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Women’s help seeking behaviour for self discovered breast cancer symptoms
European Journal of Oncology Nursing 15 (2011) 410e418
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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Women’s help seeking behaviour for self discovered breast cancer symptoms Mairin O’Mahony*, Josephine Hegarty, Geraldine McCarthy Catherine McAuley School of Nursing & Midwifery, Brookfield Health Sciences Complex, University College Cork, Ireland
a b s t r a c t Keywords: Qualitative descriptive design Breast cancer Breast symptoms Help seeking behaviour
Purpose of the research: The aim of the study was to explore women’s Help Seeking Behaviour (HSB) for a self discovered breast symptom, in order to gain understanding of women’s experience of finding a breast symptom and how this influenced their HSB. In addition, the study sought to confirm the appropriateness of the “Help Seeking Behaviour & Influencing Factors” framework, for use in phase two of the study. Methods and sample: A qualitative descriptive method was used involving semi-structured interviews with ten women, ranging in age from 25 to 55 years, who had discovered a breast symptom. Key Results: Women’s HSB ranged from up to one month (n ¼ 6), one to three months (n ¼ 2) and over three months (n ¼ 2), following symptom discovery. The key variables linked to delayed help seeking were denial, fear, social factors and knowledge and beliefs. The study verified that the variables within the “Help Seeking Behaviour and Influencing Factors” framework act as both facilitators and barriers to women’s HSB. Thus, confirming the appropriateness of this framework for a larger quantitative study of women’s help seeking behaviour. Conclusions: The study highlights that despite continued emphasis on early help seeking for breast cancer symptoms, delay is still prevalent amongst women. This reiterates the need for continued emphasis on the message of early detection for breast cancer symptoms. To this end, nurses have a significant role to play in educating women in both clinical and community settings, about breast cancer and early detection practices. Ó 2010 Elsevier Ltd. All rights reserved.
Introduction Breast cancer is the most common malignancy among women in the developed world. In Ireland, breast cancer was the most common female cancer diagnosed during 2000e2004 with an average of 3095 cases reported annually and an average of 947 deaths (Donnelly et al., 2009). It is well established that the earlier the diagnosis of breast cancer is made the more likely it is that women will have a favourable outcome (Richards et al., 1999a, 1999b; Hardin et al., 2006). However, 20e30% of women wait for one month or more before presenting to a Health Care Professional with a self discovered breast symptom (Arndt et al., 2002; Meechan et al., 2002; O’Mahony and Hegarty, 2009a). This paper reports on phase one of a two phased study. In phase one women’s Help Seeking Behaviour (HSB) for a self discovered breast symptom was explored from a qualitative perspective. In phase two a quantitative approach was taken, to further study this topic. Help seeking has been described as “a response to health changes and part of the broader process of health seeking * Corresponding author. E-mail address: [email protected] (M. O’Mahony). 1462-3889/$ e see front matter Ó 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2010.10.011
behaviour” (O’Mahony and Hegarty, 2009b, page E182) and from here on refers to women with a self discovered breast symptom presenting to their general practitioner (GP). A considerable body of literature from both quantitative and qualitative perspectives identified that many factors influence help seeking behaviour (HSB) for self discovered breast symptoms, in terms of actual help seeking (Burgess et al., 1998, 2001; Facione and Dodd, 1995; Facione and Giancarlo, 1998; Meechan et al., 2002, 2003; O’Mahony and Hegarty, 2009a) and intended help seeking (Facione et al., 1997, 2002; Grunfeld et al., 2003; Hunter et al., 2003; Linsell et al., 2008). Such factors act as facilitators and/or barriers to help seeking. Many of these key factors are depicted in the Judgement to Delay Model (Facione et al., 2002) as women’s knowledge and beliefs, relationship constraints, affective responses/psychological factors, personality attributes, health seeking habits, health service system utilisation factors and socio-demographics factors. This model presents the variables that impact on women’s intentions to seek help for hypothetical breast symptoms. It is asserted that “intention is generally one of the most significant predictors of behaviour” (deNooijer et al., 2002 p.368). However, it is also reiterated that while actual help seeking may be expected in certain situations, it is not certain that it will occur in reality. Thus,
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highlighting the need for these variables to be studied in a more realistic situation, in order to verify their relevance to women who are symptomatic. Aim The aim of this phase of the study was to explore women’s HSB for a self discovered breast symptom, from a qualitative perspective, in order to gain understanding of women’s experience of finding a breast symptom and how this influences their HSB. In addition, the study sought to confirm the appropriateness of the “Help Seeking Behaviour & Influencing Factors” framework, developed from an amalgamation of the empirical and theoretical work of Facione et al. (2002); Meechan et al. (2002, 2003); Leventhal et al., 2003 and O’Mahony and Hegarty, 2009a,b (Fig. 1), for use in a subsequent quantitative study on the factors influencing women’s HSB on self discovery of a breast symptom (Phase 2). Access to the sample Letters were sent to the Clinical Research Ethics Committee of the Local Teaching Hospitals, Consultant, Director of Nursing and Quality Unit of a large urban hospital within the Republic of Ireland. Having gained ethical approval and permission to proceed with the study, a letter was sent to the breast care nurse specialists and the cancer care coordinator formally outlining the purpose of the study and requesting their assistance in accessing the sample. Participants were purposively sampled from women attending the breast clinic for the first time, identified to the researcher, by the nursing staff in the clinic. These women were invited to participate in the study by
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the researcher, who approached them prior to their visit with the consultant. Women who met the inclusion criteria of being over 18 years of age, able to speak English and having a self discovered breast symptom with no previous history of breast cancer, were eligible to participate in the study. The study details were explained verbally to women and they were also given a written outline of the study to read if they so wished. Those who were willing to participate, were asked to consent that they were happy for the researcher to contact them at a given telephone number at a convenient time. The purpose of this telephone call was to arrange a suitable time and venue for data collection to take place.
Data collection A qualitative descriptive approach was used. Data collection took place over a three month period utilising semi-structured, audio-taped interviews of 30e40, minute duration. The interviews focused on women’s experience of finding a breast symptom and their associated HSB (n ¼ 10). Interviews took place at a convenient location for participants and included women’s homes (n ¼ 5), the researcher’s workplace (n ¼ 2) and telephone interview (n ¼ 3). The interviews began with an open ended question relating to the experience of symptom discovery. Thereafter, interviews were directed by the use of an interview schedule which was informed by the key categories of the “Help Seeking Behaviour & Influencing Factors” framework (Fig. 1). In addition, women were free to address any other issues which they perceived to have influenced their HSB. A short questionnaire detailing women’s socio-demographic factors and HSB details was administered by the researcher at the end of each interview.
Delayed Diagnosis and Treatment
Knowledge and Beliefs Identity (interpretation of symptom/ symptom type), cause (risk attribution), timeline (likely duration of illness and symptom), consequences (perceived severity of symptom and impact of illness) curability (extent to which symptom/ illness can be cured or controlled), prayer and alternative therapies.
Patient Delay
Psychological Factors Fear, anxiety, worry, distress, uncertainty, depression
Social Factors Role obligations Symptom Disclosure Health Service System Utilisation Perceived access, economic constraints, health insurance, perceptions of prejudice
Help Seeking Behaviour (HSB)
Patient Seeks Help
Health Seeking Habits BSE, Mammography Frequency of visits to GP Prompt diagnosis and Treatment Socio-demographic Factors (Age, nationality, relationship status, educational level, employment status) Fig. 1. “Help seeking behaviour and influencing factors” framework. Developed from an amalgamation of the empirical and theoretical work of Facione et al. (2002); Meechan et al. (2002, 2003); Leventhal et al. (2003) and O’Mahony and Hegarty (2009a).
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Data analysis Data were analysed using qualitative content analysis (Burnard, 1991 and Sandelowski, 2000). Initially, memos and notes were written by the researcher both during and at the end of each interview. All interviews were then transcribed verbatim following which transcripts were read through and notes made on general issues within the transcripts. Transcripts were then coded using the pre-determined categories of the study framework (Fig. 1). However, the researcher continued to be aware of the potential for new categories to emerge depending on women’s articulation of their response to discovery of their breast symptom. Additional categories and subcategories were reviewed and integrated into the existent categories as relevant. Transcripts were re read against the final list of categories and any adjustments made as necessary. At this stage, each transcript was colour coded according to the list of categories and these coded sections of the interviews were extracted and transformed into separate texts. This resulted in one complete text for each of the categories. Finally, keeping copies of the complete interviews at hand for reference, findings relating to each category were written up using verbatim quotes from the interviews to illustrate various issues as deemed necessary by the researcher. Rigour Credibility, dependability, confirmability, transferability and authenticity have been promoted as the major criteria for establishing trustworthiness (rigour) in qualitative research (Guba and Lincoln, 1994; Streubert Speziale and Carpenter, 2007). Credibility and dependability of the findings were ensured through the researcher engaging with the subject matter (Streubert Speziale and Carpenter, 2007). In addition, two research experts were invited to review the transcripts in order to verify that the data were adequately represented by the pre-determined categories (Graneheim and Lundman, 2004). Confirmability is established by inclusion of an audit trail to enable the reader follow the thought processes of the researcher. Transferability of study findings to others in similar situations rests with the potential users (Streubert Speziale and Carpenter, 2007). Authenticity is ensured by the researcher striving to understand the women’s realities and enabling readers to become sensitive to the issues being described (Polit and Beck, 2008) relating to their symptom discovery and HSB. Findings Socio-demographics Ten women took part in the study ranging in age from 25 to 55 years. Nationalities varied from Irish (n ¼ 7), Eastern European (n ¼ 2) and English (n ¼ 1). One woman lived alone, others lived with their husband, partner or family members. Education levels ranged from completion of primary school (n ¼ 1), completion of secondary school (n ¼ 1), diploma (n ¼ 2), university degree (n ¼ 3), post graduate degree (n ¼ 2) to currently undertaking university degree (n ¼ 1). Three women worked in the home, one woman was unemployed, one a full time student and the remaining (n ¼ 5) worked as professionals and non professionals (Table 1). Breast symptom details All women discovered the symptom(s) themselves. Presenting symptoms ranged from breast lump (n ¼ 3), breast pain (n ¼ 4), both lump and pain (n ¼ 2) and bloody nipple discharge (n ¼ 1). Four women had a family history of breast cancer, including aunt
Table 1 Socio-demographic Details. Socio-demographic details Age AgeRange Mean age Standard Deviation Nationality Irish English Lithuanian Polish Marital Status Married Single Relationship Employment Status Homemaker Professional Non professional Student Unemployed professional Live alone Yes No Education level Primary School Secondary School Diploma University degree Post Graduate Qualification University Student
Participants (n ¼ 10) 25e55 years 40 years 10 years 7 1 1 1 6 3 1 3 3 2 1 1 1 9 1 1 2 3 2 1
(P1, P9), mother and aunt (P7) and mother and sister (P8). Four women had friends/social acquaintances with breast cancer (P1, P4, P6, P10) (Table 2). Symptom discovery The precise time and date of symptom discovery was vividly imprinted in women’s minds. Women mentioned the time as being around Christmas (P1), a Friday night (P6), during breast Table 2 Breast symptom, family history, help seeking and health seeking details. Variable Breast symptom details Breast lump Breast pain Both Lump and Pain Bloody Nipple Discharge Family History Mother and sister Mother and aunt Grandmother Aunt Friend/Social acquaintances with breast cancer Help Seeking Behaviour: Time from symptom discovery to GP visitThree months Health Seeking Habits: BSE Never Rarely Weekly Monthly 2 monthly 3 monthly Previous Mammogram Never Once previously Bi-annually
Participants (n ¼ 10) 3 4 2 1 1 1 1 2 4
6 2 2 1 1 1 4 1 2 5 3 2
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feeding (P3), while having a shower (P7), when getting dressed (P8) and the day before hearing about being made redundant (P9). One woman whose symptom was “a small hard lump” began the interview saying: “I found it on the [date, month] and unfortunately the following day I got the bad news that my job, which I absolutely loved, was gone. So, I suppose I kind of went into a tailspin at that time...” (P9). Another woman related: “I was just in the shower. I never had felt anything like that before and I just felt a lump, it was big enough, I think it was about 2 to 3 cms .” (P7). While for another woman, “it was mid November and I just started getting pains in my left breast” (P2). A woman who had just had a new baby described that it was: “in June while I was in the maternity hospital, I was breast feeding and I thought I noticed a little bit of a lump in my right breast, just kind of over the areola” (P3).
Help seeking behaviour (HSB) Women’s help seeking behaviour was categorised into time intervals of up to one month, one to three months, and over three months. Following symptom discovery, women visited their general practitioner (GP) within one month (n ¼ 6) (prompt help seeking); one to three months (n ¼ 2) and over three months (n ¼ 2) (both of which were considered delayed help seeking). One woman who sought help promptly related: “It started on a Friday night and by Sunday it was still there so I thought I had better have it checked out. So I rang my GP on the Monday and got an appointment on the Tuesday... I would be like that, I couldn’t see why you would sit at home worrying about what if, when you can go to the GP and just get it done” (P6). Another told that: “I booked an appointment that day and I went two days later to the GP” (P7). Conversely, two women who delayed recounted: “.and it was 5 weeks before I went to the doctor” (P9).
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“.. frightened I suppose, fear that it could be worse than it turned out to be you automatically think the worst” (P8). to : “very freaked out, just because of my family history. ..I was really upset” (P7). In addition, a sense of it always being there and “thinking about it all the time” (P1) and a combination of both positive and negative feelings were present for women. One woman (who sought help promptly) remembered thinking: “..oh, that is nothing, it can’t be anything, so I wasn’t overly worried, I certainly wasn’t lying awake at night worrying if anything does come out of it, it surely has to be in it’s early stages” (P6). However, this woman vividly described how she momentarily allowed herself to “indulge in that awful scenario” saying: “what if I got cancer and what if I died, who would look after the kids, what would happen? It would just be disastrous I have to say” (P6). Another prompt help seeker, recounted that her: “whole philosophy in life is don’t panic until you need to, you know, start panicking and worrying when you have something to worry about” (P4). Yet, this woman mentioned that she “still was worried” (P4) about the symptom. One woman who delayed HSB mentioned being “terrified” (P9) while another was “scared” as evident in her saying: “I didn’t go to the doctor straight away; I think I was scared really. I think I was just nervous to go to him..I was scared, I was scared in case it would turn out to be breast cancer, I did have those things in my mind” (P10). Amidst the fear, this woman, struggled with trying to be positive relating: “I was positive but scared..still had this scary feeling”(P10). Another woman who delayed expressed a more fatalistic view, based on a previous diagnosis of haematological cancer, saying: “for me it probably would be bad because I would think, have I not done my share” (P3). Denial Denial was apparent in the accounts of the four women who delayed seeking help. One woman who delayed for five weeks said:
While another was:
“I thought if I ignored the symptoms, they would go away.”(P9).
“. waiting roughly around 6 months which was a pretty long time and it wasn’t gone” (P5).
Another woman who delayed for six months recounted that:
Psychological factors Women were asked to describe their thoughts and feelings at the time of symptom discovery and thereafter. Most women described in detail how they felt when they found the breast symptom. Feelings described were individual and ranged from being “a little worried” to “freaked out”. Fear Fear was evident for women, and varied amongst non-delayers, from being “a little worried” (P6) to:
“it kept coming and going and I thought it would go away by itself.. I kind of put it to the back of my mind, I kept myself busy” (P10). Similarly, another woman who delayed for six months also, said that she: “was working and tried not to think about the symptom” (P5). Denial was also apparent in the account of a woman who having recovered from a haematological cancer, delayed for ten weeks, saying: “I suppose, even though I hate to admit it, there is a bit of bury your head in the sand because I just didn’t want to be thinking that there could possibly be anything else wrong, so, a bit of denial” (P3).
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Social factors
Health seeking habits
Social issues were then explored in relation to disclosure of symptoms and role obligations (commitments to work, family or caring for relatives) in order to determine their impact on women’s HSB. Following symptom discovery, all except two women (P5, P10) confided in somebody almost immediately.
Women were asked about their health seeking habits in relation to frequency of visits to their GP generally, performance of breast self examination (BSE) and frequency of mammography (Table 2). Women visited the GP only as necessary. Frequency of BSE performance varied, and seemed to be dependent on women’s knowledge and skills as evident in the responses of three women. One woman, who delayed for three months told that she was:
Symptom disclosure One woman who sought help within 24 h of finding her breast symptom, said: “..you have to tell somebody, look for some support because I think you tend to panic and you think the worst where, I think someone else’s opinion brings it more into perspective, it might not be as serious as you think it is going to be” (P8). Conversely, a woman who delayed for six months related that: “for a long time I didn’t tell and then I told my sister .she was the only person I told ..I know she’d care about me, she is very supportive.you need women.. it was very difficult for me to talk to somebody else.” (P5). While disclosure to another person was supportive, women had reservations about telling family members or significant others as they did not want to worry them as evident in the woman above saying that: “at the beginning I didn’t want to tell my parents, I didn’t want them to worry and I couldn’t really talk about it, I didn’t really want to or I couldn’t” (P5).
“still not 100% to be honest because the GP still didn’t show me.. I asked [GP] for a method or what should I do and [GP] said, ‘well you know you just have a feel around here’ .” (P3). Conversely, a woman who also delayed for six months, expressed confidence in being breast aware, saying: “yes I think I know my breasts and I know if there is something different” (P5). BSE was not always practised on a regular basis by women as one woman who sought help promptly told that prior to this breast symptom experience she: “..would have been fairly ad hoc... I just found it very uncomfortable and just difficult to do” (P6). Five women had mammography previously and all women had either mammography or ultrasound or both as part of the current referral to the breast clinic.
Health service system utilisation factors Role obligations Role obligations in terms of commitments to work, family or caring for relatives and their impact on HSB were also explored. Here, it is evident that family (n ¼ 2) and work commitments (n ¼ 2) impacted on the HSB of the four women who postponed going to the GP for 5 weeks (P9), 10 weeks (P3) and 6 months (P5, P10). Family commitments were apparent for one woman (who delayed seeking help for ten weeks) as she said:
Health service system utilisation factors were explored in relation to women’s perceptions of their access to the health services. Questions related to ease of accessing the GP, having health insurance or a medical card, having a female GP and perceptions of prejudice within the health care system, in general.
“I didn’t really take any notice of it”. first newborn and everything I got totally distracted” (P3).
Health service system Women’s comments on the health service system were positive as evident in the comments of one woman who delayed saying:
And another who delayed help seeking for six months recounted:
“the rate of accessibility to the GP is fantastic” (P3), and another prompt help seeker who was:
“.well I am the type of person that I put everything first before myself, and my family’s problems before mine, I prefer to deal with them and put mine to the background. I would worry more about someone else rather than myself” (P10).
“.very positive towards the health services” saying that she “ would be one of their great defendants really” concluding that “ it is just somewhere along the line things need a little tweaking, but the service is there” (P4).
Work commitments, together with the upset of being made redundant were prevalent in the account of a woman who postponed visiting her GP 5 weeks, as she recounted: “...I worked in [social services] and I worked a lot with the elderly and a lot with carers and they were very dependent on me and I suppose it was more a labour of love, my job, and I suppose I was kind of grieving for that and then there were so many efforts being made to save the ..and I suppose trying to continue working and try and follow your work plan knowing that the curtains are closing and you feel like you are letting people down as well because people had come to depend on you” (P9). Work commitments were also apparent for another woman (who delayed HSB for six months) as she commented on the difficulty of working for six days and “in trying to organise the time” (P5), to go to the GP.
Knowledge and expertise Women expressed confidence in the knowledge and expertise of the various health care professionals. The GP was the first health care professional visited by women and overall, women were complimentary of the GP services. The GP was seen as the gatekeeper to procuring an appointment for further investigations and women expected their GP to refer them onto the breast clinic and to the consultant whom the GP deemed most appropriate. Women were also cognisant of the concept of centre of excellence and of the knowledge and expertise of both the consultants and breast care nurse specialists. Medical cover Medical cover in terms of having private health insurance (n ¼ 5), or being a public patient both with a medical card (n ¼ 4)
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and without a medical card (n ¼ 1) did not appear to impact on women’s HSB. However, one woman who had private health insurance commented:
“I would think only anecdotally really, there is a lady in the parish who was diagnosed a few years ago ..and seeing it kind of on your doorstep, the reality is harsh” (P6).
“for meeting the guy to tell you yes or no, definitely private is better. But like I know people with private health insurance..and they still don’t get appointments. they still have to wait 3 or 4 weeks..it is still not all sunshine on the private side” (P4).
In addition, women who sought help promptly mentioned acquiring information through reading and accessing websites. One woman who described her knowledge as being “hazy” mentioned that she would:
This woman concluded saying “.maybe you have a better chance if you have private health care because of the way the system works that you can push.” (P4). Female GP and perceptions of prejudice Women’s preferences for male or female GP varied with some preferring a female GP for gynaecological and breast problems. On questioning women about their perceptions of prejudice within the health services, incidents were rare (n ¼ 2) and both of these related to family members’ experiences as opposed to the personal experiences of women themselves.
Knowledge and beliefs Women’s knowledge and beliefs about breast cancer were explored using the illness representations element of the commonsense model of self-regulation (Leventhal et al., 2003). This framework helped to capture the core dimensions of women’s knowledge and beliefs relating to breast cancer and its associated symptoms, causes/ risk factors and curability/treatability. Women were also questioned on their beliefs in alternative therapies and the power of prayer. Breast cancer knowledge Women’s knowledge and beliefs about breast cancer varied as did their sources of knowledge. However, most women were aware that a lump in the breast was significant and that early detection of breast cancer was recommended as evident in one woman saying: “the first thing to do is to go to your GP the minute you have any concerns. That would be my belief.. you know, you can wear yourself out worrying about symptoms unless you get them checked out” (P4). Sources of knowledge The knowledge of breast cancer and its associated symptoms emanated from having a family history of breast cancer and other cancers, and having friends and acquaintances with breast cancer, among three women who sought help within one month. In relation to knowledge and family history, one of these women said: “the only knowledge I have really is my sister died from breast cancer .and my mother had a mastectomy late in life, that is the only knowledge I have of breast cancer” (P8). Another acquired knowledge of cancer therapies through both her parents’ experiences with cancer diagnoses as articulated in:
“..try and read up on something if a question came to my head” (P2). Another woman who had a “reasonable understanding” also availed of websites saying : “I went on to sites looking up symptoms and I discovered there are different types of breast cancer” (P4). This was reiterated by another woman who said that she: “ read up the statistic on line and I was falling into all the statistics for what they [the medics] were telling me, it was” (P7). The role of the media in publicising the importance of early help seeking on discovery of cancer symptoms was also highlighted by a prompt help seeker who said: “I think just the knowledge, and I suppose to be fair that is something that has come across over the years, maybe on the television or the radio or whatever that once there is a symptom you really have to go as soon as possible .. they talk a lot about breast check, I think yes, it is quite out there (P6). Conversely, having had a personal history of a haematological cancer caused another woman, who delayed help seeking, to avoid sourcing information as evident in: “ it is not something that I tend to delve into if I was doing any studies or anything like that, it wouldn’t be based on that because I kind of think that I have had my fill and I don’t want anymore” (P3). Risk factors Family history was seen as a risk factor for developing breast cancer. Having had a sister and mother with breast cancer, meant that one prompt help seeker saw herself as being: “a high risk case, being in the family, on the female side” (P8). However, a woman who delayed for ten weeks perceived herself to be at less risk of getting breast cancer due to the absence of a family history as apparent in: “had there been a family history and I found the lump I would have been going straight down to the clinic. but when there was no family history or anything like that I was kind of thinking it was ok” (P3). In relation to having a family history of breast cancer, a sense of foreboding and almost expecting to find a breast symptom was expressed by two women who sought help promptly, as apparent in: “I don’t know why, but somehow it was in the back of my mind that it would probably happen to me too some day but I wasn’t expecting to find anything this soon” (P7). and:
“..I’ve seen chemotherapy, I’ve seen, my mother, I watched my father, he used to have to drink a kind of am radiation treatment. so.. I’ve heard of them” (P2).
“I’d be very lucky if I didn’t get some kind of symptom, I was kind of expecting it”(P8).
Knowledge gained through a neighbour’s experience impacted on the third woman who on being asked about whether she felt well informed about breast cancer related:
Curability/treatability Most women were of the view that breast cancer was curable as evident in a woman who sought help within one month saying:
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“.detection is probably the biggest issue..long term I think that the prognosis is good, if it is caught in time” (P4). Similarly, curability was strongly linked to early detection and treatment as apparent in one woman (who delayed for 10 weeks) commenting: “.a very high cure rate, obviously depending on how quick it is seen” (P3). While another woman (who delayed help seeking for 5 weeks) surmised: “.well, I suppose it all depends on how severe your symptoms are and what stage you are got at” (P9). However, this woman affirmed her belief in the curability of breast cancer saying: “.absolutely, I mean the treatment is getting better all the time” (P9). Conversely, a woman who delayed seeking help for six months expressed a fatalistic view of breast cancer saying: “I just have this view myself that once you get it that that is it” (P10).
Fatalism A sense of fatalism and foreboding and thinking “what if” in relation to the outcome of the symptom was also expressed by some women. A woman who sought help promptly described her thoughts following symptom discovery saying: “. You are thinking what should be if I should die. about death.. you start to think about death and who would look after my daughter and things like this” (P1). Similar thoughts were dwelt upon by another woman, who although was not overly worried and sought help promptly, related: “God, and then I am thinking, am I going to be that statistic, statistically speaking, maybe it could be me. and statistically you feel I have the same chance of it developing into something nasty ” (P6).
Optimism A positive attitude was believed to be helpful to the final outcome in the event of a breast cancer diagnosis as expressed by another woman (prompt help seeker) saying: “I think your mental attitude towards any illness has an awful lot to do with it people with the positive attitude and the outlook that it can be cured, it can be dealt with, I will survive this for the moment.they seem to do better” (P4). This woman concluded with the optimistic belief in the curability of breast cancer based on the experience of other women, commenting: “.when you see people making a full recovery, you know, it gives you hope”(P4).
Alternative therapies On questioning women about their beliefs in alternative therapies, women generally had strong beliefs in conventional medical treatments for breast cancer and considered alternative therapies as an adjunctive treatment as evident in: “I know that they help with body and mind and things like that and that is just as important for healing but the actual killing of the
cancer cells I would put down to conventional medicine as opposed to alternative medicine” (P3). and: “I think they can help, for women who have serious breast cancer where they have chemotherapy and things” (P8). Prayer Women’s beliefs around the use of prayer were also explored. A woman who sought help promptly expressed her belief in prayer, as she said: “ well, I think it helps you in a spiritual sense in making you more positive, I think I would be like that; it would give you a certain amount of strength” (P8). Another woman who delayed help seeking for 5 weeks, articulated her faith saying: “.I mean I would have a strong faith.I mean we clutch at straws.” (P9). This sense of believing in anything was reiterated by another woman (who delayed for six months) stating: “I suppose if it came down to it, you could believe in anything, you could convince yourself of anything as well but if it did come down to it and you were told to go out and eat grass you would do it” (P10). These findings will now be discussed in the context of the literature. Discussion The help seeking behaviour of ten women on self discovery of a breast symptom was explored using the “Help Seeking Behaviour & Influencing Factors” framework (Fig. 1). Findings demonstrated that out of a sample of ten women, six women sought help promptly (within one month) and four women delayed help seeking for one to three months (n ¼ 2) and over three months (n ¼ 2). This confirms findings from previous work cited, where 20e30% of women waited for one month or more before visiting an HCP on self discovery of a breast symptom. In the present study, the key facilitators for women’s HSB were a pragmatic outlook, fear, symptom disclosure to another person, confidence in the health services and overall knowledge about breast symptoms and their associated risks and the importance of early detection of breast cancer. The main barriers to women’s prompt help seeking were denial, fear, family and work commitments and lack of knowledge in relation to family history and risk and perceived incurability of breast cancer. These findings provide insight into women’s experience and confirm the relevance of the key categories within the framework for further study on women’s HSB. Psychological factors The study identified that denial impacted on the HSB of the four women who delayed help seeking for over one month or more. This finding mirrors previous work where denial of the symptom was articulated by women who delayed help seeking on discovery of a breast symptom (O’Mahony, 2001). In addition, varying degrees of fear were prevalent for women causing some to seek help promptly and others to delay. This corroborates with previous studies where fear and anxiety relating to the symptom caused both delayed help seeking (deNooijer et al., 2002a; deNooijer et al., 2002b; Facione and Giancarlo, 1998; Kennedy et al., 2000; Nosarti et al., 2000)
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and prompt help seeking (deNooijer et al., 2002a; deNooijer et al., 2002b; Facione et al., 1997; Facione and Giancarlo, 1998; Meechan et al., 2003; O’Mahony and Hegarty, 2009a). This emphasises the need for HCP’s to be attentive to the emotional needs of women during the symptom assessment period as some may continue to be in denial and others may be extremely worried and fearful of the outcome. Social factors The importance of social support was highlighted in that disclosure of symptoms to another person was seen to impact positively on HSB, as in previous studies (Bish et al., 2005; Burgess et al., 1998, 2008; deNooijer et al., 2002a; Macleod et al., 2009). In addition, competing social roles in terms of family and work commitments acted as barriers to help seeking, as previously emphasised (Burgess et al., 2001; Facione, 1993; Facione and Dodd, 1995; Facione et al., 1997, 2002; Facione and Giancarlo, 1998; Lauver et al., 1995; O’Mahony and Hegarty, 2009a). Thus, the need for HCP’s to be mindful of the fact that some women may have nobody with whom to discuss their symptom and its outcome. In addition, the need for employers and HCP’s to facilitate women with work and family commitments during the assessment and diagnostic period, is highlighted. Health seeking habits While the lack of reliable evidence on the benefits of BSE is recognised (NICE, 2002), women’s breast awareness was assessed by asking them about their BSE practices. Knowledge and performance of BSE varied amongst women in the current sample. Some women expressed confidence in the performance of BSE while others, two of whom delayed, were uncertain about the procedure. However, one woman’s symptom became apparent during breast feeding and the other woman presented with breast pain, thus their symptom discovery and subsequent HSB were unrelated to BSE as highlighted previously (Meechan et al., 2002). In addition, one of the above women alluded to the vague direction that she was given by her GP when asking about BSE. This indicates the need for more support and practical information relating to breast awareness and BSE recommendations for women. Health service system utilisation Health service system utilisation factors impacted positively on women’s HSB and overall, women were complimentary of the GP services. Women’s preferences for male or female GP varied with some preferring a female GP for gynaecological and breast problems as identified by Nosarti et al. (2000). While women recognised the knowledge and expertise of their GP, they expected to be referred to the symptomatic breast clinic for assessment of their breast symptom. This is in keeping with current National and International referral guidelines for GP’s that patients with symptoms suggestive of breast cancer be referred to a symptomatic breast clinic (HSE, 2009; NICE, 2002). While medical cover in terms of public or private did not appear to impact on women’s care, it is anticipated that optimum standards of service and care be provided for all women regardless of their medical insurance cover. Knowledge and beliefs Women’s knowledge and beliefs impacted on HSB as already highlighted in the literature. Most women were aware that a lump in the breast was significant which corroborates with previous studies highlighting that the nature of the symptom (breast lump) facilitates
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HSB (Bish et al., 2005; Burgess et al., 2001, 2008; deNooijer et al., 2002a; deNooijer et al., 2002b; Grunfeld et al., 2003; Meechan et al., 2002). In addition, women were cognisant that early detection of breast cancer was recommended, though this did not always impact positively on their HSB. Family history was believed to be the biggest risk factor for developing breast cancer. However, an over reliance on the perception that the absence of a family history means less risk of getting breast cancer was highlighted in the case of one woman who delayed for 10 weeks due to family commitments. Conversely, a study by Meechan et al. (2002), noted that the presence of a family history of breast cancer caused a tendency for women to delay, suggesting that overall, inaccurate perceptions relating to family history and risk could cause women to delay help seeking. Most women in the current study believed that breast cancer was curable if detected and treated at an early stage, thus, women perceived the symptom and its outcome (consequences) to be more temporary in nature. However, one woman who delayed help seeking for over three months believed that the breast symptom and its associated outcome were permanent and incurable. This fatalistic view was also found amongst some women of ethnic minority groups in previous studies within the Francisco Bay area of the United States (Facione et al., 1997, 2000, 2002; Facione and Giancarlo, 1998). Although, apart from this woman’s view, in the current study, fatalistic beliefs were expressed more in relation to having a family history of breast cancer and almost expecting to find a breast symptom and in thinking “what if” the symptom was diagnosed as breast cancer. In addition, some women were of the view that religious beliefs and having a positive attitude were helpful to the final outcome in the event of a breast cancer diagnosis. While religious beliefs were important to some women, contrary to previous work (Gullatte et al., 2010), a sole reliance in praying to God on finding a breast symptom was not apparent. Notably, however, one woman who articulated having a strong faith, delayed help seeking for 5 weeks. While it could be argued that perhaps her faith gave her the confidence to delay, it was clear that work commitments impacted more on this woman’s delay. Finally, in relation to treatability of breast cancer, while women recognised the value of alternative therapies as an adjunctive treatment, contrary to some women in previous studies (Facione and Giancarlo, 1998; Facione et al., 2000, 2002), a strong belief in the use of conventional medicine for breast cancer treatment, prevailed amongst women in the current study. Again, this could be due to the fact that a lot of women in the aforementioned studies were from ethnic minority groups, many of whom were sceptical of western medicine and believed more in the power of complementary/alternative therapies. Limitations Using a specific framework, this study focused on the help seeking behaviour of ten women on self discovery of a breast symptom. The study is limited due to the small sample size which detracts from the generalisability and transferability of the findings. However, the study provides some insights into the experience of ten women on finding a breast symptom and the factors that influenced their HSB, in an Irish context. In addition, the relevance of the “Help Seeking Behaviour & Influencing Factors” framework, is confirmed for use in a larger quantitative study, of women’s HSB and the associated influencing factors, on self discovery of a breast symptom. Conclusion and recommendations This study expands Health Care Professionals’ understanding of women’s HSB on self discovery of a breast symptom and
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illuminates the key variables linked to delayed help seeking ie: psychological and social factors, knowledge and beliefs. In addition, findings highlight that the variables within the “Help Seeking Behaviour & Influencing Factors” framework act both as facilitators and barriers to women’s HSB. Thus, the appropriateness of this framework for a larger quantitative study of women’s help seeking behaviour is confirmed. Findings highlight that despite continued emphasis on early help seeking for breast symptoms, delay is still prevalent amongst women. This reiterates the need for continued emphasis on the message of early detection of breast cancer. In addition, new ways of addressing barriers to prompt help seeking need to be addressed. To this end, nurses have a significant role to play in educating women in both clinical and community settings, about breast cancer and early detection practices. In addition, the need for all HCP’s to be sensitive to women’s emotional needs and social issues in terms of support, family and work commitments, at the time of symptom discovery and assessment, is highlighted. While the health service system was reviewed favourably by women in the study, the need to maintain this level of service for all women with breast symptoms is crucial. However, it is recognised that nurses and other HCP’s need to be supported in their roles if these recommendations are to be fully realised. While much progress has been made in the early detection and treatment of breast cancer, we can never afford to become complacent and assume that all women will respond promptly to self discovered breast cancer symptoms. Conflict of interests None declared.
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Facione, N.C., Dodd, M.J., Holzemer, W., Melesis, A.I., 1997. Helpseeking for selfdiscovered breast symptoms. Implications for early detection. Cancer Practice 5 (4), 220e227. Facione, N.C., Giancarlo, C.A., 1998. Narratives of breast symptom discovery and cancer diagnosis: psychologic risk for advanced cancer at diagnosis. Cancer Nursing 21 (6), 430e440. Facione, N.C., Giancarlo, C., Chan, L., 2000. Perceived risk and help-seeking behaviour for breast cancer. A ChineseeAmerican perspective. Cancer Nursing 23 (4), 258e267. Facione, N.C., Miaskowski, C., Dodd, M.J., Paul, S.M., 2002. The self-reported likelihood of patient delay in breast cancer: new thoughts for early detection. Preventive Medicine 34 (4), 397e407. Graneheim, U.H., Lundman, B., 2004. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24 (2), 105e112. Grunfeld, E.A., Hunter, M.S., Ramirez, A.J., Richards, M.A., 2003. Perceptions of breast cancer across the lifespan. Journal of Psychosomatic Research 54 (2), 141e146. Guba, E.G., Lincoln, Y.S., 1994. Competing paradigms in qualitative research. In: Denzin, N.K., Lincoln, Y.S. (Eds.), Handbook of Qualitative Research. Sage, London, pp. 105e117. Gullatte, M.M., Brawley, O., Kinney, A., Powe, B., Mooney, K., 2010. Religiosity, spirituality, and cancer fatalism beliefs on delay in breast cancer diagnosis in African American women. Journal of Religious Health 49 (1), 62e72. Hardin, C., Pommier, S., Pommier, R.F., 2006. The relationships among clinician delay of diagnosis of breast cancer and tumor size, nodal status, and stage. American Journal of Surgery 192 (4), 506e508. Health Service Executive (HSE), 2009. National Breast Cancer GP Referral Guidelines. HSE, Dublin. Hunter, M.S., Grunfeld, E.A., Ramirez, A.J., 2003. Help-seeking intentions for breastcancer symptoms: a comparison of the self-regulation model and the theory of planned behaviour. 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Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Women’s help seeking behaviour for self discovered breast cancer symptoms Mairin O’Mahony*, Josephine Hegarty, Geraldine McCarthy Catherine McAuley School of Nursing & Midwifery, Brookfield Health Sciences Complex, University College Cork, Ireland
a b s t r a c t Keywords: Qualitative descriptive design Breast cancer Breast symptoms Help seeking behaviour
Purpose of the research: The aim of the study was to explore women’s Help Seeking Behaviour (HSB) for a self discovered breast symptom, in order to gain understanding of women’s experience of finding a breast symptom and how this influenced their HSB. In addition, the study sought to confirm the appropriateness of the “Help Seeking Behaviour & Influencing Factors” framework, for use in phase two of the study. Methods and sample: A qualitative descriptive method was used involving semi-structured interviews with ten women, ranging in age from 25 to 55 years, who had discovered a breast symptom. Key Results: Women’s HSB ranged from up to one month (n ¼ 6), one to three months (n ¼ 2) and over three months (n ¼ 2), following symptom discovery. The key variables linked to delayed help seeking were denial, fear, social factors and knowledge and beliefs. The study verified that the variables within the “Help Seeking Behaviour and Influencing Factors” framework act as both facilitators and barriers to women’s HSB. Thus, confirming the appropriateness of this framework for a larger quantitative study of women’s help seeking behaviour. Conclusions: The study highlights that despite continued emphasis on early help seeking for breast cancer symptoms, delay is still prevalent amongst women. This reiterates the need for continued emphasis on the message of early detection for breast cancer symptoms. To this end, nurses have a significant role to play in educating women in both clinical and community settings, about breast cancer and early detection practices. Ó 2010 Elsevier Ltd. All rights reserved.
Introduction Breast cancer is the most common malignancy among women in the developed world. In Ireland, breast cancer was the most common female cancer diagnosed during 2000e2004 with an average of 3095 cases reported annually and an average of 947 deaths (Donnelly et al., 2009). It is well established that the earlier the diagnosis of breast cancer is made the more likely it is that women will have a favourable outcome (Richards et al., 1999a, 1999b; Hardin et al., 2006). However, 20e30% of women wait for one month or more before presenting to a Health Care Professional with a self discovered breast symptom (Arndt et al., 2002; Meechan et al., 2002; O’Mahony and Hegarty, 2009a). This paper reports on phase one of a two phased study. In phase one women’s Help Seeking Behaviour (HSB) for a self discovered breast symptom was explored from a qualitative perspective. In phase two a quantitative approach was taken, to further study this topic. Help seeking has been described as “a response to health changes and part of the broader process of health seeking * Corresponding author. E-mail address: [email protected] (M. O’Mahony). 1462-3889/$ e see front matter Ó 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2010.10.011
behaviour” (O’Mahony and Hegarty, 2009b, page E182) and from here on refers to women with a self discovered breast symptom presenting to their general practitioner (GP). A considerable body of literature from both quantitative and qualitative perspectives identified that many factors influence help seeking behaviour (HSB) for self discovered breast symptoms, in terms of actual help seeking (Burgess et al., 1998, 2001; Facione and Dodd, 1995; Facione and Giancarlo, 1998; Meechan et al., 2002, 2003; O’Mahony and Hegarty, 2009a) and intended help seeking (Facione et al., 1997, 2002; Grunfeld et al., 2003; Hunter et al., 2003; Linsell et al., 2008). Such factors act as facilitators and/or barriers to help seeking. Many of these key factors are depicted in the Judgement to Delay Model (Facione et al., 2002) as women’s knowledge and beliefs, relationship constraints, affective responses/psychological factors, personality attributes, health seeking habits, health service system utilisation factors and socio-demographics factors. This model presents the variables that impact on women’s intentions to seek help for hypothetical breast symptoms. It is asserted that “intention is generally one of the most significant predictors of behaviour” (deNooijer et al., 2002 p.368). However, it is also reiterated that while actual help seeking may be expected in certain situations, it is not certain that it will occur in reality. Thus,
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highlighting the need for these variables to be studied in a more realistic situation, in order to verify their relevance to women who are symptomatic. Aim The aim of this phase of the study was to explore women’s HSB for a self discovered breast symptom, from a qualitative perspective, in order to gain understanding of women’s experience of finding a breast symptom and how this influences their HSB. In addition, the study sought to confirm the appropriateness of the “Help Seeking Behaviour & Influencing Factors” framework, developed from an amalgamation of the empirical and theoretical work of Facione et al. (2002); Meechan et al. (2002, 2003); Leventhal et al., 2003 and O’Mahony and Hegarty, 2009a,b (Fig. 1), for use in a subsequent quantitative study on the factors influencing women’s HSB on self discovery of a breast symptom (Phase 2). Access to the sample Letters were sent to the Clinical Research Ethics Committee of the Local Teaching Hospitals, Consultant, Director of Nursing and Quality Unit of a large urban hospital within the Republic of Ireland. Having gained ethical approval and permission to proceed with the study, a letter was sent to the breast care nurse specialists and the cancer care coordinator formally outlining the purpose of the study and requesting their assistance in accessing the sample. Participants were purposively sampled from women attending the breast clinic for the first time, identified to the researcher, by the nursing staff in the clinic. These women were invited to participate in the study by
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the researcher, who approached them prior to their visit with the consultant. Women who met the inclusion criteria of being over 18 years of age, able to speak English and having a self discovered breast symptom with no previous history of breast cancer, were eligible to participate in the study. The study details were explained verbally to women and they were also given a written outline of the study to read if they so wished. Those who were willing to participate, were asked to consent that they were happy for the researcher to contact them at a given telephone number at a convenient time. The purpose of this telephone call was to arrange a suitable time and venue for data collection to take place.
Data collection A qualitative descriptive approach was used. Data collection took place over a three month period utilising semi-structured, audio-taped interviews of 30e40, minute duration. The interviews focused on women’s experience of finding a breast symptom and their associated HSB (n ¼ 10). Interviews took place at a convenient location for participants and included women’s homes (n ¼ 5), the researcher’s workplace (n ¼ 2) and telephone interview (n ¼ 3). The interviews began with an open ended question relating to the experience of symptom discovery. Thereafter, interviews were directed by the use of an interview schedule which was informed by the key categories of the “Help Seeking Behaviour & Influencing Factors” framework (Fig. 1). In addition, women were free to address any other issues which they perceived to have influenced their HSB. A short questionnaire detailing women’s socio-demographic factors and HSB details was administered by the researcher at the end of each interview.
Delayed Diagnosis and Treatment
Knowledge and Beliefs Identity (interpretation of symptom/ symptom type), cause (risk attribution), timeline (likely duration of illness and symptom), consequences (perceived severity of symptom and impact of illness) curability (extent to which symptom/ illness can be cured or controlled), prayer and alternative therapies.
Patient Delay
Psychological Factors Fear, anxiety, worry, distress, uncertainty, depression
Social Factors Role obligations Symptom Disclosure Health Service System Utilisation Perceived access, economic constraints, health insurance, perceptions of prejudice
Help Seeking Behaviour (HSB)
Patient Seeks Help
Health Seeking Habits BSE, Mammography Frequency of visits to GP Prompt diagnosis and Treatment Socio-demographic Factors (Age, nationality, relationship status, educational level, employment status) Fig. 1. “Help seeking behaviour and influencing factors” framework. Developed from an amalgamation of the empirical and theoretical work of Facione et al. (2002); Meechan et al. (2002, 2003); Leventhal et al. (2003) and O’Mahony and Hegarty (2009a).
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Data analysis Data were analysed using qualitative content analysis (Burnard, 1991 and Sandelowski, 2000). Initially, memos and notes were written by the researcher both during and at the end of each interview. All interviews were then transcribed verbatim following which transcripts were read through and notes made on general issues within the transcripts. Transcripts were then coded using the pre-determined categories of the study framework (Fig. 1). However, the researcher continued to be aware of the potential for new categories to emerge depending on women’s articulation of their response to discovery of their breast symptom. Additional categories and subcategories were reviewed and integrated into the existent categories as relevant. Transcripts were re read against the final list of categories and any adjustments made as necessary. At this stage, each transcript was colour coded according to the list of categories and these coded sections of the interviews were extracted and transformed into separate texts. This resulted in one complete text for each of the categories. Finally, keeping copies of the complete interviews at hand for reference, findings relating to each category were written up using verbatim quotes from the interviews to illustrate various issues as deemed necessary by the researcher. Rigour Credibility, dependability, confirmability, transferability and authenticity have been promoted as the major criteria for establishing trustworthiness (rigour) in qualitative research (Guba and Lincoln, 1994; Streubert Speziale and Carpenter, 2007). Credibility and dependability of the findings were ensured through the researcher engaging with the subject matter (Streubert Speziale and Carpenter, 2007). In addition, two research experts were invited to review the transcripts in order to verify that the data were adequately represented by the pre-determined categories (Graneheim and Lundman, 2004). Confirmability is established by inclusion of an audit trail to enable the reader follow the thought processes of the researcher. Transferability of study findings to others in similar situations rests with the potential users (Streubert Speziale and Carpenter, 2007). Authenticity is ensured by the researcher striving to understand the women’s realities and enabling readers to become sensitive to the issues being described (Polit and Beck, 2008) relating to their symptom discovery and HSB. Findings Socio-demographics Ten women took part in the study ranging in age from 25 to 55 years. Nationalities varied from Irish (n ¼ 7), Eastern European (n ¼ 2) and English (n ¼ 1). One woman lived alone, others lived with their husband, partner or family members. Education levels ranged from completion of primary school (n ¼ 1), completion of secondary school (n ¼ 1), diploma (n ¼ 2), university degree (n ¼ 3), post graduate degree (n ¼ 2) to currently undertaking university degree (n ¼ 1). Three women worked in the home, one woman was unemployed, one a full time student and the remaining (n ¼ 5) worked as professionals and non professionals (Table 1). Breast symptom details All women discovered the symptom(s) themselves. Presenting symptoms ranged from breast lump (n ¼ 3), breast pain (n ¼ 4), both lump and pain (n ¼ 2) and bloody nipple discharge (n ¼ 1). Four women had a family history of breast cancer, including aunt
Table 1 Socio-demographic Details. Socio-demographic details Age AgeRange Mean age Standard Deviation Nationality Irish English Lithuanian Polish Marital Status Married Single Relationship Employment Status Homemaker Professional Non professional Student Unemployed professional Live alone Yes No Education level Primary School Secondary School Diploma University degree Post Graduate Qualification University Student
Participants (n ¼ 10) 25e55 years 40 years 10 years 7 1 1 1 6 3 1 3 3 2 1 1 1 9 1 1 2 3 2 1
(P1, P9), mother and aunt (P7) and mother and sister (P8). Four women had friends/social acquaintances with breast cancer (P1, P4, P6, P10) (Table 2). Symptom discovery The precise time and date of symptom discovery was vividly imprinted in women’s minds. Women mentioned the time as being around Christmas (P1), a Friday night (P6), during breast Table 2 Breast symptom, family history, help seeking and health seeking details. Variable Breast symptom details Breast lump Breast pain Both Lump and Pain Bloody Nipple Discharge Family History Mother and sister Mother and aunt Grandmother Aunt Friend/Social acquaintances with breast cancer Help Seeking Behaviour: Time from symptom discovery to GP visit
Participants (n ¼ 10) 3 4 2 1 1 1 1 2 4
6 2 2 1 1 1 4 1 2 5 3 2
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feeding (P3), while having a shower (P7), when getting dressed (P8) and the day before hearing about being made redundant (P9). One woman whose symptom was “a small hard lump” began the interview saying: “I found it on the [date, month] and unfortunately the following day I got the bad news that my job, which I absolutely loved, was gone. So, I suppose I kind of went into a tailspin at that time...” (P9). Another woman related: “I was just in the shower. I never had felt anything like that before and I just felt a lump, it was big enough, I think it was about 2 to 3 cms .” (P7). While for another woman, “it was mid November and I just started getting pains in my left breast” (P2). A woman who had just had a new baby described that it was: “in June while I was in the maternity hospital, I was breast feeding and I thought I noticed a little bit of a lump in my right breast, just kind of over the areola” (P3).
Help seeking behaviour (HSB) Women’s help seeking behaviour was categorised into time intervals of up to one month, one to three months, and over three months. Following symptom discovery, women visited their general practitioner (GP) within one month (n ¼ 6) (prompt help seeking); one to three months (n ¼ 2) and over three months (n ¼ 2) (both of which were considered delayed help seeking). One woman who sought help promptly related: “It started on a Friday night and by Sunday it was still there so I thought I had better have it checked out. So I rang my GP on the Monday and got an appointment on the Tuesday... I would be like that, I couldn’t see why you would sit at home worrying about what if, when you can go to the GP and just get it done” (P6). Another told that: “I booked an appointment that day and I went two days later to the GP” (P7). Conversely, two women who delayed recounted: “.and it was 5 weeks before I went to the doctor” (P9).
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“.. frightened I suppose, fear that it could be worse than it turned out to be you automatically think the worst” (P8). to : “very freaked out, just because of my family history. ..I was really upset” (P7). In addition, a sense of it always being there and “thinking about it all the time” (P1) and a combination of both positive and negative feelings were present for women. One woman (who sought help promptly) remembered thinking: “..oh, that is nothing, it can’t be anything, so I wasn’t overly worried, I certainly wasn’t lying awake at night worrying if anything does come out of it, it surely has to be in it’s early stages” (P6). However, this woman vividly described how she momentarily allowed herself to “indulge in that awful scenario” saying: “what if I got cancer and what if I died, who would look after the kids, what would happen? It would just be disastrous I have to say” (P6). Another prompt help seeker, recounted that her: “whole philosophy in life is don’t panic until you need to, you know, start panicking and worrying when you have something to worry about” (P4). Yet, this woman mentioned that she “still was worried” (P4) about the symptom. One woman who delayed HSB mentioned being “terrified” (P9) while another was “scared” as evident in her saying: “I didn’t go to the doctor straight away; I think I was scared really. I think I was just nervous to go to him..I was scared, I was scared in case it would turn out to be breast cancer, I did have those things in my mind” (P10). Amidst the fear, this woman, struggled with trying to be positive relating: “I was positive but scared..still had this scary feeling”(P10). Another woman who delayed expressed a more fatalistic view, based on a previous diagnosis of haematological cancer, saying: “for me it probably would be bad because I would think, have I not done my share” (P3). Denial Denial was apparent in the accounts of the four women who delayed seeking help. One woman who delayed for five weeks said:
While another was:
“I thought if I ignored the symptoms, they would go away.”(P9).
“. waiting roughly around 6 months which was a pretty long time and it wasn’t gone” (P5).
Another woman who delayed for six months recounted that:
Psychological factors Women were asked to describe their thoughts and feelings at the time of symptom discovery and thereafter. Most women described in detail how they felt when they found the breast symptom. Feelings described were individual and ranged from being “a little worried” to “freaked out”. Fear Fear was evident for women, and varied amongst non-delayers, from being “a little worried” (P6) to:
“it kept coming and going and I thought it would go away by itself.. I kind of put it to the back of my mind, I kept myself busy” (P10). Similarly, another woman who delayed for six months also, said that she: “was working and tried not to think about the symptom” (P5). Denial was also apparent in the account of a woman who having recovered from a haematological cancer, delayed for ten weeks, saying: “I suppose, even though I hate to admit it, there is a bit of bury your head in the sand because I just didn’t want to be thinking that there could possibly be anything else wrong, so, a bit of denial” (P3).
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Social factors
Health seeking habits
Social issues were then explored in relation to disclosure of symptoms and role obligations (commitments to work, family or caring for relatives) in order to determine their impact on women’s HSB. Following symptom discovery, all except two women (P5, P10) confided in somebody almost immediately.
Women were asked about their health seeking habits in relation to frequency of visits to their GP generally, performance of breast self examination (BSE) and frequency of mammography (Table 2). Women visited the GP only as necessary. Frequency of BSE performance varied, and seemed to be dependent on women’s knowledge and skills as evident in the responses of three women. One woman, who delayed for three months told that she was:
Symptom disclosure One woman who sought help within 24 h of finding her breast symptom, said: “..you have to tell somebody, look for some support because I think you tend to panic and you think the worst where, I think someone else’s opinion brings it more into perspective, it might not be as serious as you think it is going to be” (P8). Conversely, a woman who delayed for six months related that: “for a long time I didn’t tell and then I told my sister .she was the only person I told ..I know she’d care about me, she is very supportive.you need women.. it was very difficult for me to talk to somebody else.” (P5). While disclosure to another person was supportive, women had reservations about telling family members or significant others as they did not want to worry them as evident in the woman above saying that: “at the beginning I didn’t want to tell my parents, I didn’t want them to worry and I couldn’t really talk about it, I didn’t really want to or I couldn’t” (P5).
“still not 100% to be honest because the GP still didn’t show me.. I asked [GP] for a method or what should I do and [GP] said, ‘well you know you just have a feel around here’ .” (P3). Conversely, a woman who also delayed for six months, expressed confidence in being breast aware, saying: “yes I think I know my breasts and I know if there is something different” (P5). BSE was not always practised on a regular basis by women as one woman who sought help promptly told that prior to this breast symptom experience she: “..would have been fairly ad hoc... I just found it very uncomfortable and just difficult to do” (P6). Five women had mammography previously and all women had either mammography or ultrasound or both as part of the current referral to the breast clinic.
Health service system utilisation factors Role obligations Role obligations in terms of commitments to work, family or caring for relatives and their impact on HSB were also explored. Here, it is evident that family (n ¼ 2) and work commitments (n ¼ 2) impacted on the HSB of the four women who postponed going to the GP for 5 weeks (P9), 10 weeks (P3) and 6 months (P5, P10). Family commitments were apparent for one woman (who delayed seeking help for ten weeks) as she said:
Health service system utilisation factors were explored in relation to women’s perceptions of their access to the health services. Questions related to ease of accessing the GP, having health insurance or a medical card, having a female GP and perceptions of prejudice within the health care system, in general.
“I didn’t really take any notice of it”. first newborn and everything I got totally distracted” (P3).
Health service system Women’s comments on the health service system were positive as evident in the comments of one woman who delayed saying:
And another who delayed help seeking for six months recounted:
“the rate of accessibility to the GP is fantastic” (P3), and another prompt help seeker who was:
“.well I am the type of person that I put everything first before myself, and my family’s problems before mine, I prefer to deal with them and put mine to the background. I would worry more about someone else rather than myself” (P10).
“.very positive towards the health services” saying that she “ would be one of their great defendants really” concluding that “ it is just somewhere along the line things need a little tweaking, but the service is there” (P4).
Work commitments, together with the upset of being made redundant were prevalent in the account of a woman who postponed visiting her GP 5 weeks, as she recounted: “...I worked in [social services] and I worked a lot with the elderly and a lot with carers and they were very dependent on me and I suppose it was more a labour of love, my job, and I suppose I was kind of grieving for that and then there were so many efforts being made to save the ..and I suppose trying to continue working and try and follow your work plan knowing that the curtains are closing and you feel like you are letting people down as well because people had come to depend on you” (P9). Work commitments were also apparent for another woman (who delayed HSB for six months) as she commented on the difficulty of working for six days and “in trying to organise the time” (P5), to go to the GP.
Knowledge and expertise Women expressed confidence in the knowledge and expertise of the various health care professionals. The GP was the first health care professional visited by women and overall, women were complimentary of the GP services. The GP was seen as the gatekeeper to procuring an appointment for further investigations and women expected their GP to refer them onto the breast clinic and to the consultant whom the GP deemed most appropriate. Women were also cognisant of the concept of centre of excellence and of the knowledge and expertise of both the consultants and breast care nurse specialists. Medical cover Medical cover in terms of having private health insurance (n ¼ 5), or being a public patient both with a medical card (n ¼ 4)
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and without a medical card (n ¼ 1) did not appear to impact on women’s HSB. However, one woman who had private health insurance commented:
“I would think only anecdotally really, there is a lady in the parish who was diagnosed a few years ago ..and seeing it kind of on your doorstep, the reality is harsh” (P6).
“for meeting the guy to tell you yes or no, definitely private is better. But like I know people with private health insurance..and they still don’t get appointments. they still have to wait 3 or 4 weeks..it is still not all sunshine on the private side” (P4).
In addition, women who sought help promptly mentioned acquiring information through reading and accessing websites. One woman who described her knowledge as being “hazy” mentioned that she would:
This woman concluded saying “.maybe you have a better chance if you have private health care because of the way the system works that you can push.” (P4). Female GP and perceptions of prejudice Women’s preferences for male or female GP varied with some preferring a female GP for gynaecological and breast problems. On questioning women about their perceptions of prejudice within the health services, incidents were rare (n ¼ 2) and both of these related to family members’ experiences as opposed to the personal experiences of women themselves.
Knowledge and beliefs Women’s knowledge and beliefs about breast cancer were explored using the illness representations element of the commonsense model of self-regulation (Leventhal et al., 2003). This framework helped to capture the core dimensions of women’s knowledge and beliefs relating to breast cancer and its associated symptoms, causes/ risk factors and curability/treatability. Women were also questioned on their beliefs in alternative therapies and the power of prayer. Breast cancer knowledge Women’s knowledge and beliefs about breast cancer varied as did their sources of knowledge. However, most women were aware that a lump in the breast was significant and that early detection of breast cancer was recommended as evident in one woman saying: “the first thing to do is to go to your GP the minute you have any concerns. That would be my belief.. you know, you can wear yourself out worrying about symptoms unless you get them checked out” (P4). Sources of knowledge The knowledge of breast cancer and its associated symptoms emanated from having a family history of breast cancer and other cancers, and having friends and acquaintances with breast cancer, among three women who sought help within one month. In relation to knowledge and family history, one of these women said: “the only knowledge I have really is my sister died from breast cancer .and my mother had a mastectomy late in life, that is the only knowledge I have of breast cancer” (P8). Another acquired knowledge of cancer therapies through both her parents’ experiences with cancer diagnoses as articulated in:
“..try and read up on something if a question came to my head” (P2). Another woman who had a “reasonable understanding” also availed of websites saying : “I went on to sites looking up symptoms and I discovered there are different types of breast cancer” (P4). This was reiterated by another woman who said that she: “ read up the statistic on line and I was falling into all the statistics for what they [the medics] were telling me, it was” (P7). The role of the media in publicising the importance of early help seeking on discovery of cancer symptoms was also highlighted by a prompt help seeker who said: “I think just the knowledge, and I suppose to be fair that is something that has come across over the years, maybe on the television or the radio or whatever that once there is a symptom you really have to go as soon as possible .. they talk a lot about breast check, I think yes, it is quite out there (P6). Conversely, having had a personal history of a haematological cancer caused another woman, who delayed help seeking, to avoid sourcing information as evident in: “ it is not something that I tend to delve into if I was doing any studies or anything like that, it wouldn’t be based on that because I kind of think that I have had my fill and I don’t want anymore” (P3). Risk factors Family history was seen as a risk factor for developing breast cancer. Having had a sister and mother with breast cancer, meant that one prompt help seeker saw herself as being: “a high risk case, being in the family, on the female side” (P8). However, a woman who delayed for ten weeks perceived herself to be at less risk of getting breast cancer due to the absence of a family history as apparent in: “had there been a family history and I found the lump I would have been going straight down to the clinic. but when there was no family history or anything like that I was kind of thinking it was ok” (P3). In relation to having a family history of breast cancer, a sense of foreboding and almost expecting to find a breast symptom was expressed by two women who sought help promptly, as apparent in: “I don’t know why, but somehow it was in the back of my mind that it would probably happen to me too some day but I wasn’t expecting to find anything this soon” (P7). and:
“..I’ve seen chemotherapy, I’ve seen, my mother, I watched my father, he used to have to drink a kind of am radiation treatment. so.. I’ve heard of them” (P2).
“I’d be very lucky if I didn’t get some kind of symptom, I was kind of expecting it”(P8).
Knowledge gained through a neighbour’s experience impacted on the third woman who on being asked about whether she felt well informed about breast cancer related:
Curability/treatability Most women were of the view that breast cancer was curable as evident in a woman who sought help within one month saying:
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“.detection is probably the biggest issue..long term I think that the prognosis is good, if it is caught in time” (P4). Similarly, curability was strongly linked to early detection and treatment as apparent in one woman (who delayed for 10 weeks) commenting: “.a very high cure rate, obviously depending on how quick it is seen” (P3). While another woman (who delayed help seeking for 5 weeks) surmised: “.well, I suppose it all depends on how severe your symptoms are and what stage you are got at” (P9). However, this woman affirmed her belief in the curability of breast cancer saying: “.absolutely, I mean the treatment is getting better all the time” (P9). Conversely, a woman who delayed seeking help for six months expressed a fatalistic view of breast cancer saying: “I just have this view myself that once you get it that that is it” (P10).
Fatalism A sense of fatalism and foreboding and thinking “what if” in relation to the outcome of the symptom was also expressed by some women. A woman who sought help promptly described her thoughts following symptom discovery saying: “. You are thinking what should be if I should die. about death.. you start to think about death and who would look after my daughter and things like this” (P1). Similar thoughts were dwelt upon by another woman, who although was not overly worried and sought help promptly, related: “God, and then I am thinking, am I going to be that statistic, statistically speaking, maybe it could be me. and statistically you feel I have the same chance of it developing into something nasty ” (P6).
Optimism A positive attitude was believed to be helpful to the final outcome in the event of a breast cancer diagnosis as expressed by another woman (prompt help seeker) saying: “I think your mental attitude towards any illness has an awful lot to do with it people with the positive attitude and the outlook that it can be cured, it can be dealt with, I will survive this for the moment.they seem to do better” (P4). This woman concluded with the optimistic belief in the curability of breast cancer based on the experience of other women, commenting: “.when you see people making a full recovery, you know, it gives you hope”(P4).
Alternative therapies On questioning women about their beliefs in alternative therapies, women generally had strong beliefs in conventional medical treatments for breast cancer and considered alternative therapies as an adjunctive treatment as evident in: “I know that they help with body and mind and things like that and that is just as important for healing but the actual killing of the
cancer cells I would put down to conventional medicine as opposed to alternative medicine” (P3). and: “I think they can help, for women who have serious breast cancer where they have chemotherapy and things” (P8). Prayer Women’s beliefs around the use of prayer were also explored. A woman who sought help promptly expressed her belief in prayer, as she said: “ well, I think it helps you in a spiritual sense in making you more positive, I think I would be like that; it would give you a certain amount of strength” (P8). Another woman who delayed help seeking for 5 weeks, articulated her faith saying: “.I mean I would have a strong faith.I mean we clutch at straws.” (P9). This sense of believing in anything was reiterated by another woman (who delayed for six months) stating: “I suppose if it came down to it, you could believe in anything, you could convince yourself of anything as well but if it did come down to it and you were told to go out and eat grass you would do it” (P10). These findings will now be discussed in the context of the literature. Discussion The help seeking behaviour of ten women on self discovery of a breast symptom was explored using the “Help Seeking Behaviour & Influencing Factors” framework (Fig. 1). Findings demonstrated that out of a sample of ten women, six women sought help promptly (within one month) and four women delayed help seeking for one to three months (n ¼ 2) and over three months (n ¼ 2). This confirms findings from previous work cited, where 20e30% of women waited for one month or more before visiting an HCP on self discovery of a breast symptom. In the present study, the key facilitators for women’s HSB were a pragmatic outlook, fear, symptom disclosure to another person, confidence in the health services and overall knowledge about breast symptoms and their associated risks and the importance of early detection of breast cancer. The main barriers to women’s prompt help seeking were denial, fear, family and work commitments and lack of knowledge in relation to family history and risk and perceived incurability of breast cancer. These findings provide insight into women’s experience and confirm the relevance of the key categories within the framework for further study on women’s HSB. Psychological factors The study identified that denial impacted on the HSB of the four women who delayed help seeking for over one month or more. This finding mirrors previous work where denial of the symptom was articulated by women who delayed help seeking on discovery of a breast symptom (O’Mahony, 2001). In addition, varying degrees of fear were prevalent for women causing some to seek help promptly and others to delay. This corroborates with previous studies where fear and anxiety relating to the symptom caused both delayed help seeking (deNooijer et al., 2002a; deNooijer et al., 2002b; Facione and Giancarlo, 1998; Kennedy et al., 2000; Nosarti et al., 2000)
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and prompt help seeking (deNooijer et al., 2002a; deNooijer et al., 2002b; Facione et al., 1997; Facione and Giancarlo, 1998; Meechan et al., 2003; O’Mahony and Hegarty, 2009a). This emphasises the need for HCP’s to be attentive to the emotional needs of women during the symptom assessment period as some may continue to be in denial and others may be extremely worried and fearful of the outcome. Social factors The importance of social support was highlighted in that disclosure of symptoms to another person was seen to impact positively on HSB, as in previous studies (Bish et al., 2005; Burgess et al., 1998, 2008; deNooijer et al., 2002a; Macleod et al., 2009). In addition, competing social roles in terms of family and work commitments acted as barriers to help seeking, as previously emphasised (Burgess et al., 2001; Facione, 1993; Facione and Dodd, 1995; Facione et al., 1997, 2002; Facione and Giancarlo, 1998; Lauver et al., 1995; O’Mahony and Hegarty, 2009a). Thus, the need for HCP’s to be mindful of the fact that some women may have nobody with whom to discuss their symptom and its outcome. In addition, the need for employers and HCP’s to facilitate women with work and family commitments during the assessment and diagnostic period, is highlighted. Health seeking habits While the lack of reliable evidence on the benefits of BSE is recognised (NICE, 2002), women’s breast awareness was assessed by asking them about their BSE practices. Knowledge and performance of BSE varied amongst women in the current sample. Some women expressed confidence in the performance of BSE while others, two of whom delayed, were uncertain about the procedure. However, one woman’s symptom became apparent during breast feeding and the other woman presented with breast pain, thus their symptom discovery and subsequent HSB were unrelated to BSE as highlighted previously (Meechan et al., 2002). In addition, one of the above women alluded to the vague direction that she was given by her GP when asking about BSE. This indicates the need for more support and practical information relating to breast awareness and BSE recommendations for women. Health service system utilisation Health service system utilisation factors impacted positively on women’s HSB and overall, women were complimentary of the GP services. Women’s preferences for male or female GP varied with some preferring a female GP for gynaecological and breast problems as identified by Nosarti et al. (2000). While women recognised the knowledge and expertise of their GP, they expected to be referred to the symptomatic breast clinic for assessment of their breast symptom. This is in keeping with current National and International referral guidelines for GP’s that patients with symptoms suggestive of breast cancer be referred to a symptomatic breast clinic (HSE, 2009; NICE, 2002). While medical cover in terms of public or private did not appear to impact on women’s care, it is anticipated that optimum standards of service and care be provided for all women regardless of their medical insurance cover. Knowledge and beliefs Women’s knowledge and beliefs impacted on HSB as already highlighted in the literature. Most women were aware that a lump in the breast was significant which corroborates with previous studies highlighting that the nature of the symptom (breast lump) facilitates
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HSB (Bish et al., 2005; Burgess et al., 2001, 2008; deNooijer et al., 2002a; deNooijer et al., 2002b; Grunfeld et al., 2003; Meechan et al., 2002). In addition, women were cognisant that early detection of breast cancer was recommended, though this did not always impact positively on their HSB. Family history was believed to be the biggest risk factor for developing breast cancer. However, an over reliance on the perception that the absence of a family history means less risk of getting breast cancer was highlighted in the case of one woman who delayed for 10 weeks due to family commitments. Conversely, a study by Meechan et al. (2002), noted that the presence of a family history of breast cancer caused a tendency for women to delay, suggesting that overall, inaccurate perceptions relating to family history and risk could cause women to delay help seeking. Most women in the current study believed that breast cancer was curable if detected and treated at an early stage, thus, women perceived the symptom and its outcome (consequences) to be more temporary in nature. However, one woman who delayed help seeking for over three months believed that the breast symptom and its associated outcome were permanent and incurable. This fatalistic view was also found amongst some women of ethnic minority groups in previous studies within the Francisco Bay area of the United States (Facione et al., 1997, 2000, 2002; Facione and Giancarlo, 1998). Although, apart from this woman’s view, in the current study, fatalistic beliefs were expressed more in relation to having a family history of breast cancer and almost expecting to find a breast symptom and in thinking “what if” the symptom was diagnosed as breast cancer. In addition, some women were of the view that religious beliefs and having a positive attitude were helpful to the final outcome in the event of a breast cancer diagnosis. While religious beliefs were important to some women, contrary to previous work (Gullatte et al., 2010), a sole reliance in praying to God on finding a breast symptom was not apparent. Notably, however, one woman who articulated having a strong faith, delayed help seeking for 5 weeks. While it could be argued that perhaps her faith gave her the confidence to delay, it was clear that work commitments impacted more on this woman’s delay. Finally, in relation to treatability of breast cancer, while women recognised the value of alternative therapies as an adjunctive treatment, contrary to some women in previous studies (Facione and Giancarlo, 1998; Facione et al., 2000, 2002), a strong belief in the use of conventional medicine for breast cancer treatment, prevailed amongst women in the current study. Again, this could be due to the fact that a lot of women in the aforementioned studies were from ethnic minority groups, many of whom were sceptical of western medicine and believed more in the power of complementary/alternative therapies. Limitations Using a specific framework, this study focused on the help seeking behaviour of ten women on self discovery of a breast symptom. The study is limited due to the small sample size which detracts from the generalisability and transferability of the findings. However, the study provides some insights into the experience of ten women on finding a breast symptom and the factors that influenced their HSB, in an Irish context. In addition, the relevance of the “Help Seeking Behaviour & Influencing Factors” framework, is confirmed for use in a larger quantitative study, of women’s HSB and the associated influencing factors, on self discovery of a breast symptom. Conclusion and recommendations This study expands Health Care Professionals’ understanding of women’s HSB on self discovery of a breast symptom and
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illuminates the key variables linked to delayed help seeking ie: psychological and social factors, knowledge and beliefs. In addition, findings highlight that the variables within the “Help Seeking Behaviour & Influencing Factors” framework act both as facilitators and barriers to women’s HSB. Thus, the appropriateness of this framework for a larger quantitative study of women’s help seeking behaviour is confirmed. Findings highlight that despite continued emphasis on early help seeking for breast symptoms, delay is still prevalent amongst women. This reiterates the need for continued emphasis on the message of early detection of breast cancer. In addition, new ways of addressing barriers to prompt help seeking need to be addressed. To this end, nurses have a significant role to play in educating women in both clinical and community settings, about breast cancer and early detection practices. In addition, the need for all HCP’s to be sensitive to women’s emotional needs and social issues in terms of support, family and work commitments, at the time of symptom discovery and assessment, is highlighted. While the health service system was reviewed favourably by women in the study, the need to maintain this level of service for all women with breast symptoms is crucial. However, it is recognised that nurses and other HCP’s need to be supported in their roles if these recommendations are to be fully realised. While much progress has been made in the early detection and treatment of breast cancer, we can never afford to become complacent and assume that all women will respond promptly to self discovered breast cancer symptoms. Conflict of interests None declared.
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