OX3 9DU, U.K. Tel: 0779 958 8972; Fax: 01865 220188; E-mail: [email protected]
1078–8174/01/030181+06 $35.00/0
Kingdom (U.K.) cancer patients, including the provision of telephone support and services for English and non-English speaking patients. The information needs of cancer patients are frequently unmet [1]. Whilst there are examples of good practice for the majority of patients, the provision of information about cancer and its treatments for non-English speaking patients is patchy. Most patients with cancer express the desire for information about their disease and © 2001 The College of Radiographers
182
cancer treatments, with treatment success rates, what the future would bring and prognostic details all topics of frequently cited questions [2]. The need for information applies whether the news is positive or negative [3, 4] and the desire for information is common to all patients, including children and Asian patients [5, 6]. However, focused information is often unavailable and the effectiveness of information giving procedures in radiotherapy departments needs evaluation [7]. Knowing about their disease and its treatment enables the patient to participate in the treatment decisions and influences their experience of the decision-making process [4, 8]. It is likely that, during radiotherapy where patient participation is very limited, adequate information will enhance the overall experience of the treatment and the patient’s well being. Drop-in cancer support and information services are often provided within health care settings [9] and numbers of these have increased in the last ten years. One national, organization lists 450 such services [10]. One referral route to this type of support is via the radiographer, with, for example, radiographer referral rates for counselling varying from 3%–12% in one centre [9]. Where patients can self-refer they need access to the necessary information. Doctors less frequently refer patients to these services than other health care practitioners and the radiographer has a role in facilitating professional and self-referral [11]. Radiotherapy patients express the need for consistent information about treatment side effects and how to deal with these, how the treatment works, and the tests and procedures that may accompany treatment [14]. There is evidence that the planning of radiotherapy and treatment side effects may be poorly understood [12]. Fallowfield et al., assert that ’Patients cannot marshall effective coping strategies if they have inadequate information and poorly informed patients may create worst scenarios for themselves than the facts actually warrant’ [3]. Often, the doctor gives information and, in general, this is not skilfully done [3]. The responsibility for patient support through the provision of information is a recognized part of the role of the radiographer, who has the specialist skills to do this important task [13]. The radiographer-patient discussion is increasingly supplemented by written information and this combination has been shown to be valuable [8]. Patients may also use the telephone to contact the treatment team for information and support and
Hammick et al.
this is reported as a feasible support mechanism [15]. Telephone communication provides opportunities for discussion about patients’, and their families’, concerns, and can facilitate referral [16–18]. The previous discussion focused on patients who speak and read English as a first language. Literature reviewed for this work did not permit a similar discussion for patients who speak or read very little or no English. The 1991 census gives figures of 5.5% for the total ethnic minority population in Britain, with large variations in the proportion living in urban and rural areas [19]. A significant number of these people may have some difficulties with understanding verbal and written English. In our multi-cultural society a wide range of languages, e.g. Greek, Arabic, Bosnian, Chinese and French, may be spoken by patients having radiotherapy, all of whom have the right to expect to be able to understand and give informed consent to their treatments [20]. Ideally, they require interpreter services to fully participate in treatment decision making, give informed consent and understand therapeutic procedures and their impact. The Health Education Authority suggests that there are few resources about cancer for ethnic minority patients [21].
Method Self-completion questionnaires were mailed to superintendent radiographers in 63 U.K. radiotherapy departments. A letter explaining the study rationale and asking the recipient to pass the questionnaire on to a colleague, if s/he was not the most suitable person to complete it, accompanied the survey tool. The questionnaire was piloted in three departments. Unless specified, the questions related to patients with English as their first language. Data-analysis After examining descriptive data, a series of Chi-squared analyses were conducted to investigate the relationship between hospital characteristics (e.g. location) and information-giving procedures. Bonferroni adjustments were used to correct for familywise error rate inflation due to multiple comparisons, resulting in an =0.006 for each test. Data were analysed using SPSS. Given
Information for patients having radiotherapy
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the small sample size, it is important to interpret results with caution and all results should be considered preliminary.
Table 1. Information-giving procedures in radiotherapy departments across the U.K.
Results
Provide written information about radiotherapy Provide information specific to the department as well as from outside agencies Information available in non-English languages
Descriptive data Thirty-two questionnaires were returned, resulting in a response rate of 51%. Of these, three were excluded from analysis due to incomplete data. The final sample size was 29. Superintendent radiographers were the most typical respondents (39%), followed by radiotherapy managers (21%). The remaining questionnaires were completed by a variety of professionals, including senior radiographers, patient information and support personnel, a clinical director, and a nurse counsellor. Fifty-nine percent of hospitals surveyed were located in an urban setting, 24% in an inner-city setting, and 17% in a semi-rural area. In most radiotherapy departments (66%), patients had to travel a ’medium’ distance for treatment (vs ’long’ or ’short’ distances), which was typically performed on an outpatient basis. No radiotherapy department surveyed reported treating more than 39% of their patients on an inpatient basis.
Information-giving procedures The survey included several questions regarding standard information-giving procedures for patients receiving radiotherapy and Table 1 presents descriptive data for these. All departments surveyed reported providing patients with written information about radiotherapy. Hospitals did differ, however, in provision of written information in languages other than English. Specifically, there was a significant relationship between hospital location and availability of information in nonEnglish languages, 2 =11.45, P=0.003. A posthoc examination of the standardized residuals revealed that one cell, in particular, was contributing to this significant finding. Specifically, only departments located in inner-city settings provided written information in a variety of languages more often than would be expected by chance. No additional significant relationships were found between hospital characteristics and informationgiving procedures.
Characteristic surveyed
How written information is given to patients Radiography staff Nursing staff Physicians Patient information room Waiting rooms
Percentage of departments 100% 97% 28%
100%1 90% 66% 31% 90%
1
Please note that the percentages given in this subsection of Table 1 are not mutually exclusive, i.e. departments provide information in more than one way.
Table 2. Availability of interpreter services in radiotherapy departments across the U.K. Characteristic surveyed
Any interpreter services (formal or informal) –and of these departments Formal interpreter service Informal interpreter service Type of interpreter service unspecified –also in these departments Face-to-face interpreter services available Telephone interpreter services available 24 h telephone interpreter services
Percentage of departments 76% 18% 32% 50% 91%1 68% 23%
1
Please note that the percentages given in this subsection of Table 2 are not mutually exclusive, i.e. more than one type of service is available.
Interpreter services Table 2 presents descriptive information regarding availability of interpreter services in the departments surveyed. Although most hospitals reported having interpreter services, only a small percentage (18%) clearly utilized a formal interpreter agency. Results of Chi-square analyses revealed no significant relationships between hospital characteristics (e.g. location) and the availability of interpreter services (all Ps>0.006 and 0.05).
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Table 3. Availability of telephone support/advisory services for patients receiving radiotherapy in hospitals across the U.K. Characteristic surveyed
Formal telephone support services available –and of these departments Available 24 h per day Available during working hours only ‘In call’ system (patients call staff) ‘Out call’ system (staff call patients) Unofficial/informal telephone support services available –and of these departments Open access to radiographer during working hours Access to health care professionals in addition to radiographers (e.g. counsellors, nurses) Frequency of calls several per day several per week several per month unknown
Percentage of departments 38%1 18% 82% 46% 9%
Table 4. How information about support services is provided to patients receiving radiotherapy in hospitals across the U.K. Characteristic surveyed
Staff (word-of-mouth) Notice boards throughout the hospital Patient information room
Percentage of departments 93%1 79% 31%
1
Please note that the percentages given in Table 4 are not mutually exclusive, i.e. departments provide information in more than one way.
86%
Discussion 100%
Information-giving procedures 76%
32% 36% 28% 8%
1
Please note that the percentages given in the main sections and subsections of Table 3 are not mutually exclusive, i.e. departments provide more than one type of service.
Telephone patient support/advisory services Table 3 presents descriptive information regarding the availability of telephone support services for radiotherapy patients. Only slightly more than one third of the departments surveyed reported having a formal telephone-based support system for patients. These services are typically operated by radiotherapy and/or nursing staff and are available to patients both during and after treatment. Chisquare analyses revealed no significant relationships between hospital characteristics and the availability of a telephone-based support system for patients (all Ps>0.006 and 0.05). Information regarding the availability of patient support services appears to be transferred primarily by informal word-of-mouth or postings throughout the hospital (Table 4). Only one third of radiotherapy departments reported having patient information rooms.
The survey shows that is it now routine practice to provide radiotherapy patients with written information about their disease and its treatment. Whilst generic information is used, the sound practice of complementing this with department-specific literature is very common. Information giving by health care professionals, in a caring and sensitive manner, is clearly an important aspect of promoting patient autonomy and should be central to practice [4]. Support of this nature is also provided by pamphlets, e.g. CancerBACUP booklets, the value of which lies in the specificity and expertise of the information supplied, and by telephone support lines, an aspect discussed below. Departmental literature, with its very individual approach, can clearly provide even more specificity than the well-written literature from patient organizations and other sources, and is an important part of the information-giving practice for radiotherapy patients. This survey shows that these practices are widespread and independent of department size or location. Information is only of value if it reaches the patient and is read and understood. The survey shows that the practice of giving patients written literature by the radiographer, the key member of the cancer care team during a course of radiotherapy, happens in all departments. The importance of not simply relying on patients to pick up literature is emphasized by the participation of other practitioners in the handing out of leaflets etc. with the added insurance of making these available in the place where radiotherapy patients often spend some time. The picture is one of good practice throughout the U.K., in respect of the
Information for patients having radiotherapy
availability of written information for patients who have English as a first language. Interpreter services and availability of information for non-English speaking patients Provision is poor for those who do not have English as their first language. Information in a language other than English is more likely in inner-city departments. This is not unexpected as the non-English speaking population is more often to be found living here than in other parts of the country [19]. This general distribution does not, however, mean that non-English speaking patients will not present to non-urban radiotherapy departments and, even for those attending for radiotherapy in an urban department, there is only small possibility that information will be available in their first language. A limitation of our survey is the lack of data collected on the ethnic origins of the patient population within the participating departments. Interpreter services provide an alternative way for non-English speaking patients to find out about their disease and its treatments. Additionally, interpretation facilitates two-way communications between patient and practitioner throughout diagnosis, treatment and during follow-up time. It is, arguably, of unique importance for the successful planning and implementation of accurate and reproducible radiotherapy for non-English speaking patients. Interpreter services are available in many departments but the nature of the service is diverse and there is little use of agencies for interpretation. The prevalence of face-to-face interpretation provided indicates that the interpreter is usually nonprofessional and may be untrained in this specialist role. The use of telephone interpretation, albeit limited in many departments to working hours, possibly by budgetary constraints, does enable accurate and anonymous translation. Both of these characteristics of interpretation are important in health care where discussions about body function and treatment choice are but two vital components of the professional-patient communication. Important aspects of the radiotherapy process are frequently misunderstood when English is the first language of both patient and practitioner [12]. This indicates scope for equal, if not increased, problems where there is no language in common and the need for non-English speaking patients to communicate through a trained interpreter.
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Interpreter agencies have the advantage of availability close to the time of need. In contrast, the use of hospital employees as volunteers, and the frequent practice, most usually for inpatients, of waiting until an English speaking family member is with the patient, is less than ideal. Another disadvantage of the non-professional interpreter is the nature of their relationship with the patient. Family members are already part of the patients’ cancer journey and the role of interpreter may be emotionally difficult for them. Employees may also become too involved in the patient’s care as time progresses and find it difficult to just translate and not to elaborate or add their own interpretation. The results presented here suggest that further research is needed into the adequacy of information and communication with non-English speaking patients who attend for radiotherapy. The present provision appears to be less than ideal in many departments. Telephone support services Telephone support for radiotherapy patients during and after their treatment is widely provided but this service is not formally recognized. It most usually operates as open access to radiographers and other members of the cancer care team with unplanned interruptions to their work several times a day in just less than a third of departments. These disturbances have the potential to affect the work of radiographers and others, and may result in a less-than-perfect interaction with the patient. There is a need to provide patient support at a distance in a way that minimizes disruption to the working life of the department and to recognize the need to resource such a service.
Conclusion The survey reported here confirms that information-giving practices for English speaking patients attending for radiotherapy in U.K. hospitals are sound. Local and generic information is generally available through a wide variety of sources, although patient information rooms are not common. The provision of telephone support is widespread but as an unrecognized part of the work of staff. The impact on patients and staff of this unplanned disruption to work is worthy of further investigation.
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In contrast, information and interpreter services are not widely available for patients who do not speak English as a first language. This applies even in locations where patients from ethnic minority populations are likely to attend for treatment. The results suggest that departments need to investigate information provision in non-English languages in light of their patient population(s). An assessment of when formal interpreter services are needed to offer an equal information-giving service to all patients, regardless of their ability to read and speak English, is also recommended.
10.
Acknowledgement
13.
9.
11.
12.
Thanks are expressed to all the radiotherapy staff who participated in this survey. 14.
References 1. Meredith C, Symonds P, Webster L et al. Information needs of cancer patients in West Scotland: cross sectional survey of patient’s views. Br Med J 1996; 313: 724–26. 2. Griffiths M, Leek C. Patient education needs: opinions of oncology nurses and their patients. Oncol Nurs Forum 1995; 22 (1): 139–44. 3. Fallowfield L, Ford S, Lewis S. No news is not good news: information preferences of patients with cancer. Psycho-Oncol 1995; 4: 197–202. 4. Anonymous. Patient choice in managing cancer. Drugs and Therapeutic Bulletin 1993; 31 (20): 77–9. 5. Ellis R, Leventhal B. Information needs and decisionmaking preferences of children with cancer. Psycho-Oncol 1993; 2: 277–84. 6. Fielding R, Hung J. preferences for information and involvement in decision during cancer care among a Hong Kong population. Psycho-Oncol 1996; 5: 321–29. 7. Mackenzie C. Patient’s perceptions of radiotherapy treatment. In: Paterson A, Price R, eds. Current Topics in Radiography 2. London: WB Saunders Ltd, 1996: pp. 105– 14. 8. Turner S, Maher EJ, Young T, Young I, Vaughan Hudson G. What are the informational needs for cancer patients
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involved in treatment decisions? An experienced surrogate study in Hodgkin’s Disease. Brit J Cancer 1996; 73: 222–7. Young J, Swallow A, Maher J. The impact of a drop-in centre on the development of a cancer counselling service. (Abstract) Psycho-Oncol 1996; 5: 364. Brennan J, Sheard T. Psychosocial support and therapy in cancer care. Eur J Cancer Care 1994; 1 (3): 136–9. Edgar L, Remmmer J, Rosberger Z, Rapkin B. An oncology volunteer support organisation: the benefits and fit within the health care system. Psycho-Oncol 1996; 5: 331–4. Fieler VK, Saidel Wlaasowicz G, Mitchell ML, Jones LS, Johnson JE. Information preferences of patients undergoing radiation therapy. Oncol Nurs Forum 1996; 23 (10): 1603–8. Hammick M, Last A, Tait DM. Knowledge and perception regarding radiotherapy and radiation in patients receiving radiotherapy: a qualitative study. Eur J Cancer Care 1998; 7: 103–12. Short C, Griffiths S. Radiotherapy: developments, contradictions and dilemmas. Radiography 1996; 2 (3): 177–89. Marcus AC, Cella D, Sedlacek S et al. Psychosocial counselling of cancer patients by telephone: a brief note on patient acceptance of an outcall strategy. Psycho-Oncol 1993; 2 (3): 209–14. Hagopian GA, Rubenstein JH. Effects of telephone call interventions on patients’ well-being in a radiation therapy departments. Cancer Nurs 1990; 13 (6): 339– 44. Hornblow AR. The evolution and effectiveness of telephone counselling services. Hosp Community Psych 1986; 37 (7): 731–3. Rainey LC. Cancer counselling by telephone help-line: the UCLA Psychosocial Cancer Counselling Line Public Health Rep. 1985; 100 (3): 308–15. Karmi G. The Ethnic Handbook A Factfile for Health Care Professionals. Oxford: Blackwell Science Ltd, 1996. Hammick M, Smith J, Corsini L, Hamlyn L, Peirce V. Radiotherapy patients in the United Kingdom: meeting cultural and spiritual needs. J Cancer Care 1996; 6 (3): 113–5. Health Education Authority. Health-Related Resources for Black and Minority Ethnic Groups. London: Health Education Authority, 1994.
Information giving procedures for patients having radiotherapy: a national perspective of practice in the United Kingdom M. Hammick, MSc, EdD, TDCR* C. Featherstone, (formerly) Senior Lecturer, BSc, MPhil† and L. Benrud-Larson, Research Fellow, PhD *School of Health Care, Oxford Brookes University, U.K. †Applied Social Sciences Faculty, Bath Spa University College, U.K. ‡Autonomic Disorders Laboratory, Mayo Clinic, U.S.A. (Received 28 July 2000; revised 23 March 2001; accepted 24 May 2001)
Key words: information; radiotherapy; non-English speaking; interpreter services.
Purpose: The study aimed to survey information-giving procedures in United Kingdom radiotherapy departments. There was a dual focus to the work. A general look at the process and procedures involved in giving information to patients, and an enquiry into the availability of information to patients whose first language is not English. Methods: Superintendent radiographers in United Kingdom radiotherapy departments (n=63) were sent a self-completion questionnaire which included questions on key demographic variables. Results: Thirty-two questionnaires were returned. Three exclusions from analyses, due to incomplete data, gave a sample size of 29. Data were analysed using Statistical Package for Social Scientists (SPSS) . In almost all departments information about radiotherapy to patients was widely available, except for patients whose first language is not English. Departments in inner-city settings provided written information in a variety of languages other than English more often than others (P=0.003). For these patients interpreters were available but only a small number of responders reported using formal interpreter services. A third of the departments provided a formal telephone-based sypport system but the majority offered unofficial or informal telephone-based support systems, most usually in working hours only. Conclusions: The practice of giving information about radiotherapy to English speaking patients is generally sound. Patients who do not speak or read English are not likely to receive the same high level of service with regard to written information, and for many of these patients professional interpreter services are unavailable. Patient support is often given via the telephone but most generally as an unplanned disruption to the other work of radiotherapy staff. © 2001 The College of Radiographers
Introduction This paper reports on the information interface between patient and practitioner in relation to radiotherapy and support services for United Correspondence should be addressed to: Dr Marilyn Hammick, Reader in Interprofessional Education, School of Health Care, Oxford Brookes University, Level 4 Academic Centre, John Radcliffe Hospital, Headington, Oxford OX3 9DU, U.K. Tel: 0779 958 8972; Fax: 01865 220188; E-mail: [email protected]
1078–8174/01/030181+06 $35.00/0
Kingdom (U.K.) cancer patients, including the provision of telephone support and services for English and non-English speaking patients. The information needs of cancer patients are frequently unmet [1]. Whilst there are examples of good practice for the majority of patients, the provision of information about cancer and its treatments for non-English speaking patients is patchy. Most patients with cancer express the desire for information about their disease and © 2001 The College of Radiographers
182
cancer treatments, with treatment success rates, what the future would bring and prognostic details all topics of frequently cited questions [2]. The need for information applies whether the news is positive or negative [3, 4] and the desire for information is common to all patients, including children and Asian patients [5, 6]. However, focused information is often unavailable and the effectiveness of information giving procedures in radiotherapy departments needs evaluation [7]. Knowing about their disease and its treatment enables the patient to participate in the treatment decisions and influences their experience of the decision-making process [4, 8]. It is likely that, during radiotherapy where patient participation is very limited, adequate information will enhance the overall experience of the treatment and the patient’s well being. Drop-in cancer support and information services are often provided within health care settings [9] and numbers of these have increased in the last ten years. One national, organization lists 450 such services [10]. One referral route to this type of support is via the radiographer, with, for example, radiographer referral rates for counselling varying from 3%–12% in one centre [9]. Where patients can self-refer they need access to the necessary information. Doctors less frequently refer patients to these services than other health care practitioners and the radiographer has a role in facilitating professional and self-referral [11]. Radiotherapy patients express the need for consistent information about treatment side effects and how to deal with these, how the treatment works, and the tests and procedures that may accompany treatment [14]. There is evidence that the planning of radiotherapy and treatment side effects may be poorly understood [12]. Fallowfield et al., assert that ’Patients cannot marshall effective coping strategies if they have inadequate information and poorly informed patients may create worst scenarios for themselves than the facts actually warrant’ [3]. Often, the doctor gives information and, in general, this is not skilfully done [3]. The responsibility for patient support through the provision of information is a recognized part of the role of the radiographer, who has the specialist skills to do this important task [13]. The radiographer-patient discussion is increasingly supplemented by written information and this combination has been shown to be valuable [8]. Patients may also use the telephone to contact the treatment team for information and support and
Hammick et al.
this is reported as a feasible support mechanism [15]. Telephone communication provides opportunities for discussion about patients’, and their families’, concerns, and can facilitate referral [16–18]. The previous discussion focused on patients who speak and read English as a first language. Literature reviewed for this work did not permit a similar discussion for patients who speak or read very little or no English. The 1991 census gives figures of 5.5% for the total ethnic minority population in Britain, with large variations in the proportion living in urban and rural areas [19]. A significant number of these people may have some difficulties with understanding verbal and written English. In our multi-cultural society a wide range of languages, e.g. Greek, Arabic, Bosnian, Chinese and French, may be spoken by patients having radiotherapy, all of whom have the right to expect to be able to understand and give informed consent to their treatments [20]. Ideally, they require interpreter services to fully participate in treatment decision making, give informed consent and understand therapeutic procedures and their impact. The Health Education Authority suggests that there are few resources about cancer for ethnic minority patients [21].
Method Self-completion questionnaires were mailed to superintendent radiographers in 63 U.K. radiotherapy departments. A letter explaining the study rationale and asking the recipient to pass the questionnaire on to a colleague, if s/he was not the most suitable person to complete it, accompanied the survey tool. The questionnaire was piloted in three departments. Unless specified, the questions related to patients with English as their first language. Data-analysis After examining descriptive data, a series of Chi-squared analyses were conducted to investigate the relationship between hospital characteristics (e.g. location) and information-giving procedures. Bonferroni adjustments were used to correct for familywise error rate inflation due to multiple comparisons, resulting in an =0.006 for each test. Data were analysed using SPSS. Given
Information for patients having radiotherapy
183
the small sample size, it is important to interpret results with caution and all results should be considered preliminary.
Table 1. Information-giving procedures in radiotherapy departments across the U.K.
Results
Provide written information about radiotherapy Provide information specific to the department as well as from outside agencies Information available in non-English languages
Descriptive data Thirty-two questionnaires were returned, resulting in a response rate of 51%. Of these, three were excluded from analysis due to incomplete data. The final sample size was 29. Superintendent radiographers were the most typical respondents (39%), followed by radiotherapy managers (21%). The remaining questionnaires were completed by a variety of professionals, including senior radiographers, patient information and support personnel, a clinical director, and a nurse counsellor. Fifty-nine percent of hospitals surveyed were located in an urban setting, 24% in an inner-city setting, and 17% in a semi-rural area. In most radiotherapy departments (66%), patients had to travel a ’medium’ distance for treatment (vs ’long’ or ’short’ distances), which was typically performed on an outpatient basis. No radiotherapy department surveyed reported treating more than 39% of their patients on an inpatient basis.
Information-giving procedures The survey included several questions regarding standard information-giving procedures for patients receiving radiotherapy and Table 1 presents descriptive data for these. All departments surveyed reported providing patients with written information about radiotherapy. Hospitals did differ, however, in provision of written information in languages other than English. Specifically, there was a significant relationship between hospital location and availability of information in nonEnglish languages, 2 =11.45, P=0.003. A posthoc examination of the standardized residuals revealed that one cell, in particular, was contributing to this significant finding. Specifically, only departments located in inner-city settings provided written information in a variety of languages more often than would be expected by chance. No additional significant relationships were found between hospital characteristics and informationgiving procedures.
Characteristic surveyed
How written information is given to patients Radiography staff Nursing staff Physicians Patient information room Waiting rooms
Percentage of departments 100% 97% 28%
100%1 90% 66% 31% 90%
1
Please note that the percentages given in this subsection of Table 1 are not mutually exclusive, i.e. departments provide information in more than one way.
Table 2. Availability of interpreter services in radiotherapy departments across the U.K. Characteristic surveyed
Any interpreter services (formal or informal) –and of these departments Formal interpreter service Informal interpreter service Type of interpreter service unspecified –also in these departments Face-to-face interpreter services available Telephone interpreter services available 24 h telephone interpreter services
Percentage of departments 76% 18% 32% 50% 91%1 68% 23%
1
Please note that the percentages given in this subsection of Table 2 are not mutually exclusive, i.e. more than one type of service is available.
Interpreter services Table 2 presents descriptive information regarding availability of interpreter services in the departments surveyed. Although most hospitals reported having interpreter services, only a small percentage (18%) clearly utilized a formal interpreter agency. Results of Chi-square analyses revealed no significant relationships between hospital characteristics (e.g. location) and the availability of interpreter services (all Ps>0.006 and 0.05).
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Table 3. Availability of telephone support/advisory services for patients receiving radiotherapy in hospitals across the U.K. Characteristic surveyed
Formal telephone support services available –and of these departments Available 24 h per day Available during working hours only ‘In call’ system (patients call staff) ‘Out call’ system (staff call patients) Unofficial/informal telephone support services available –and of these departments Open access to radiographer during working hours Access to health care professionals in addition to radiographers (e.g. counsellors, nurses) Frequency of calls several per day several per week several per month unknown
Percentage of departments 38%1 18% 82% 46% 9%
Table 4. How information about support services is provided to patients receiving radiotherapy in hospitals across the U.K. Characteristic surveyed
Staff (word-of-mouth) Notice boards throughout the hospital Patient information room
Percentage of departments 93%1 79% 31%
1
Please note that the percentages given in Table 4 are not mutually exclusive, i.e. departments provide information in more than one way.
86%
Discussion 100%
Information-giving procedures 76%
32% 36% 28% 8%
1
Please note that the percentages given in the main sections and subsections of Table 3 are not mutually exclusive, i.e. departments provide more than one type of service.
Telephone patient support/advisory services Table 3 presents descriptive information regarding the availability of telephone support services for radiotherapy patients. Only slightly more than one third of the departments surveyed reported having a formal telephone-based support system for patients. These services are typically operated by radiotherapy and/or nursing staff and are available to patients both during and after treatment. Chisquare analyses revealed no significant relationships between hospital characteristics and the availability of a telephone-based support system for patients (all Ps>0.006 and 0.05). Information regarding the availability of patient support services appears to be transferred primarily by informal word-of-mouth or postings throughout the hospital (Table 4). Only one third of radiotherapy departments reported having patient information rooms.
The survey shows that is it now routine practice to provide radiotherapy patients with written information about their disease and its treatment. Whilst generic information is used, the sound practice of complementing this with department-specific literature is very common. Information giving by health care professionals, in a caring and sensitive manner, is clearly an important aspect of promoting patient autonomy and should be central to practice [4]. Support of this nature is also provided by pamphlets, e.g. CancerBACUP booklets, the value of which lies in the specificity and expertise of the information supplied, and by telephone support lines, an aspect discussed below. Departmental literature, with its very individual approach, can clearly provide even more specificity than the well-written literature from patient organizations and other sources, and is an important part of the information-giving practice for radiotherapy patients. This survey shows that these practices are widespread and independent of department size or location. Information is only of value if it reaches the patient and is read and understood. The survey shows that the practice of giving patients written literature by the radiographer, the key member of the cancer care team during a course of radiotherapy, happens in all departments. The importance of not simply relying on patients to pick up literature is emphasized by the participation of other practitioners in the handing out of leaflets etc. with the added insurance of making these available in the place where radiotherapy patients often spend some time. The picture is one of good practice throughout the U.K., in respect of the
Information for patients having radiotherapy
availability of written information for patients who have English as a first language. Interpreter services and availability of information for non-English speaking patients Provision is poor for those who do not have English as their first language. Information in a language other than English is more likely in inner-city departments. This is not unexpected as the non-English speaking population is more often to be found living here than in other parts of the country [19]. This general distribution does not, however, mean that non-English speaking patients will not present to non-urban radiotherapy departments and, even for those attending for radiotherapy in an urban department, there is only small possibility that information will be available in their first language. A limitation of our survey is the lack of data collected on the ethnic origins of the patient population within the participating departments. Interpreter services provide an alternative way for non-English speaking patients to find out about their disease and its treatments. Additionally, interpretation facilitates two-way communications between patient and practitioner throughout diagnosis, treatment and during follow-up time. It is, arguably, of unique importance for the successful planning and implementation of accurate and reproducible radiotherapy for non-English speaking patients. Interpreter services are available in many departments but the nature of the service is diverse and there is little use of agencies for interpretation. The prevalence of face-to-face interpretation provided indicates that the interpreter is usually nonprofessional and may be untrained in this specialist role. The use of telephone interpretation, albeit limited in many departments to working hours, possibly by budgetary constraints, does enable accurate and anonymous translation. Both of these characteristics of interpretation are important in health care where discussions about body function and treatment choice are but two vital components of the professional-patient communication. Important aspects of the radiotherapy process are frequently misunderstood when English is the first language of both patient and practitioner [12]. This indicates scope for equal, if not increased, problems where there is no language in common and the need for non-English speaking patients to communicate through a trained interpreter.
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Interpreter agencies have the advantage of availability close to the time of need. In contrast, the use of hospital employees as volunteers, and the frequent practice, most usually for inpatients, of waiting until an English speaking family member is with the patient, is less than ideal. Another disadvantage of the non-professional interpreter is the nature of their relationship with the patient. Family members are already part of the patients’ cancer journey and the role of interpreter may be emotionally difficult for them. Employees may also become too involved in the patient’s care as time progresses and find it difficult to just translate and not to elaborate or add their own interpretation. The results presented here suggest that further research is needed into the adequacy of information and communication with non-English speaking patients who attend for radiotherapy. The present provision appears to be less than ideal in many departments. Telephone support services Telephone support for radiotherapy patients during and after their treatment is widely provided but this service is not formally recognized. It most usually operates as open access to radiographers and other members of the cancer care team with unplanned interruptions to their work several times a day in just less than a third of departments. These disturbances have the potential to affect the work of radiographers and others, and may result in a less-than-perfect interaction with the patient. There is a need to provide patient support at a distance in a way that minimizes disruption to the working life of the department and to recognize the need to resource such a service.
Conclusion The survey reported here confirms that information-giving practices for English speaking patients attending for radiotherapy in U.K. hospitals are sound. Local and generic information is generally available through a wide variety of sources, although patient information rooms are not common. The provision of telephone support is widespread but as an unrecognized part of the work of staff. The impact on patients and staff of this unplanned disruption to work is worthy of further investigation.
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In contrast, information and interpreter services are not widely available for patients who do not speak English as a first language. This applies even in locations where patients from ethnic minority populations are likely to attend for treatment. The results suggest that departments need to investigate information provision in non-English languages in light of their patient population(s). An assessment of when formal interpreter services are needed to offer an equal information-giving service to all patients, regardless of their ability to read and speak English, is also recommended.
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Acknowledgement
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Thanks are expressed to all the radiotherapy staff who participated in this survey. 14.
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