- Email: [email protected]
The information-seeking behaviours of partners of men with prostate cancer: a qualitative pilot study
Patient Education and Counseling 54 (2004) 179–185
The information-seeking behaviours of partners of men with prostate cancer: a qualitative pilot study Annie K. Feltwell a , Charlotte E. Rees b,∗ b
a Behavioural Sciences Section, Division of Psychiatry, University of Nottingham, Nottingham, UK Institute of Clinical Education, Peninsula Medical School, Tamar Science Park, ITTC Building, Davy Road, Plymouth PL6 8BX, UK
Received 24 September 2002; received in revised form 26 June 2003; accepted 3 July 2003
Abstract This pilot study explores in depth the information-seeking behaviours of partners of men with prostate cancer. Six men with prostate cancer and their partners participated in one mini focus group discussion or four couple interviews. Theme analysis by two independent analysts produced three related themes: partners’ information-seeking behaviours; partners’ information-avoiding behaviours; and the conflict between seeking and avoiding information. The information-seeking behaviours of partners were individualistic, with some partners seeking voluminous information and others avoiding information. Partners sought information to help reduce their feelings of anxiety and uncertainty, to help them participate in the decision-making process, to help them care for their partner and to ensure that they had their information needs met. Partners avoided information to reduce their levels of fear and worry and to maintain a sense of normality. They failed to seek information from healthcare professionals because they felt disempowered and pressurised for time during patient–physician consultations. The information-seeking behaviours of partners changed over time and across situations and their behaviours were sometimes different from those of their partners (the patients), with some partners exhibiting more information-seeking behaviour than patients. The findings within each of these themes and their practice implications are discussed in this paper. © 2003 Elsevier Ireland Ltd. All rights reserved. Keywords: Prostate cancer; Information-seeking behaviours; Partners
1. Introduction Approximately 15,000 new cases of prostate cancer are diagnosed each year in the United Kingdom and the disease accounts for about 8000 deaths per annum [1]. Information has been found to have many benefits for patients and their families, such as helping the process of decision-making and increasing adherence [2]. Several studies [3] have explored the information needs of men with prostate cancer and the information needs of their partners. These studies have suggested that men with prostate cancer and their partners have great needs for information, especially medical-technical information such as the likelihood of cure, stage of the disease and types of treatments available. A more comprehensive review of this literature can be found in Echlin and Rees [4]. However, Fallowfield [5] argued that when assessing individuals’ information needs, their information-seeking behaviours must be taken into consideration. Nonetheless, ∗ Corresponding author. Tel.: +44-1752-238009; fax: +44-1752-238001. E-mail address: [email protected] (C.E. Rees).
few studies [6–10] have explored the information-seeking behaviours of men with prostate cancer and their partners. Heyman and Rosner [6] investigated patients’ and spouses’ experiences of prostate cancer and the impact of the disease on their relationship. Twelve couples were recruited from a prostate cancer support group in the United States and eight couples were selected from a urologist’s caseload. Individuals recruited from the support group participated in focus group discussions and individuals recruited via the urologist were interviewed individually. The authors reported that participants felt shocked after the diagnosis and despite feeling the need to take urgent action, the shock prohibited them from adopting active coping strategies like information-seeking behaviour. This conflict caused anxiety and sometimes anger in both patients and their spouses. However, participants believed that information was a tool to gain control over their situations before treatment decision-making. At this time, many men were emotionally numb, unable to formulate questions and retain information. Their partners played an important role at this time, often searching for information on behalf of men with prostate cancer.
0738-3991/$ – see front matter © 2003 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/S0738-3991(03)00212-X
180
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
O’Rourke and Germino [7] conducted a pilot study to explore decision-making in 11 men with prostate cancer and 6 of their spouses. Men who had already made their treatment decisions and their partners were recruited from a self-help group to participate in a focus group discussion. No formal interview schedule was used in this pilot study. Instead, a single orienting question was asked, and then a round-robin technique was used to elicit the data. At diagnosis, the participants described a pressing need to make a treatment decision due to the distressing nature of their symptoms but reported feeling panicked, which interfered with their ability to search for information. The researchers found that after the initial shock of diagnosis, both men with prostate cancer and their spouses invested considerable time and energy in seeking information about the disease. However, this left many couples feeling confused. Gray et al. [8] described the experiences of men with prostate cancer and their spouses between diagnosis and surgery. Men with prostate cancer who had chosen to have surgery but had not yet undergone treatment and their partners were eligible. Eighty-three couples were referred to the researchers by 16 urologists, of which 34 (41%) couples took part. Guided interviews were conducted with the men and their partners separately but simultaneously. All participants stated that they felt a responsibility to learn as much as possible, with many couples conducting an extensive search for information. For some couples, gathering information was beneficial but others found this task overwhelming and became confused by the abundance of conflicting information. Lavery and Clarke [9] assessed the coping and marital adjustment of men with prostate cancer and their spouses. Twelve men with prostate cancer and their spouses were recruited through two urologists in a private practice and participated in semi-structured interviews. One quarter of the data was analysed independently by an expert rater with inter-rater agreement over 90%. The authors found that more partners (n = 7) than men with prostate cancer (n = 5) used information-seeking as a coping strategy. Spouses frequently initiated the search for information and raised cancer-related issues for discussion between the couple. Rees et al. [10] conducted a pilot study to investigate the relationship between the information-seeking behaviours and information needs of partners of men with prostate cancer. To maintain patient autonomy, partners were recruited by approaching a random sample of 150 men with prostate cancer on the database of a national UK prostate cancer charity. Thirty-nine partners took part by completing the monitoring subscale of the Miller Behavioural Style Scale (MBSS) [11] and an adaptation of the Family Inventory of Needs—Husbands (FIN-H) [12]. These scales measured information-seeking behaviours and information needs respectively. The authors found that partners scored highly on the MBSS, demonstrating their propensities to seek information, and highly on the FIN-H, demonstrating their great needs for information. Significant and positive correla-
tions existed between participants’ information-seeking behaviours and their needs for information, suggesting that as individuals’ needs for information increased so too did their propensities to seek information. The authors concluded that researchers and healthcare professionals needed to take into consideration the information-seeking behaviours of patients and their family members when identifying their information needs. However, these studies have a number of methodological limitations that must be taken into consideration when interpreting their results. First, with the exception of Lavery and Clarke [9], none of the qualitative studies employed an independent rater to analyse part of their data, thus casting doubt on the reliability of their analyses. Also, the response rate for the one quantitative study [10] was low, making it possible that the sample was biased and systematically different from non-responders, threatening the external validity of their findings. However, despite these methodological limitations, these studies have started to contribute to the literature on the information-seeking behaviours of men with prostate cancer and their partners. However, none of these studies had the sole aim of exploring in depth the information-seeking behaviours of partners of men with prostate cancer. This is important given that partners may be more likely to seek information compared to patients [6,9]. Therefore, this pilot study begins to explore in depth the rich views and experiences of men with prostate cancer and their partners concerning the information-seeking and information-avoiding behaviours of partners.
2. Methods This pilot study employed a qualitative design to explore in depth the information-seeking behaviours of partners of men with prostate cancer. Focus group methodology was chosen initially because the interaction among group members often produces data unobtainable using other qualitative methods like individual interviews. However, some participants were unable to travel to a group discussion, so in most cases couple interviews were carried out in participants’ own homes. A total of one mini focus group (n = 4) and four couple interviews (n = 8) were conducted. 2.1. Sampling and recruitment procedures Men with prostate cancer and their partners were sampled opportunistically during October and November 2002. Although this sampling method did not yield a representative sample, it provided a sample that exhibited a range of views concerning the information-seeking behaviours of partners of men with prostate cancer. The inclusion criteria were that individuals had to have prostate cancer or be the partner of a man with prostate cancer and participants had to be able to speak English.
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
After receiving ethics approval, 63 men with prostate cancer who attended urology clinics at Nottingham City Hospital in the UK and their partners were invited to participate in this pilot study. These men were sent an invitation pack by post, which included an information sheet explaining the purpose of the study, a research consent form and a Freepost envelope. The invitation pack also included a sealed envelope containing similar documents for their partner. To maintain patient autonomy, the men were instructed to give this sealed envelope to their partner only if they had no objection to them participating in the study. If one or both parties were interested in taking part they were asked to complete the research consent form and return it to AF in the Freepost envelope provided. On receipt of the consent forms, AF contacted respondents by phone to arrange a convenient date, time and location for the interviews to take place. 2.2. Materials The 10-item personal details questionnaire collected demographic and illness-related details from the participants. Demographic items included their age, gender, ethnic origin, employment histories (to calculate socio-economic class) and educational level. Illness-related items included the month and year of diagnosis and any treatments undergone by the man with prostate cancer. Although the interviews were relatively unstructured, the interview guide contained a number of distinct sections: welcome, introduction, anonymity, ground rules, warm up, clarification question, key questions, concluding question and conclusion. The primary purpose of this guide was to act as an aid to memory for the interviewer. 2.3. Interview procedures The interviewer (AF or CR) welcomed participants and anonymity was discussed. In order to manage the mini focus group discussion and couple interviews, ground rules were outlined to the participants. They were informed that only one person should speak at a time, there were no right or wrong answers, they did not have to speak in any particular order and they did not have to agree with others but needed to state their points of view without making negative comments about the views or experiences of others. The participants were also informed that they might be interrupted to redirect the conversation. Focus group participants were asked to introduce themselves to the group. Focus group and interview participants were asked to express what the word ‘information’ meant to them, so drawing them to the specific topic of inquiry. They could discuss issues that they felt were important but were interrupted if they digressed to such an extreme that they no longer focused on issues relevant to the study. In these cases, they were brought back to the topic of inquiry using key questions such as “from who or where have you sought information?” Finally, participants were asked to summarise what they thought were the most
181
important issues concerning partners’ information-seeking behaviours. After taking part in the interviews, participants were thanked for their time and were asked to complete the demographic questionnaire before they left the meeting. 2.4. Data analysis All of the interviews were audiotaped and transcribed in full. The transcripts were theme analysed using an iterative process composed of several stages. The first analytic stage involved the identification of strong themes running through the data. The second stage involved the identification of information units, i.e. ‘the smallest amount of information that is informative by itself’ [13] (p. 106). The third stage involved the categorisation of the information units. Stages one to three were carried out independently by two analysts (AF and CR) for two of the five transcripts (i.e. 40% of the data). The fourth stage involved the analysts comparing their themes, which allowed the determination of inter-rater reliability, and then any differences were negotiated. The percentage agreement between the two analysts was 82.6% (focus group transcript) and 86.2% (first couple interview transcript). Corresponding verbatim quotations were used to support all themes. All names appearing in this report are false, to protect participant anonymity. Responses to the demographic questionnaire were analysed using SPSS Version 10.0. Exploratory data analysis was carried out to determine the distribution of continuous variables. Medians and inter-quartile ranges were established for continuous variables (e.g. age) and frequencies and percentages were determined for categorical variables (e.g. gender). Socio-economic class was established following guidelines on standard occupational classification [14]. Validity was established by participant evaluation of the findings. All 12 participants were sent a copy of the results with an evaluation sheet. Seven (58.3%) participants, including men with prostate cancer and their partners, returned the evaluation sheets. All of them (100%) stated that the results were a fair interpretation of the interviews in which they participated.
3. Results Of the 63 men invited to participate in this pilot study, 6 (9.5%) eventually took part with their partners. Participants ranged in age from 54 to 84 years (median = 67.5, inter-quartile range = 66–70.5). All partners (n = 6, 100%) were female and all participants (n = 12, 100%) were white, married and came from non-manual socio-economic classes [14]. The age at which participants left full-time education ranged from 11 to 40 years (median = 15, inter-quartile range = 14–16). The number of months since men’s diagnoses ranged from 20 to 61 months (median = 54, inter-quartile range = 29–58). Four men (67%) had
182
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
received hormone therapy, two men (33%) were undergoing watchful waiting and one man (17%) had undergone radiotherapy.
Freda: Yes, I do the same with my own doctor, if I want to know I ask her straight out. I think it pays you, go in and ask what you want to know. (Freda, aged 84)
3.1. Partners’ information-seeking behaviours
3.2. Partners’ information-avoiding behaviours
Some partners actively sought information about prostate cancer from a variety of sources and providers, including healthcare professionals, their partners (the patients), other family members, leaflets and booklets, the Internet, magazines and newspapers and television. One partner explained how she sought information about her husband’s condition by asking his consultant questions:
Some partners also avoided information about prostate cancer. Interestingly, the older woman who previously stated that she asks doctors lots of questions, also stated that:
I go in [to see the consultant] with him [husband] because I question him [consultant]. I question Dr X. (Freda, aged 84) Another partner explained how she read newspaper articles about celebrities with cancer avidly: Katherine: Yeah, I read about Mr. Spencer, I read about that comedian that died with cancer . . . . AF: Harry Secombe? And did you read about Fergie’s .... Katherine: Fergie’s father, oh yes, nothing escapes me from the paper. (Katherine, aged 66) There appeared to be a number of different reasons for partners seeking information. Some partners sought information to reduce their feelings of uncertainty and anxiety. Other partners sought information in order to help care for their partners. Some partners sought information so that they could help inform other family members about the patient’s condition and some partners sought information to help make decisions about their partner’s treatment and their lifestyle. One partner explained how she and her husband sought information regarding a new prostate cancer treatment in America, so that they could make decisions about whether to spend their money on this new treatment or on other things like going on holiday: If Mr. X says, ‘that [new treatment] isn’t going to make that much difference’, you can make the lifestyle decision that the money we have got left, we will have two more holidays. (Dorothy, aged 54) Some partners suggested that they had to actively seek information in order to get their information needs met. One partner explained that she would not have been told any information about her husband’s condition by his consultant if she had not actively sought information from him by asking questions: Freda: You wouldn’t get to know anything [if you don’t ask for the information]. CR: It is only because you ask?
The least you know the better. (Freda, aged 84) Participants mentioned a number of reasons for wanting to avoid information. Some partners avoided information because they feared information and thought it would cause them to worry. One partner explained that although she wanted to talk to other women whose partners had prostate cancer when her husband was first diagnosed with the disease, she did not want to get information from other women at the time of the interview, because she thought it would be too frightening: Claire: I don’t feel the need to at the moment [talk to other partners]. At the time [around diagnosis] I felt as though I wanted to know something or talk to somebody who had had the experience . . . in some ways you know people who’ve had it . . . and that’s why sometimes people don’t want to know because err . . . . John: it’s frightening. Claire: it’s frightening. (Claire, aged 66 and John, aged 70) Other partners avoided information in an attempt to maintain some sense of normality in their lives. One partner explained how she and her husband avoided talking about prostate cancer in order to get back to normal, but sometimes found it difficult to gauge when she should talk about the disease with her husband: We haven’t got an ostrich attitude to it but I find it difficult to know when it’s right to talk about it. (Dorothy, aged 54) Some partners failed to seek information (thereby avoiding information) because they felt disempowered and lacked confidence in seeking information. One partner explained how she felt unable to seek information from her husband’s consultant because she did not feel included in the patient–physician consultation: Now, like the lady [to Freda], she asks, now I don’t because Mr. X, he’s completely looking at Rupert [husband], not me, he is talking to Rupert . . . so I don’t say nothing, ‘cause I’m not the type to push forward, although you want to know. (Jennifer, aged 68) Other partners failed to seek information from consultants because they felt that their time was pressured within the consultation. One partner explained that she would like to have talked openly with the consultant but the idea that
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
he was a busy man stopped her from pursuing questioning him: We’re not wimps . . . we want to know the facts, but by the same rule you are very conscious that they are very busy people and you can’t sit and have a chat, you don’t feel that you can open up for a chat like this. (Dorothy, aged 54) Some partners failed to seek information from sources like leaflets because they were not aware of the existence of such materials. Other partners avoided seeking information from sources such as the Internet because they felt they were too old: CR: Have you ever used the Internet? Freda: Oh, I don’t use it. Rupert: You are talking to the wrong age group I think .... Jennifer: I wouldn’t know where to start. (Freda, aged 84, Rupert, aged 70 and Jennifer, aged 68)
183
Another partner explained how she never got to watch any television programmes about cancer because her husband always switched them off: Jennifer: Yes, I can cope with that [television programmes on cancer], but you turn it off. Rupert: No, I don’t like them. Jennifer: So, I never get a chance to look. (Jennifer, aged 68 and Rupert, aged 71) Some partners suggested that men with prostate cancer avoided information more than their partners because of their gender differences: The thing is that women network and I don’t think men do . . . [to husband] you in fact made the comment that we were sat in the waiting room . . . at Mr. X’s surgery and you said quite rightly . . . ‘if this room was full of women you’d all be talking about your problem’, and you would, wouldn’t you? (Dorothy, aged 54)
3.3. Conflict between seeking and avoiding information 4. Discussion and conclusion Interestingly, some partners described a conflict within themselves between wanting to seek information and wanting to avoid information at the same time. One partner explained that although she wanted to avoid information about her husband’s condition, she wanted information so that she could help care for her husband: On the one hand, I don’t want to know what is going to happen because I don’t like the thought of it. On the other hand, being positive, I’d like to know what symptoms Tom is going to get and how I can help him with that. (Dorothy, aged 54) Furthermore, some partners explained that their information-seeking behaviours changed over time and across situations. Other partners described a conflict between their information-seeking behaviours and those of their partners (the patients). Some partners appeared to want more information about prostate cancer compared to patients and this seemed to compromise their information-seeking behaviours. One partner explained how she once wanted to ring a help-line to get some prostate cancer information but did not ring because her husband did not want her to: Claire: I did once see a help-line for prostate cancer sufferers and there was a number, and there was also a local number actually and I was going to phone but my husband said . . . . John: Well, why do we need to? Claire: But my husband didn’t want it. (Claire, aged 66 and John, aged 70)
To our knowledge, this is the first study to explore in depth the information-seeking behaviours of partners of men with prostate cancer. Three related themes emerged from the analysis of the transcripts: partners’ information-seeking behaviours; their information-avoiding behaviours; and the conflict between seeking and avoiding information. With regards to information-seeking behaviours, some partners sought information from a variety of different sources and providers such as healthcare professionals, as has been indicated in previous literature with the partners of women with breast cancer [15]. Partners gave a number of reasons for seeking information; including reducing their anxiety and helping them make informed decisions about treatment. These findings support previous research, which has also found that information helps facilitate the decision-making process for men with prostate cancer [2]. However, not all partners sought information, as has been highlighted by previous research with women with breast cancer [16]. Partners mentioned several reasons for avoiding information, including reducing their sense of fear and regaining a sense of normality, findings supporting earlier breast cancer research [15]. Other partners reported that they failed to seek information from healthcare professionals because they felt disempowered and that their time with their healthcare professionals was limited. Leydon et al. [17] also found that individuals with cancer felt that their consultations were time pressured and that this inhibited their information-seeking behaviour. Finally, some partners failed to seek information from sources such as the Internet because they perceived themselves to be too old. Morrell et al. [18] conducted a survey to document World Wide Web use in middle-aged (ages 40–59), young-old (ages
184
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
60–74), and old-old adults (ages 75–92) and found that old-old adults did have the least interest in using the Web compared with middle-aged and young-old adults. Partners reported sometimes feeling a conflict within themselves between wanting to seek information and wanting to avoid information at the same time. In addition, some partners explained that their information-seeking behaviours changed over time, as has been found in previous literature with women with breast cancer [16]. Rees and Bath [16] found that the fluctuation between information-seeking and information-avoiding behaviours were dependent on situational variables, such as how controllable the stressful situations were perceived to be. Other partners described how their information-seeking behaviours conflicted with those of their partners (the patients). In fact, some partners appeared to want to engage in information-seeking behaviours more than the patients, as has been found in previous research with men with prostate cancer and their partners [6,9]. Some partners suggested that the differences between the information-seeking patterns of men with prostate cancer and their partners could be due to gender. One partner thought that unlike women, male patients did not share their experiences with each other and were less open and communicative than women, a finding supported by previous research [19]. Although this pilot study begins to address the information-seeking behaviours of partners, it does have some limitations that must be taken into consideration when interpreting the results. Although the sample was heterogeneous in terms of age, all of the participants were white and came from non-manual socio-economic classes. Furthermore, all of the patients were undergoing hormone treatment or watchful waiting. None had undergone surgical procedures for their prostate cancer. In addition, it was likely that with so few interviews (n = 5), data saturation was not reached. Although qualitative data is not meant to be generalised to the wider population, this homogeneous and small sample probably failed to yield the broadest possible spectrum of views regarding the information-seeking behaviours of partners of men with prostate cancer. Therefore, more interviews with a broader sample of partners are required to explore in depth the information-seeking behaviours of partners. In this study, men with prostate cancer and their partners were interviewed together, unlike other research that has interviewed men with prostate cancer and their partners simultaneously but separately [8]. We chose to interview couples together for three main reasons. First, because previous research by the second author [20] found that focus group participation rates were poor for the partners of women with breast cancer, largely because they were asked to take part in a discussion without their spouse. Second, because it was anticipated that female partners would have fewer hesitations in being interviewed and may therefore encourage their male partners (the patients) to participate. Finally, because we felt that if couples were interviewed together, we could observe first-hand the interaction and
communication patterns between the couple. However, one could argue that individuals may have been inhibited because they were interviewed with their partners. Therefore, further interviews are needed with just the partners of men with prostate cancer to explore their information-seeking behaviours without possible inhibition from patients. In this study, we aimed to conduct focus group discussions because of the advantages that group discussions have over individual interviews. However, it proved impossible to organise focus group discussions with individuals who were keen on taking part but were unable to travel. Therefore, men with prostate cancer and their partners participated in a mini focus group discussion or couple interviews. To all intents and purposes the methods were the same for the focus group and couple interviews. However, interviewer bias may not have been minimised as effectively in the couple interviews compared to the focus group. Further research is needed which uses one method only rather than a mixture of methods to ensure consistency across data collection methods. Despite these methodological limitations, some conclusions can be drawn from this study. The information-seeking behaviours of partners of men with prostate cancer are individualistic, with some partners seeking voluminous information and others avoiding information. Furthermore, the information-seeking behaviours of some individuals change over time and across situations and may vary from their partners (the patients). 4.1. Practice implications Patient educators like healthcare professionals must take into consideration the information-seeking behaviours of partners when providing information to men with prostate cancer. On the one hand, healthcare professionals should encourage men with prostate cancer to bring their partners to consultations with them and then during consultations make an effort to include partners by answering their questions. On the other hand, healthcare professionals must respect the right of partners and patients to avoid information if they wish. If healthcare professionals are presented with a couple who have different information-seeking behaviours it is up to the healthcare professional to devise strategies that will meet the needs of both individuals. For example, the healthcare professional could provide minimal information during the consultation (thus satisfying the information-avoider) but then give the information-seeker written information (e.g. patient information booklets) to take home with them, so that they are better able to satisfy their great needs for information. Future research should include further interviews with the partners of men with prostate cancer to explore their information-seeking and avoiding behaviours. The finding that information-seeking behaviour varies over time and across situations undermines the idea that informationseeking behaviour is a stable personality trait. Indeed, future
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
research should explore quantitatively, the informationseeking behaviours of partners of men with prostate cancer throughout their cancer journeys. Researchers would then be able to establish whether information-seeking behaviours do vary across time and situations. For example, do the partners of men undergoing active (and potentially curative) treatment have higher rates of information-seeking behaviour compared to the partners of men undergoing palliative care? Acknowledgements The Division of Psychiatry, University of Nottingham supported this work. We would like to thank all of the men with prostate cancer and their partners who participated in this pilot study. We would also like to thank Mr. Mike Bishop (Consultant Urologist, City Hospital) for providing us with the names and addresses of potential participants. References [1] Secretary of State for Health. Saving Lives: Our Healthier Nation. London: The Stationery Office; 1999. [2] Davison BJ, Kirk P, Degner LF, Hassard TH. Information and patient participation in screening for prostate cancer. Patient Educ Counsel 1999;37:255–63. [3] Krol Y, van Dam FS, Horenblas S, Meinhardt W, Muller MJ. Information needs of men with prostate cancer and their partners. Ned Tijdschr Geneeskd 2000;144:431–7. [4] Echlin KN, Rees CE. Information needs and information-seeking behaviours of men with prostate cancer and their partners: a review of the literature. Cancer Nurs 2002;25:35–41. [5] Fallowfield L. Offering choice of surgical treatment to women with breast cancer. Patient Educ Counsel 1997;30:209–14.
185
[6] Heyman EN, Rosner TT. Prostate cancer: an intimate view from patients and wives. Urol Nurs 1996;16:37–44. [7] O’Rourke ME, Germino BB. Prostate cancer treatment decisions: a focus group exploration. Oncol Nurs Forum 1998;25:97–104. [8] Gray RE, Fitch MI, Phillips C, Labreque M, Klotz L. Presurgery experiences of prostate cancer patients and their spouses. Cancer Pract 1999;7:130–5. [9] Lavery JF, Clarke VA. Prostate cancer: patients’ and spouses’ coping and marital adjustment. Psychol Health Med 1999;4:289–302. [10] Rees CE, Sheard CE, Echlin KN. A pilot study investigating the relationship between the information-seeking behaviors and information needs of partners of men with prostate cancer. Patient Educ Counsel 2003;49:257–61. [11] Miller SM. Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat. J Pers Soc Psychol 1987;52:345–53. [12] Kilpatrick MG, Kristjanson LJ, Tataryn DJ. Measuring the information needs of husbands of women with breast cancer: validity and reliability of the family inventory of needs-husbands. Oncol Nurs Forum 1998;25:1347–51. [13] Vaughn S, Schumm JS, Sinagub J. Focus Group Interviews in Education and Psychology. California: Sage; 1996. [14] Office of Population Censuses and Surveys. Standard Occupational Classification, vol. 3. London: Her Majesty’s Stationery Office; 1991. [15] Rees CE, Bath PA. Exploring the information flow: partners of women with breast cancer. Oncol Nurs Forum 2000;27:1267–75. [16] Rees CE, Bath PA. Information-seeking behaviors of women with breast cancer. Oncol Nurs Forum 2001;28:899–907. [17] Leydon GM, Boulton M, Moyniham C, Jones A, Mossman J, Boudioni M, et al. Cancer patients’ information needs and information seeking behaviour: in depth study. Br Med J 2000;320: 909–13. [18] Morrel RW, Mayhorn CB, Bennett J. A survey of World Wide Web use in middle aged and older adults. Hum Factors 2000;42:175–82. [19] Kiss A, Meryn S. Effect of sex and gender on psycho-social aspects of prostate and breast cancer. Br Med J 2001;323:1055–8. [20] Rees CE, Bath PA, Lloyd-Williams M. The information concerns of spouses of women with breast cancer: patients’ and spouses’ perspectives. J Adv Nurs 1998;28:1249–58.
The information-seeking behaviours of partners of men with prostate cancer: a qualitative pilot study Annie K. Feltwell a , Charlotte E. Rees b,∗ b
a Behavioural Sciences Section, Division of Psychiatry, University of Nottingham, Nottingham, UK Institute of Clinical Education, Peninsula Medical School, Tamar Science Park, ITTC Building, Davy Road, Plymouth PL6 8BX, UK
Received 24 September 2002; received in revised form 26 June 2003; accepted 3 July 2003
Abstract This pilot study explores in depth the information-seeking behaviours of partners of men with prostate cancer. Six men with prostate cancer and their partners participated in one mini focus group discussion or four couple interviews. Theme analysis by two independent analysts produced three related themes: partners’ information-seeking behaviours; partners’ information-avoiding behaviours; and the conflict between seeking and avoiding information. The information-seeking behaviours of partners were individualistic, with some partners seeking voluminous information and others avoiding information. Partners sought information to help reduce their feelings of anxiety and uncertainty, to help them participate in the decision-making process, to help them care for their partner and to ensure that they had their information needs met. Partners avoided information to reduce their levels of fear and worry and to maintain a sense of normality. They failed to seek information from healthcare professionals because they felt disempowered and pressurised for time during patient–physician consultations. The information-seeking behaviours of partners changed over time and across situations and their behaviours were sometimes different from those of their partners (the patients), with some partners exhibiting more information-seeking behaviour than patients. The findings within each of these themes and their practice implications are discussed in this paper. © 2003 Elsevier Ireland Ltd. All rights reserved. Keywords: Prostate cancer; Information-seeking behaviours; Partners
1. Introduction Approximately 15,000 new cases of prostate cancer are diagnosed each year in the United Kingdom and the disease accounts for about 8000 deaths per annum [1]. Information has been found to have many benefits for patients and their families, such as helping the process of decision-making and increasing adherence [2]. Several studies [3] have explored the information needs of men with prostate cancer and the information needs of their partners. These studies have suggested that men with prostate cancer and their partners have great needs for information, especially medical-technical information such as the likelihood of cure, stage of the disease and types of treatments available. A more comprehensive review of this literature can be found in Echlin and Rees [4]. However, Fallowfield [5] argued that when assessing individuals’ information needs, their information-seeking behaviours must be taken into consideration. Nonetheless, ∗ Corresponding author. Tel.: +44-1752-238009; fax: +44-1752-238001. E-mail address: [email protected] (C.E. Rees).
few studies [6–10] have explored the information-seeking behaviours of men with prostate cancer and their partners. Heyman and Rosner [6] investigated patients’ and spouses’ experiences of prostate cancer and the impact of the disease on their relationship. Twelve couples were recruited from a prostate cancer support group in the United States and eight couples were selected from a urologist’s caseload. Individuals recruited from the support group participated in focus group discussions and individuals recruited via the urologist were interviewed individually. The authors reported that participants felt shocked after the diagnosis and despite feeling the need to take urgent action, the shock prohibited them from adopting active coping strategies like information-seeking behaviour. This conflict caused anxiety and sometimes anger in both patients and their spouses. However, participants believed that information was a tool to gain control over their situations before treatment decision-making. At this time, many men were emotionally numb, unable to formulate questions and retain information. Their partners played an important role at this time, often searching for information on behalf of men with prostate cancer.
0738-3991/$ – see front matter © 2003 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/S0738-3991(03)00212-X
180
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
O’Rourke and Germino [7] conducted a pilot study to explore decision-making in 11 men with prostate cancer and 6 of their spouses. Men who had already made their treatment decisions and their partners were recruited from a self-help group to participate in a focus group discussion. No formal interview schedule was used in this pilot study. Instead, a single orienting question was asked, and then a round-robin technique was used to elicit the data. At diagnosis, the participants described a pressing need to make a treatment decision due to the distressing nature of their symptoms but reported feeling panicked, which interfered with their ability to search for information. The researchers found that after the initial shock of diagnosis, both men with prostate cancer and their spouses invested considerable time and energy in seeking information about the disease. However, this left many couples feeling confused. Gray et al. [8] described the experiences of men with prostate cancer and their spouses between diagnosis and surgery. Men with prostate cancer who had chosen to have surgery but had not yet undergone treatment and their partners were eligible. Eighty-three couples were referred to the researchers by 16 urologists, of which 34 (41%) couples took part. Guided interviews were conducted with the men and their partners separately but simultaneously. All participants stated that they felt a responsibility to learn as much as possible, with many couples conducting an extensive search for information. For some couples, gathering information was beneficial but others found this task overwhelming and became confused by the abundance of conflicting information. Lavery and Clarke [9] assessed the coping and marital adjustment of men with prostate cancer and their spouses. Twelve men with prostate cancer and their spouses were recruited through two urologists in a private practice and participated in semi-structured interviews. One quarter of the data was analysed independently by an expert rater with inter-rater agreement over 90%. The authors found that more partners (n = 7) than men with prostate cancer (n = 5) used information-seeking as a coping strategy. Spouses frequently initiated the search for information and raised cancer-related issues for discussion between the couple. Rees et al. [10] conducted a pilot study to investigate the relationship between the information-seeking behaviours and information needs of partners of men with prostate cancer. To maintain patient autonomy, partners were recruited by approaching a random sample of 150 men with prostate cancer on the database of a national UK prostate cancer charity. Thirty-nine partners took part by completing the monitoring subscale of the Miller Behavioural Style Scale (MBSS) [11] and an adaptation of the Family Inventory of Needs—Husbands (FIN-H) [12]. These scales measured information-seeking behaviours and information needs respectively. The authors found that partners scored highly on the MBSS, demonstrating their propensities to seek information, and highly on the FIN-H, demonstrating their great needs for information. Significant and positive correla-
tions existed between participants’ information-seeking behaviours and their needs for information, suggesting that as individuals’ needs for information increased so too did their propensities to seek information. The authors concluded that researchers and healthcare professionals needed to take into consideration the information-seeking behaviours of patients and their family members when identifying their information needs. However, these studies have a number of methodological limitations that must be taken into consideration when interpreting their results. First, with the exception of Lavery and Clarke [9], none of the qualitative studies employed an independent rater to analyse part of their data, thus casting doubt on the reliability of their analyses. Also, the response rate for the one quantitative study [10] was low, making it possible that the sample was biased and systematically different from non-responders, threatening the external validity of their findings. However, despite these methodological limitations, these studies have started to contribute to the literature on the information-seeking behaviours of men with prostate cancer and their partners. However, none of these studies had the sole aim of exploring in depth the information-seeking behaviours of partners of men with prostate cancer. This is important given that partners may be more likely to seek information compared to patients [6,9]. Therefore, this pilot study begins to explore in depth the rich views and experiences of men with prostate cancer and their partners concerning the information-seeking and information-avoiding behaviours of partners.
2. Methods This pilot study employed a qualitative design to explore in depth the information-seeking behaviours of partners of men with prostate cancer. Focus group methodology was chosen initially because the interaction among group members often produces data unobtainable using other qualitative methods like individual interviews. However, some participants were unable to travel to a group discussion, so in most cases couple interviews were carried out in participants’ own homes. A total of one mini focus group (n = 4) and four couple interviews (n = 8) were conducted. 2.1. Sampling and recruitment procedures Men with prostate cancer and their partners were sampled opportunistically during October and November 2002. Although this sampling method did not yield a representative sample, it provided a sample that exhibited a range of views concerning the information-seeking behaviours of partners of men with prostate cancer. The inclusion criteria were that individuals had to have prostate cancer or be the partner of a man with prostate cancer and participants had to be able to speak English.
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
After receiving ethics approval, 63 men with prostate cancer who attended urology clinics at Nottingham City Hospital in the UK and their partners were invited to participate in this pilot study. These men were sent an invitation pack by post, which included an information sheet explaining the purpose of the study, a research consent form and a Freepost envelope. The invitation pack also included a sealed envelope containing similar documents for their partner. To maintain patient autonomy, the men were instructed to give this sealed envelope to their partner only if they had no objection to them participating in the study. If one or both parties were interested in taking part they were asked to complete the research consent form and return it to AF in the Freepost envelope provided. On receipt of the consent forms, AF contacted respondents by phone to arrange a convenient date, time and location for the interviews to take place. 2.2. Materials The 10-item personal details questionnaire collected demographic and illness-related details from the participants. Demographic items included their age, gender, ethnic origin, employment histories (to calculate socio-economic class) and educational level. Illness-related items included the month and year of diagnosis and any treatments undergone by the man with prostate cancer. Although the interviews were relatively unstructured, the interview guide contained a number of distinct sections: welcome, introduction, anonymity, ground rules, warm up, clarification question, key questions, concluding question and conclusion. The primary purpose of this guide was to act as an aid to memory for the interviewer. 2.3. Interview procedures The interviewer (AF or CR) welcomed participants and anonymity was discussed. In order to manage the mini focus group discussion and couple interviews, ground rules were outlined to the participants. They were informed that only one person should speak at a time, there were no right or wrong answers, they did not have to speak in any particular order and they did not have to agree with others but needed to state their points of view without making negative comments about the views or experiences of others. The participants were also informed that they might be interrupted to redirect the conversation. Focus group participants were asked to introduce themselves to the group. Focus group and interview participants were asked to express what the word ‘information’ meant to them, so drawing them to the specific topic of inquiry. They could discuss issues that they felt were important but were interrupted if they digressed to such an extreme that they no longer focused on issues relevant to the study. In these cases, they were brought back to the topic of inquiry using key questions such as “from who or where have you sought information?” Finally, participants were asked to summarise what they thought were the most
181
important issues concerning partners’ information-seeking behaviours. After taking part in the interviews, participants were thanked for their time and were asked to complete the demographic questionnaire before they left the meeting. 2.4. Data analysis All of the interviews were audiotaped and transcribed in full. The transcripts were theme analysed using an iterative process composed of several stages. The first analytic stage involved the identification of strong themes running through the data. The second stage involved the identification of information units, i.e. ‘the smallest amount of information that is informative by itself’ [13] (p. 106). The third stage involved the categorisation of the information units. Stages one to three were carried out independently by two analysts (AF and CR) for two of the five transcripts (i.e. 40% of the data). The fourth stage involved the analysts comparing their themes, which allowed the determination of inter-rater reliability, and then any differences were negotiated. The percentage agreement between the two analysts was 82.6% (focus group transcript) and 86.2% (first couple interview transcript). Corresponding verbatim quotations were used to support all themes. All names appearing in this report are false, to protect participant anonymity. Responses to the demographic questionnaire were analysed using SPSS Version 10.0. Exploratory data analysis was carried out to determine the distribution of continuous variables. Medians and inter-quartile ranges were established for continuous variables (e.g. age) and frequencies and percentages were determined for categorical variables (e.g. gender). Socio-economic class was established following guidelines on standard occupational classification [14]. Validity was established by participant evaluation of the findings. All 12 participants were sent a copy of the results with an evaluation sheet. Seven (58.3%) participants, including men with prostate cancer and their partners, returned the evaluation sheets. All of them (100%) stated that the results were a fair interpretation of the interviews in which they participated.
3. Results Of the 63 men invited to participate in this pilot study, 6 (9.5%) eventually took part with their partners. Participants ranged in age from 54 to 84 years (median = 67.5, inter-quartile range = 66–70.5). All partners (n = 6, 100%) were female and all participants (n = 12, 100%) were white, married and came from non-manual socio-economic classes [14]. The age at which participants left full-time education ranged from 11 to 40 years (median = 15, inter-quartile range = 14–16). The number of months since men’s diagnoses ranged from 20 to 61 months (median = 54, inter-quartile range = 29–58). Four men (67%) had
182
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
received hormone therapy, two men (33%) were undergoing watchful waiting and one man (17%) had undergone radiotherapy.
Freda: Yes, I do the same with my own doctor, if I want to know I ask her straight out. I think it pays you, go in and ask what you want to know. (Freda, aged 84)
3.1. Partners’ information-seeking behaviours
3.2. Partners’ information-avoiding behaviours
Some partners actively sought information about prostate cancer from a variety of sources and providers, including healthcare professionals, their partners (the patients), other family members, leaflets and booklets, the Internet, magazines and newspapers and television. One partner explained how she sought information about her husband’s condition by asking his consultant questions:
Some partners also avoided information about prostate cancer. Interestingly, the older woman who previously stated that she asks doctors lots of questions, also stated that:
I go in [to see the consultant] with him [husband] because I question him [consultant]. I question Dr X. (Freda, aged 84) Another partner explained how she read newspaper articles about celebrities with cancer avidly: Katherine: Yeah, I read about Mr. Spencer, I read about that comedian that died with cancer . . . . AF: Harry Secombe? And did you read about Fergie’s .... Katherine: Fergie’s father, oh yes, nothing escapes me from the paper. (Katherine, aged 66) There appeared to be a number of different reasons for partners seeking information. Some partners sought information to reduce their feelings of uncertainty and anxiety. Other partners sought information in order to help care for their partners. Some partners sought information so that they could help inform other family members about the patient’s condition and some partners sought information to help make decisions about their partner’s treatment and their lifestyle. One partner explained how she and her husband sought information regarding a new prostate cancer treatment in America, so that they could make decisions about whether to spend their money on this new treatment or on other things like going on holiday: If Mr. X says, ‘that [new treatment] isn’t going to make that much difference’, you can make the lifestyle decision that the money we have got left, we will have two more holidays. (Dorothy, aged 54) Some partners suggested that they had to actively seek information in order to get their information needs met. One partner explained that she would not have been told any information about her husband’s condition by his consultant if she had not actively sought information from him by asking questions: Freda: You wouldn’t get to know anything [if you don’t ask for the information]. CR: It is only because you ask?
The least you know the better. (Freda, aged 84) Participants mentioned a number of reasons for wanting to avoid information. Some partners avoided information because they feared information and thought it would cause them to worry. One partner explained that although she wanted to talk to other women whose partners had prostate cancer when her husband was first diagnosed with the disease, she did not want to get information from other women at the time of the interview, because she thought it would be too frightening: Claire: I don’t feel the need to at the moment [talk to other partners]. At the time [around diagnosis] I felt as though I wanted to know something or talk to somebody who had had the experience . . . in some ways you know people who’ve had it . . . and that’s why sometimes people don’t want to know because err . . . . John: it’s frightening. Claire: it’s frightening. (Claire, aged 66 and John, aged 70) Other partners avoided information in an attempt to maintain some sense of normality in their lives. One partner explained how she and her husband avoided talking about prostate cancer in order to get back to normal, but sometimes found it difficult to gauge when she should talk about the disease with her husband: We haven’t got an ostrich attitude to it but I find it difficult to know when it’s right to talk about it. (Dorothy, aged 54) Some partners failed to seek information (thereby avoiding information) because they felt disempowered and lacked confidence in seeking information. One partner explained how she felt unable to seek information from her husband’s consultant because she did not feel included in the patient–physician consultation: Now, like the lady [to Freda], she asks, now I don’t because Mr. X, he’s completely looking at Rupert [husband], not me, he is talking to Rupert . . . so I don’t say nothing, ‘cause I’m not the type to push forward, although you want to know. (Jennifer, aged 68) Other partners failed to seek information from consultants because they felt that their time was pressured within the consultation. One partner explained that she would like to have talked openly with the consultant but the idea that
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
he was a busy man stopped her from pursuing questioning him: We’re not wimps . . . we want to know the facts, but by the same rule you are very conscious that they are very busy people and you can’t sit and have a chat, you don’t feel that you can open up for a chat like this. (Dorothy, aged 54) Some partners failed to seek information from sources like leaflets because they were not aware of the existence of such materials. Other partners avoided seeking information from sources such as the Internet because they felt they were too old: CR: Have you ever used the Internet? Freda: Oh, I don’t use it. Rupert: You are talking to the wrong age group I think .... Jennifer: I wouldn’t know where to start. (Freda, aged 84, Rupert, aged 70 and Jennifer, aged 68)
183
Another partner explained how she never got to watch any television programmes about cancer because her husband always switched them off: Jennifer: Yes, I can cope with that [television programmes on cancer], but you turn it off. Rupert: No, I don’t like them. Jennifer: So, I never get a chance to look. (Jennifer, aged 68 and Rupert, aged 71) Some partners suggested that men with prostate cancer avoided information more than their partners because of their gender differences: The thing is that women network and I don’t think men do . . . [to husband] you in fact made the comment that we were sat in the waiting room . . . at Mr. X’s surgery and you said quite rightly . . . ‘if this room was full of women you’d all be talking about your problem’, and you would, wouldn’t you? (Dorothy, aged 54)
3.3. Conflict between seeking and avoiding information 4. Discussion and conclusion Interestingly, some partners described a conflict within themselves between wanting to seek information and wanting to avoid information at the same time. One partner explained that although she wanted to avoid information about her husband’s condition, she wanted information so that she could help care for her husband: On the one hand, I don’t want to know what is going to happen because I don’t like the thought of it. On the other hand, being positive, I’d like to know what symptoms Tom is going to get and how I can help him with that. (Dorothy, aged 54) Furthermore, some partners explained that their information-seeking behaviours changed over time and across situations. Other partners described a conflict between their information-seeking behaviours and those of their partners (the patients). Some partners appeared to want more information about prostate cancer compared to patients and this seemed to compromise their information-seeking behaviours. One partner explained how she once wanted to ring a help-line to get some prostate cancer information but did not ring because her husband did not want her to: Claire: I did once see a help-line for prostate cancer sufferers and there was a number, and there was also a local number actually and I was going to phone but my husband said . . . . John: Well, why do we need to? Claire: But my husband didn’t want it. (Claire, aged 66 and John, aged 70)
To our knowledge, this is the first study to explore in depth the information-seeking behaviours of partners of men with prostate cancer. Three related themes emerged from the analysis of the transcripts: partners’ information-seeking behaviours; their information-avoiding behaviours; and the conflict between seeking and avoiding information. With regards to information-seeking behaviours, some partners sought information from a variety of different sources and providers such as healthcare professionals, as has been indicated in previous literature with the partners of women with breast cancer [15]. Partners gave a number of reasons for seeking information; including reducing their anxiety and helping them make informed decisions about treatment. These findings support previous research, which has also found that information helps facilitate the decision-making process for men with prostate cancer [2]. However, not all partners sought information, as has been highlighted by previous research with women with breast cancer [16]. Partners mentioned several reasons for avoiding information, including reducing their sense of fear and regaining a sense of normality, findings supporting earlier breast cancer research [15]. Other partners reported that they failed to seek information from healthcare professionals because they felt disempowered and that their time with their healthcare professionals was limited. Leydon et al. [17] also found that individuals with cancer felt that their consultations were time pressured and that this inhibited their information-seeking behaviour. Finally, some partners failed to seek information from sources such as the Internet because they perceived themselves to be too old. Morrell et al. [18] conducted a survey to document World Wide Web use in middle-aged (ages 40–59), young-old (ages
184
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
60–74), and old-old adults (ages 75–92) and found that old-old adults did have the least interest in using the Web compared with middle-aged and young-old adults. Partners reported sometimes feeling a conflict within themselves between wanting to seek information and wanting to avoid information at the same time. In addition, some partners explained that their information-seeking behaviours changed over time, as has been found in previous literature with women with breast cancer [16]. Rees and Bath [16] found that the fluctuation between information-seeking and information-avoiding behaviours were dependent on situational variables, such as how controllable the stressful situations were perceived to be. Other partners described how their information-seeking behaviours conflicted with those of their partners (the patients). In fact, some partners appeared to want to engage in information-seeking behaviours more than the patients, as has been found in previous research with men with prostate cancer and their partners [6,9]. Some partners suggested that the differences between the information-seeking patterns of men with prostate cancer and their partners could be due to gender. One partner thought that unlike women, male patients did not share their experiences with each other and were less open and communicative than women, a finding supported by previous research [19]. Although this pilot study begins to address the information-seeking behaviours of partners, it does have some limitations that must be taken into consideration when interpreting the results. Although the sample was heterogeneous in terms of age, all of the participants were white and came from non-manual socio-economic classes. Furthermore, all of the patients were undergoing hormone treatment or watchful waiting. None had undergone surgical procedures for their prostate cancer. In addition, it was likely that with so few interviews (n = 5), data saturation was not reached. Although qualitative data is not meant to be generalised to the wider population, this homogeneous and small sample probably failed to yield the broadest possible spectrum of views regarding the information-seeking behaviours of partners of men with prostate cancer. Therefore, more interviews with a broader sample of partners are required to explore in depth the information-seeking behaviours of partners. In this study, men with prostate cancer and their partners were interviewed together, unlike other research that has interviewed men with prostate cancer and their partners simultaneously but separately [8]. We chose to interview couples together for three main reasons. First, because previous research by the second author [20] found that focus group participation rates were poor for the partners of women with breast cancer, largely because they were asked to take part in a discussion without their spouse. Second, because it was anticipated that female partners would have fewer hesitations in being interviewed and may therefore encourage their male partners (the patients) to participate. Finally, because we felt that if couples were interviewed together, we could observe first-hand the interaction and
communication patterns between the couple. However, one could argue that individuals may have been inhibited because they were interviewed with their partners. Therefore, further interviews are needed with just the partners of men with prostate cancer to explore their information-seeking behaviours without possible inhibition from patients. In this study, we aimed to conduct focus group discussions because of the advantages that group discussions have over individual interviews. However, it proved impossible to organise focus group discussions with individuals who were keen on taking part but were unable to travel. Therefore, men with prostate cancer and their partners participated in a mini focus group discussion or couple interviews. To all intents and purposes the methods were the same for the focus group and couple interviews. However, interviewer bias may not have been minimised as effectively in the couple interviews compared to the focus group. Further research is needed which uses one method only rather than a mixture of methods to ensure consistency across data collection methods. Despite these methodological limitations, some conclusions can be drawn from this study. The information-seeking behaviours of partners of men with prostate cancer are individualistic, with some partners seeking voluminous information and others avoiding information. Furthermore, the information-seeking behaviours of some individuals change over time and across situations and may vary from their partners (the patients). 4.1. Practice implications Patient educators like healthcare professionals must take into consideration the information-seeking behaviours of partners when providing information to men with prostate cancer. On the one hand, healthcare professionals should encourage men with prostate cancer to bring their partners to consultations with them and then during consultations make an effort to include partners by answering their questions. On the other hand, healthcare professionals must respect the right of partners and patients to avoid information if they wish. If healthcare professionals are presented with a couple who have different information-seeking behaviours it is up to the healthcare professional to devise strategies that will meet the needs of both individuals. For example, the healthcare professional could provide minimal information during the consultation (thus satisfying the information-avoider) but then give the information-seeker written information (e.g. patient information booklets) to take home with them, so that they are better able to satisfy their great needs for information. Future research should include further interviews with the partners of men with prostate cancer to explore their information-seeking and avoiding behaviours. The finding that information-seeking behaviour varies over time and across situations undermines the idea that informationseeking behaviour is a stable personality trait. Indeed, future
A.K. Feltwell, C.E. Rees / Patient Education and Counseling 54 (2004) 179–185
research should explore quantitatively, the informationseeking behaviours of partners of men with prostate cancer throughout their cancer journeys. Researchers would then be able to establish whether information-seeking behaviours do vary across time and situations. For example, do the partners of men undergoing active (and potentially curative) treatment have higher rates of information-seeking behaviour compared to the partners of men undergoing palliative care? Acknowledgements The Division of Psychiatry, University of Nottingham supported this work. We would like to thank all of the men with prostate cancer and their partners who participated in this pilot study. We would also like to thank Mr. Mike Bishop (Consultant Urologist, City Hospital) for providing us with the names and addresses of potential participants. References [1] Secretary of State for Health. Saving Lives: Our Healthier Nation. London: The Stationery Office; 1999. [2] Davison BJ, Kirk P, Degner LF, Hassard TH. Information and patient participation in screening for prostate cancer. Patient Educ Counsel 1999;37:255–63. [3] Krol Y, van Dam FS, Horenblas S, Meinhardt W, Muller MJ. Information needs of men with prostate cancer and their partners. Ned Tijdschr Geneeskd 2000;144:431–7. [4] Echlin KN, Rees CE. Information needs and information-seeking behaviours of men with prostate cancer and their partners: a review of the literature. Cancer Nurs 2002;25:35–41. [5] Fallowfield L. Offering choice of surgical treatment to women with breast cancer. Patient Educ Counsel 1997;30:209–14.
185
[6] Heyman EN, Rosner TT. Prostate cancer: an intimate view from patients and wives. Urol Nurs 1996;16:37–44. [7] O’Rourke ME, Germino BB. Prostate cancer treatment decisions: a focus group exploration. Oncol Nurs Forum 1998;25:97–104. [8] Gray RE, Fitch MI, Phillips C, Labreque M, Klotz L. Presurgery experiences of prostate cancer patients and their spouses. Cancer Pract 1999;7:130–5. [9] Lavery JF, Clarke VA. Prostate cancer: patients’ and spouses’ coping and marital adjustment. Psychol Health Med 1999;4:289–302. [10] Rees CE, Sheard CE, Echlin KN. A pilot study investigating the relationship between the information-seeking behaviors and information needs of partners of men with prostate cancer. Patient Educ Counsel 2003;49:257–61. [11] Miller SM. Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat. J Pers Soc Psychol 1987;52:345–53. [12] Kilpatrick MG, Kristjanson LJ, Tataryn DJ. Measuring the information needs of husbands of women with breast cancer: validity and reliability of the family inventory of needs-husbands. Oncol Nurs Forum 1998;25:1347–51. [13] Vaughn S, Schumm JS, Sinagub J. Focus Group Interviews in Education and Psychology. California: Sage; 1996. [14] Office of Population Censuses and Surveys. Standard Occupational Classification, vol. 3. London: Her Majesty’s Stationery Office; 1991. [15] Rees CE, Bath PA. Exploring the information flow: partners of women with breast cancer. Oncol Nurs Forum 2000;27:1267–75. [16] Rees CE, Bath PA. Information-seeking behaviors of women with breast cancer. Oncol Nurs Forum 2001;28:899–907. [17] Leydon GM, Boulton M, Moyniham C, Jones A, Mossman J, Boudioni M, et al. Cancer patients’ information needs and information seeking behaviour: in depth study. Br Med J 2000;320: 909–13. [18] Morrel RW, Mayhorn CB, Bennett J. A survey of World Wide Web use in middle aged and older adults. Hum Factors 2000;42:175–82. [19] Kiss A, Meryn S. Effect of sex and gender on psycho-social aspects of prostate and breast cancer. Br Med J 2001;323:1055–8. [20] Rees CE, Bath PA, Lloyd-Williams M. The information concerns of spouses of women with breast cancer: patients’ and spouses’ perspectives. J Adv Nurs 1998;28:1249–58.