- Email: [email protected]
Information needs of the informal carers of women treated for breast cancer
ARTICLE IN PRESS European Journal of Oncology Nursing (2007) 11, 16–25
Available at www.sciencedirect.com
journal homepage: www.elsevier.com/locate/ejon
Information needs of the informal carers of women treated for breast cancer Kinta Beavera,, Gary Withamb a
School of Nursing, Midwifery & Social Work, University of Manchester, Coupland Street (off Oxford Road), Manchester. M13 9PL, UK b Christie Hospital NHS Trust, Wilmslow Road, Withington, Manchester. M20 4BX, UK
KEYWORDS Breast cancer; Informal carers; Information needs; Sources of information
Summary Although the vital role of informal carers has been acknowledged in government policy documents in the UK, the information needs of informal carers are not well documented. There is also uncertainty about where carers get their information from and whether they are satisfied with the information they receive. This study aimed to examine the information needs and sources of information for informal carers in the acute cancer setting; the informal carers of a sample of women treated for breast cancer. Both quantitative and qualitative data were collected from semi-structured interviews with 50 informal carers. Measures of information needs and sources were administered in addition to an in-depth exploration of information needs. The priority information needs of carers related to cure, spread of disease and treatments, a similar profile to that found for women with breast cancer in previous work. The main source of information for carers was the person they were caring for, although written information was also valued. Health professionals need to ensure that patients are well informed so that patients can provide information for carers and also need to take advantage of any opportunities to directly assess the information needs of carers to enable them to be more effective in their caring role. & 2006 Elsevier Ltd. All rights reserved. Zusammenfassung Obwohl die essentielle Bedeutung von Angeho ¨rigen, die Patienten betreuen (informal carers), in entsprechenden Erkla ¨rungen der britischen Regierung anerkannt wird, ist bislang nur wenig u ¨ber den Informationsbedarf von pflegenden Angeho ¨rigen bekannt. Ferner besteht Unklarheit daru ¨ber, woher die Angeho ¨rigen ihre Informationen beziehen und ob sie mit den erhaltenen Informationen zufrieden sind. Das Ziel dieser Studie bestand darin, den Informationsbedarf und die Informationsquellen bei einer Stichprobe von Angeho ¨rigen festzustellen, die Patientinnen mit Brustkrebs pflegen. In semistrukturierten Interviews wurden bei 50 pflegenden Angeho ¨rigen sowohl quantitative als auch qualitative Daten erhoben. Neben einer eingehenden Evaluation des Informationsbedarfs fanden Messungen des Informationsbedarfs und der Informationsquellen statt. Im Hinblick auf den vorrangigen Bedarf der Angeho ¨rigen an Informationen u ¨ber Heilung, Ausbreitung der Krankheit und Behandlungsmo ¨glichkeiten wurde ein ¨ ahnliches Profil wie bei Brustkrebspatientinnen in
Corresponding author. Tel.: +161 275 7785; fax: +161 275 7566.
E-mail addresses: [email protected] (K. Beaver), [email protected] (G. Witham). 1462-3889/$ - see front matter & 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2006.01.006
ARTICLE IN PRESS Informal carers of women treated for breast cancer
17
anderen Studien festgestellt. Hauptinformationsquelle der Angeho ¨rigen waren die von ihnen gepflegten Personen, wobei jedoch auch schriftliches Informationsmaterial als hilfreich erachtet wurde. Im Gesundheitswesen ta ¨tige Personen mu ¨ssen sicherstellen, dass die Patienten gut informiert sind – zum einen, damit die Patienten ihre Angeho ¨rigen, von denen sie gepflegt werden, mit Informationen versorgen ko ¨nnen, und zum anderen, weil jede Gelegenheit genutzt werden sollte, um den Informationsbedarf der Angeho ¨rigen direkt, festzustellen und auf diesem Wege die Pflegeta ¨tigkeit der Angeho ¨rigen zu optimieren. & 2006 Elsevier Ltd. All rights reserved.
Introduction Effective communication between health professionals and people with cancer is an important objective of cancer care at an international level (Fallowfield and Jenkins, 1999; Gysels et al., 2004; Simpson et al., 1991; Stewart, 1996). In the United Kingdom (UK) the National Health Service (NHS) Cancer Plan places emphasis on communication, stating that patients and their families should receive the information, support and specialist care that they need to cope with the disease (Department of Health, 2000). However, many aspects of cancer treatment and care are complex and relaying accurate information to patients may be challenging. Add to this the issues of confidentiality and short hospital stays and it is even more challenging to provide information to the informal carers of people with cancer. Although the vital role of informal carers has been acknowledged in government policy documents in the UK (Department of Health, 1995, 1998) the information needs of informal carers are not well documented. The evidence that exists mainly relates to those with long-term physical and mental disabilities and/or those in the terminal stages of illness. This study aims to examine the information needs and sources of information for informal carers in the acute cancer setting; the informal carers of women treated for breast cancer. This is relevant for health professionals striving to meet the needs of the whole family unit and not just the person diagnosed with cancer.
Background The term ‘informal carer’ is commonly used in the literature to refer to someone who actively participates in sharing the patient’s illness experience on a practical and/or emotional level. Policy makers in the British health care system are paying increasing attention to the role of informal carers (Department of Health, 1998). Referring to 2001 census data, Carers UK report that there are 6 million carers throughout the UK (www.carersonline.org.uk). Much of the literature in this area concerns elderly people with longterm physical and mental disabilities. However, there is a growing literature on the needs of the informal carers of people with cancer, in particular those in receipt of palliative care. The Calman-Hine report on the re-organisation of cancer services in England and Wales (Department of Health, 1995) and the NHS Cancer Plan (Department of Health, 2000) both identified the valuable role played by
informal carers and acknowledged the needs of carers as well as patients: The development of cancer services should be patient centred and should take account of patients, families and carers views and preferences as well as those of professionals involved in cancer care (Department of Health, 1995, p. 6) Good information has been identified as one of the main needs of carers, defined as information that is accessible, relevant and comprehensible (Department of Health, 1998). However, evidence suggests that there are deficits in the provision of information to informal carers in cancer and palliative care (Field et al., 1992; Morris and Thomas, 2002), although many studies of carer satisfaction with information are conducted with bereaved carers, raising issues of accurate recall. While studies have examined the demands on informal carers, few studies have focused on the information needs of carers in acute cancer care. Breast cancer has a survival rate of about 66% at 5 years (Coleman et al., 1999) but the duration of illness symptoms and treatments is variable. When undergoing surgery, radiotherapy and/or chemotherapy the physical and practical demands on informal carers are likely to be high. In addition, there is likely to be a continued need for emotional support from diagnosis onwards. Information helps with coping (Harrison-Woerke and Graydon, 1993; Northouse, 1989) and lowers anxiety and distress (Michie et al., 1996). Carers who do not have information or do not know what to expect are more likely to experience distress (Rose, 1999). The information needs of women with breast cancer have been explored (Degner et al., 1997; Galloway et al., 1997; Luker et al., 1995, 1996). Women with breast cancer are concerned to know about the likelihood of cure, spread of disease and treatment options as priorities (Degner et al., 1997; Luker et al., 1995, 1996). Rees et al. (1998) found that some information needs were common to women with breast cancer and their spouses but others differed. Couples with similar information needs were more likely to share information while those with different information needs were less likely to communicate about the disease (Rees et al., 1998). It has also been reported that for spouses of women with breast cancer it is important to learn about the cancer and treatments to understand the disease, assist with decision making, learn ways to manage and inform children, family and friends (Hilton et al., 2000). However, it remains unclear from the evidence whether carers have similar needs to patients or different needs.
ARTICLE IN PRESS 18
K. Beaver, G. Witham
Kilpatrick et al. (1998) investigated the information needs of 84 husbands of women recently diagnosed with breast cancer. Husbands ranked highly needs related to dealing with their wives immediate condition and communication issues. Husbands wanted honest answers to their questions but often felt that they did not know what questions to ask. Health care professionals often find it difficult to provide the information that patients need, especially if it relates to sensitive and challenging issues such as prognosis, and therefore it will likely be even more challenging to provide carers with the information that they need. The information needs of spouses are often ignored by health professionals (Rees et al., 1998). In this case the patient is likely to be a major source of information for the informal caregiver (Chalmers et al., 1996). However, there may be poor communication between family members to protect themselves and others (Hilton, 1996) and there is little clarity on the sources of information used by the informal carers of women with breast cancer. Access to health professionals is an important issue for informal carers (Grande et al., 2004). Specialist oncology nurses are acknowledged as having enhanced clinical skills and expert specialist knowledge and in this respect are likely to be at the forefront in providing information for both patients and their informal carers. Nurses in primary care are also likely information sources for people living with cancer in the community. However, there is evidence to suggest that patients and carers are often confused about the different roles of health professionals in primary care (Luker et al., 2003). If people are confused about who’s who, they may not know who to ask for information. For people who have completed treatment for an acute cancer diagnosis, there may not be a perceived need for primary care services, unless a tangible physical problem exists.
researcher contacting their primary informal carer in order to conduct an interview. Patients were considered eligible if they had a known diagnosis of breast cancer, had undergone treatment for the disease and could identify a primary informal carer who was fully aware of their diagnosis. Patients in the initial stages of diagnosis (o3 months) were excluded as it was considered to be too intrusive to approach individuals at this particularly stressful time. A primary informal carer, for the purposes of this study, was defined as the person closest to the patient and was identified by patients themselves. Therefore, informal carers could be spouses, partners, relatives or friends. The sample included individuals who were caring for someone in the early stages of treatment as well as those caring for individuals who were much further from the point of diagnosis. Ethical approval to conduct the study was obtained from the Local Research Ethical Committee (LREC) and from the Research & Development (R&D) department at the NHS Trust involved in the study. Both patients and their carers gave written consent to participation.
Data collection Data were collected using face to face semi-structured interviews with 50 primary informal carers. All interviews were conducted in the home environment at a time convenient for carers. An interview schedule was designed to address the aims of the study. The interview schedule comprised three main sections:
Information needs, Sources of information, and Socio-demographic information.
Aims This study aimed to explore the following areas:
What are the priority information needs of informal carers of women with breast cancer?
What are the sources of information for informal carers of women with breast cancer?
Study design Semi-structured interviews were conducted with informal carers of women treated for breast cancer. A mixed methods approach allowed for the administration of structured questionnaires to investigate information needs and sources of information as well as a more unstructured component of the interview process that allowed a more in-depth exploration of views.
Study participants A sample of women who had been treated for breast cancer and were attending hospital outpatient clinics at a regional cancer centre in the North West of England were approached and asked if they would be willing to give consent to a
Information needs Information needs were examined using the Information Needs Questionnaire (INQ) as well as a more in-depth exploration using the items of information on the INQ as a guide to conversation. The INQ was originally designed to measure priority information needs for women with breast cancer (Degner et al., 1997; Luker et al., 1995, 1996), although it has also been used successfully for people with colorectal cancer (Beaver et al., 1999). The development of the INQ is described elsewhere (Degner et al., 1998) but essentially consists of items of information found to be important to women with breast cancer. Nine items of information are included in the measure and represent physical, psychological and social aspects of care and treatment. The nine items are presented in pairs. Each of the nine items are seen with every other item to give a total of 36 pairs [n(n1)/2]. Individuals are asked to state a preference for one item out of each pair and this process continues for all 36 pairs. Approaching individuals with a structured questionnaire may well limit responses. To ensure that participants in the study were allowed to express their information needs fully they were also asked to consider if there were any other information needs that were important to them but that had not been included in the INQ measure. As the INQ had been designed specifically for
ARTICLE IN PRESS Informal carers of women treated for breast cancer
1
19
Information about how advanced the disease was and whether it had spread.
2
Information about the likelihood of cure.
3
Information about how the treatment may affect my partner/relative/friends ability to carry on their usual social activities.
4
Information about how my family and close friends may be affected by the disease.
5
Information about caring for my partner/relative/friend at home.
6
Information about how the treatment may affect my partner/relative/friends feelings about their body or sexual attractiveness.
7
Information about different types of treatment and the advantages and disadvantages of each treatment.
8
Information about whether my children or other family members are at risk of getting breast cancer.
9
Information about unpleasant side effects of treatment.
Figure 1 The nine items of information included in the carers INQ.
patients rather than carers, a number of minor amendments were necessary to ensure readability of the measure. For example, ‘information about how the treatment may affect my ability to carry on my usual social activities’ was altered to ‘information about how the treatment may affect my partners/relatives/friends ability to carry on their usual social activities’. These minor changes affected three out of the nine items; six items were unaltered. The nine items in the carers INQ are shown in Fig. 1. Informal carers were specifically asked to indicate their own information needs rather than the perceived information needs of the person they were caring for. As the INQ had not been used with a sample of carers, it seemed appropriate to also take a more in-depth approach and explore each of the nine items of information and any additional items that were raised by carers. This semistructured approach to interviews facilitated the exploration of general areas, but also allowed flexibility to pursue emerging ideas (Britten, 2000).
Sources of information Sources of information were obtained using a similar framework to Luker et al. (1996) in which a list of potential sources of information were presented that included professional sources (breast care nurse, clinic nurse, consultant, district nurse, general practitioner, ward nurse), media sources (magazines, newspapers, television/radio), written information (leaflets, medical books), voluntary organisations and family/friends. In addition, the person treated for breast cancer was included as a potential source of information for the carer as well as the Internet, to reflect technological advances in information provision (Samms, 1999). Study participants indicated whether they had received information from a particular source (yes or no). If they had received information, they were then asked to indicate on a 4-point Likert-type scale whether they were satisfied with the information they had received (very satisfied, quite satisfied, not very satisfied, not at all satisfied).
Socio-demographic information Informal carers were asked to provide socio-demographic details in order to describe the study sample. Information was sought on age, relationship to person treated for breast cancer, ethnic group, level of education, employment status and occupation (as a proxy for social class).
Data analysis All quantitative data were entered into the data entry component of SPSS-v11.5, a statistical software package. Descriptive statistics were used to present characteristics of the study samples and for all categorical data. Analysis of the INQ data was conducted in accordance with the principles of Thurstone Scaling. Thurstone scaling forces a choice between two items at a time; the INQ asked participants to make a choice between two items of information at a time. Thurstone Scaling analysis produces a scale value or score for each of the nine items of information in the INQ measure. This score is a reflection of the degree of importance attributed to that item by the study sample. The nine information needs can then be rank ordered; higher scores indicating more important items. A positive score indicates that more than half the study sample preferred a particular item while a negative score indicates that less then half the study sample preferred a particular INQ item. A more in depth description of the Thurstone analysis procedure for the INQ, including reliability testing, can be found elsewhere (Degner et al., 1998; Sloan et al., 1994). All qualitative data were imported into a computer software package for the analysis of qualitative data (NVIVO), to simplify the indexing of data and to allow rapid retrieval. Data were initially categorised according to responses to questions about each of the nine information needs on the semi-structured interview schedule. Data from each question were then examined systematically using a system of coding to identify particular phenomena and categories of interest (Miles and Huberman, 1994). Two
ARTICLE IN PRESS 20
K. Beaver, G. Witham
researchers independently coded the data and met to discuss and validate resulting themes and categories.
Findings Characteristics of the study sample The sample included 50 primary informal carers; 37 men (74%) and 13 women (26%). Carers were husbands/partners (n ¼ 37), daughters (n ¼ 9), mothers (n ¼ 2) and sisters (n ¼ 2). Age ranged between 20 and 70 years with a mean of 53 years. Informal carers were caring for people who were a mean of 18 months from diagnosis, although 71.4% of the sample were caring for people who were less than 12 months from diagnosis. The majority of the sample were White British (80%), about half had formal qualifications and people from lower social classes were under-represented in the study (Table 1).
Information needs The priority information needs of informal carers in order of priority are shown in Table 2. Information about likelihood of cure, spread of disease and treatment options were ranked as most important. Table 1
Characteristic of the study sample (n ¼ 50).
Variable Relationship to patient Husband/partner Daughter Mother Sister Level of education Educational qualifications No educational qualifications Social class Managerial/professional Skilled/partly skilled Unskilled Student Missing data
Table 2
Frequency (n)
%
37 9 2 2
74 18 4 4
26 24
52 48
22 22 2 1 3
44 44 4 2 6
Carers priority information needs.
Item of information
Rank order
Score
Cure Spread of disease Treatment Side effects Genetic risk Self care Sexual attractiveness Social life Family impact
1 2 3 4 5 6 7 8 9
0.57 0.55 0.20 0.08 0.01 0.08 0.15 0.52 0.66
Three carers indicated that they had information needs that were in addition to those included in the INQ measure. These three carers were relatively young and raised issues about complementary therapy (38 year old husband), understanding clinical trials (34 year old male partner) and individual differences as regards progression of disease and prognosis (28 year old daughter). Information about clinical trials could be considered to be a component of the information need related to treatment, although trials were not specifically mentioned in the INQ. Similarly, information about individual prognosis and progression of disease could be considered to be part of the items on cure and spread of disease. Analysis of the qualitative data mirrored findings from the INQ in that the most important information items related to information about cure, spread of disease and treatments. For some of the items that were deemed relatively unimportant (such as impact on social life and impact on family) participants provided little information, other than to comment that there were more pressing concerns. Therefore, the presentation of the qualitative analysis will focus on the experiences and preferences that participants were willing to discuss. ‘Social things aren’t important, what you’re faced with is what you’re faced with.’ [ID 01; husband]
Cure Informal carers were clear that information about cure was important but acknowledged that it was difficult for health professionals to give a precise answer to whether patients would be cured. Often carers would look to the experiences of other family and friends that they knew had been treated for cancer (not necessarily breast cancer) and make comparisons. ‘My sister had this operation twenty five years ago and she’s still around’ [ID 9; husband] ‘I know breast cancer’s different to other cancers but I looked after my grandad who had cancer and had chemo, I knew what to expect.’ [ID 12; daughter] Carers often received conflicting information but wanted to know what they were dealing with in order to make plans for the future. Living with the unknown was often seen as more difficult than knowing what they were possibly facing in the future. ‘At the end of the day I want to know the prognosis, whether it’s good, bad or (pause), you get mixed signals from everyone. Obviously no-one can give you a guarantee but it would be beneficial for a carer in my opinion to have some idea, however bleak it is, even if it’s hedged with lots of what if’s or maybe’s and all that sort of thing. To have some idea what the prognosis is. If it’s good then obviously everyone’s overjoyed, if it’s not good then you can start preparing yourself ready to get the added strength to be able to give to somebody else. It’s not knowing, the prognosis is not spelt out to you. [ID 2; husband] Carers commented on living with uncertainty, not knowing whether the cancer would return and often struggled to
ARTICLE IN PRESS Informal carers of women treated for breast cancer make sense of conflicting figures that were presented on likelihood of cure. ‘It’s not very clear what cure means. I suppose cure means no recurrence at all and since they don’t know whether that’s going to happen (pause). I remember it being a little bit confusing in that he gave various percentages of recovery and the information didn’t always seem consistenty I can’t remember what they were now but it was sort of 98% likely to be cured and then after we went again it had gone to 80 something.’ [ID 21; husband] Generally information about cure was considered to be a ‘grey area’ [ID 35; husband]. Although it was important to have information about this item it was appreciated that it was difficult for health professionals to make any accurate predictions on cure and prognosis. Carers would focus on the terminology that health professionals used to indicate the likely prognosis. ‘You soon get to know the words, you listen for the word curable and you listen for the word treatable. I don’t want to hear ‘‘treatable’’, I want to hear ‘‘curable’’ y the boss at work said it’s very treatable but I kept thinking it’s curable not treatable.’ [ID 19; daughter] Spread of disease As with the item on cure, informal carers were clear that information about spread of disease was important but acknowledged that it was difficult for health professionals to give a precise answer about what the future would hold if the cancer had spread. However, carers needed to know whether the cancer had spread and what the implications were. Carers who had accompanied patients on hospital visits reported being given this information by hospital consultants but others who were not able to attend appointments were often one step behind in their understanding of the disease. ‘They don’t take the family as a whole, the person that’s there at the time gets it. It’s hard to get all the information, we get what we can and share whatever we get.’ [ID 19; daughter] ‘I’m waiting for this bone scan so I’m a bit worried to be honest. Because if it is secondary it starts to get serious, y because they can only control it, they can’t stop it. I didn’t know that to be honest, I thought you still sort that out as well but I’m not sure about that. I wouldn’t mind finding out about that, y because she thinks she’s going to die now and things like that. y She shocked me the other day to be honest because I went to the doctors with her and she started saying things and I thought ‘‘where’s all that come from?’’ Talking about not seeing the little ‘un grow up and this and that. She never said nothing like that to me, so it was a bit of a shock reallyy It knocked me back, so I wouldn’t mind finding out a bit more about that now. She was sorting it out but now I’ll have to find out information for myself because I’m not happy about that information that you can only sort of control it. I don’t like the sound of that so I’d like to find out a bit more, my computer’s coming back today, it was broken’. [ID 28; partner]
21 Treatment and side effects Although information about treatments was considered important (and this is reflected in the INQ scores) many of the participants reported that they had received this information and knew the treatment plan. Those who still needed information about treatments tended to comment on a lack of information regarding adjuvant treatments such as radiotherapy and drugs used in clinical trials. ‘I wouldn’t mind having some information on the radiotherapy side effects because I don’t know nothing about that and I think she’s going to have to have that when she’s finished her treatment and I want to know why really. [ID 28; partner] ‘We’ve talked about it, we’ve talked about the fact that she’s now on this drug and she doesn’t know which one she’s on; she’s on this trial. I go with her to the hospital but nobody speaks to me.’ [ID 43; sister] The comment made by ID 43 above indicates the difficulties that carers had in obtaining information, especially if patients themselves were not well informed. A husband commented that he obtained information by ‘overhearing conversations in clinic.’ [ID 38; husband]. When discussing treatments, carers also tended to comment on side effects of treatment. Carers were far more uncertain on the side effects of treatment than they were about the actual treatment planned or completed, often relying on patients reports of what to expect. ‘I feel I still don’t know quite what the situation is actually, more to do with the removal of the lymph nodes. [name of patient] was told to avoid having her arm used for blood pressure etcetera and I think the GP didn’t see it as that serious.. so actually what is the effect of removal of the lymph nodes?’ [ID 21; husband] Genetic risk Information about genetic risk was important to carers but there was much confusion about what constituted increased risk. Transmission of breast cancer through the male line was not understood with many carers commenting that, as the patient had only daughters, this was not relevant. For the carers of patients with daughters this was considered to be a very important issue although acquiring the information that was needed had often proved difficult. ‘We want to know about our daughtery I keep asking different people and they say you have to go through your own GP. I asked my GP and he said it should be the hospital that do it. He said keep pushing.’ [ID 39; husband] Few carers (particularly male carers) demonstrated an understanding of the risk to patients’ families, although they acknowledged that the patient had been given written information in the form of leaflets. ‘I’ve got five daughters and they ask about it [genetic risk] and I say I don’t know anything so why are you asking me for ... can you [researcher] tell me?’ [ID 17; husband] ‘I don’t think breast cancer is genetic, I’ve not really had the information’. [ID 38; husband]
ARTICLE IN PRESS 22
K. Beaver, G. Witham
Sources of information
Sexual attractiveness Husbands who discussed sexual attractiveness commented that this was not something that they needed information about or was of particular concern to them. It was more important to be rid of the cancer, regardless of the treatment and side effects involved.
Carers were more likely to receive information from the person they were caring for than any other source (Fig. 2). Other important sources (used by over 60%) included information leaflets, hospital consultant, breast care nurses and newspapers. Satisfaction with information received was high, particularly in relation to professional sources. If there was dissatisfaction with information received it tended to be with media sources such as newspapers and magazines as well as the Internet (Table 3).
‘I think we’ve passed the age of sexual attractiveness. My wife’s beautiful to me and she always will be, end of story.’ [ID 03; husband] However, the issue of sexual attractiveness appeared to be more of a concern for female carers such as daughters. They were concerned about their mother losing her hair during chemotherapy and about breast loss if the treatment involved mastectomy.
Discussion It is clearly acknowledged that the informal carers of people with cancer should receive information and support to ensure they are adequately equipped to take on the role of carer (Department of Health, 1995, 1998, 2000). This study has examined the information needs and sources of information of 50 informal carers of women with breast cancer. The INQ, used previously with people who had been diagnosed with cancer, proved to be a useful instrument for establishing the information needs of carers. Carers had a similar profile of information needs to those identified by women with breast cancer in previous work (Degner et al., 1997; Luker et al., 1995, 1996). Priority information needs related to information about likelihood of cure, spread of disease and treatment options. Carers tended to want honest information in this respect so that they knew what they were dealing with and what to expect in the future. Only three informal carers expressed additional information needs to those included in the INQ measure. While this indicates that the INQ was generally inclusive of the information needs of carers, it is interesting to note that
‘[mother] has not been bothered about disfigurement, although I have been upset about the hair loss.’ [ID 14; daughter]
Self care Carers made few comments related to the item on self care. Diet was mentioned but was not seen as being overly important. Carers commented that the patient may have received some written information on this aspect of care but they were not party to that information. A typical comment was that ‘we got on with it ourselves’ [ID 24; partner]. ‘I don’t think you need a booklet to tell you how to look after someone you love, you know what their needs are so it’s just a case of adapting to whatever situation you’re in on the particular day in question so I don’t think it’s information I would need.’ [ID 11; husband]
Patient
88
Leaflets
76
Consultant
72
Breast Care Nurses
68
Sourcesofinformation
Newspapers
66
TV/radio
54
Family
40
Magazines
38
Ward nurses
32
Clinic nurses
22
Medical books
22 20
Internet GP
18
Voluntary groups
18 14
District nurses 0
Figure 2
10
20
30 40 50 60 70 Information sources utilised (%)
Sources of information for lay carers (n ¼ 50).
80
90
100
ARTICLE IN PRESS Informal carers of women treated for breast cancer
Table 3
23
Satisfaction with information received.
Source
Very satisfied %
Quite satisfied %
Not very satisfied
Not at all satisfied %
Patient Consultant Clinic nurse Ward nurse Community nurse GP Family Breast care nurse Internet Voluntary groups Leaflets Medical books Magazines Newspapers Television/radio
84.1 83.3 81.8 81.3 71.4 66.7 65.0 64.7 60.0 55.6 47.4 27.3 15.8 15.2 11.1
15.9 16.7 18.2 18.8 28.6 33.3 35.0 26.5 20.0 33.3 42.1 63.6 63.2 51.5 59.3
0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 10.0 0.0 5.3 9.1 15.8 27.3 25.9
0.0 0.0 0.0 0.0 0.0 0.0 0.0 8.8 10.0 11.1 5.3 0.0 5.3 6.1 3.7
the three individuals who had additional information needs were younger and expressed needs about issues that are receiving increased attention in the public eye, that is complementary therapy and clinical trials. A more in-depth qualitative approach, or a larger survey, may have indicated that more individuals held information needs in these areas. For reasons of confidentiality it is no longer acceptable in the UK to provide information to carers without the consent of patients. While cancer patients may favour disclosure of information to their families, this is not unconditional and only with their express consent (Benson and Britten, 1996). However, if carers and patients have similar information needs, then health professionals who ensure that patients are well informed about their priority needs may also be serving the needs of carers. Certainly, in this study patients were perceived as primary information sources for informal carers with 88% of the sample reporting that they received information from this source. However, previous work has indicated that women with breast cancer are not necessarily well informed. Luker et al. (1996) reported that 65% of a sample of 105 women treated for breast cancer still had unmet information needs up to 2 years from diagnosis. In this case it is vital that health professionals provide patients with the information they need or carers will clearly be deprived of the information they need to function as effective carers. Obviously this is dependent on the willingness and ability of patients to provide information to carers. Access to health professionals is an important issue for informal carers (Grande et al., 2004). However, hospital follow-up visits for women with breast cancer are of short duration with little time to express concerns or seek information (Beaver and Luker, 2005). If patients do not have their information needs or concerns met in hospital outpatient clinics then it is unlikely that carers will have their needs met in this forum. An important source of information for informal carers were information leaflets. While patients may receive information leaflets to complement verbal information, carers may only receive information in written format. Written information targeted
specifically at carers may be a useful and efficacious means of providing some of the information that carers need. This study found misunderstandings about genetic risk of breast cancer, especially by male carers. Written information on genetic transmission of breast cancer could be valuable for carers who have no understanding of this aspect of the disease. Specialist breast care nurses were also perceived as useful sources of information but it would be interesting to investigate if this was more useful to those caring for people in the early stages of diagnosis and treatment than for those who had completed treatment. In previous work it was noted that the information provided to women with breast cancer by specialist nurses was focused on the time of diagnosis (Luker et al., 1996). Breast care nurses are in a unique position to provide information to carers when they conduct home visits with patients. This is an opportunity to encourage the presence of carers and to assess their needs. It is unlikely that resources will be available for specialist nurses to provide home visits to carers alone and so a combined visit would be efficacious, especially if the information needs of patients and carers are similar. Arguably, home visits are focused on time of diagnosis but providing contact details to carers at this time would enable carers to have access to specialist nurse information when they need it. It is interesting, and perhaps disappointing, that primary care services were not utilised as sources of information. The 18% of the sample who obtained information from their GP were very/quite satisfied with the information they received. It would have been interesting to explore the specific types of information that GP’s were providing but clearly carers were satisfied with the information they received and perhaps carers should be more directly encouraged to seek information from the primary care team. While media and Internet sources were utilised by carers there was some dissatisfaction with the information received from these sources. However, it is likely that information will increasingly be derived from Internet
ARTICLE IN PRESS 24 sources as new generations of computer literate carers emerge. Recent figures suggest that 32% of Europeans and 43% of Americans use the Internet for health information (Eaton, 2002). A recent study of Internet use by patients with cancer in the UK demonstrated how a variety of information and support needs could be met from this media (Ziebland et al., 2004). Health professionals may be concerned about the amount of non-evidence based information available to patients and carers on the Internet. However, it may be prudent for health professionals to inform both patients and carers of reliable evidence based sources if Internet usage is likely to continue to increase. The Internet could foster a new level of knowledge among carers, providing them with the information they need, although this information would not be tailored to individual requirements as provided by health professionals aware of specific aspects of patient care and treatment. It could be suggested that interventions for carers should be evaluated to meet their needs. However, there is little evidence on the effectiveness of interventions for carers in palliative and cancer care (Harding and Higginson, 2003). Indeed Harding and Higginson (2003) report that some interventions may be detrimental as self reliance and independence are important values to carers. Northouse et al. (2005) recently reported on a study where 134 patients and their carers were randomised to usual care or an intervention programme that aimed to provide information and support. The intervention led to less negative appraisal of the care-giving experience for carers but the effect was not sustained over time. Having the opportunity to discuss concerns and receive information was useful in helping carers to learn new ways to manage their concerns. Continued access to information and support is clearly necessary for carers to fulfil their caring role.
Limitations The study was conducted in one regional cancer centre in the UK and it would be interesting to consider the views of informal carers from a broader perspective. This study has considered the primary carers of women with breast cancer. However, family dynamics are more complex than this as ‘family’ can be defined in a variety of ways. Not all women with breast cancer will have what is considered to be a primary caregiver or they may have a number of caregivers with different perspectives bringing conflict as well as support. This was not explored in the current study. Limited time and resources did not allow for an investigation of the information needs of the patient–carer dyad and findings from carer interviews were compared to previous work undertaken on women with breast cancer. It would have been useful to also interview patients as well as their carers to compare information needs more directly.
Conclusion Carers in this study had a similar profile of information needs to that reported for patients in previous work. A wellinformed patient should therefore be able to relay information to informal carers and meet their information needs.
K. Beaver, G. Witham Indeed, patients were the most important source of information for carers. However, it is somewhat idealistic to assume that patients will be able or always willing to accurately relay information to carers. Health professionals therefore need to be aware that carers have a need for specific types of information in order to be effective in their caregiving. Specialist nurses have a valuable role to play in ensuring that both patients and carers get the information they need, with provision of written information and guidance to evidence-based Internet sources as useful complements to meeting the information needs of carers.
Acknowledgements We would like to thank all the informal carers who gave generously of their time and consented to interview.
References Beaver, K., Luker, K.A., 2005. Follow-up in breast cancer clinics: reassuring for patients rather than detecting recurrence. Psycho-Oncology 14, 94–101. Beaver, K., Bogg, J., Luker, K., 1999. Decision-making role preferences and information needs: a comparison of colorectal and breast cancer. Health Expectations 2, 266–276. Benson, J., Britten, N., 1996. Respecting the autonomy of cancer patients when talking with their families: qualitative analysis of semistructured interviews with patients. British Medical Journal 313, 729–731. Britten, N., 2000. Qualitative interviews in health care research. In: Pope, Mays (Eds.), Qualitative Research in Health Care. BMJ Books, London, pp. 11–19 (Chapter 2). Carers UK. www.carersonline.org.uk. Accessed 27.06.05. Chalmers, K., Thomson, K., Degner, L.F., 1996. Information, support and communication needs of women with a family history of breast cancer. Cancer Nursing 19 (3), 204–213. Coleman, M.P., Babb, P., Damiecki, P., et al., 1999. Cancer Survival Trends in England and Wales 1971–1995. HMSO, London. Degner, L.F., Kristjanson, L.J., Bowman, D., et al., 1997. Information needs and decisional preferences in women with breast cancer. Journal of the American Medical Association 277, 1485–1492. Degner, L.F., Davison, B.J., Sloan, J.A., Mueller, B., 1998. Development of a scale to measure information needs in cancer care. Journal of Nursing Measurement 1998 (6), 137–153. Department of Health, 1995. A Policy for Commissioning Cancer Services. Calman-Hine Report. Department of Health, London. Department of Health, 1998. Caring for Carers. Department of Health, London. Department of Health, 2000. NHS Cancer Plan. Department of Health, London. Eaton, L., 2002. Europeans and Americans turn to Internet for health information. British Medical Journal 325, 989. Fallowfield, L., Jenkins, V., 1999. Effective communication skills are the key to good cancer care. European Journal of Cancer 35 (11), 1592–1597. Field, D., Dand, P., Ahmedzai, S., Biswas, B., 1992. Care and information received by lay carers of terminally ill patients at the Leicestershire Hospice. Palliative Medicine 6, 237–245. Galloway, S., Graydon, J., Harrison, et al., 1997. Informational needs of women with recent diagnosis of breast cancer: development of initial testing of a tool. Journal of Advanced Nursing 25 (6), 1175–1183. Grande, G.E., Farquhar, M.C., Barclay, S.I., Todd, C.J., 2004. Valued aspects of primary palliative care: content analysis of bereaved
ARTICLE IN PRESS Informal carers of women treated for breast cancer carers’ descriptions. British Journal of General Practice 54 (507), 772–778. Gysels, M., Richardson, A., Higginson, I., 2004. Communication training for health professionals who care for patients with cancer: a systematic review of effectiveness. Supportive Care in Cancer 12 (10), 692–700. Harding, R., Higginson, 2003. What is the best way to help caregivers in cancer and palliative care? Palliative Medicine. A systematic literature review of interventions and their effectiveness 17, 63–74. Harrison-Woerke, D.E., Graydon, J.E., 1993. Perceived information needs of breast cancer patients receiving radiation therapy after excisional biopsy and axillary node dissection. Cancer Nursing 16 (6), 449–455. Hilton, B.A., 1996. Getting back to normal: the family experience during early stage breast cancer. Oncology Nursing Forum 23 (4), 605–614. Hilton, B.A., Crawford, J.A., Tarko, M.A., 2000. Men’s perspectives on individual and family coping with their wives breast cancer and chemotherapy. Western Journal of Nursing Research 22, 438–459. Kilpatrick, M.G., Kristjanson, L.J., Tataryn, D.J., Fraser, V.H., 1998. Information needs of husbands of women with breast cancer. Oncology Nursing Forum 25 (9), 1595–1601. Luker, K.A., Beaver, K., Leinster, S.J., Owens, R.G., Degner, L.F., Sloan, J.A., 1995. The information needs of women newly diagnosed with breast cancer. Journal of Advanced Nursing 22 (1), 134–141. Luker, K.A., Beaver, K., Leinster, S.J., Owens, R.G., 1996. The information needs of women with breast cancer: a follow up study. Journal of Advanced Nursing 23, 487–495. Luker, K.A., Wilson, K., Pateman, B., Beaver, K., 2003. The role of district nursing: perspectives of cancer patients and their carers before and after hospital discharge. European Journal of Cancer Care 12, 308–316. Michie, S., Rosebert, C., Heaversedge, J., Madden, S., Parbhoo, S., 1996. The effects of different kinds of information on women
25 attending an out-patient breast clinic. Psychology, Health & Medicine 1 (3), 285–296. Miles, M.B., Huberman, A.M., 1994. Qualitative Data Analysis. Sage Publications Ltd, London. Morris, S.M., Thomas, C., 2002. The need to know: informal carers and information. European Journal of Cancer Care 11, 183–187. Northouse, L., 1989. The impact of breast cancer on patients and husbands. Cancer Nursing 12 (5), 276–284. Northouse, L., Kershaw, T., Mood, D., Schafenacker, A., 2005. Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregiver. PsychoOncology 14, 478–491. Rees, C.E., Bath, P.A., Lloyd-Williams, M., 1998. The information concerns of spouses of women with breast cancer: patients’ and spouses perspectives. Journal of Advanced Nursing 28 (6), 1249–1258. Rose, K.E., 1999. A qualitative analysis of the information needs of informal carers of terminally ill cancer patients. Journal of Clinical Nursing 8, 81–88. Samms, M.C., 1999. The husbands untold account of his wife’s breast cancer: a chronological analysis. Oncology Nursing Forum 26 (8), 1351–1358. Simpson, M., Buckman, R., Stewart, M., 1991. Doctor–patient communication: the Toronto Consensus Statement. British Medical Journal 303, 1385–1387. Sloan, J.A., Doig, W., Yeung, A., 1994. A Manual to Carry Out Thurstone Scaling and related Analytic Procedures. Manitoba Nursing Research Institute Technical Report #11, University of Manitoba, Canada. Stewart, M.A., 1996. Effective physician–patient communication and health outcomes: a review. Canadian Medical Association Journal 152, 1423–1433. Ziebland, S., Chapple, A., Dumelow, C., Evans, J., Prinjha, S., Rozmovits, L., 2004. How the internet affects patients’ experience of cancer: a qualitative study. British Medical Journal 328, 564–570.
Available at www.sciencedirect.com
journal homepage: www.elsevier.com/locate/ejon
Information needs of the informal carers of women treated for breast cancer Kinta Beavera,, Gary Withamb a
School of Nursing, Midwifery & Social Work, University of Manchester, Coupland Street (off Oxford Road), Manchester. M13 9PL, UK b Christie Hospital NHS Trust, Wilmslow Road, Withington, Manchester. M20 4BX, UK
KEYWORDS Breast cancer; Informal carers; Information needs; Sources of information
Summary Although the vital role of informal carers has been acknowledged in government policy documents in the UK, the information needs of informal carers are not well documented. There is also uncertainty about where carers get their information from and whether they are satisfied with the information they receive. This study aimed to examine the information needs and sources of information for informal carers in the acute cancer setting; the informal carers of a sample of women treated for breast cancer. Both quantitative and qualitative data were collected from semi-structured interviews with 50 informal carers. Measures of information needs and sources were administered in addition to an in-depth exploration of information needs. The priority information needs of carers related to cure, spread of disease and treatments, a similar profile to that found for women with breast cancer in previous work. The main source of information for carers was the person they were caring for, although written information was also valued. Health professionals need to ensure that patients are well informed so that patients can provide information for carers and also need to take advantage of any opportunities to directly assess the information needs of carers to enable them to be more effective in their caring role. & 2006 Elsevier Ltd. All rights reserved. Zusammenfassung Obwohl die essentielle Bedeutung von Angeho ¨rigen, die Patienten betreuen (informal carers), in entsprechenden Erkla ¨rungen der britischen Regierung anerkannt wird, ist bislang nur wenig u ¨ber den Informationsbedarf von pflegenden Angeho ¨rigen bekannt. Ferner besteht Unklarheit daru ¨ber, woher die Angeho ¨rigen ihre Informationen beziehen und ob sie mit den erhaltenen Informationen zufrieden sind. Das Ziel dieser Studie bestand darin, den Informationsbedarf und die Informationsquellen bei einer Stichprobe von Angeho ¨rigen festzustellen, die Patientinnen mit Brustkrebs pflegen. In semistrukturierten Interviews wurden bei 50 pflegenden Angeho ¨rigen sowohl quantitative als auch qualitative Daten erhoben. Neben einer eingehenden Evaluation des Informationsbedarfs fanden Messungen des Informationsbedarfs und der Informationsquellen statt. Im Hinblick auf den vorrangigen Bedarf der Angeho ¨rigen an Informationen u ¨ber Heilung, Ausbreitung der Krankheit und Behandlungsmo ¨glichkeiten wurde ein ¨ ahnliches Profil wie bei Brustkrebspatientinnen in
Corresponding author. Tel.: +161 275 7785; fax: +161 275 7566.
E-mail addresses: [email protected] (K. Beaver), [email protected] (G. Witham). 1462-3889/$ - see front matter & 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2006.01.006
ARTICLE IN PRESS Informal carers of women treated for breast cancer
17
anderen Studien festgestellt. Hauptinformationsquelle der Angeho ¨rigen waren die von ihnen gepflegten Personen, wobei jedoch auch schriftliches Informationsmaterial als hilfreich erachtet wurde. Im Gesundheitswesen ta ¨tige Personen mu ¨ssen sicherstellen, dass die Patienten gut informiert sind – zum einen, damit die Patienten ihre Angeho ¨rigen, von denen sie gepflegt werden, mit Informationen versorgen ko ¨nnen, und zum anderen, weil jede Gelegenheit genutzt werden sollte, um den Informationsbedarf der Angeho ¨rigen direkt, festzustellen und auf diesem Wege die Pflegeta ¨tigkeit der Angeho ¨rigen zu optimieren. & 2006 Elsevier Ltd. All rights reserved.
Introduction Effective communication between health professionals and people with cancer is an important objective of cancer care at an international level (Fallowfield and Jenkins, 1999; Gysels et al., 2004; Simpson et al., 1991; Stewart, 1996). In the United Kingdom (UK) the National Health Service (NHS) Cancer Plan places emphasis on communication, stating that patients and their families should receive the information, support and specialist care that they need to cope with the disease (Department of Health, 2000). However, many aspects of cancer treatment and care are complex and relaying accurate information to patients may be challenging. Add to this the issues of confidentiality and short hospital stays and it is even more challenging to provide information to the informal carers of people with cancer. Although the vital role of informal carers has been acknowledged in government policy documents in the UK (Department of Health, 1995, 1998) the information needs of informal carers are not well documented. The evidence that exists mainly relates to those with long-term physical and mental disabilities and/or those in the terminal stages of illness. This study aims to examine the information needs and sources of information for informal carers in the acute cancer setting; the informal carers of women treated for breast cancer. This is relevant for health professionals striving to meet the needs of the whole family unit and not just the person diagnosed with cancer.
Background The term ‘informal carer’ is commonly used in the literature to refer to someone who actively participates in sharing the patient’s illness experience on a practical and/or emotional level. Policy makers in the British health care system are paying increasing attention to the role of informal carers (Department of Health, 1998). Referring to 2001 census data, Carers UK report that there are 6 million carers throughout the UK (www.carersonline.org.uk). Much of the literature in this area concerns elderly people with longterm physical and mental disabilities. However, there is a growing literature on the needs of the informal carers of people with cancer, in particular those in receipt of palliative care. The Calman-Hine report on the re-organisation of cancer services in England and Wales (Department of Health, 1995) and the NHS Cancer Plan (Department of Health, 2000) both identified the valuable role played by
informal carers and acknowledged the needs of carers as well as patients: The development of cancer services should be patient centred and should take account of patients, families and carers views and preferences as well as those of professionals involved in cancer care (Department of Health, 1995, p. 6) Good information has been identified as one of the main needs of carers, defined as information that is accessible, relevant and comprehensible (Department of Health, 1998). However, evidence suggests that there are deficits in the provision of information to informal carers in cancer and palliative care (Field et al., 1992; Morris and Thomas, 2002), although many studies of carer satisfaction with information are conducted with bereaved carers, raising issues of accurate recall. While studies have examined the demands on informal carers, few studies have focused on the information needs of carers in acute cancer care. Breast cancer has a survival rate of about 66% at 5 years (Coleman et al., 1999) but the duration of illness symptoms and treatments is variable. When undergoing surgery, radiotherapy and/or chemotherapy the physical and practical demands on informal carers are likely to be high. In addition, there is likely to be a continued need for emotional support from diagnosis onwards. Information helps with coping (Harrison-Woerke and Graydon, 1993; Northouse, 1989) and lowers anxiety and distress (Michie et al., 1996). Carers who do not have information or do not know what to expect are more likely to experience distress (Rose, 1999). The information needs of women with breast cancer have been explored (Degner et al., 1997; Galloway et al., 1997; Luker et al., 1995, 1996). Women with breast cancer are concerned to know about the likelihood of cure, spread of disease and treatment options as priorities (Degner et al., 1997; Luker et al., 1995, 1996). Rees et al. (1998) found that some information needs were common to women with breast cancer and their spouses but others differed. Couples with similar information needs were more likely to share information while those with different information needs were less likely to communicate about the disease (Rees et al., 1998). It has also been reported that for spouses of women with breast cancer it is important to learn about the cancer and treatments to understand the disease, assist with decision making, learn ways to manage and inform children, family and friends (Hilton et al., 2000). However, it remains unclear from the evidence whether carers have similar needs to patients or different needs.
ARTICLE IN PRESS 18
K. Beaver, G. Witham
Kilpatrick et al. (1998) investigated the information needs of 84 husbands of women recently diagnosed with breast cancer. Husbands ranked highly needs related to dealing with their wives immediate condition and communication issues. Husbands wanted honest answers to their questions but often felt that they did not know what questions to ask. Health care professionals often find it difficult to provide the information that patients need, especially if it relates to sensitive and challenging issues such as prognosis, and therefore it will likely be even more challenging to provide carers with the information that they need. The information needs of spouses are often ignored by health professionals (Rees et al., 1998). In this case the patient is likely to be a major source of information for the informal caregiver (Chalmers et al., 1996). However, there may be poor communication between family members to protect themselves and others (Hilton, 1996) and there is little clarity on the sources of information used by the informal carers of women with breast cancer. Access to health professionals is an important issue for informal carers (Grande et al., 2004). Specialist oncology nurses are acknowledged as having enhanced clinical skills and expert specialist knowledge and in this respect are likely to be at the forefront in providing information for both patients and their informal carers. Nurses in primary care are also likely information sources for people living with cancer in the community. However, there is evidence to suggest that patients and carers are often confused about the different roles of health professionals in primary care (Luker et al., 2003). If people are confused about who’s who, they may not know who to ask for information. For people who have completed treatment for an acute cancer diagnosis, there may not be a perceived need for primary care services, unless a tangible physical problem exists.
researcher contacting their primary informal carer in order to conduct an interview. Patients were considered eligible if they had a known diagnosis of breast cancer, had undergone treatment for the disease and could identify a primary informal carer who was fully aware of their diagnosis. Patients in the initial stages of diagnosis (o3 months) were excluded as it was considered to be too intrusive to approach individuals at this particularly stressful time. A primary informal carer, for the purposes of this study, was defined as the person closest to the patient and was identified by patients themselves. Therefore, informal carers could be spouses, partners, relatives or friends. The sample included individuals who were caring for someone in the early stages of treatment as well as those caring for individuals who were much further from the point of diagnosis. Ethical approval to conduct the study was obtained from the Local Research Ethical Committee (LREC) and from the Research & Development (R&D) department at the NHS Trust involved in the study. Both patients and their carers gave written consent to participation.
Data collection Data were collected using face to face semi-structured interviews with 50 primary informal carers. All interviews were conducted in the home environment at a time convenient for carers. An interview schedule was designed to address the aims of the study. The interview schedule comprised three main sections:
Information needs, Sources of information, and Socio-demographic information.
Aims This study aimed to explore the following areas:
What are the priority information needs of informal carers of women with breast cancer?
What are the sources of information for informal carers of women with breast cancer?
Study design Semi-structured interviews were conducted with informal carers of women treated for breast cancer. A mixed methods approach allowed for the administration of structured questionnaires to investigate information needs and sources of information as well as a more unstructured component of the interview process that allowed a more in-depth exploration of views.
Study participants A sample of women who had been treated for breast cancer and were attending hospital outpatient clinics at a regional cancer centre in the North West of England were approached and asked if they would be willing to give consent to a
Information needs Information needs were examined using the Information Needs Questionnaire (INQ) as well as a more in-depth exploration using the items of information on the INQ as a guide to conversation. The INQ was originally designed to measure priority information needs for women with breast cancer (Degner et al., 1997; Luker et al., 1995, 1996), although it has also been used successfully for people with colorectal cancer (Beaver et al., 1999). The development of the INQ is described elsewhere (Degner et al., 1998) but essentially consists of items of information found to be important to women with breast cancer. Nine items of information are included in the measure and represent physical, psychological and social aspects of care and treatment. The nine items are presented in pairs. Each of the nine items are seen with every other item to give a total of 36 pairs [n(n1)/2]. Individuals are asked to state a preference for one item out of each pair and this process continues for all 36 pairs. Approaching individuals with a structured questionnaire may well limit responses. To ensure that participants in the study were allowed to express their information needs fully they were also asked to consider if there were any other information needs that were important to them but that had not been included in the INQ measure. As the INQ had been designed specifically for
ARTICLE IN PRESS Informal carers of women treated for breast cancer
1
19
Information about how advanced the disease was and whether it had spread.
2
Information about the likelihood of cure.
3
Information about how the treatment may affect my partner/relative/friends ability to carry on their usual social activities.
4
Information about how my family and close friends may be affected by the disease.
5
Information about caring for my partner/relative/friend at home.
6
Information about how the treatment may affect my partner/relative/friends feelings about their body or sexual attractiveness.
7
Information about different types of treatment and the advantages and disadvantages of each treatment.
8
Information about whether my children or other family members are at risk of getting breast cancer.
9
Information about unpleasant side effects of treatment.
Figure 1 The nine items of information included in the carers INQ.
patients rather than carers, a number of minor amendments were necessary to ensure readability of the measure. For example, ‘information about how the treatment may affect my ability to carry on my usual social activities’ was altered to ‘information about how the treatment may affect my partners/relatives/friends ability to carry on their usual social activities’. These minor changes affected three out of the nine items; six items were unaltered. The nine items in the carers INQ are shown in Fig. 1. Informal carers were specifically asked to indicate their own information needs rather than the perceived information needs of the person they were caring for. As the INQ had not been used with a sample of carers, it seemed appropriate to also take a more in-depth approach and explore each of the nine items of information and any additional items that were raised by carers. This semistructured approach to interviews facilitated the exploration of general areas, but also allowed flexibility to pursue emerging ideas (Britten, 2000).
Sources of information Sources of information were obtained using a similar framework to Luker et al. (1996) in which a list of potential sources of information were presented that included professional sources (breast care nurse, clinic nurse, consultant, district nurse, general practitioner, ward nurse), media sources (magazines, newspapers, television/radio), written information (leaflets, medical books), voluntary organisations and family/friends. In addition, the person treated for breast cancer was included as a potential source of information for the carer as well as the Internet, to reflect technological advances in information provision (Samms, 1999). Study participants indicated whether they had received information from a particular source (yes or no). If they had received information, they were then asked to indicate on a 4-point Likert-type scale whether they were satisfied with the information they had received (very satisfied, quite satisfied, not very satisfied, not at all satisfied).
Socio-demographic information Informal carers were asked to provide socio-demographic details in order to describe the study sample. Information was sought on age, relationship to person treated for breast cancer, ethnic group, level of education, employment status and occupation (as a proxy for social class).
Data analysis All quantitative data were entered into the data entry component of SPSS-v11.5, a statistical software package. Descriptive statistics were used to present characteristics of the study samples and for all categorical data. Analysis of the INQ data was conducted in accordance with the principles of Thurstone Scaling. Thurstone scaling forces a choice between two items at a time; the INQ asked participants to make a choice between two items of information at a time. Thurstone Scaling analysis produces a scale value or score for each of the nine items of information in the INQ measure. This score is a reflection of the degree of importance attributed to that item by the study sample. The nine information needs can then be rank ordered; higher scores indicating more important items. A positive score indicates that more than half the study sample preferred a particular item while a negative score indicates that less then half the study sample preferred a particular INQ item. A more in depth description of the Thurstone analysis procedure for the INQ, including reliability testing, can be found elsewhere (Degner et al., 1998; Sloan et al., 1994). All qualitative data were imported into a computer software package for the analysis of qualitative data (NVIVO), to simplify the indexing of data and to allow rapid retrieval. Data were initially categorised according to responses to questions about each of the nine information needs on the semi-structured interview schedule. Data from each question were then examined systematically using a system of coding to identify particular phenomena and categories of interest (Miles and Huberman, 1994). Two
ARTICLE IN PRESS 20
K. Beaver, G. Witham
researchers independently coded the data and met to discuss and validate resulting themes and categories.
Findings Characteristics of the study sample The sample included 50 primary informal carers; 37 men (74%) and 13 women (26%). Carers were husbands/partners (n ¼ 37), daughters (n ¼ 9), mothers (n ¼ 2) and sisters (n ¼ 2). Age ranged between 20 and 70 years with a mean of 53 years. Informal carers were caring for people who were a mean of 18 months from diagnosis, although 71.4% of the sample were caring for people who were less than 12 months from diagnosis. The majority of the sample were White British (80%), about half had formal qualifications and people from lower social classes were under-represented in the study (Table 1).
Information needs The priority information needs of informal carers in order of priority are shown in Table 2. Information about likelihood of cure, spread of disease and treatment options were ranked as most important. Table 1
Characteristic of the study sample (n ¼ 50).
Variable Relationship to patient Husband/partner Daughter Mother Sister Level of education Educational qualifications No educational qualifications Social class Managerial/professional Skilled/partly skilled Unskilled Student Missing data
Table 2
Frequency (n)
%
37 9 2 2
74 18 4 4
26 24
52 48
22 22 2 1 3
44 44 4 2 6
Carers priority information needs.
Item of information
Rank order
Score
Cure Spread of disease Treatment Side effects Genetic risk Self care Sexual attractiveness Social life Family impact
1 2 3 4 5 6 7 8 9
0.57 0.55 0.20 0.08 0.01 0.08 0.15 0.52 0.66
Three carers indicated that they had information needs that were in addition to those included in the INQ measure. These three carers were relatively young and raised issues about complementary therapy (38 year old husband), understanding clinical trials (34 year old male partner) and individual differences as regards progression of disease and prognosis (28 year old daughter). Information about clinical trials could be considered to be a component of the information need related to treatment, although trials were not specifically mentioned in the INQ. Similarly, information about individual prognosis and progression of disease could be considered to be part of the items on cure and spread of disease. Analysis of the qualitative data mirrored findings from the INQ in that the most important information items related to information about cure, spread of disease and treatments. For some of the items that were deemed relatively unimportant (such as impact on social life and impact on family) participants provided little information, other than to comment that there were more pressing concerns. Therefore, the presentation of the qualitative analysis will focus on the experiences and preferences that participants were willing to discuss. ‘Social things aren’t important, what you’re faced with is what you’re faced with.’ [ID 01; husband]
Cure Informal carers were clear that information about cure was important but acknowledged that it was difficult for health professionals to give a precise answer to whether patients would be cured. Often carers would look to the experiences of other family and friends that they knew had been treated for cancer (not necessarily breast cancer) and make comparisons. ‘My sister had this operation twenty five years ago and she’s still around’ [ID 9; husband] ‘I know breast cancer’s different to other cancers but I looked after my grandad who had cancer and had chemo, I knew what to expect.’ [ID 12; daughter] Carers often received conflicting information but wanted to know what they were dealing with in order to make plans for the future. Living with the unknown was often seen as more difficult than knowing what they were possibly facing in the future. ‘At the end of the day I want to know the prognosis, whether it’s good, bad or (pause), you get mixed signals from everyone. Obviously no-one can give you a guarantee but it would be beneficial for a carer in my opinion to have some idea, however bleak it is, even if it’s hedged with lots of what if’s or maybe’s and all that sort of thing. To have some idea what the prognosis is. If it’s good then obviously everyone’s overjoyed, if it’s not good then you can start preparing yourself ready to get the added strength to be able to give to somebody else. It’s not knowing, the prognosis is not spelt out to you. [ID 2; husband] Carers commented on living with uncertainty, not knowing whether the cancer would return and often struggled to
ARTICLE IN PRESS Informal carers of women treated for breast cancer make sense of conflicting figures that were presented on likelihood of cure. ‘It’s not very clear what cure means. I suppose cure means no recurrence at all and since they don’t know whether that’s going to happen (pause). I remember it being a little bit confusing in that he gave various percentages of recovery and the information didn’t always seem consistenty I can’t remember what they were now but it was sort of 98% likely to be cured and then after we went again it had gone to 80 something.’ [ID 21; husband] Generally information about cure was considered to be a ‘grey area’ [ID 35; husband]. Although it was important to have information about this item it was appreciated that it was difficult for health professionals to make any accurate predictions on cure and prognosis. Carers would focus on the terminology that health professionals used to indicate the likely prognosis. ‘You soon get to know the words, you listen for the word curable and you listen for the word treatable. I don’t want to hear ‘‘treatable’’, I want to hear ‘‘curable’’ y the boss at work said it’s very treatable but I kept thinking it’s curable not treatable.’ [ID 19; daughter] Spread of disease As with the item on cure, informal carers were clear that information about spread of disease was important but acknowledged that it was difficult for health professionals to give a precise answer about what the future would hold if the cancer had spread. However, carers needed to know whether the cancer had spread and what the implications were. Carers who had accompanied patients on hospital visits reported being given this information by hospital consultants but others who were not able to attend appointments were often one step behind in their understanding of the disease. ‘They don’t take the family as a whole, the person that’s there at the time gets it. It’s hard to get all the information, we get what we can and share whatever we get.’ [ID 19; daughter] ‘I’m waiting for this bone scan so I’m a bit worried to be honest. Because if it is secondary it starts to get serious, y because they can only control it, they can’t stop it. I didn’t know that to be honest, I thought you still sort that out as well but I’m not sure about that. I wouldn’t mind finding out about that, y because she thinks she’s going to die now and things like that. y She shocked me the other day to be honest because I went to the doctors with her and she started saying things and I thought ‘‘where’s all that come from?’’ Talking about not seeing the little ‘un grow up and this and that. She never said nothing like that to me, so it was a bit of a shock reallyy It knocked me back, so I wouldn’t mind finding out a bit more about that now. She was sorting it out but now I’ll have to find out information for myself because I’m not happy about that information that you can only sort of control it. I don’t like the sound of that so I’d like to find out a bit more, my computer’s coming back today, it was broken’. [ID 28; partner]
21 Treatment and side effects Although information about treatments was considered important (and this is reflected in the INQ scores) many of the participants reported that they had received this information and knew the treatment plan. Those who still needed information about treatments tended to comment on a lack of information regarding adjuvant treatments such as radiotherapy and drugs used in clinical trials. ‘I wouldn’t mind having some information on the radiotherapy side effects because I don’t know nothing about that and I think she’s going to have to have that when she’s finished her treatment and I want to know why really. [ID 28; partner] ‘We’ve talked about it, we’ve talked about the fact that she’s now on this drug and she doesn’t know which one she’s on; she’s on this trial. I go with her to the hospital but nobody speaks to me.’ [ID 43; sister] The comment made by ID 43 above indicates the difficulties that carers had in obtaining information, especially if patients themselves were not well informed. A husband commented that he obtained information by ‘overhearing conversations in clinic.’ [ID 38; husband]. When discussing treatments, carers also tended to comment on side effects of treatment. Carers were far more uncertain on the side effects of treatment than they were about the actual treatment planned or completed, often relying on patients reports of what to expect. ‘I feel I still don’t know quite what the situation is actually, more to do with the removal of the lymph nodes. [name of patient] was told to avoid having her arm used for blood pressure etcetera and I think the GP didn’t see it as that serious.. so actually what is the effect of removal of the lymph nodes?’ [ID 21; husband] Genetic risk Information about genetic risk was important to carers but there was much confusion about what constituted increased risk. Transmission of breast cancer through the male line was not understood with many carers commenting that, as the patient had only daughters, this was not relevant. For the carers of patients with daughters this was considered to be a very important issue although acquiring the information that was needed had often proved difficult. ‘We want to know about our daughtery I keep asking different people and they say you have to go through your own GP. I asked my GP and he said it should be the hospital that do it. He said keep pushing.’ [ID 39; husband] Few carers (particularly male carers) demonstrated an understanding of the risk to patients’ families, although they acknowledged that the patient had been given written information in the form of leaflets. ‘I’ve got five daughters and they ask about it [genetic risk] and I say I don’t know anything so why are you asking me for ... can you [researcher] tell me?’ [ID 17; husband] ‘I don’t think breast cancer is genetic, I’ve not really had the information’. [ID 38; husband]
ARTICLE IN PRESS 22
K. Beaver, G. Witham
Sources of information
Sexual attractiveness Husbands who discussed sexual attractiveness commented that this was not something that they needed information about or was of particular concern to them. It was more important to be rid of the cancer, regardless of the treatment and side effects involved.
Carers were more likely to receive information from the person they were caring for than any other source (Fig. 2). Other important sources (used by over 60%) included information leaflets, hospital consultant, breast care nurses and newspapers. Satisfaction with information received was high, particularly in relation to professional sources. If there was dissatisfaction with information received it tended to be with media sources such as newspapers and magazines as well as the Internet (Table 3).
‘I think we’ve passed the age of sexual attractiveness. My wife’s beautiful to me and she always will be, end of story.’ [ID 03; husband] However, the issue of sexual attractiveness appeared to be more of a concern for female carers such as daughters. They were concerned about their mother losing her hair during chemotherapy and about breast loss if the treatment involved mastectomy.
Discussion It is clearly acknowledged that the informal carers of people with cancer should receive information and support to ensure they are adequately equipped to take on the role of carer (Department of Health, 1995, 1998, 2000). This study has examined the information needs and sources of information of 50 informal carers of women with breast cancer. The INQ, used previously with people who had been diagnosed with cancer, proved to be a useful instrument for establishing the information needs of carers. Carers had a similar profile of information needs to those identified by women with breast cancer in previous work (Degner et al., 1997; Luker et al., 1995, 1996). Priority information needs related to information about likelihood of cure, spread of disease and treatment options. Carers tended to want honest information in this respect so that they knew what they were dealing with and what to expect in the future. Only three informal carers expressed additional information needs to those included in the INQ measure. While this indicates that the INQ was generally inclusive of the information needs of carers, it is interesting to note that
‘[mother] has not been bothered about disfigurement, although I have been upset about the hair loss.’ [ID 14; daughter]
Self care Carers made few comments related to the item on self care. Diet was mentioned but was not seen as being overly important. Carers commented that the patient may have received some written information on this aspect of care but they were not party to that information. A typical comment was that ‘we got on with it ourselves’ [ID 24; partner]. ‘I don’t think you need a booklet to tell you how to look after someone you love, you know what their needs are so it’s just a case of adapting to whatever situation you’re in on the particular day in question so I don’t think it’s information I would need.’ [ID 11; husband]
Patient
88
Leaflets
76
Consultant
72
Breast Care Nurses
68
Sourcesofinformation
Newspapers
66
TV/radio
54
Family
40
Magazines
38
Ward nurses
32
Clinic nurses
22
Medical books
22 20
Internet GP
18
Voluntary groups
18 14
District nurses 0
Figure 2
10
20
30 40 50 60 70 Information sources utilised (%)
Sources of information for lay carers (n ¼ 50).
80
90
100
ARTICLE IN PRESS Informal carers of women treated for breast cancer
Table 3
23
Satisfaction with information received.
Source
Very satisfied %
Quite satisfied %
Not very satisfied
Not at all satisfied %
Patient Consultant Clinic nurse Ward nurse Community nurse GP Family Breast care nurse Internet Voluntary groups Leaflets Medical books Magazines Newspapers Television/radio
84.1 83.3 81.8 81.3 71.4 66.7 65.0 64.7 60.0 55.6 47.4 27.3 15.8 15.2 11.1
15.9 16.7 18.2 18.8 28.6 33.3 35.0 26.5 20.0 33.3 42.1 63.6 63.2 51.5 59.3
0.0 0.0 0.0 0.0 0.0 0.0 0.0 0.0 10.0 0.0 5.3 9.1 15.8 27.3 25.9
0.0 0.0 0.0 0.0 0.0 0.0 0.0 8.8 10.0 11.1 5.3 0.0 5.3 6.1 3.7
the three individuals who had additional information needs were younger and expressed needs about issues that are receiving increased attention in the public eye, that is complementary therapy and clinical trials. A more in-depth qualitative approach, or a larger survey, may have indicated that more individuals held information needs in these areas. For reasons of confidentiality it is no longer acceptable in the UK to provide information to carers without the consent of patients. While cancer patients may favour disclosure of information to their families, this is not unconditional and only with their express consent (Benson and Britten, 1996). However, if carers and patients have similar information needs, then health professionals who ensure that patients are well informed about their priority needs may also be serving the needs of carers. Certainly, in this study patients were perceived as primary information sources for informal carers with 88% of the sample reporting that they received information from this source. However, previous work has indicated that women with breast cancer are not necessarily well informed. Luker et al. (1996) reported that 65% of a sample of 105 women treated for breast cancer still had unmet information needs up to 2 years from diagnosis. In this case it is vital that health professionals provide patients with the information they need or carers will clearly be deprived of the information they need to function as effective carers. Obviously this is dependent on the willingness and ability of patients to provide information to carers. Access to health professionals is an important issue for informal carers (Grande et al., 2004). However, hospital follow-up visits for women with breast cancer are of short duration with little time to express concerns or seek information (Beaver and Luker, 2005). If patients do not have their information needs or concerns met in hospital outpatient clinics then it is unlikely that carers will have their needs met in this forum. An important source of information for informal carers were information leaflets. While patients may receive information leaflets to complement verbal information, carers may only receive information in written format. Written information targeted
specifically at carers may be a useful and efficacious means of providing some of the information that carers need. This study found misunderstandings about genetic risk of breast cancer, especially by male carers. Written information on genetic transmission of breast cancer could be valuable for carers who have no understanding of this aspect of the disease. Specialist breast care nurses were also perceived as useful sources of information but it would be interesting to investigate if this was more useful to those caring for people in the early stages of diagnosis and treatment than for those who had completed treatment. In previous work it was noted that the information provided to women with breast cancer by specialist nurses was focused on the time of diagnosis (Luker et al., 1996). Breast care nurses are in a unique position to provide information to carers when they conduct home visits with patients. This is an opportunity to encourage the presence of carers and to assess their needs. It is unlikely that resources will be available for specialist nurses to provide home visits to carers alone and so a combined visit would be efficacious, especially if the information needs of patients and carers are similar. Arguably, home visits are focused on time of diagnosis but providing contact details to carers at this time would enable carers to have access to specialist nurse information when they need it. It is interesting, and perhaps disappointing, that primary care services were not utilised as sources of information. The 18% of the sample who obtained information from their GP were very/quite satisfied with the information they received. It would have been interesting to explore the specific types of information that GP’s were providing but clearly carers were satisfied with the information they received and perhaps carers should be more directly encouraged to seek information from the primary care team. While media and Internet sources were utilised by carers there was some dissatisfaction with the information received from these sources. However, it is likely that information will increasingly be derived from Internet
ARTICLE IN PRESS 24 sources as new generations of computer literate carers emerge. Recent figures suggest that 32% of Europeans and 43% of Americans use the Internet for health information (Eaton, 2002). A recent study of Internet use by patients with cancer in the UK demonstrated how a variety of information and support needs could be met from this media (Ziebland et al., 2004). Health professionals may be concerned about the amount of non-evidence based information available to patients and carers on the Internet. However, it may be prudent for health professionals to inform both patients and carers of reliable evidence based sources if Internet usage is likely to continue to increase. The Internet could foster a new level of knowledge among carers, providing them with the information they need, although this information would not be tailored to individual requirements as provided by health professionals aware of specific aspects of patient care and treatment. It could be suggested that interventions for carers should be evaluated to meet their needs. However, there is little evidence on the effectiveness of interventions for carers in palliative and cancer care (Harding and Higginson, 2003). Indeed Harding and Higginson (2003) report that some interventions may be detrimental as self reliance and independence are important values to carers. Northouse et al. (2005) recently reported on a study where 134 patients and their carers were randomised to usual care or an intervention programme that aimed to provide information and support. The intervention led to less negative appraisal of the care-giving experience for carers but the effect was not sustained over time. Having the opportunity to discuss concerns and receive information was useful in helping carers to learn new ways to manage their concerns. Continued access to information and support is clearly necessary for carers to fulfil their caring role.
Limitations The study was conducted in one regional cancer centre in the UK and it would be interesting to consider the views of informal carers from a broader perspective. This study has considered the primary carers of women with breast cancer. However, family dynamics are more complex than this as ‘family’ can be defined in a variety of ways. Not all women with breast cancer will have what is considered to be a primary caregiver or they may have a number of caregivers with different perspectives bringing conflict as well as support. This was not explored in the current study. Limited time and resources did not allow for an investigation of the information needs of the patient–carer dyad and findings from carer interviews were compared to previous work undertaken on women with breast cancer. It would have been useful to also interview patients as well as their carers to compare information needs more directly.
Conclusion Carers in this study had a similar profile of information needs to that reported for patients in previous work. A wellinformed patient should therefore be able to relay information to informal carers and meet their information needs.
K. Beaver, G. Witham Indeed, patients were the most important source of information for carers. However, it is somewhat idealistic to assume that patients will be able or always willing to accurately relay information to carers. Health professionals therefore need to be aware that carers have a need for specific types of information in order to be effective in their caregiving. Specialist nurses have a valuable role to play in ensuring that both patients and carers get the information they need, with provision of written information and guidance to evidence-based Internet sources as useful complements to meeting the information needs of carers.
Acknowledgements We would like to thank all the informal carers who gave generously of their time and consented to interview.
References Beaver, K., Luker, K.A., 2005. Follow-up in breast cancer clinics: reassuring for patients rather than detecting recurrence. Psycho-Oncology 14, 94–101. Beaver, K., Bogg, J., Luker, K., 1999. Decision-making role preferences and information needs: a comparison of colorectal and breast cancer. Health Expectations 2, 266–276. Benson, J., Britten, N., 1996. Respecting the autonomy of cancer patients when talking with their families: qualitative analysis of semistructured interviews with patients. British Medical Journal 313, 729–731. Britten, N., 2000. Qualitative interviews in health care research. In: Pope, Mays (Eds.), Qualitative Research in Health Care. BMJ Books, London, pp. 11–19 (Chapter 2). Carers UK. www.carersonline.org.uk. Accessed 27.06.05. Chalmers, K., Thomson, K., Degner, L.F., 1996. Information, support and communication needs of women with a family history of breast cancer. Cancer Nursing 19 (3), 204–213. Coleman, M.P., Babb, P., Damiecki, P., et al., 1999. Cancer Survival Trends in England and Wales 1971–1995. HMSO, London. Degner, L.F., Kristjanson, L.J., Bowman, D., et al., 1997. Information needs and decisional preferences in women with breast cancer. Journal of the American Medical Association 277, 1485–1492. Degner, L.F., Davison, B.J., Sloan, J.A., Mueller, B., 1998. Development of a scale to measure information needs in cancer care. Journal of Nursing Measurement 1998 (6), 137–153. Department of Health, 1995. A Policy for Commissioning Cancer Services. Calman-Hine Report. Department of Health, London. Department of Health, 1998. Caring for Carers. Department of Health, London. Department of Health, 2000. NHS Cancer Plan. Department of Health, London. Eaton, L., 2002. Europeans and Americans turn to Internet for health information. British Medical Journal 325, 989. Fallowfield, L., Jenkins, V., 1999. Effective communication skills are the key to good cancer care. European Journal of Cancer 35 (11), 1592–1597. Field, D., Dand, P., Ahmedzai, S., Biswas, B., 1992. Care and information received by lay carers of terminally ill patients at the Leicestershire Hospice. Palliative Medicine 6, 237–245. Galloway, S., Graydon, J., Harrison, et al., 1997. Informational needs of women with recent diagnosis of breast cancer: development of initial testing of a tool. Journal of Advanced Nursing 25 (6), 1175–1183. Grande, G.E., Farquhar, M.C., Barclay, S.I., Todd, C.J., 2004. Valued aspects of primary palliative care: content analysis of bereaved
ARTICLE IN PRESS Informal carers of women treated for breast cancer carers’ descriptions. British Journal of General Practice 54 (507), 772–778. Gysels, M., Richardson, A., Higginson, I., 2004. Communication training for health professionals who care for patients with cancer: a systematic review of effectiveness. Supportive Care in Cancer 12 (10), 692–700. Harding, R., Higginson, 2003. What is the best way to help caregivers in cancer and palliative care? Palliative Medicine. A systematic literature review of interventions and their effectiveness 17, 63–74. Harrison-Woerke, D.E., Graydon, J.E., 1993. Perceived information needs of breast cancer patients receiving radiation therapy after excisional biopsy and axillary node dissection. Cancer Nursing 16 (6), 449–455. Hilton, B.A., 1996. Getting back to normal: the family experience during early stage breast cancer. Oncology Nursing Forum 23 (4), 605–614. Hilton, B.A., Crawford, J.A., Tarko, M.A., 2000. Men’s perspectives on individual and family coping with their wives breast cancer and chemotherapy. Western Journal of Nursing Research 22, 438–459. Kilpatrick, M.G., Kristjanson, L.J., Tataryn, D.J., Fraser, V.H., 1998. Information needs of husbands of women with breast cancer. Oncology Nursing Forum 25 (9), 1595–1601. Luker, K.A., Beaver, K., Leinster, S.J., Owens, R.G., Degner, L.F., Sloan, J.A., 1995. The information needs of women newly diagnosed with breast cancer. Journal of Advanced Nursing 22 (1), 134–141. Luker, K.A., Beaver, K., Leinster, S.J., Owens, R.G., 1996. The information needs of women with breast cancer: a follow up study. Journal of Advanced Nursing 23, 487–495. Luker, K.A., Wilson, K., Pateman, B., Beaver, K., 2003. The role of district nursing: perspectives of cancer patients and their carers before and after hospital discharge. European Journal of Cancer Care 12, 308–316. Michie, S., Rosebert, C., Heaversedge, J., Madden, S., Parbhoo, S., 1996. The effects of different kinds of information on women
25 attending an out-patient breast clinic. Psychology, Health & Medicine 1 (3), 285–296. Miles, M.B., Huberman, A.M., 1994. Qualitative Data Analysis. Sage Publications Ltd, London. Morris, S.M., Thomas, C., 2002. The need to know: informal carers and information. European Journal of Cancer Care 11, 183–187. Northouse, L., 1989. The impact of breast cancer on patients and husbands. Cancer Nursing 12 (5), 276–284. Northouse, L., Kershaw, T., Mood, D., Schafenacker, A., 2005. Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregiver. PsychoOncology 14, 478–491. Rees, C.E., Bath, P.A., Lloyd-Williams, M., 1998. The information concerns of spouses of women with breast cancer: patients’ and spouses perspectives. Journal of Advanced Nursing 28 (6), 1249–1258. Rose, K.E., 1999. A qualitative analysis of the information needs of informal carers of terminally ill cancer patients. Journal of Clinical Nursing 8, 81–88. Samms, M.C., 1999. The husbands untold account of his wife’s breast cancer: a chronological analysis. Oncology Nursing Forum 26 (8), 1351–1358. Simpson, M., Buckman, R., Stewart, M., 1991. Doctor–patient communication: the Toronto Consensus Statement. British Medical Journal 303, 1385–1387. Sloan, J.A., Doig, W., Yeung, A., 1994. A Manual to Carry Out Thurstone Scaling and related Analytic Procedures. Manitoba Nursing Research Institute Technical Report #11, University of Manitoba, Canada. Stewart, M.A., 1996. Effective physician–patient communication and health outcomes: a review. Canadian Medical Association Journal 152, 1423–1433. Ziebland, S., Chapple, A., Dumelow, C., Evans, J., Prinjha, S., Rozmovits, L., 2004. How the internet affects patients’ experience of cancer: a qualitative study. British Medical Journal 328, 564–570.